Jak Inhibitors for PMr

Posted by cheraloha @cheraloha, Aug 27 2:26pm

Hi, my rheumatologist is recommending a Jak inhibitor as a possible alternative to Prednisone - Rinvoq - has anyone tried it?

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Profile picture for cheraloha @cheraloha

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

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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.

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Profile picture for trina24 @trina24

What is that? Never heard of it.

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What is it?

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

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Profile picture for trina24 @trina24

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

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You are good … just keep doing the monthly Actemra infusion. I do Actemra infusions too. It works great for me.

How is Actemra working for you?

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Profile picture for tuckerp @tuckerp

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

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

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Profile picture for tuckerp @tuckerp

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

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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.

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Profile picture for Mike @dadcue

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.

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yes. I did not do anything until I turned 70. Then found out I was blocked 100% in the right carotid and 70% in the left. I had the left cleaned and decided I better pay attention.

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Profile picture for neenie12 @neenie12

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

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Yes . My cardiologist was referred to me by my Mayo clinic rheumatologist I was seeing for PMR. Both are Mayo Phoenix.

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Profile picture for Mike @dadcue

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.

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Thank you!

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Profile picture for neenie12 @neenie12

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 .

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Glad You are doing better….be selective with the statins. I had been on rosuvastatin (Crestor) 5 mg 3x /week for years with some muscle pain ( looking back). I went to a new cardiologist and she increased my statin to 10 mg daily and within 20 days I could barely walk from bilateral muscle pain. I told my pcp and the cardiologist I am not taking this anymore. I thought the pain would dissipate in a week or so. After 6 months and still in pain I was told I probably developed PMR from the statin. Put on 15 mg prednisone and in 3-4 days I was pain free. Now I am slowly tapering ( down to 3 mg) and hoping to get off for good.

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