I will be going to the rheumatologist tomorrow. I have been on 40mg of Prednisone for the past two weeks. I have gotten some quality of life back but I still feel like I am in a flare. What questions would be helpful to ask my doctor tomorrow?
I am in the same spot. With only 20mg (and plaquenil) I feel the best yet ( could be a lot better but I love it). I know they don't want me on prednisone ( i am extra high risk with multiple medical problems) but as soon as I taper down to 10mg I just go back to being in pain. I guess you should just tell the doctor what you said here. Please let us know.
Rachel, how long do your flares typically last? I feel like my flares last briefly but the residual fatigue is ongoing for at least 2 months or so. Is this your experience too?
Are you taking the prednisone for pain or a flare? I was taken off of prednisone because of the negative lasting effects and advised to treat the ailments as they surface, best advice ever!! Not realizing, I was becoming dependent on the 'quick fix' of prednisone and not just dealing with the flares and associated pain. Which I now address with Motrin... Best medicine ever...
I never know what a "flare" is or what it involves. My only one so far was diagnosed with blood tests. When I feel crappy I don't know if I'm just a sissy, or if its medicine, or Lupus. I asked my doctor how I could tell and she wasn't helpful. I am fortunate in that pain has not been a major issue.
I was started in Plaquenil the day I got my diagnosis. I can only take one a day instead if two because it starts to cause confusion and altered mental status for me. I know I can’t live on Prednisone so I’m curious if any other medications could help with maintainence. I also have Hadhimotos and Celiac disease so one day everything could be just ok and I can kind of function and the next day, I can’t even get out bed.
dragonfly77 said:
I am in the same spot. With only 20mg (and plaquenil) I feel the best yet ( could be a lot better but I love it). I know they don’t want me on prednisone ( i am extra high risk with multiple medical problems) but as soon as I taper down to 10mg I just go back to being in pain. I guess you should just tell the doctor what you said here. Please let us know.
Please be careful with NSAIDS and other pain medicines. Although I have no proof, I believe they caused me to develop Crohn's (or at least made it worst). I believe the predisone upsets my stomach just as much. So I really don't know where we will go next if I can't get out of this flare.
Good point both Ann and Dragonfly77, how do we protect ourselves from adverse affects from Motrin? Any suggestions is it in diet or just usage?
I have only had to take the Motrin after returning from 90 degree weather outside, at night to prevent a flare. I don't know if motrin can stop a flare, I just take it when the heat index is 90 and I have been outside, then start feeling the prickly sensation under my skin, dizziness and bouts of insomnia (restlessness, quick movements and chills) start, this I assume is a sun induced flare, so I quickly take the motrin and just lay down. Within 20 minutes, my chills go away and my temperature stabilizes and I sleep one hour after the medicine.
P.S.- I was ecstatic when I found out Sam's club carries Motrin...What a bargain...
dragonfly77 said:
Please be careful with NSAIDS and other pain medicines. Although I have no proof, I believe they caused me to develop Crohn's (or at least made it worst). I believe the predisone upsets my stomach just as much. So I really don't know where we will go next if I can't get out of this flare.
The only thing I can think of is, I should of pushed for a diagnosis a long time ago. I have been in pain for at least 16 years (when I became pregnant with my first child). I only pursued a diagnosis when I got to the point with stomach pain, that I thought I was going to die. All my life I wanted to be be "normal" ( my heart is backwards), so I dealt with the pain and only seeked treatment for the symptoms as they came up. Which with joint pain, lead me to every OTC and prescribed NSAIDS multiple times by multiple doctors. Looking back, I think I used way to many and should of been on plaquenil a long time ago.
So when you go to the rheum. ask about the risk of predisone and NSAIDs upsetting your stomach.
Unfortunately, yes.
Please give me tips on how to go outside and shield the sun?
Ann A. said:
Unshoreandscared,
Are you allowing the sun to reach your skin?
Unshoreandscared said:Good point both Ann and Dragonfly77, how do we protect ourselves from adverse affects from Motrin? Any suggestions is it in diet or just usage?
I have only had to take the Motrin after returning from 90 degree weather outside, at night to prevent a flare. I don't know if motrin can stop a flare, I just take it when the heat index is 90 and I have been outside, then start feeling the prickly sensation under my skin, dizziness and bouts of insomnia (restlessness, quick movements and chills) start, this I assume is a sun induced flare, so I quickly take the motrin and just lay down. Within 20 minutes, my chills go away and my temperature stabilizes and I sleep one hour after the medicine.
P.S.- I was ecstatic when I found out Sam's club carries Motrin...What a bargain...
dragonfly77 said:Please be careful with NSAIDS and other pain medicines. Although I have no proof, I believe they caused me to develop Crohn's (or at least made it worst). I believe the predisone upsets my stomach just as much. So I really don't know where we will go next if I can't get out of this flare.
Awesome post Rachel!
btw - I noticed this post has already been read by 49 people in 1 day! Your post is helping a lot of people Rachel!