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!