It has been a rough go the past while as you can tell by the lack of postings. So here's a quick update...
Doc's...
I went in for my breathing test that the pulmonologist ordered and they hooked me up in the really fancy breathing booth. They ran me through a bunch of acrobatic breathing stunts of holding my breath, gasping for air and then breathing it out so hard that your ears wanted to pop off . Then when all was said and done the results were.... “Normal, with some small congestion”. What? Isn't that what I told them? Ha Ha... well at least we have a really cool machine that can confirm what I was saying.
When the results went back to the pulmonologist he read the results and immediately ordered.... yup.... a biopsy! To which I immediately fired him. It was really funny talking to the front desk. They called me to tell me if I didn't go get the biopsy that the doctor wouldn't see me anymore. I kind of chuckled and said, “okay”. She pulled up my schedule and said I'm canceling your appointment on... uh... on.... You don't have any future appointments”. “Exactly!” I talked to several people who had seen this doctor and all of them had lots of trouble. Boy it's all about getting the right doctor. I talked to my primary doctor and we are looking for another pulmonologist.
Up's & Down's....In the meantime my breathing really improved. Actually it improved to the point that my doctor decided that we should try and lower the Prednisone down to 30 mg. I was EXTREAMLY excited about this since the medicine is messing with me so badly. As soon as I lowered the does though I immediately began having pain and swelling return to my ankles. I decided to wait it out a few days figuring that my body would need a little time to adjust, but when it became apparent that it was only getting worse I begrudging call the doctor and reported the bad news. He had me go back to 40 mg and schedule an appointment for me.
I was really disappointed at this. I was hoping that I was making progress and having to go back to 40 mg really made me wonder if I was making any progress. The Prednisone is messing with my weight really bad. I had lost 45 Lbs since the beginning of the year, which I have gained about 30 of that back. It is very frustrating, and it redistributes the weight around your face, neck and back in non-flattering ways. Just what you need when you are feeling depressed ah? Needless to say I began wondering how long I was going to have to deal with this, or if I was ever going to make any progress.
Up's Again!When I saw my doctor he proscribed some additional medicine. I was very concerned about taking even more medicine. The Prednisone had enough side effects already and I was worried about drug interactions. Also from what the wingnut pulmonologist doctor was telling me the other medicine that was available was more risky. As it turns out though they have worked out very well and the risks are really quite moderate.
The first medicine is called Hydroxychloroquine also known as Plaquenil. This is actually an anti-malaria medicine that they used while making the Panama Canal and found that as the workers took it their arthritis got better! I haven't been able to find any noticeable side effects other then it has really helped. (Your results may vary) I am on 200 mg twice a day.
The second comes with a little more risk and side effects. It is Methotrexate, which is used for chemotherapy and autoimmune diseases. It works to stop the synthesis of DNA, RNA, thymidylates and proteins. Because of this you shouldn't try to have children while on it regardless if you are a man or a woman.
The side effects really knock you down for a day or so, but you only have to take it once per week. I am also taking it in shot form which increases the absorption and reduces some of the side effects. I have a friend who was taking the pills who said when she switch to the shot it really helped, so if you are taking this drug in pill form I would recommend talking to your doctor about the shot method.
The result of taking these additional drugs has been really good. My breathing has not been a problem for some time now and the pain and swelling went away. In addition after a while of being on the new medicine and with such good results my doctor has again reduced my Prednisone to 30 mg per day. I was really worried that the same thing that happened before would happen again but so far so good! Everything appears to be going good. I am still a little worried but I am cautiously optimistic! Have to wait and see.
You can read up on Wikipedia on these two medicines if you like. The links are here:
Plaquenil Methotrexate So where am I today? Well the Prednisone is now down to 30 mgs and holding which is really good because it helps reduce the strong side effects. I am feeling more sensation in my ankles but not pain per say which is really good. My weight is up =( and my sleep is still messed up but that seems to have leveled out a bit, as long as I take the Prednisone at breakfast and no latter than dinner. I am very hopeful that once I lower the Prednisone even more I will be able to deal with the weight issue better. There are still good days and bad days, but my breathing is doing MUCH better. Oh, and for some reason my heartburn issue has gone away for some time now. Don’t know why, but I’m really happy about that! All in all I believe I am making progress!
Credit Where Credit Is DueThrough all of this though I have to say one of the biggest strengths has been prayer. That may sound strange or funny, but I know God is there. I know he listens. And in the darkest times when I reach out to him I have truly felt his strength. From when I need the courage to get out of bed in the morning and go to work and provide for my family when when I really can't find the desire, to the times when I am completely messed up by the drugs and their side effects and need help controlling my frustration. He is there, and he does help. What an amazing thing this is!
Holy moley it has gotten bad lately. Especially at night or first thing in the morning. I have been doing a little surfing on the internet to see if any of the drugs I am taking have this side effect, and as far as I can tell they really don't.
I'm going to try stretching more and perhaps some more walking. That does seem to help a bit. One thing is for shore, this seems to bet getting more prevalent, or is happening more often. I've got to call the doc tomorrow because one of my prescriptions is running out so I'll talk to him and see what he says.
On the lighter side, my wife is teasing me that perhaps I'm not suffering from Sarcoidosis, but male onset PMS! What with cramps, weight gain, water retention, mood swings, etc. He He! =) Well, if that's the case, let's just hope I don't get pregnant! =)
