I wanna stop taking methotrexate and prednisone.

Posted by farnhamlaf1 @farnhamlaf1, Sep 26 8:12pm

Has anyone tried using turmeric instead of prednisone and methotrexate and wondering how the results are? I’m on 25 mg of methotrexate once a week and 5 mg of prednisone I’m willing to stop and take a chance and try the turmeric. Please respond.

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Profile picture for claudette2024 @claudette2024

Was Actemra prescribed for you due to GCA? It’s not for PMR I thought. .

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@claudette2024

I have multiple autoimmune disorders including PMR but not GCA.

Actemra works in the same way that Kevzara works. Actemra was the first IL-6 inhibitor and has been used for RA and other autoimmune disorders for a long time. Actemra was FDA approved for GCA in 2017. I started Actemra in 2019 before Kevzara was FDA approved for PMR. My rheumatologist believed that Actemra "should work" for PMR after research showed that it worked for GCA.
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" The high cost of clinical trials combined with the availability of lower-cost biosimilars for Actemra makes it an unlikely path for the drug's manufacturer, Genentech, to seek FDA approval for polymyalgia rheumatica (PMR). "

It is doubtful that Genetech will seek an additional FDA approval for PMR because it costs so much money to do the clinical trials to get FDA approval. Since Actemra is no longer patented, there are already biosimilars on the market that compete with Actemra at a lower cost. Research and development costs for medications to get the initial FDA approval for a specific diagnosis are astronomical.

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Profile picture for Mike @dadcue

"What happens if people quit the methotrexate or kevzara but keep tapering the prednisone? Anyone know?
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Probably nothing changes ... You just keep trying to taper off Prednisone and hope you don't have a relapse and side effects from long term prednisone use.

I stopped methotrexate because of elevated liver enzymes and nausea. Methotrexate was helping me decrease my Prednisone dose but I hated the retching I had every morning. When I stopped methotrexate, I had to increase my Prednisone dose again.

I don't have any experience with Kevzara. My rheumatatolgist wanted me to try Actemra instead.

Actemra has been a blessing. I tapered off prednisone relatively quickly compared to the previous 12 years. I regret that Actemra wasn't offered to me sooner because I had so many relapses when I tried to taper off Prednisone. I didn't mind the relapses as much as all the side effects from Prednisone. My experience with 12 years of long term Prednisone use was an insidious downward spiral of my overall health and well being.

Prednisone is still used for rapid initial symptom control. However, the goal of "modern treatment" is to shift patients to alternatives to prednisone to avoid the severe long-term complications of prednisone.

I had what is called "relapsing PMR" when I tried to taper off Prednisone. On Actemra, I have had 5 years of sustained remission with no relapses. Actemra has also improved my quality of life compared to when I took Prednisone. There is a reason why alternative medications to treat PMR are called "steroid sparing medications."

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@dadcue
Thank you.
My rheumatologist is leaving the decision up to me.
Methotrexate or Kevzara or Rincoq. She did not mention Actemra. After a year of pred I need to get off. My body looks like a war zone.

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Profile picture for claudette2024 @claudette2024

@dadcue
Thank you.
My rheumatologist is leaving the decision up to me.
Methotrexate or Kevzara or Rincoq. She did not mention Actemra. After a year of pred I need to get off. My body looks like a war zone.

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I wish you luck with whatever you decide.

Rinvoq is the latest modern treatment for GCA that was FDA approved very recently in April 2025. If Actemra stops working for me I would likely be switched to Rinvoq. It is also FDA approved for some of the other autoimmune disorders that I have.

You must have a good rheumatologist. She is aware of the latest treatment options that are available. Rinvog works differently compared to both Actemra and Kevzara. It comes in pill form so no injections or infusions.

Any of these medications might work better than methotrexate. Sometimes insurance companies require that methotrexate be tried first before approving the more expensive biologics.

I think good rheumatologists want their patients off Prednisone as soon as possible. These alternatives to prednisone for PMR/GCA are seen as steps in the right direction.

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Profile picture for Mike @dadcue

"What happens if people quit the methotrexate or kevzara but keep tapering the prednisone? Anyone know?
---------------------
Probably nothing changes ... You just keep trying to taper off Prednisone and hope you don't have a relapse and side effects from long term prednisone use.

I stopped methotrexate because of elevated liver enzymes and nausea. Methotrexate was helping me decrease my Prednisone dose but I hated the retching I had every morning. When I stopped methotrexate, I had to increase my Prednisone dose again.

I don't have any experience with Kevzara. My rheumatatolgist wanted me to try Actemra instead.

Actemra has been a blessing. I tapered off prednisone relatively quickly compared to the previous 12 years. I regret that Actemra wasn't offered to me sooner because I had so many relapses when I tried to taper off Prednisone. I didn't mind the relapses as much as all the side effects from Prednisone. My experience with 12 years of long term Prednisone use was an insidious downward spiral of my overall health and well being.

Prednisone is still used for rapid initial symptom control. However, the goal of "modern treatment" is to shift patients to alternatives to prednisone to avoid the severe long-term complications of prednisone.

I had what is called "relapsing PMR" when I tried to taper off Prednisone. On Actemra, I have had 5 years of sustained remission with no relapses. Actemra has also improved my quality of life compared to when I took Prednisone. There is a reason why alternative medications to treat PMR are called "steroid sparing medications."

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I quit taking Methotrexate a year ago, but continue my tapering of Prednisone. I'm now at 5 mg Prednisone. I will begin tapering 1/2 mg per 4 weeks. I'm hoping this slow tapering works.

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I am on methotrexate and prednisone too. My doctor had me on 10 mg of prednisone daily and 20 mg of methotrexate once a week. I have been reducing the prednisone by 1 mg every two weeks and I am down to 6 mg right now. I feel great. I should be off prednisone if everything goes well in December. About two months ago I started feeling good enough to walk and hike. I am increasing the distance and hills gradually but still feeling good. I think the exercise is helping me a lot. I wish you the best however you proceed!!

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Profile picture for farnhamlaf1 @farnhamlaf1

I appreciate the response. I done feel the methotrexate is doing anything (14 weeks now)
And would like to taper off of prednisone (of course)
Have been investigating Tumeric and it’s affects on inflammation

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@farnhamlaf1 By all means take some turmeric but fresh is better than capsules, or organic dry powder is also good, and preferably in cooking were it is absorbed slowly with other healthy nutrients from food. People have gotten turmeric toxicity from taking too many of the capsules too quickly. Does it work? It does help with general inflammation and contributes to good health. But PMR is a big illness with very specific inflammatories bombarding your system - turmeric or any of the other supplements (like rose hip vital) are unlikely to help much. I was on a low inflammatory diet which included lots of turmeric for 3 years prior to PMR hitting. It didn't stop the PMR from turning up, and increasing the amount of turmeric in the diet hasn't helped since, nor rose hip vital or the other anti-inflammatory supplemnts I have tried.

Methotrexate may take longer than 14 weeks to work and it doesn't work for many who have PMR. Recent research has suggested it is not really worthwhile. But it does work for some so it's why we give it a go. Watch carefully for side effects from methotrexate and perhaps reach an agreement with your doctor on a time limit for seeing if it does any good. In my case I ended up in hospital very ill from methotrexate toxicity. My doctor had way too much faith in it being a miracle drug, because he had one PMR/GCA case were it worked successfully.

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