Connect
Inflammation on Low Doses of Steroids
New to this group. Was diagnosed in November of 2024. Started on Prednisone and no real impacts. Was told that some people (me) cant metabolize prednisone and so my Rheumatologist put me on Dexamethasone and added Rinvoq. My inflammation and pain came under control until a higher doses and as soon as i began to taper off the inflammation and pain would return. I have been up and down for months, the Rheumatologist stopped the Rinvoq and added methathrexate on the weekends and Hydochlorquine to the mix...it seems all i am doing is taking meds with no end in sight...coming up to a year when all this started...very frustrated
Like
Helpful
HugInterested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.
Connect
I assume you have GCA since you've been prescribed Rinvoq. Has your doctor discussed Actemra with you? A lot of people on this forum including me have had good success with it. It can take up to 2 or 3 months to take full effect though.
I was only on the Rinvoq for 30 days. He put me on as i was tapering off to see if the Rinvoq would make a smoother transition to getting off the Decamethesone...it didnt work. I feel great (aside from shitty side effects on higher doses) but there have been 3 times of trying to come off the steroids with no success...each time worse then the last...I am beyond frustrated...sleep has been terrible, i have gained about 20 lbs since last November and most days im exhausted
What dose of Dexamethasone are you taking. It is about 5-6 times more potent and has a longer half-life than Prednisone. It is harder to taper off Dexamethasone.
Tapering off Prednisone is hard enough let alone taking something more potent. Not too surprising you feel so exhausted. I think @tuckerp has experience about Dexamethasone.
Rinvog was recently approved for GCA. I'm not sure how well it works for people. Methotrexate made me sicker the longer I took it but it had some benefits for reducing Prednisone.
It might be a good idea to get a second opinion about your diagnosis whatever it is. If it is PMR only, you are receiving some very powerful medications for that.
-
Like -
Helpful -
Hug
3 Reactionsthe diagnosis originally was PMR. i started on 4 (.5mg tablets) twice a day for 4 weeks, then 3 tablets twice per day for 2 weeks then 2 tablets twice a day for 2 weeks eventually getting to 1 tablet per day....at this stage, all of the inflammation would come raring back and then i would be put back on a higher dosage and start this process all over again. My family doctor believes we are dealing with much more than PMR-more like RA...
I self diagnosed myself and was using my wife's Dex. She had glioblastoma. I then got my Mayo rheumatologist to confirm diagnosis. Dadcue has more of a medical background and knows the risks. I self taught myself the risks thru my wife and I. Dex is the most powerful of the Corticosteroids. About 5 times stronger than prednisone. As you would suspect then all the side effects are then amplified to some degree. My wife or I both noticed almost immediate weight gain, jowly face, terrible skin discoloring and lesions, stomach issues, increased A1c, increased cholesterol, increased blood pressure, bone density, and increased issues with tapering. On the flip side all the things steroids are designed to help were also magnified. I cant say whether prednisone at the same equivalent dosage would be as bad. I can say the neuro oncologist treating my wife said Dex was the preferred treatment for immediate relief. Dadcue being in that field would be aware of the immediate side effects.