Tiny steps bigger than they look

Under my doctors instructions I have dropped down from 7.5 mgs Prednisone down to 5 mgs on October 6th and my body just can’t seem to adjust. The pain has returned along with the swelling. I think I am going to give it a few more weeks even though it has already been three. I need to make this next step if I am to get better. I am earnestly praying for help and would deeply appreciate your prayers as well. My family needs me to be better… I need me to be better.

I went to another specialist who treats Sarcoidosis and she confirmed the treatment path I am on. The goal is to get off Prednisone and then slowly take me off the rest of the medicine. This gives me confidence that I am at least on the right path.

Wish me luck and keep me in your prayers.

Michael

Ahh…. Doing better!

I’m doing much better! The gout seems to bet getting more and more under control. It is only impacting one toe on my left foot and only minimally. I don’t feel any pain from the sarcoidosis that I can tell. =) I appear to be doing well with the kidney stones and the other infection I had seems to be gone. All in all, I think I am doing better!

During my last visit with the doctor he wanted me to drop the prednisone back down to 5 mgs from 7.5 mgs after three weeks. That will be this Tuesday. I think thing are going well. You never know what the future hold but I am hopeful!

Michael

Ps. Thanks everyone for the support and prayers!

Went to the Dr. and the Dr. said…

All this time I thought that I was going backwards on my Sarcoidosis and it turns out that the soreness may be Gout! I never thought that I would be happy to have Gout but I really am! Gout is much easier to kick then Sarcoidosis (I think). So what we think right now is that I am still making great progress on my Sarcoid, enough that we are going to reduce the Prednisone in about 3 weeks! Yea! =)

So the Gout is red spots that seem to move around in different places on my feet, get worse with exercise and is worse in one foot than the other. It is also down in my toes. It appears that it is the Gout that fells better when I put cold on it. I feel really bad because someone else who had Sarcoid (Bonnie) tried the cold water and it made it worse! I guess this explains it. It wasn’t Sarcoid that the cold water was helping.

I think I have gotten through the worst of the kidney stones. It passed and I am getting back on my feet. I’m still not feeling good, but I think that is from the other infections I am fighting and the antibiotic I am taking says that it can make you not feel well. I’m on this antibiotic for 21 days, so I hope that the feeling of unwell is mainly from the infection and not the medicine. Have to wait and see.

At first it appeared that there may be a link between the kidney stones and the gout because both can be caused by uric acid. I had my blood tested for uric acid but it came up normal. This may be due to my massive increase in drinking water. This can flush uric acid from your body and lower the reading. We won’t know for sure until they analyze the kidney stone and see what it is made out of. I should hear back on this in a few weeks.

See, you never what’s going to happen, and many times we don’t even know what is going on when we think we do. Just got to keep smiling, pushing and believing that Heavenly Father is watching over us.

Michael

When life gives you lemons… kill kidney stones!

Today I was able to pass the bringer of pain (kidney stone), or at least part of it. I am still so amazing that something so small can cause so much pain! Mind you it was hard as nails and sharp as glass, but you can’t help asking yourself “Really? That’s it?” I have been cut wide open before, I have had nails go right through my foot, had serious tooth pain, slammed funny bones, I even smashed my pinky almost completely flat and yet this tiny little thing was the cause of the most intense long lasting pain I have ever felt. Amazing!

I have heard that drinking the juice from freshly lemons will help break down a kidney stone or even turn it into a substance like soft jelly bears. I had a kidney stone before, all be it much less painful, and drinking the lemon juice seemed to work, so I tried it again this time. The doctors have me using a strainer to catch the stone so that they can analyze it and hopefully find out what is causing them. When I caught a bunch of soft gummy stuff came with it and surrounded it in a coating. It appears that the lemon juice really works! I have decided that when I go out from now on I will be drinking lemon aid. Let’s see if this helps in the future.

By the way… how I was told to take the lemon juice was to squeeze ten lemons and then drink the juice straight. It’s a tough thing to do, but if you are good at gulping water down you can do it all in one shot. You will have a ton of funny and intense after tastes go through your mouth, but the results are really worth it. (At least in my opinion) Now I’m not a doctor and I don’t know how this will work for everyone, but it worked well for me. Oh… and if you do it, don’t forget to brush your teeth right away. Don’t want that acid on your teeth.

On the up side I have been having trouble getting my Sarcoidosis under control. Ever since I went down on my medications this last time I have not been able to get the redness and swelling to go away. I have just been fighting levels of inflammation. Well, since all of the problems with the kidney stone happened my Sarcoidosis has really shaped up and is under control! The swelling is gone! I don’t feel any pain, but that is probably because of the pain killers for the kidney stones. I don’t know if the additional medicine the doctors gave me for the stones has somehow helped the Sarcoidosis or if it is just that I have been on my back for three days. Regardless I have made some good progress.

I still haven’t seen my Sarcoidosis doctor yet. I had to reschedule with everything that has been happening. Hopefully I can get in and see him some time this week. For now it is just working at getting life back to normal. One great thing that came from all of this is that Sarcoidosis pain is NOTHING compared to the kidney stone pain! Somehow that makes the normal pain not hurt so much. ;)

Michael

Ps. Just for the record… her are the additional medications I am taking for a short while:

Flomax .4 MG 1 time per day (To help speed thing up with passing the stones

Percocet 7.5 MG as needed (For pain)

Nitrofurantn 100MG 1 time per day (Antibiotics. This is a long 21 day course for an infection I have.)

The pain was excruciating!

I just went through the worst 2 1/2 hours of my life! Nonstop brutal, gut wrenching, scream out loud and writhe on the ground pain that felt like my intestines had exploded and someone was slamming me in the… privets… with a sledge hammer. The emergency room gave me morphine, fentanyl (100 times more potent than morphine) and dilaudid in doses so high that they couldn’t give me any more without intibate me and it still didn’t take the pain away. I literally scream in agony almost the entire time. I know kidney stones are very painful, and I even had them before, but that was childes play compared to this. I don’t know what was different but the pain was excruciating!

The pain is under control now and I am doped up on drugs waiting for it to pass the rest of the way. The Doctors said that the rest of the way should be easier now. I sure hope so. For now it’s drink tons of water, keep the drugs in me and hope this NEVER happens again!

Michael

Imuran answers and OUCH!

I saw my pulmonologist a few days ago. I went to him to do a follow-up on my lungs and to see if he could give me more information on Imuran. I really like this doctor and would like to have him as my primary doctor, but he isn’t a rheumatologist. (Darn!) He is very willing to talk things through and does not feel that asking him questions is doubting his abilities. He always takes the time to make sure that all of my questions are answered to my satisfactions. I have to tell you, this builds way more trust for me than someone who says “If you question my decision maybe you should get a second opinion”.

He told me that although the Imuran sounds on paper like it is much worse than Prednisone people tend to tolerate the Imuran much better than the Prednisone. In his experience he has seen many more health problems from being on Prednisone than Imuran and strongly recommends using the Imuran to get off of the Prednisone as quickly as you can. I don’t know how this will all play out, but this has given me a lot more confidence in taking the Imuran.

I have been hurting a lot lately. The cold water has helped but it is only treating the symptoms, it isn’t doing anything for “fixing” the problem. The pain in my feet has migrated and moved around my feet. Sarcoidosis is strange that way. It has moved down into the area just behind my toes. I had an appointment with the rheumatologist on Friday to talk this over and see what could be done, but due to a mix-up the doctor took Friday off and I wasn’t notified. (Very frustrating) So I rescheduled for Tuesday, I’ll let you know how it goes.

Last night I think I missed taking 2.5 mgs of Prednisone of my daily 7.5 mgs. I woke up this morning hurting worse than I can ever remember hurting with Sarcoidosis. I have been considering going off of all medications and just dealing with the pain of Sarcoidosis, but days like this remind me how grateful I am for medications even if they do have side effects. I ended up having to take a Lortab that I had been prescribed to get through the pain until I was able to catch-up with my medications. I am also dealing with some UT problems that the doctors haven’t figured out yet. I think that this may be making the situation worse.

So… Stay on Imuran, get off Prednisone as quickly as I can, figure out the UT issues, meet with the doctor and see if we can get the rheumatoid issues under control. That’s the plan.

Michael

Cold Feet... Good Stuff!

The cold water really appears to be helping! Doing much better. Hope it keep going good, I’ll let you know.

Rocky Road & New Hope

As you know from my last post I have been having a bumpy road. My ankles and really been hurting and several bones on my feet have swollen up and I haven’t been able to get them to settle down. Even with the increased medicine I haven’t been able to get back to where I was a few months ago. The good news is that I have been able to hold my ground and haven’t gotten any worse. I think it may be for several reasons.

1. Perhaps I waited too long to report that the lower dosage wasn’t working and it allowed the illness to flare up a bit.
2. I have been too active this summer with scout trips, family vacations, etc.
3. Maybe both of the above.

I don’t know yet and I’ll have to wait and see.

I did find something that seems to help though. I began putting my feet in cold water in the evening before I go to bed and in the morning after I take my shower and it REALLY seems to help. So much so that today I did very well. Even though I still have red spots on my feet where I have been having problems they don’t hurt to touch like they have in the past! It is too early to tell if the reduction in pain and tenderness is due to the cold water or not. It does make my feet feel better though, and at this stage I would strongly recommend it. I basically run them under cold water until it doesn’t feel cold any more. (About 60 seconds) I’ll let you know how this pans out as I keep doing it. So far it looks promising.

I am looking forward to seeing the doctor again to talk this over, but I don’t want to increase the Imuran any higher. I think that this is exactly what the doctor is going to want to do, and so far he hasn’t been one to “discuss options”. When I tried to ask about this in the past he has simply said “Perhaps you should get another opinion”. If he prescribes more Imuran I probably will. Whatever the problems are that come with Sarcoidosis, cancer is worse! Imuran increases your risk of getting skin cancer among other problems, even in low sunlight. I may be okay with the risks if someone could explain to me what they are, but so far no one has been able to help me quantify how much of a risk this is. I find this very frustrating. For now I am keeping the 75+ SPF sun block on and staying out of the sun. My legs are so white I think that they could give other people sunburns if I were to walk around in shorts! Ha ha!

So for now it is saying the course and holding ground. I think I am starting to turn the corner with the cold water, or perhaps it just takes a while for the higher doses of Imuran to kick in. Either way I am hopeful.

Michael

Bump in the road

The adjust time I talked about in the last post just never came. I started noticing things going in reverse though I really didn’t want to accept it. I probably let the worsening symptoms going longer than I should have before I talked to the doctor but I was really hoping that my body would adjust. In the end it did, just in the wrong direction.

I finally gave in and called the doctor. He told me to increase the Imuran (Azathioprine) by taking two tablets in the morning and then one in the evening. This increases the dose to xxx per day. He also had me going back up 2.5 mgs on the Prednisone so I am back to 7.5 mgs. With the new doses I don’t seem to be getting worse, and the road back to getting where I was seems to be a slow one. I really have a lot of pain in some of the bones of my feet, especially the left one. The strange thing is that it isn’t in the joints like it was in the past, it is in the actual bone. You can see bright red where it hurts, and sometimes it REALLY hurts.

When the medicine messes with me, or when I get frustrated about my weight at times, I often find myself thinking about just going off the drugs and dealing with the pain. Sometimes I wonder if the side effects of the Prednisone aren’t worse than just dealing with the Sarcoid. Then… when the Sarcoidosis flares up and the debilitating pain kicks in to the point of not even being able to walk across the house… that’s when I am reminded of what the drugs are actually doing for me. All that being said though, if Imuran give me cancer… that would not be worth it!

My sister’s test results came back and it turns out that she does have Sarcoid after all! Crazy stuff. That makes three members of my family with Sarcoidosis. They have her on high levels of prednisone and she is going through the ringer. She calls me a lot and it is good to help here through the first phases of this. The high doses of Prednisone really mess with you mentally and I think it is really good for her to be able to talk with someone who has already gone through it. I can commiserate with her and help assure her that what is happening to her is normal and not to worry. That stuff can really make you wired up and mess with your thinking. She is doing well for now and I hope all goes as good for her as I think it has for me.

Some good news though… I have lost about 15 pounds unexpectedly. I’m not sure why, I haven’t eaten any better. Perhaps it is the activities of summer? Don’t know but I’m not complaining. I’m loving that!

Low and stable

I went to the doctor on Monday and let him know that I was doing well, but having a little harder time adjusting to the lower prednisone than I usually do. He was very pleased that I am now down to 5 mgs of Prednisone and said that 5 mgs is a dosage that had no know lasting (bad) affects. He said that the real danger now was to just cut off the medicine because the Sarcoid could flair right back up. He continued to explain that the longer you go without the Sarcoidosis symptoms, even while medicated, the less likely you are to have it return. He said that if I just dropped the medicine right now I would have roughly a 50% chance of it coming back. He believes that by being on the medicine for an extended period of time will help prevent it from coming back in the long run, and this is what I really want. (BTW My next doctor appointment is in three months.)

I have to admit … I am a little disappointed. I was really hoping to be totally off the drugs by later this summer. I am committed to kicking this thing permanently so if I need to continue on these medications for up to a year (from what the doc said) then this is what I’ll do. My doctor said that when I am feeling really good with no symptoms for a long period of time then he will start pilling of the remaining medicine one step at a time.

The doctor said that at this stage the Azathioprine was doing most of the work of keeping the Sarcoid under control. I am still concerned about the Azathioprine and the cancer risk. We are also considering having one more child and Azathioprine has strong warnings about pregnancy, even if it is the man taking the drug. If I am going to be on this for as long as a year I’m going to have to have more answers on this. My doctor isn’t the type to answer questions that he feels is questioning his judgment. This is one of those questions, so I am going to have to look elsewhere.

My sister had her biopsy, but since they are in a small town they have to send it away for testing. I’ll let you know what they find, but I am guessing that it is Sarcoid. That beats cancer which is the other options!

So for now I figure it’s time to start exercising better and eating better. It has been kind of a rollercoaster for me as far as this goes. I am feeling stronger now and the medicine is low enough that I’m not feeling the prednisone rage. Time to rock and roll! (Slowly though, going to take it slow for now.)

Hurts so good & Sister Blues

I have found that going lower and lower on the prednisone allows my body to feel the normal aches and pains associated with being overweight and being out of shape. Boy, what a feeling! Well the good news is that this is a good part of the healing process. It should feel bad to be overweight and out of shape. The drugs have masked that in the past. (At least that is what I believe) I had to reschedule my DR. appointment until Monday, so I’ll confirm with him that this is why I am felling this way. I am looking forward to getting back in shape. =)

It looks like my sister may have Sarcoidosis. (Dang DNA!) She had a bout of what they thought was Bells Palsy where her face slumped, her eye drooped and her mouth hung down. They put her on high doses of Prednisone which has given her back facial control. It may be neural Sarcoid and the swelling around her facial never appears to be what caused the Bells Palsy like symptoms. They have her scheduled for a biopsy on Monday to see if it truly is Sarcoid. Frankly I hope it is because the alternative is Lymphoma and we really don’t want that. My guess is that this is Sarcoid. I guess we will have to wait until Monday to find out.

Oops, not 10 mgs... I'm down to 5 mgs Prednisone

Oops... that was a mistype. I am at 5 mgs of Prednisone now. I take 2.5 twice a day. I see the doctor on Monday, so I'll give you an updated then.

Michael

Down to 10 mgs Prednisone!

I just dropped down to 10 mgs prednisone! How great is that! I have had the usual rough go at adjusting but I seem to be coming out of it. I am really getting excited about this and I think I can see the end in sight! Here is hoping.

I have had an extremely active spring with a ton of camping trips; some with the scouts, some with the family and a few ATV trips with my brothers. On the latest one we ATV’ed in, camped overnight and then ATV’ed all day long. It was a bit much for me and I was fairly wiped out today, but not as bad as it could have been. I had a hard time sleeping on the hard ground without a mat but I think that was mostly because I am so overweight. (Stupid Prednisone) =) All in all I have done well.

I am looking forward to loosing this weight and getting healthy again. I’ve got to resist the urge to do too much too quickly. The phrase I have been living by for the past while is “One step at a time” and it has really worked well for me, especially when I feel overwhelmed.

So far, so good!

Michael

More Strength!

I’ve now adjusted to the new levels of Prednisone (7.5 mgs per day) and I am feeling a lot stronger. In fact, I just got done with a 5 day ATVing trip and I did really well. Today I replaced an alternator, did some weeding, shopped for a scout camp for 14 people (for an 1 ½ hours), etc and did fairly well. I did feel drained at points in the day but nothing like I have been.



All in all I really think my strength is returning a little at a time. It’s kind of like that part in the new Superman movie when he flies up into the sunlight and it gives him strength to recover… Well… I’m not Superman, and it isn’t that fast, but I do feel like I am getting stronger. What a great thing!




Michael

Prednisone Going Down!

Down, Down, Down! The Prednisone dose is going down! =) I am now at 7.5 mg! That means 2.5 mg for breakfast, lunch and dinner! The doctor was very happy with how things are going and said that I should reduce the prednisone to 7.5 mg for three weeks and then the week before I see him again he wants me to drop it to 5.0 mg. I am really excited to see progress! I do have to admit that I have been feeling drained and worn out, but that is to be expected I guess. As the prednisone drops my body has to pick up the slack and adjust.

I asked the doctor what happens when I’m off the Prednisone and he told me that we would then reduce the Imuran, Plaquinil, Colchicine and Fosomax until I am off of everything. Than…. Hopefully…. I will be in remission! Here is hoping!

I still don’t know about the Imuran and cancer risk. Everywhere I look tells me that it increases my risks of getting skin cancer but nothing tells me how much it increases my risk. For now I’m just keeping the SPF 70 sunscreen on and hope for the best.

The last little bit (between now and my last post) I got a sinus infection but antibiotics did a great job of kicking it out of my system. One other little bump in the road was a day when I forgot to take my afternoon prednisone. I wasn’t use to taking it three times a day and was just adjusting to the schedule. I was hurting by the time I got home and then when I took two 2.5 mg pills (one to make up for lunch) it flipped me out. I got super wired just like I did when I was on the higher doses, but I wasn’t mentally prepared for it. I’m afraid that my poor tender wife took the brunt of it. (being grumpy and the like) She is such a sweetheart she just smiled and supported me. I really am a luck man, and I sure do love her. (Sorry Blue Eyes!)

This past few weeks have been really busy by the way. Camping with the family, business trip the California, short hike with the scouts, etc, etc. It’s been busy! I am hoping that by the end of next week I will be feeling better and have more energy. For now, lots of sleep and just keep on trucking.

Hang in there everyone! Whatever you’re facing… there is always hope!

Michael

Worries and Sunscreen

The medicine has really been working and I have been feeling good. I have a doctor’s appointment coming up on Tuesday with my specialist and I am hoping that I will be able to reduce the Prednisone again. I don’t know if this thinking is right or not, but in my mind I am hoping that when I am off the Prednisone that means that I have kicked my Sarcoidosis into remission. I don’t know that this is strictly true, but I am hopeful.

I haven’t been able to find out more info on the Imuran despite all of my efforts. I have talked to multiple pharmacists and doctors and all any of them can tell me is that my risk of skin cancer is increased on the medicine. None of them can tell me by how much though and this is what I really want to know. Is it 2 in a million instead of 1 in a million or do I have a 1 in 4 chance on this medicine? I absolutely don’t want to trade Sarcoidosis for Skin Cancer, but no one can tell me how likely this is. For now I am just keeping the sunscreen on and staying out of the sun as much as possible. This is going to be a challenge though because I am a Scout Master for the Boy Scouts and summer is here.

Imuran, Cancer & Messing with DNA

Well I am feeling a lot better. The pain in my joints has all but gone away, although I am not sure why. At first I thought that it was the Imuran, but I’ve been doing a little reading up on the drug and it should take a number of weeks before the benefits are felt. I am also concerned because it turns out that Imuran increases your risk of skin and other cancers, something I really don’t want! Sarcoid is bad, but cancer is MUCH WORSE!

So the question is, if the Imuran isn’t really providing any benefit yet, and if I am doing better this week than last week do I really need to be on the Imuran? (Especially with the increased risks of cancer)

I am also concerned that Imuran gets down into your DNA. I haven’t been able to find anything on how permanent this is. If I stop taking Imuran does my increased risk for cancer go away? I’ll have to find out more information. I don’t want to trade Sarcoid for cancer!

Have to figure this one out.

Michael

The broken glass is back!

Doah! I’m feeling the pain in my ankles and knees again. The side effects from the Methotrexate have been so bad that I have finally come off it, and today was an AWESOME day! Normally the Methotrexate just wrecks me for two days and feel terrible, but apparently it did a lot in helping the pain from the Sarcoidosis. I would have normally taken the Methotrexate on Saturday night, but this is the first week I haven’t and I am really feeling the Sarcoid pain. It is such a mixed bag. It’s like you get to pick your pain… Isn’t there a “No Pain” option? Doah!

The hope I am holding on to is that I am in an in-between spot with the medicines. I have been lowing the dose for Methotrexate for a while to where it was barely helping and now I am off of it. My new medicine hasn’t ramped up yet and needs some time to take effect. I am really hoping that the Imuran will give me the benefit of the Methotrexate without the side effects.

I am starting to see two possible outcomes here. The one I am hoping for is that the medication will put the Sarcoid into remission and I will be able to get back to “normal” life. The second is that I will need to choose between the effects of Sarcoid and the side effects of these drugs. If it ends up being the second I don’t know which options I’ll pick. Whether I choose medicine or just to deal with the illness I will be facing long term negative impacts on my health. I’m not sure which I will choose, but I am leaning to just dealing with Sarcoid and taking IB. The prednisone not only makes me fat, but messes with my mind and the Methotrexate knocks me down like crazy. I think at this point I would almost rather deal with the pain. Hard to say… I hope I don’t have to make the decision in the end.

For now I’m just going to wait and see if the Imuran helps and what side effects it ends up having. I have to give it a chance to start kicking in and build up in my body.

Guess we will see. =)

Michael

Ps. I hope that this pain is mainly because of the amount of work I did yesterday.

You get some, You lose some

I saw my doctor again and filled him in on all of the drama with the kidney stones and the dizziness. He found it very difficult to believe that the calcium would have caused these problems this quickly. He told me to discontinue taking the calcium supplements just to be safe but he still wants me to take the Fosomax.

We discussed the Methotrexate again. He asked how it was impacting me and I told him that I missed Easter with the kids because I was down in bed. He was really surprised and told me that I was on a child’s dose at this point. He told me that he didn’t think that this low of a dose would really provide any help and if it was causing me so many problems to discontinue it. (OH YAH!) I can’t tell you how happy this makes me! I am so excited to have my weekends back! Many people take Methotrexate without much of a side effect, but for me it has been hideous! I am so excited to be off this stuff and am looking forward to actually being able to feel good at church again! I’m really looking forward to tomorrow.

I have been feeling pain in my ankles and knees just as it comes time to take my medications again, so he didn’t feel like we could lower the Prednisone. I’m really okay with that because the Prednisone is at a low enough dose that it doesn’t affect me as badly as it has in the past. Although I do hope by next month’s appointment I’ll be able to reduce it another 2.5 mg’s.

We think that the reason I am feeling the pain is because the Methotrexate levels are getting low enough in my body that it isn’t really providing the benefit it did in the past. Instead he has prescribed a new medication called Imuran, or Azathioprine (50 mg). It is an immune suppressant that is used for organ transplants, inflammatory bowel disease, ulcerative colitis, multiple sclerosis, autoimmune hepatitis and autoimmune disease such as Sarcoidosis. Here is a link with more information:

http://en.wikipedia.org/wiki/Azathioprine

It looks like the side effects aren’t too bad, or at least better than Methotrexate as long as you are not on it for a prolonged period of time. I have taken it for a few days now and I really haven’t noticed anything bad. I am still in the ramp up time though. It is strange. You take 1 tablet per day for a week and then you start taking it two times a day. I’ll let you know in a week or so if I start seeing any bad side effects.

All of the kidney pain is done! Yeah!! I don’t really believe in home remedies, but I found one for kidney stones that even doctors were recommending. (This works primarily for kidney stones made of calcium.) You take 10 lemons and squeeze out all the juice (about 2 cups) and drink it all down at once! Yup straight, no sugar. It wasn’t nearly as bad as I thought it was going to be and it didn’t actually taste half bad. You just have about 15 different after tastes that hit you like waves. Anyway, after that you drink normal lemonade about every hour. The acid turns the stones in to a substance similar to gummy bears. Soft and squishy is WAY better than sharp and pointy. It just comes right out and doesn’t hurt! It was awesome! Check it out on Youtube, they have a bunch of videos on it. Glad to be done with it and I’m going to remember the lemon juice for the future.

Lately I have really been feeling weak. Doing the smallest things knock the wind right out of me. This morning after I slept in I was sitting in the shower feeling bad for myself. I was really sick of watching my house turn into disrepair around me because I don’t have the energy to tackle it. I finally reached a point where I couldn’t take it anymore, so I said a short prayer asking for strength, then got out and charged headlong into the day’s chores. We raked up a ½ acre yard, burned all of the debris, worked on my car that broke down, fixed some parts on my truck, hauled a bunch of junk to the dump, then took the family out to Pizza! And you know what… I really don’t feel that bad. In fact I am feeling strong! It was an amazing day. Now don’t get me wrong, I am nowhere near back to full strength but I really did a lot today and it didn’t knock me down! I hope I can keep this going. I’ll let you know.

Here is hoping.

=)

Dizziness and Calcium?

Well, the old phrase “This too shall pass” is true! Ha Ha! I think I am past the worst of the kidney stones, however a strange thing happened to me. Today I started getting really dizzy all of a sudden and it wouldn’t go away. I have never felt this way before except when taking Lortab or spinning around in circles at an amusement park. I actually felt like the room was spinning around me to the point that my eyes almost started twitching. At first I thought it was because I was low on food, but the problem continued even after a hardy lunch. Strange!

Luckily I was able to get an appointment with my doctor today and you won’t believe what it turned out to be. Yup you guessed it… It is Benign Paroxysmal Positional Vertigo (BPPV)! Or… perhaps you didn’t guess it, but you won’t believe what it is. It’s rocks in your head! Seriously! Here is a picture. The bottom line is that little rock like deposits (otoconia) form in the part of your inner ear that governs balance and mess with your senses. And guess what these little rocks are made of. “…small crystals of calcium carbonate…”

So just after I began taking the Calcium supplements and the Fosomax I got kidney stones (made of calcium) and BPPV (crystals made of calcium). My doctor wanted me on the calcium to prevent the Prednisone from robbing the calcium from my bones, but I can’t continue with these problems. I think I am done with the calcium supplements unless my doctor can help me not have these side effects.

Turns out that BPPV is only temporary and should go away quickly. Strange, strange, strange!

Kidney Stones!

Ah… CRAP! Yesterday I began having to go to the bathroom (#1) constantly and it was hurting. Today it got worse and I started getting pain in my back on the right side just under my rib cage. It was too late to talk to my regular doctor so I went over to the insta-care. Turns out I have blood in my urine. I am currently on antibiotics for a sinus infection so they don’t believe that it is a Urinary Track Infection (UTI). With the pain in my back they believe it is kidney stones!

I have had kidney stones before and they hurt like crazy. It felt like someone slipped a knife between my ribs and then just left it there. They REALLY hurt! I am not looking forward to this.

The insta-care doctor was going to give me some anti-inflammatory medicine but my primary doctor warned me not to take anti-inflammatory medicines while on all of these other drugs. I mentioned this to him so he prescribed Hydrocodone/APPA 7.5/500 mgs (Lortab) for the pain and told me to drink a ton of water. So it is going to be interesting for the next little bit. (Really not looking forward to this.)

So now I have to ask myself why I got this. As I mentioned earlier I wasn’t taking the Calcium supplements until about 2 weeks ago. I’m guessing that it was the extra Calcium that caused this, and the insta-care doctor seemed to agree. I need to follow-up with my primary Sarcoidosis doctor about this tomorrow. I think I might be to blame however. I didn’t take the Fosamax (Alendronate Sodium) until Tuesday because you have to take it without food, sitting up for 45 minutes and I just hadn’t had time until then. So I was taking the Calcium supplements for about a week and a half before I took the Fosamax. The doctor told me that Fosamax actually lowers the levels of Calcium in your blood because it puts it back into your bones. (This is to counteract the Prednisone) I guess it is possible that since I wasn’t on the Fosamax the Calcium levels got high enough to cause kidney stones. So if I were on the Fosamax earlier perhaps this wouldn’t have happened. I’ll have to follow up with my Sarcoid doctor to see what he says.

For now… Drink tons of liquids… Grin and bear it! Doha!

Michael

Muscle Weakness

Now that I am feeling a bit better and since it is getting much warmer outside I have started trying to do more. Two days ago I did a little work in the yard, worked on the car and did some tree trimming. It exhausted me and I felt the effects of it until today. I also have some sort of a head cold so I am hoping that most of what I am feeling is because of that. I have a doctor’s appointment this morning to see about antibiotics, so hopefully I can get this cleared up quickly.

I have been a very physically strong person my whole life and really come to expect being this way. At times I have been very fit, and others I have been over weight but I have always been strong. I have noticed a clear difference in my muscle strength lately and it constantly surprises me. Things that I use to do with ease I find that I just don’t have the strength for currently, and it is a bit disheartening. I believe that this is a side effect from the Prednisone and should go away as I continue lowering the dosage and do weight lifting.

Something to look forward to.

I had a visit with my doctor again and it went really well. We are continuing to lower the Prednisone and I am now at 10 mg per day down from 12.5 mg. (5 mg at breakfast and 5 mg at dinner) I figure at this rate I should be completely off Prednisone in 5 months. Here is hoping! =)

In talking through my medicine the Doctor was very surprised and almost upset to find out that I haven’t been on Fosamax and Calcium Citrate with Vitamin D. Prednisone reduces your bone density and apparently Fosamax in conjunction with Calcium and Vitamin D help counter that. He gave me a prescriptions for 35 mg of Fosamax which I take once per week, and the 600 mg of the Calcium Citrate with D. I’ll start taking this shortly. (I am really getting a fist full of pills!)

I have noticed some pain in ball of my foot just behind my big toe when I walk any prolonged distances. We’ll have to see if this is related to the bone density. If so hopefully the Fosamax will help.

Last night I took my Prednisone but forgot to take the Plaquenil. I noticed a big difference. I had more pain than usual and once I took the Plaquenil it subsided. The Plaquenil apparently makes more of a significant improvement that I thought. Actually of all the medicine this one is the easiest to take and has no side effects that I can tell.

All in all I am really excited. Again I feel like I am making progress! =)

Far Far Away

I went on a long trip to Moab Utah with my son, my brother and nephew. The sights were amazing and we had a great time! I really needed this, a chance to get way out of town, out of life and out of all the anti-normality that my life is right now. We truly had a great time. If you ever get a chance take a trip to Moab. It is in the middle of NOWHERE but then that is really the point! It is amazing!

That being said it was a bit much for me physically. The medicines really helped, but I could really tell the difference ATVing now from in times past. I am looking forward to getting off all of this medicine and getting back to my life as normal. I am really looking forward to working out again and gaining my strength back. I think that is one of the big things I have noticed is the lack of strength. I have always been very strong and I have really noticed a difference there.

This week I see the doc again. I am doing much better with the pain. My body is adjusting very well to the lower dose of Prednisone. I am hoping to lower the dose even more this week. I’ll let you know what the doctor says.

Two more pictures from Moab… because in my mind…






I’m still there!

Felling like I am getting there

Well, I must say… all in all I feel like I am making progress! I’ve had bumps and upsets but I think the overall progress is going really well. The key here is that I am continually reducing the Prednisone while holding off the symptoms of the Sarcoid! Every time I go down a level on the Prednisone I feel the symptoms come back for a short while, but then my body adjusts and it gets back under control. My hope (and my doctor’s) is that I will eventually get off the Prednisone and I won’t have the symptoms anymore! I really feel like I am on the right track, despite some of the crazy side effects I’ve been having.

I have had a number of people tell me that they are praying for me. All I can say is “Thank you!” You don’t know how much that truly helps. Being a father of six extremely active kids, working to provide for the family and support my wife who is going through a number of serious medical challenges herself takes a lot of focus and effort. I’ll tell you though it is worth it! Some days, especially when I need it most, I swear I can feel a little extra strength and I often wonder if someone is praying for me. =) All I know is that I really feel like God is there for me, especially in the darkest of times.

Here is to the start of a new week! Wish me luck!

Michael

Dizzy, a Spot in the Eye & Yet...

I have always been one who has been use to being very strong. I never throw up, I have always had a lot of strength and I have never fainted. For the last couple of days I have felt very weak and twice now I have gotten very light headed and almost fell down. Tonight I was feeling so light headed that I pulled over and had my (amazingly beautiful) wife drive us home… just to be safe. I’m not sure what is causing this, (perhaps a cold?) but I hope to resolve it shortly. It could be related to lowering the medicine… I’ll have to keep an eye on it.

Speaking of eyes…. I noticed a little while back a spot in my vision. I was really worried about it and had it checked out by and eye doctor. They said not to worry but to watch it and make sure it doesn’t get bigger. The strange thing is that it comes and goes. Some times I don’t notice it at all and other times it comes back. I’m wondering if anyone else has experienced this either because of Sarcoidosis or perhaps Methotrexate, or Prednisone. Anyone else experiencing this?

On the upside the pain has gone down a bit, even though I did a lot of walking during the day. This is GREAT news! I was taking Aleve in the mornings because of some Bursides that was bugging me, but decided to not take it today. I was thinking that the Aleve was actually masking some of the pain I was feeling and was worried that I was really going to feel it today. Boy wasn’t I pleasantly surprised because my feet and legs felt much better today. I am hoping that this is an indication of my body adjusting to the lower Prednisone and that I can keep on my path of reducing the dose while still keeping the Sarcoid under control. =)

The pills for the Methotrexate have really been better than the shots, despite the fact that the pills are supposed to have worse side effects. I’m really doing a lot better on Sunday’s now after taking the medicine. The drawback is that the dosage is cut way down. With that and now with the lower dose of Prednisone (12 mg) I am feeling some pain in my ankles at different times of day.

The Prednisone comes in 2.5 mg doses so I take 1 in the morning, then 2 at lunch and 2 and dinner. I can really tell a difference between the time I take 1 and when I take 2. I have tried shifting the schedule and taking 1 in the morning seems to work out the best. You would think that I would hurt more in the morning more because it has been so long since I took my last dose… (6 PM to 6 AM) but it is better this way then taking the one lower dose during lunch or at dinner. My guess is that it has more to do with how much I am on my feet then how long it is between doses. I think I might split up the doses, taking one 2.5 mg pill every 3 hours starting at 8:00 AM. That would spread the dosages out much more evenly through the day, but it would be much more of a hassle. Also I am worried about taking it so late at night as it makes it hard to sleep. I’ll have to think about that more.

The biopsy is still bothering me. The swelling hasn’t fully gone away yet and it sometimes hurts when I breath deeply or and laying down. I’m not sure I would have done it knowing what I know now. Doctors really tend to play things down. I wonder if they would be so ready to do surgery if it were going to be done on them.

Over all I am a little concerned about the pain I am having. The current medicine is just barely keeping it under control, but that is only if I stay off of my feet. I am hoping that my body will adjust and it won’t be so bad, but if not I don’t think I will be able to lower the Prednisone in a month when I am scheduled too. For now I’ll have to wait and see, I’m just glad I’ve dropped down so far on the Prednisone. =)

Methotrexate Blues

Oh man! Last weekend was murder with the Methotrexate. It was almost pure torture.Over the past month I have gotten sicker and sicker every time I take the stuff. When it came time to take it last weekend I almost threw up just thinking about it. It make me feel extreme nausea along with flu like symptoms that you feel everywhere in your body, even in places like your earlobes! It is hard to explain, but the only thing I can relate it to is the feeling of being poisoned! It devastates me for over 24 hours and then I feel the residual effects for days! It got to the point that I was done! I just wasn’t going to take it anymore!

Luckily I had a doctor appointment already setup this week. I talked to him in depth about how I was feeling and he was really surprised. He said that about 10% of people have this kind of reaction, and in all the people he has treated I was the only one who has had this strong of reaction. I asked if there was anti nausea medicine I could take and he said that he never treats side effects of one drug with another. I thought that this sounded like sound advice. He suggested that we try switching to the pills and cutting the dose down. I was hesitant to ever try it again, but after he assured me that we would simply stop if I had the same reaction I agreed.

Well last night I took the pills and have done considerably better. I still feel some of the effects, but not nearly as bad and the nausea is greatly diminished and I have been able to manage it. The strange thing is that I have a close friend who was taking the pills and had a ton of side effects, so she switched to the shot and has done much better. Her experience is almost exactly opposite of mine. This just goes to show that everyone is different and what may work for one may not work the same for another.

My doctor also reduced my Prednisone again. I am now down to 12.5 mg per day from 15 mg. The side effect from the Prednisone have reduced to the point that I can really manage them and I feel like I have full control again, although I do notice I get the shakes really bad if I take it late. I told my doctor that I wouldn’t mind maintaining the Prednisone at this level for a while (15 mg) but he told me that at this level the Prednisone was still doing bad things to my body, such as robbing calcium from my bones among other things. He said the he wouldn’t feel comfortable with doing that until we got down to around 5 mg. The goal thought is to get off Prednisone all together. I am noticing pain in my joints just before I take my next dose, but not too bad. I have done this a little every time I have reduced my levels of Prednisone while my body adjusted, although this time it is a little worse. I am hoping that my body will adjust quickly and that I won’t go backwards.

The doctor also put me on one additional medication. It is called Colchicine .6 mg. (Don’t worry, I can’t pronounce it either.) This is typically used for gout, but can help Sarcoidosis. I have also felt some sore pain in my hips and knees which he diagnosed as bursitis. This medicine should help this as well as taking Aleve.

Man, with all of these pills I feel like my grandpa! So I am taking Methotrexate, Prednisone, Placquinel, Colchicine, Folic Acid and Aleve. Nothing like a fist full of pills! Ha!

I gained a little more weight again, so that now I am back to what I was before I started losing weight last year. I am really frustrated with that! I talked to the doctor about what exercise I can do and he was really concerned about any weight bearing exercise, even something like walking. Given my illness and what some of the medicine is doing to my bones he suggested that I either do swimming or bicycling. I don’t have a pool or a exercise bike so I’ll have to see what I can do. I know my wife would love it if we got a pool! =) he he, but I don’t think that is in the budget.

The incision from my biopsy has healed up nicely, but it has some swelling around it still. This has begun to be bothersome in the middle of the night and I am finding that it makes it hard to breath at times. If it continues to be a problem or gets worse I will have it looked at again.

All in all it has been a rough go, but I am still very pleased that I am still going down on the Prednisone. I feel that despite the rocks I am still making progress.

The Shakes & Ice Cream

Okay, between the biopsy, the methotrexate and lowering the prednisone all at the same time I really am getting the case of the shakes! I really don’t feel well, but I am keeping going hopeful that this will pass soon. I just need to give my body time to adjust for healing and the new steroid levels in my blood. It’s a lot to tackle all at once for my body I think. I especially wonder if the methotrexate is slowing down the healing process seeing as it interferes with fast cell division.

Also, I have noticed ice cream appears to increase the likelihood of me getting cramps in my feet and legs. Doah! If I stay away from it I appear to do well, but when I have some, especially at night, I usually end up paying for it.

I am just stoked to be taking such little prednisone pills! Can’t wait until I take NONE! =)

Still moving forward!

Meds, Cutthroats and Hope

Methotrexate Blues

Upping my Methotrexate to .8 has had a big impact on me. I wouldn’t think that going from .6 ml to .8 ml would be that much of a difference but this past two weeks has been really hard. I am hoping that it is just a temporary thing and my body adjusting to it because I know two other people who are on this dosage, who are smaller than me physically, and seem to handle it much better. It appears that when you take it and how much I sleep has some sort of effect on how much it hammers me. My friend takes it in the morning and has had a lot of success in not feeling as bad. When I tried this it did seem to help with some of the symptoms but I noticed that the nausea was much worse. I am still trying to work into some sort of a grove with this. Another aspect of this is when and how much folic acid to take, which I haven’t gotten very much clarity from my doctor on. What I am doing is taking 800 micrograms every day except the day of injection. I will need to do some more research on this to make sure that this is the best course of action.

New Pulmonologist

My roomatologist doctor insisted that I find another Pulmonologist because he wanted to make sure that everything was going okay with my lungs. I did some research and finally found one that I was really impressed with. He is very knowledgeable and most importantly is willing to thoughtfully listen to and answer all of my questions. I went over all of my history with him and was able to use him as a second opinion, which I always like to do. He confirmed everything my roomatologist is doing which helps build confidence that I am doing the right thing.

I did another lung function test and it came out 89% normal for people my age and size, which is good. (10% swelling of lymph node probably makes up for the difference) We went over all my old X-Rays and my CAT scan and he showed me all the different parts of my liver, spleen, etc and how they appear to be clear of any effects of the sarcoidosis. He mentioned that many people don’t take any medicine for sarcoid as long as it isn’t scaring any tissue or causing side effects that can’t be dealt with, such and severe pain in my ankles. He said that just having swollen lymph nodes in one’s chest is fine as long as it doesn’t show up in the lungs etc. Right now this is what is happening to me, although I am on medicine. The goal is to get to this point with out the medicine.

He was a bit concerned that I was on three medicines with out an absolute confirmation that I have sarcoid by biopsy. I talked with him at length about this as my last Pulmonologist couldn’t give me a good enough reason (in my opinion) to get a biopsy. He made a few compelling points that really resonated with me. The key being that although it very much appeared to be Sarcoidosis, making that assumption with out proof could cause complications with diagnosis in the future. He pulled up my CAT scan and pointed out that the doctor who had interpreted the finding put “consistent with sarcoidosis”. The request for the CAT scan had mentioned sarcoidosis and so the doctor was “looking” for sarcoidosis instead of keeping an open mind. My Pulmonologist pointed out that the CAT scan was also consistent with lymphoma, but that this was not in the report. Now my Pulmonologist didn’t think that it was lymphoma but with out having a positive diagnosis mistakes like this could be made. Also in the future is there were problems in the liver or other areas it might be blamed on sarcoidosis, and what if I didn’t have sarcoidosis but some other thing that appeared like it. He also said that sarcoidosis is a life long thing, or in other word I could have flair ups through out my life, so it was worth investing in the additional tests to be sure of our findings.


Falling Among Cutthroats

After all of this I found myself reluctantly convinced that perhaps I should get a biopsy so I did yesterday. Thy put a nice little scar at the base of my throat so now I can joke about falling among cutthroats in some dark ally in a desperate fight for my life. Ha Ha. They were able to confirm that it is indeed sarcoidosis. Today I am recovering from the surgery. (Isn’t Lortab great?) Ha Ha! Perhaps it will help with the Methotrexate I will need to take tomorrow. =) Ha Ha

Today is the day I step down again on my Prednisone to 15 mg per day! I am very excited about this. The faster I can get off of Prednisone the better! All in all I am still making progress. I am holding my weight, dropping the Prednisone, keeping the symptoms at a minimum and moving forward. I do have to admit though, there are some really… really hard days, but all in all I am making strong progress!

Receiving Help

I really fell blessed and watched over, and in those times when it gets really hard and I find myself turning to a loving God in prayer I do, in deed, find strength. Strength in a way that no medicine or doctor can’t provide. How grateful I am for that! It is what has really helped me carry through the hard times with hope.

Getting There… More Progress

I had another meeting with my doctor who was very pleased with the progress I have been making. I haven’t had any swelling in my joints and have been making good progress. I am feeling a bit of pain just before I take my Prednisone and Plaquenil but it is very minor and goes away quickly. My doctor has increased my Methotrexate to help off set this, but has told me to take the Prednisone for two more weeks at 20 mg and then lower it to 15 mg. I started at .5 ml of the Methotrexate, then went to .6 as I continued to reduce the Prednisone, and now will be at .8 ml. With being at .8 ml the doctor has had me start taking Folic Acid, which is one of the B vitamins. The Folic Acid helps offset some of the side effects of Methotrexate. (See earlier post for links on Methotrexate)

I can’t tell you how happy this makes me that I am lowing the Prednisone. I am very excited to see progress here! The biggest thing I am finding is a tremendous amount of relief from the Prednisone side effects! I am way more patient and actually find that I want to be around my kids again. =) I have lots less aggravation, I am sleeping well at night and am feeling myself again. When I was on higher does of Prednisone I didn’t feel like myself. It’s hard to explain, but I was someone else. A very… uh… blunt someone else. Also my thinking has calmed down, and I don’t feel like my mind is always racing. All in all I am really enjoying the reduction in side effects. The Prednisone is effective in getting rid of the pain and treating the sickness, but the side effects are something to deal with!

I finally setup a meeting with another pulmonologist. I have notice a few times while I have been lowering my Prednisone that I have had a hard time breathing. I haven’t had another chest X-Ray and am very interest in seeing the results compared to the previous ones. It isn’t until later this month so I’ll have to wait and see.

All in all I really feel like I am moving forward. I am still cautiously optimistic! =)

Prednisone, Leg Cramps and Weight… going… going…

My Doctor has been having me lower my Prednisone dosage over the past few weeks. I have been at 40 mg which has been very hard on me. I have really struggled with the side effects including weight gain, strong changes in my mood and aggravation levels, etc etc (see previous posts), so I was very excited to cut down. I have been really worried that the same thing that happened last time might happen again, eg. The pain came back and I had to up the dose again, but so far so good… no GREAT! I cut down to 30 mg and there was some pain, but it subsided and everything seemed to be good, despite the fact I got a cold at the same time. I am now down to 20 mg and again after a short adjustment period things appear to be going well.

I am VERY hopeful that we can keep on this path! Getting off the Prednisone is important to me, I really can’t stand the stuff and what it does to me. I have already noticed a big difference in my thinking, my patience levels and my aggravation levels have gone way down. It’s almost like sitting in a large hot tub and feeling yourself relax. Ahhhh!

The foot and leg cramps have subsided, although I don’t know for sure the reason. I could guess that it is because I am lowering my Prednisone, or that I am eating potassium (Bananas etc.), or because I am making sure I keep my legs and feet warmer at night. Whatever the reason I’m grateful for it. I can still feel them on the edge of cramping if that makes sense, but if I quickly stretch them out there isn’t a problem. Good improvement anyway.

I am completely feed up with the weight gain and fat redistribution that the Prednisone causes. I have been casually fighting it up to this point but just finding the energy to get up and go to work, being a dad of 6, a husband who matters, a scout master and just a human being who doesn’t snap at everyone has consumed most of my mental capacities up till now. At the beginning of last year I started at 285 LBS and started exercising and eating better. I got down to 240 LBS (45 LBS!) and was feeling great still moving forward when I got sarcoidosis and started the Prednisone. My weight has slowly climbed due to reduce activity, continual hunger, bad eating habits, etc, until I reached 265 LBS! My cloths aren’t fitting well, as you can imagine, and I am not feeling well with all this extra weight. I’ve had it, and am feeling well enough to get serious about this so I have started back on my original eating / exercise program. I’ve got to be careful to not over do it on the exercise especially as I am cutting down on the Prednisone, but so far so good. I have lost 5 LBS and am at 260 LBS right now.

If all goes well, and if I can stay on this path then I think I’ll be in a good place in not tool long!

Again, I am cautiously optimistic. =) Wish me luck!