The calm after the storm

I just got back from a vacation with my lovely wife celebrating our 20^th anniversary. We went on a Caribbean cruise for a week and the trip was nothing short of amazing. We swam with dolphins, being pushed along on a buggy board and pulled along by holding their fins. We ATV’ed through the rain forests of Roatan and then swam with a massive turtle who let us play and ever ride her. (Amazingly gentle creatures) We walked among the ruins of Tulum of the ancient Mayans and played in the glass like ocean waters so calm that you could float in them like swimming pools and sand so soft it felt like walking on powdered sugar. We cursed on a ship so large that it had 13 floors and is longer than three football fields.

I walked the stairs, played basketball, strolled the decks and watched flying fish sail away from the bow of the ship for astonishingly long distances. I walked the ruins, the beaches and the cities. I watched the shows, laughed at the jokes and soaked in the hot tubs. I ATV’ed, danced, and even did a charity walkathon for the make a wish foundation, and in all that time I never hurt. I didn’t even think of Sarcoidosis… other taking my pills morning and night, I never thought of it.

I started this blog not knowing what to expect. I didn’t know if I would suffer with Sarcoidosis all of my life, or if it would cripple my ankles, or if I would be forever fat because of the medicine. And through a lot of work, and finding the RIGHT doctors and the RIGHT medicine I have now entered a stage where Sarcoidosis doesn’t really affect my daily life. I have even lost a significant amount of weight!

If I knew back then where I would be now I would have had much more courage. I still hope to come off the medication all together in time, and know that I can, but for now… Life is wonderful again.

If you are suffering from Sarcoidosis, you hang in there. Don’t give up. Fight and push and keep looking for the answer. Work at finding a Doctor who will listen to you. If a medicine isn’t helping you progress, tell them and work to find better ones for you. Be willing to go through the roller-coaster of switching drugs and doses. Never give up, never stop fighting! Partner with your doctors, they have the knowledge and you have the experience with your body. Together you can figure it out!

I don’t that this will work for you, but I wanted to list what has been very effective for me. I am currently taking:

Imuran (Azathioprine) 100 mg twice per day (This is doing the heavy lifting)

Medrol (Methylprednisolone) 4mg twice per day (Much, Much fewer side effects than prednisone for me)

Prilosec (Omeprazole) 20mg twice per day (For heartburn that the pills can cause)

What an amazing difference this has been for me. You should know that I slowly stepped down on my drugs over a large amount of time. I plan to continue to do so after the first of the year. I want to reach the minimum dose possible or, hopefully, none at all. (Remission)

What a journey this has been and it isn’t over yet. I expect there may be more ups and downs in the future, but I am constantly amazed at how far I have come and how much better my daily life is.

Michael

Ps. My sister is doing VERY well also.

Exciting News!

Have you ever wondered why Sarcoid blogs stop getting posts after a while? I think it is because life gets busy and dealing with the sarcoid becomes second hand. I think it may also be because people get better and the stop thinking about it all the time. For me both are true.

Since my last post things have really changed for me. If you remember back in the fall I stopped taking Imuran for an “undisclosed” reason. That reason was to get the medication out of my system so that my amazing wife and I could have a baby! Believe it or not number seven is on the way. Yes, you heard me right, number seven. We are very excited. I have three boys and three girls so there was a lot of anticipation to see if the boys or girls would win the numbers game. Turns out the girls made a come from behind victory… it’s a girl! We are all very excited, especially because this is our last. For those of you who think we are nuts to have seven kids, you’re probably right, but I’ll tell you… our lives are very full and all in the best ways.

I did fairly well off of the Imuran with a few bumps in the road. I switched off of the Prednisone to Medrol (methylprednisolone). It is about the same thing, it just works in a slightly different way at a different dose. It has actually worked very well for me and I have been stepping down on the dosage. I got down to 2 mgs before I had a flair up (recently) and am getting that back under control with a bump up to 8 mgs and step back down to 3 mgs. I figured that I will probably get back on the Imuran now that we have the baby on the way. With any luck I will be off the Medrol by winter. Here’s hoping.

I talked to my pulmonologist (Lung doctor) about sarcoid in more depth. I notice that when I have flair ups it is often in my lungs and then some random place on my legs. I asked him if it was possible to get these in dangerous locations such as my liver, brain, etc. He told me that it was possible and he had a friend that died in his 30’s because he had sarcoid and didn’t treat it. For some time I have been debating if I should just stop taking the medications and deal with the sarcoid because I hate some of the side effects… I guess this answers that question. I have a lot to stick around for.

Speaking of which, I went on two hikes with my daughter this spring and summer. It was really great to get back into the mountains and smell the fresh air. I love the mountains and my daughter and I had an amazing time. Nothing like memory building, looking forward to more.

Michael

Oh, just in case anyone is keeping track, I am currently on 200 mgs of Plaquenil (2 x daily), Prilosec 20 mgs (2x daily), and Medrol 3 mgs daily. The Prilosec stops the… uh… digestive issues that Medrol causes me. Works great!

So Far... So Good!

I’m doing GREAT! The burning in my lungs has gone and I am now down to 2 mgs of Prednisone every other day. I have some sore pain in my knee and in some other joints but it really comes and goes. I think it is typical for what I have seen in the past while stepping down on the medications.

My kidneys still hurt on and off, but I think that they are getting better too. I have to go to the doctor for a quick blood test to make sure the potassium tablets are working right, but I expect they are based on the relief I have had from the digestive “issues”.

All in all, I’m still optimistic.

Michael

Tempting fate… but with hope!

My son and I managed to make it to the mountains with the other scouts, got our tents setup, built a fire, cooked and eat an amazing Wal-Mart stew (anything taste good when you are cold and hungry) and get ready to settle in when I realized I forgot my medication! Arg!

I had forgotten to take my morning medications in all the hurry to get out and then with the smoke from all the camp fires my lungs were hurting. I could miss one dose without too much trouble, but I knew I couldn't miss two. So my son and I took the 100 mile round trip to go back and pick it up. Everything worked out though. My son and I had a great talk and we even helped a lady who's car got stuck in a snow bank on our way back. (It was a scout trip after all.) All in all it was a great trip! =)

My lungs did hurt for a few days after though. I'm not sure if it was the smoke or messing with the medication, but I am guessing it was the medications. It settled down again after I got back into the normal swing of things.

In an earlier post I had mentioned how the methylprednisolone (Medrol) had been working well for me. The only noticeable difference was some irritable bowels, but I didn't think much of it. Things got busy and several months went by without me going to my regular monthly doctor’s appointments. Well when I finally went back and got a blood test it turns out that I have been low on potassium. Apparently being low on potassium throws off you systems and can cause irritable bowels. (I have really got to start listening to my body… and not missing doctor’s appointments.) The doctor prescribed potassium pills and the problem has gone away. I need to go in for follow-up blood work this week, but I expect everything will be fine.

When I met with my doctor we discussed how I was doing and determined that I was doing well enough to see if I can get completely off the prednisone! =)
I have begun a step down from 4 mgs a day to ---> 4 mgs one day then 2 mgs the second then back to 4 mgs to ---> 2 mgs every day to ---> 2mgs every other day to ---> No Prednisone! So far so good. Right now I am on the 2 mgs every day. My lungs have been burning a bit, but it seems to only happen during the first few days I step down. I am hopeful that it will settle down in the next few days.

Right now I am not experiencing any visible manifestations of sarcoid. My joints and shins are good and no sores or other problems. The only thing left is some burning in my lungs. I plan to go see my lung doctor and get another x-ray soon to see how the lungs are coming.

If I am having problems in my lungs and they aren't bad I may decide to just deal with them instead of dealing with the side effects of the drugs. Sometimes you have to ask yourself if the cure is worse than the illness. I know I’m going to have to really think about this and consult with my doctors. I don’t want to kick the sarcoid back into high gear, but at the same time I find myself wondering if the side effects of the medications aren’t worse than the sarcoid itself. For now I’m just going to see how things turn out and then cross that bridge if and when it comes.

I have to admit though, I am REALLY happy to be stepping down on the prednisone again! Now if I can only gear up for the 8 mile backpacking trip my son is going on this summer. Here is hoping.




Michael

Ps. My kidneys are hurting again… possibly stones again? I’m trying the lemon juice that I mentioned earlier to see if that will help. It appeared to work last time. I hope it will work again. I’ll let you know.

Here is my post on Kidney Stones: When life gives you lemons... kill kidney stones!

Doing Great! (Just don’t forget…)

Things are still going very good. This past week or so I missed, or was late on, my evening medications (Relafen & Plaquenil). I noticed a slight redness appear right over my left ankle and it began itching. I was concerned that perhaps I would begin slipping back into the irritation I have felt, but I got more serious about not missing my medication and it has almost completely gone away. I take this as an indication that these medications are important and effective, and that the Medrol (Methylprednisolone) isn’t able to stop all of the symptoms on its own. (At least in my situation)

I have really noticed how important it is to be consistent not only in taking the medication every day, but taking it around the same time every day. I suppose that switching up the times I take my medication is similar to how jetlag messes with my body. It seems to me that our bodies adapt best to consistent patterns and rhythms in life.

I have had Sarcoid a little over two years now. My doctor said that the average time it takes to remit Sarcoidosis is two years, but some take much longer. My dad took ten years, but it is looking like me and my sister may be much closer to the average. Perhaps this is because of newer medications and updated treatment. Or possibly it is due to diet and exercise; maybe a different mix of genes (Thanks Mom!) or answers to heart felt prayer. My guess is that it is a little of everything. Whatever the reason is, I am very grateful.

Well, all in all I am really feeling relief and life is almost completely back to normal, or at least as normal as life was before Sarcoidosis. I have a winter camp with my son coming up this month and it promises to be very cold. In the past cold has actually seemed to help how my lungs feel. I’ll let you know how it goes.

Michael

Ps. Here is a list of the current medications I am taking:

Morning:
4 mg Medrol (Generic name: Methylprednisolone)
200 mg Plaquenil (Generic name: Hydroxychloroquine Sul)
400 mcg Folic Acid

Evening:
200 mg Plaquenil
750 mg Relafen (Generic name: Nabumetone)

PPs. Hang in there, you’re not alone in this! Remember Sarcoid is beatable!

Amazing! Better than ever!

Amazing! I am doing better than ever! The redness and swelling has completely gone away. My legs are the same as when I was twenty five and I haven’t used the compression socks for months! I was feeling it in my lungs quite a bit, but even that has gotten much better. (Still there a bit but doing great!) I feel very blessed and grateful.

This holiday season has been one of the most... meaningful of my life.

Nothing to do now but keep going, eat good (especially after the holidays), exercise and enjoy this reprieve that I have been experiencing. Here’s hoping for the future.

Michael

Ps. My sister, who also has Sarcoidosis is doing much better as well. She has lost a ton of weight and is down to 5 milligrams of Prednisone and looking to go to 2! She has had Sarcoid longer than me but most of that time was untreated. She has taken a slightly different treatment path, primarily just Prednisone, but it has worked for her. Just goes to show that different people react differently to different treatments, the key is to just never give up!

Good luck sis!

Sometimes you have to go down to go up

Well… the effects of the Imuran finally ran out, and while I was on a business trip too. My leg began swelling and getting really stiff. The red lumps (for lack of a better term) began migrating toward my ankle. I was very concerned that the inflammation would again impact my joint and I would lose the ability to walk freely. If this were to happen I would have to go on a high dose of Prednisone with all of the strong side effects. The timing for this couldn’t be worse. Things are changing at work and I am applying for a position. I certainly couldn’t afford to be dealing with “Prednisone Rage” during this process.

I went and saw the doctor when I get back from the trip and explained the situation. He talked over the situation with me and then switched out my 5 mgs Prednisone with 4 mgs Methylprednisolone. He gave me a shot for a boost to get the swelling under control and told me to get some compression socks.

It has been two weeks since the change and I am in better condition now than I have ever been since the Sarcoid started! The medication appears to be working very well, and the compression socks appear to be doing the trick. I have been eating better and have lost about 15 lbs and feel really good. I have to wait and see if the shot is still in my system, but I don’t think so. If this keeps up I might even be able to kick this thing before too long. Needless to say I am very excited.

Here’s looking to the future.

Holding on and a leap of faith

I have gone off of the primary medication (for personal reasons I’ll explain later) and have been waiting to see if my symptoms come back. It is too early to come off as quickly as I have and so I am expecting some side effects. So far I haven’t really noticed anything, but that last few day I have begun to have some serious pains in my left foot. It has been very debilitating at times, reminding me of my ankles when I first was diagnosed. I have also been sick with the… well runs on and off for over two weeks now. I know that my sarcoid kicks up when I am sick. (This only makes sense since it is an autoimmune disease.) I am hoping that it is only because of this and will go away when I am feeling better.

I’ve already seen a doctor about my drawn out stomach issues, but he seems to think it is a virus and will pass. If it is, this is the longest I have had something like this. I have a prescription to have an additional test done at the hospital should it not clear up. For now…. I think I’ll wait it out.

Today I wasn’t hurting and so I went on a mile and ¾ walk with my wife. No pain! I don’t know yet if I am just lucky today or if it was temporary. All I can do is just wait and see. It was good tonight though!

I talked to a guy at my work today… get this. He had sarcoid 10 years ago! For a rare disease I sure know a lot of people who have had this, or do have it My dad, my sister, a person at my church and a person at my work. Hummm… I guess we are not so alone as some may think ah?

Things are still looking positive though. I’ll keep you posted.

Things have been going very well. I have progressed all summer and am feeling only minimal symptoms. I have on large area on the shin of my left leg that at times gets hot, red and sore. At other times it is cool to the touch but hard as bone. I have the same thing on my right leg but to a much lesser extent. The medications and I believe physical activity has really worked well.

I have been very active this summer, many walks with my wife and the family and even walked home from work today. (About 3 miles) I've also lost twenty pounds over the summer and my prednisone face has mostly gone away. (sigh in relief) Just a short while agao I went on an eight hour ATV ride through the mountains while the leaves are changing. I felt great and the ride was Amazing! All in all I have really been blessed.

I have recently gone off of the Imuran and the Sarcoid hasn’t gotten any worse. I am now only on Prednisone, Plaqunel and Nabumetone (1500 mgs per night). =) I will have to wait and see how the winter goes, but I am very hopeful. Things appear to be really looking up.

Keep fighting! It's worth it!

The strength continues!

I am continuing to do better, even missing my medication one night didn’t impact me like it has in the past. I am excited at the progress and hope that I can sustain this. I am really looking forward to gaining my strength back, I really miss it.

The other day I took an opportunity to run full out, as hard as I could and it felt GREAT! The blood pumping through my muscles, the burn of energy rushing through my body felt amazing. My lungs are still affected by the Sarcoidosis so it was hard to breath. Actually it took some time to regain my breath, and my legs were rubber afterwards for not having done this for so long, but it was awesome! I loved it and want more of it!

My wife has become very excited to begin some new diets on her own and the timing couldn’t be better. A better diet, starting more regular exercise… the road ahead looks promising. =)

Michael

Doing Good!

Great news! I am continuing to make steady progress. I have noticed a marked improvement in the redness in my leg and it has actually begun diminishing. I had some red spots (the sarcoid) next to my left eye, and I noticed tonight that it has mostly gone. It appears that a combination of the medicine, more activity and perhaps even better weather is helping. I am very excited.

I am constantly amazed at how much strength I have lost. It is a little hard to explain because it isn’t strength per say…. I still am very strong. I’m able to lift heavy things and do the physical things I always have, it is just that I really hurt after doing them. I have the strength but get worn out quickly. I am hopeful that this is something that can be resolved with exercise and building stamina.

I think one of the biggest battles for me has been fighting the shear fatigue of the mornings. Many times in the past I have awoken to my alarm clock and the thought of getting up is staggering. Some days I just didn’t believe I had the strength to do it. I have to admit that in those times I turned to prayer and held on to my determination to never give up. As I decided to fight and as I began the day I felt an amazing amount of strength and I have been able to meet the demands of each day one day at a time. God has truly been with me and helped me, especially when the times have been hardest. And over all I have been able to do all of the important things.

It is amazing to me that sometimes the things that make you struggle the most give you the most sense of accomplishment once you have come through them and gratitude for the help that is given along the way.

I don’t believe that this is over yet, but I find myself very grateful for the progress I have made and have strong hope and confidence in things to come.

=)

Michael

Things Are Looking Up!

Things are going good. I am holding at 5 mgs of Prednisone and my health is holding. I have been doing more physical activities since it is getting warmer and my body appears to be holding up very well as long as I don’t overdo it.

I have a red spot that slowly (about six months) is moving up my right leg. It started in my toes and then progressed to my ankle and now is in my shin. I have no idea what it is but appears to be some kind of inflammation. The Dr. thought that it was gout and treated me for that, but the gout medicine didn’t do anything. He now thinks that it is some kind of inflammation so he had me switch my Prednisone from 2.5 mgs in the morning and 2.5 mgs in the evening to all in the morning. (5 mgs) I have been taking Meloxicam 15 mgs since April 30th which is a nonsteroidal anti-inflammatory drug. To be honest it really hasn’t helped. The thing that really appears to help is lots of physical activity! I helped my sister move and when I got home I thought for sure my leg was going to be terribly swollen and red, but instead it looked almost as good as when I first wake up in the morning! Surprise! Apparently physical exercise helps whatever it is. What makes it worse is sitting down all day and not moving around. I can’t wait to see what more consistent exercise can do.

I don’t know if it is just the drug change or the more activity, but I am starting to feel joint pain, especially in my toe joints, knees and sometimes my hands. It could be because of the constantly changing weather, or perhaps because I am taking the Prednisone all at once. I’m not sure. I think I am going to call my Dr. soon and let him know I want to go off the Meloxicam and go back to taking the Prednisone twice a day. That really seemed to work the best for me.

I think that overall things are looking very positive! =)

Really loosing it, Then finding it again!

The Sarcoidosis really flared up since my last post. I was so frustrated! My expectations were that I would be almost completely under control within a year. I had reached 5 mgs of Prednisone which is manageable and was really hoping to get back to my normal physical life… and drop all this extra Prednisone related body fat, but that wasn’t to be. My body wasn’t quite as ready as my hopes were. Since I went so long, trying to hold out, I ended up having to go back up to 30 mgs! I was so angry! The prednisone mental noise is very intense and increases with every milligram, so to go back up to 30 after being at 5 was a real hear breaker!

We ended up increasing the Imuran after I talked through my fears of cancer with the doctor. His comment was that only 2% of Imuran patients get cancer, where 100% of Prednisone patients experience very strong side effects, and some that can last with you for your life time. His biggest concern was to get me of the Prednisone, or at least down to 5 mgs per day as soon as we reasonably could. When I heard that the cancer risk was only 2% my fears were greatly reduced. I am now on 200 mgs of Imuran per day and it has really seemed to help.

It is now four months later and I am all the way back down to 5 mgs of Prednisone and holding it very well! This is the best I have felt since I started this journey. I don’t know if I will end up being that 2% that get cancer (in which case this totally wasn’t worth it) but if I had it to do all over again I would have started with the Imuran, and NEVER have taken the Methotrexate! I hate that stuff!

So for now… I’m doing fairly well and am looking and taking up some more serious exercise. My lungs are hurting a little the last few days, which I don’t usually feel. I believe it has to do with my having strep and having some warts burned off. These both trigger the immune system and I am guessing that it is causing the Sarcoid to bug me, although I have been watching my ankles (where I usually see the problem most) and they have been fine. The only other side effect that I have been noticing is that I am getting tiny red sores, not unlike pimples, running from the sides of my nose down to the corners of my cheek. (Strange) I have also noticed them at the outside corner of my left eye. Nothing too big, just something to watch at this point.

Things are really going well again! Better than ever! Here is hoping!

Michael

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.