Jak Inhibitors for PMr

Jak inhibitors help to reduce inflammation in autoimmune diseases. My rheumatologist is suggesting I try it. Still trying to learn more myself.

What is that? Never heard of it.

Don’t know what that is? I am on Infusion Actemra

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 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

One of my daughters has the familial type of high cholesterol. She is the last person that you would suspect to have high cholesterol. I don’t know why it was checked when she was 16.

My daughter is adopted. She says how glad she is because she doesn’t have my genes. She has witnessed so many things that have happened to me. I don’t tell her that I’m worried about her genes too.

She stopped her statin once because I was talking about how my statin might be causing some problems for me. I didn’t mean she should stop her statin. Her cardiologist set her straight when her cholesterol level was over 300.

Thankyou for that information regarding your treatment for genetic high cholesterol.Did you see a cardiologist ?

I think Jak inhibitors also reduce IL-6 levels. IL-6 is the cytokine which is implicated the most for PMR and GCA. With a Jak inhibitor you might reduce both IL-6 and Jak inflammation pathways

There aren’t single inflammation pathways independent of others. It is a complicated network of inflammatory processes with many actions and reactions taking place instantly in real time. A single dose of prednisone or any medication can’t replicate what the body does.

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 .