I saw my pulmonologist a few days ago. I went to him to do a follow-up on my lungs and to see if he could give me more information on Imuran. I really like this doctor and would like to have him as my primary doctor, but he isn’t a rheumatologist. (Darn!) He is very willing to talk things through and does not feel that asking him questions is doubting his abilities. He always takes the time to make sure that all of my questions are answered to my satisfactions. I have to tell you, this builds way more trust for me than someone who says “If you question my decision maybe you should get a second opinion”.He told me that although the Imuran sounds on paper like it is much worse than Prednisone people tend to tolerate the Imuran much better than the Prednisone. In his experience he has seen many more health problems from being on Prednisone than Imuran and strongly recommends using the Imuran to get off of the Prednisone as quickly as you can. I don’t know how this will all play out, but this has given me a lot more confidence in taking the Imuran.
I have been hurting a lot lately. The cold water has helped but it is only treating the symptoms, it isn’t doing anything for “fixing” the problem. The pain in my feet has migrated and moved around my feet. Sarcoidosis is strange that way. It has moved down into the area just behind my toes. I had an appointment with the rheumatologist on Friday to talk this over and see what could be done, but due to a mix-up the doctor took Friday off and I wasn’t notified. (Very frustrating) So I rescheduled for Tuesday, I’ll let you know how it goes.
Last night I think I missed taking 2.5 mgs of Prednisone of my daily 7.5 mgs. I woke up this morning hurting worse than I can ever remember hurting with Sarcoidosis. I have been considering going off of all medications and just dealing with the pain of Sarcoidosis, but days like this remind me how grateful I am for medications even if they do have side effects. I ended up having to take a Lortab that I had been prescribed to get through the pain until I was able to catch-up with my medications. I am also dealing with some UT problems that the doctors haven’t figured out yet. I think that this may be making the situation worse.So… Stay on Imuran, get off Prednisone as quickly as I can, figure out the UT issues, meet with the doctor and see if we can get the rheumatoid issues under control. That’s the plan.
Michael
5 comments:
It sounds like you pulmonary doctor is a good one, mine is too. He will always spend as much time with me as I need. My next appointment is Sept 22. Are you still on Plaquenil?
I tried using ice packs on my knees after reading your post about the ice helping your feet. It totally backfired so it's not my solution for sure. Even if the ice is only controlling the pain, that's a good thing. It's much better than yet another medication for the pain. I have been trying not to use any over the counter or prescription pain meds. It's working so far but my knees are giving me a hard time. I'm going to try heat next, probably something like Thermacare patches.
Bonnie
Hi Michael. Thanks for this blog. It's nice to read what other Sarcoid patients are going through.
I know what you mean about being grateful for the meds despite the side effects. I'm on Prednisolone and I'm one of the lucky ones so far - my only complaints are "too much energy" and fidgetiness, which is working out for me b/c I need to lose weight. So, I've been hitting the gym big time and running around, losing weight, etc. But, on Monday I forgot to take my meds in the morning and I was absolutely shocked by how quickly I declined. It is depressing to know that the Sarcoid is like a wolf, just stalking in the background when the meds are making me feel so great, BUT, I have to say Thank God for the meds 'cus I couldn't cope w/ the sarcoid on my own. It's not just the pain and discomfort, it's the low energy, losing the will to live thing. Anyway, good luck and I'm looking forward to reading your blog.
Bonnie,
Thanks for your post. I'm glad to hear that you have a good doctor too. It is so critical to have someone you can trust working with you on this.
You asked if I were still on Plaquenil. Yes, no change there. It is the one drug that I don't notice any side effects, but to be honest I don't know how much it is helping either. No way to really know I guess unless I went off all the other drugs. (Not something I can do right now)
I'm sorry to hear about the ice pack backfire. That really surprises me. Sorry about that. I guess it goes to show how things work differently for different people. You'll have to let me know how the heat goes.
Good luck Bonnie!
Michael
Hay Blog Girl,
Thanks for your comments. I know what you mean about being shocked how quickly it came back. That is exactly how i felt. It sounds like you aren't having that bad of a time with he side effects. If so I am really glad to hear it! Keep up the exercise, I'm sure that it is helping. I would like to find a way to do that more, but I have to find an effective way to do it without using my legs. I’m still looking at different possibilities.
Hang in there, and good luck!
Michael
Hi folks, I'm hoping to go onto imuran in the next few weeks - apart from reducing the prednisone, does it actually help with the sarc itself? I mean if I were to get off all steroids and just take imuran, would it be of benefit to my health?
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