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!