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!