I'll recap for those who may not be familiar with what I'm going through.
I had pericarditis at the end of May which landed me in the hospital on 80 mg of prednisone. I also had to take an indomethacin, which I normally don't take because I am on coumadin. I was home for only a few days and then I woke up with the most excruicatiing my knees. I was in the hospital for another 2 weeks and still spend 95% of my time in a wheel chair. I use a walker for bathroom trips only. The Rheumatologist said this is a very rare thing that can happen with a quick increase or decrease of prednisone. I am down to 20 mg. The other thing is that it is evident that the methotrexate is not working for me anymore. I'm have my "regular" SLE symptoms coming back (serositis - lung is the worst).
So, the only choice at this time the doc said is to switch to imuran. My sister has been on it for a few years now for crohn's and she hasn't been sick at all. She had been on prednisone for 35 years before swtiching. The doc kept telling me about the risk of lymphoma. He said I am at risk for it because of the SLE. He said the studies show that imuran can increase the chance by as much as 5%. He also said that the study was done on kidney transplant patients and they were taking other medications as well, so the results may not be accurate for SLE patients. The other thing is he said it could take 2-3 months for it to start working. I took my last dose of methotrexate on Saturday. He has me taking 50 mg of imuran this week, 75 next week and then 100 mg the week after. I'm to stay on the prednisone for 2 weeks and then start decreasing again. So, for 2-3 months I am at risk for a flare. He also told me about the nausea. I haven't had any yet, but the dose is small. I remember with methotrexate, I was so sick on the smallest dose when I started, but it went away after a couple of months.
So should I be worried about cancer or flare ups? Like I said I'm already having issues with my lung and there is not sign that my knees are getting better (nerve pain and muscle weakness). I'm still stuck in a wheel chair and can't imagine what it will be like if it gets worse from coming off the methotrexate. At what dosage will the imuran kick in?
I would appreciate if anyone could share their experience. My husband already had to quit his job to take care of me and he is exhausted as it is. I hate being such a burden on my family and the financial costs are horrendus. Our GP did sign him off for sick leave (stress) through Employment Insuracne, but he got a letter today that they would only cover 2 months, so it is over on October 11. I could be in severe flare by then. So much to worry about and that is the worst thing we could do to ourselves.
Thanks for reading and "listening".
Nutty
I had pericarditis at the end of May which landed me in the hospital on 80 mg of prednisone. I also had to take an indomethacin, which I normally don't take because I am on coumadin. I was home for only a few days and then I woke up with the most excruicatiing my knees. I was in the hospital for another 2 weeks and still spend 95% of my time in a wheel chair. I use a walker for bathroom trips only. The Rheumatologist said this is a very rare thing that can happen with a quick increase or decrease of prednisone. I am down to 20 mg. The other thing is that it is evident that the methotrexate is not working for me anymore. I'm have my "regular" SLE symptoms coming back (serositis - lung is the worst).
So, the only choice at this time the doc said is to switch to imuran. My sister has been on it for a few years now for crohn's and she hasn't been sick at all. She had been on prednisone for 35 years before swtiching. The doc kept telling me about the risk of lymphoma. He said I am at risk for it because of the SLE. He said the studies show that imuran can increase the chance by as much as 5%. He also said that the study was done on kidney transplant patients and they were taking other medications as well, so the results may not be accurate for SLE patients. The other thing is he said it could take 2-3 months for it to start working. I took my last dose of methotrexate on Saturday. He has me taking 50 mg of imuran this week, 75 next week and then 100 mg the week after. I'm to stay on the prednisone for 2 weeks and then start decreasing again. So, for 2-3 months I am at risk for a flare. He also told me about the nausea. I haven't had any yet, but the dose is small. I remember with methotrexate, I was so sick on the smallest dose when I started, but it went away after a couple of months.
So should I be worried about cancer or flare ups? Like I said I'm already having issues with my lung and there is not sign that my knees are getting better (nerve pain and muscle weakness). I'm still stuck in a wheel chair and can't imagine what it will be like if it gets worse from coming off the methotrexate. At what dosage will the imuran kick in?
I would appreciate if anyone could share their experience. My husband already had to quit his job to take care of me and he is exhausted as it is. I hate being such a burden on my family and the financial costs are horrendus. Our GP did sign him off for sick leave (stress) through Employment Insuracne, but he got a letter today that they would only cover 2 months, so it is over on October 11. I could be in severe flare by then. So much to worry about and that is the worst thing we could do to ourselves.
Thanks for reading and "listening".
Nutty