I've finally been forced to give in to the fatigue and pain. i have never taken anything for sjs, fibro the pain and fatigue part. I take thyroid meds and prednisone for Addison's but only in replacement dose.
I can't do the pred in higher doses anymore, the prednisone withdrawl is just to hard. So I see my rhuemy in March 5 as i just can't after a month of pain and fatigue, get this train back on the track. I am going to ask about medications. I did try plaquenil breifly but had cognative issues and had to quit.
What meds do you all take for the pain and the fatigue? I would like to ask my rhuemy about them too. Thanks, Sandra
Hi Sandra :)
I do take Plaquenil but can tolerate it well. I take omeprazole for gastric issues and reflux and I take tramadol and paracetamol for pain. I'm also on thyroid meds. Recently a blood test showed up that said I wasn't on enough thyroid replacement. I'm now on more and my pain levels are better than they've been for a long time. Sometimes I think my thyroid causes me more bother than SjS does.
Take care - Scottie :)
A lot of people on this site take the tramadol(Ultram) for the pain or gabapentin for nerve pain. There have been people who have taken cylert for the fatigue. There is another med also but it slipped my mind. Many people take ibuprofen etc for pain, but it is hard on the stomach and that is not good when you are also on the prednisone.
It might be that you can take a little extra prednisone on an every other day basis. This might give you a boost with the inflammatory issues. Not all of us take huge doses of Prednisone. I take 10 mgm every other day and have for 5 years. Also, I take prilosec for GERD or the heartburn that goes with sjogrens. There is also the amitriptylene that is taken at bedtime to help with sleep and nerve pain. This is an old antidepressant. Some people take one of the newer antidepressants for sleep and pain. Just take a lower dose. Sleep is very necessary to help us maintain a quality of life. Being in sleep deprivation all the time just makes us miserable and unable to cope as well.
Hope you can get straightened out. Irish ;D
Hi Sandra,
I've not taken prednisone so I can't speak of it, but I do take Lyrica for the nerve pain, what a difference it's made for the pain - if I miss a day or two of it, I feel the pain returning. I also take Flexeril for my muscles and to aid in sleeping.
I used to take Volterin for pain, but it makes me sleepy all the time, and the weight increase just did not make it worthwhile for me to take (I already have enough fluff, don't need any extra! :D). I can't take amitriptylene as it causes a lot of nightmares and I started to hate to go to sleep, oh well, had to try.
I too take thyroid meds for Hashimoto's, but the neuro is thinking that it may not be as controlled as the endo thinks. She asked if I'd had the FT3/FT4 done lately? I told her that I couldn't find an endo that would do both those tests, just the old standard ones. The neuro is recommending another endo, hey, I've been asking for these tests for years now - amazing, it takes a neuro to listen ::) (and yes, I've set up an appointment to see the recommended endo). It may not come to anything, but it's something to rule out.
I hope that you find a med that can help you, just wish that there was just one med that would help all the people all the time. Oh well, a girl can dream! ;D
Take care and let us know what the doctor has to say -
Patze
I think the med Scottie was trying to think of for fatigue is Provigil. ;D
Pooh
G'day Sandra, I take alieve for my pain. I tolerate it better that Ibuprofen. Omeprazole is what I take for Gerd. Have you tried some of the Herbal remedies out there? I know people who sware by Cinnamon capsules.
Seeker