My PMR is atypical ,treatment resistant to steroids so have endured months of agony and extremely high inflammatory markers .Diagnosed Dec 24 . Almost immobilised at times with pain .Have been hospitalised for pain mgt , pneumonia ,severe dehydration with gastro as well as at first diagnosis … all since Dec 24 and narcotic analgesics no help just made me sleepy and I don’t like taking meds ! Stopped after 3weeks took Panadol regularly.
High dose steroids initially with Methotrexate Panadol No GCA on PET just bone marrow inflammation. Have tried Humira injections every 2weeks .. no relief. Finally rheumatologist suggested RINVOQ and it has given me relief from the pain and stiffness I’m still weak and my dexterity in hands not as it used to be . In saying that Ive started weights with exercise physiologist walking 5-7kms most days or pool if not walking . Prior to all this I was on no meds and very strong going to gym 3-4 times week only ever in hospital for appendix and babies ! . This has changed my life in so many ways but could be worse things .
The RINVOQ is definitely working as the two weeks I couldn’t get the drug the pain started to return … plus my markers have decreased ! At one point they were as high as 300 but think that was a few months ago when I had pneumonia . So now I’m on 3mgs Prednisone and hope to be off it soon. No methotrexate and only RINVOQ daily. The side effect for me is high cholesterol just found out it’s 9 !! Looking like statins at this point. Hope you get relief soon. It’s an awful disease .
I have PMR and GCA. I started at 60 mg of prednisone. I stopped drinking any alcohol until I got down to 20 mg. Since then I have had about 3 drinks a week, either wine or beer. I haven't had any issues. I stopped taking prednisone about 2 weeks ago.
My PMR is atypical ,treatment resistant to steroids so have endured months of agony and extremely high inflammatory markers .Diagnosed Dec 24 . Almost immobilised at times with pain .Have been hospitalised for pain mgt , pneumonia ,severe dehydration with gastro as well as at first diagnosis … all since Dec 24 and narcotic analgesics no help just made me sleepy and I don’t like taking meds ! Stopped after 3weeks took Panadol regularly.
High dose steroids initially with Methotrexate Panadol No GCA on PET just bone marrow inflammation. Have tried Humira injections every 2weeks .. no relief. Finally rheumatologist suggested RINVOQ and it has given me relief from the pain and stiffness I’m still weak and my dexterity in hands not as it used to be . In saying that Ive started weights with exercise physiologist walking 5-7kms most days or pool if not walking . Prior to all this I was on no meds and very strong going to gym 3-4 times week only ever in hospital for appendix and babies ! . This has changed my life in so many ways but could be worse things .
The RINVOQ is definitely working as the two weeks I couldn’t get the drug the pain started to return … plus my markers have decreased ! At one point they were as high as 300 but think that was a few months ago when I had pneumonia . So now I’m on 3mgs Prednisone and hope to be off it soon. No methotrexate and only RINVOQ daily. The side effect for me is high cholesterol just found out it’s 9 !! Looking like statins at this point. Hope you get relief soon. It’s an awful disease .
I have genetic cholesterol issues. prednisone increased my cholesterol significantly. Be careful of the statins as treatment. They have their own issues with side effects. I think those of us lucky enough to be in this group all have some reactions to different medications. Zetia worked about the best with few side effects but the low dose of 10mg was not effective at reducing my total numbers. I switched to a rather expensive epi pen drug called Repatha. shot twice a month. It has dropped my total numbers and LDL in half. No side effects in 3 years. good luck with RINVOQ
I was diagnosed with PMR/GCA July 2024. Began 60 mg. of Prednisone. I quit drinking completely, until I got to around 15 mg. Since then, I have an occasional glass of wine, beer, or old fashioned. I was never a big drinker, but I seem to have lost my appetite for alcohol. I might have 2-3 drinks/month.
I was always a big foodie, too. Loved to cook and eat 'interesting' things. I've lost my appetite and can't eat like I used to. I've tapered to 3 mg. of Prednisone and get monthly Actemra infusions.
I was diagnosed with PMR/GCA July 2024. Began 60 mg. of Prednisone. I quit drinking completely, until I got to around 15 mg. Since then, I have an occasional glass of wine, beer, or old fashioned. I was never a big drinker, but I seem to have lost my appetite for alcohol. I might have 2-3 drinks/month.
I was always a big foodie, too. Loved to cook and eat 'interesting' things. I've lost my appetite and can't eat like I used to. I've tapered to 3 mg. of Prednisone and get monthly Actemra infusions.
It seems like prednisone slows down your metabolism and also causes your body to store more fat, so you don't need to eat as much as before. I noticed that my metabolism got back to normal as I dropped down to 2 mg and lower. It took me a while to get used to eating like I used to, but I'm enjoying it now.
It seems like prednisone slows down your metabolism and also causes your body to store more fat, so you don't need to eat as much as before. I noticed that my metabolism got back to normal as I dropped down to 2 mg and lower. It took me a while to get used to eating like I used to, but I'm enjoying it now.
Prednisone mobilizes your reserves while depleting muscles and bones. It increases the circulating blood glucose level that might be needed if there was an emergency. However, when there isn’t the emergency the body expects, the excess glucose gets stored as fat.
It is all part of the “fight or flight” response to stressful events when cortisol is supposed to be released. When there is circulating prednisone all the time we are in a constant fight or flight state. However, we sit around in pain and do nothing to burn the glucose. Our entire metabolic processes get out of whack.
I think the insatiable hunger while on prednisone happens when the body tries to build up its reserves but we are still on prednisone. Everything we eat gets stored as fat and isn’t metabolized correctly.
Connect
Connect
Like
Helpful
Hug
I'm interested in this topic as well. I didn't get much of a response.
https://connect.mayoclinic.org/discussion/fda-approves-rinvoq-upadacitinib-for-gca/
------------------------
My interest stems from a dual diagnosis of PMR and spondyloarthritis. Rinvoq was recently FDA approved for GCA in addition to previous approvals for certain types of spondyloarthritis.
https://www.rheumatologyadvisor.com/news/fda-approves-rinvoq-for-giant-cell-arteritis/
My PMR is atypical ,treatment resistant to steroids so have endured months of agony and extremely high inflammatory markers .Diagnosed Dec 24 . Almost immobilised at times with pain .Have been hospitalised for pain mgt , pneumonia ,severe dehydration with gastro as well as at first diagnosis … all since Dec 24 and narcotic analgesics no help just made me sleepy and I don’t like taking meds ! Stopped after 3weeks took Panadol regularly.
High dose steroids initially with Methotrexate Panadol No GCA on PET just bone marrow inflammation. Have tried Humira injections every 2weeks .. no relief. Finally rheumatologist suggested RINVOQ and it has given me relief from the pain and stiffness I’m still weak and my dexterity in hands not as it used to be . In saying that Ive started weights with exercise physiologist walking 5-7kms most days or pool if not walking . Prior to all this I was on no meds and very strong going to gym 3-4 times week only ever in hospital for appendix and babies ! . This has changed my life in so many ways but could be worse things .
The RINVOQ is definitely working as the two weeks I couldn’t get the drug the pain started to return … plus my markers have decreased ! At one point they were as high as 300 but think that was a few months ago when I had pneumonia . So now I’m on 3mgs Prednisone and hope to be off it soon. No methotrexate and only RINVOQ daily. The side effect for me is high cholesterol just found out it’s 9 !! Looking like statins at this point. Hope you get relief soon. It’s an awful disease .
-
Like -
Helpful -
Hug
1 ReactionHas anyone with PMR ever had a glass of red wine with Saturday nite dinner. I'm om 20 mg predisone newly diagnosed. Tx
-
Like -
Helpful -
Hug
1 ReactionI have PMR and GCA. I started at 60 mg of prednisone. I stopped drinking any alcohol until I got down to 20 mg. Since then I have had about 3 drinks a week, either wine or beer. I haven't had any issues. I stopped taking prednisone about 2 weeks ago.
What is that? Never heard of it.
I have genetic cholesterol issues. prednisone increased my cholesterol significantly. Be careful of the statins as treatment. They have their own issues with side effects. I think those of us lucky enough to be in this group all have some reactions to different medications. Zetia worked about the best with few side effects but the low dose of 10mg was not effective at reducing my total numbers. I switched to a rather expensive epi pen drug called Repatha. shot twice a month. It has dropped my total numbers and LDL in half. No side effects in 3 years. good luck with RINVOQ
I was diagnosed with PMR/GCA July 2024. Began 60 mg. of Prednisone. I quit drinking completely, until I got to around 15 mg. Since then, I have an occasional glass of wine, beer, or old fashioned. I was never a big drinker, but I seem to have lost my appetite for alcohol. I might have 2-3 drinks/month.
I was always a big foodie, too. Loved to cook and eat 'interesting' things. I've lost my appetite and can't eat like I used to. I've tapered to 3 mg. of Prednisone and get monthly Actemra infusions.
It seems like prednisone slows down your metabolism and also causes your body to store more fat, so you don't need to eat as much as before. I noticed that my metabolism got back to normal as I dropped down to 2 mg and lower. It took me a while to get used to eating like I used to, but I'm enjoying it now.
-
Like -
Helpful -
Hug
1 ReactionPrednisone mobilizes your reserves while depleting muscles and bones. It increases the circulating blood glucose level that might be needed if there was an emergency. However, when there isn’t the emergency the body expects, the excess glucose gets stored as fat.
It is all part of the “fight or flight” response to stressful events when cortisol is supposed to be released. When there is circulating prednisone all the time we are in a constant fight or flight state. However, we sit around in pain and do nothing to burn the glucose. Our entire metabolic processes get out of whack.
I think the insatiable hunger while on prednisone happens when the body tries to build up its reserves but we are still on prednisone. Everything we eat gets stored as fat and isn’t metabolized correctly.
-
Like -
Helpful -
Hug
2 ReactionsJak inhibitors help to reduce inflammation in autoimmune diseases. My rheumatologist is suggesting I try it. Still trying to learn more myself.