Methotrexate Blues

Oh man! Last weekend was murder with the Methotrexate. It was almost pure torture.Over the past month I have gotten sicker and sicker every time I take the stuff. When it came time to take it last weekend I almost threw up just thinking about it. It make me feel extreme nausea along with flu like symptoms that you feel everywhere in your body, even in places like your earlobes! It is hard to explain, but the only thing I can relate it to is the feeling of being poisoned! It devastates me for over 24 hours and then I feel the residual effects for days! It got to the point that I was done! I just wasn’t going to take it anymore!

Luckily I had a doctor appointment already setup this week. I talked to him in depth about how I was feeling and he was really surprised. He said that about 10% of people have this kind of reaction, and in all the people he has treated I was the only one who has had this strong of reaction. I asked if there was anti nausea medicine I could take and he said that he never treats side effects of one drug with another. I thought that this sounded like sound advice. He suggested that we try switching to the pills and cutting the dose down. I was hesitant to ever try it again, but after he assured me that we would simply stop if I had the same reaction I agreed.

Well last night I took the pills and have done considerably better. I still feel some of the effects, but not nearly as bad and the nausea is greatly diminished and I have been able to manage it. The strange thing is that I have a close friend who was taking the pills and had a ton of side effects, so she switched to the shot and has done much better. Her experience is almost exactly opposite of mine. This just goes to show that everyone is different and what may work for one may not work the same for another.

My doctor also reduced my Prednisone again. I am now down to 12.5 mg per day from 15 mg. The side effect from the Prednisone have reduced to the point that I can really manage them and I feel like I have full control again, although I do notice I get the shakes really bad if I take it late. I told my doctor that I wouldn’t mind maintaining the Prednisone at this level for a while (15 mg) but he told me that at this level the Prednisone was still doing bad things to my body, such as robbing calcium from my bones among other things. He said the he wouldn’t feel comfortable with doing that until we got down to around 5 mg. The goal thought is to get off Prednisone all together. I am noticing pain in my joints just before I take my next dose, but not too bad. I have done this a little every time I have reduced my levels of Prednisone while my body adjusted, although this time it is a little worse. I am hoping that my body will adjust quickly and that I won’t go backwards.

The doctor also put me on one additional medication. It is called Colchicine .6 mg. (Don’t worry, I can’t pronounce it either.) This is typically used for gout, but can help Sarcoidosis. I have also felt some sore pain in my hips and knees which he diagnosed as bursitis. This medicine should help this as well as taking Aleve.

Man, with all of these pills I feel like my grandpa! So I am taking Methotrexate, Prednisone, Placquinel, Colchicine, Folic Acid and Aleve. Nothing like a fist full of pills! Ha!

I gained a little more weight again, so that now I am back to what I was before I started losing weight last year. I am really frustrated with that! I talked to the doctor about what exercise I can do and he was really concerned about any weight bearing exercise, even something like walking. Given my illness and what some of the medicine is doing to my bones he suggested that I either do swimming or bicycling. I don’t have a pool or a exercise bike so I’ll have to see what I can do. I know my wife would love it if we got a pool! =) he he, but I don’t think that is in the budget.

The incision from my biopsy has healed up nicely, but it has some swelling around it still. This has begun to be bothersome in the middle of the night and I am finding that it makes it hard to breath at times. If it continues to be a problem or gets worse I will have it looked at again.

All in all it has been a rough go, but I am still very pleased that I am still going down on the Prednisone. I feel that despite the rocks I am still making progress.