Weaning off of all medicine - prednisone and methotrexate

Posted by rl24 @rl24, Sep 26, 2024

I asked my Rheum about ending all medicine - what would happen from the inflammation. She expressed concern about the inflammation spreading to the cardio system causing problems with the vascular system. I have not been able to get past 7mgs of prednisone without a flare, so she has started me on methotrexate. I am so tired of taking medicines with such awful side effects. Frustrated. Any thoughts?

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.

Profile picture for mtr2601 @mtr2601

I have been longing to get off the meds for many months. Currently at 3.25mg Prednisone and 'stuck' also tried Methotrexate and couldn't tolerate it. On 300mg Plaquinil which helped me get from 7mg Pred to 3.25mg but doesn't seem to be helping anymore and may be causing dizziness. My GP is now suspecting the Plaquinil might be giving me cardiac side effects...feels like a no win situation sometimes. Is it better to take your chances with the background inflammation or roll the dice on the horrid side effects of medication. I know which way I'm leaning but as a former RN I am very sceptical about traditional medicine.

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I was diagnosed 2yr ago. I'm now down to 2.5 pred every other day and 8little methotrexate weekly. My osteoarthritis is worse. I'm skeptical of traditional medicine. That's what caught my eye in your post. I somehow bumped into a website about DMSO. I don't suppose you heard of it because medical schools won't touch it. I started using it in a creme form a week ago with huge benefit to my knee. It's a huge topic and worthy of being looked into. I wonder if it will enable me to quit the pred and meth. I certainly hope so but more importantly think I might avoid a knee replacement. It's that amazing.

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Profile picture for bfh3 @bfh3

Sorry to read this. I know what you mean. I was diagnosed May 2023, was initially prescribed too low a dosage of prednisone, and could not get out of bed without help 2 weeks later. Dosage was increased, which eliminated the pain for a long time, until I was down to about 3 mg this past February. My doc started me on 15 mg weekly methotrexate at that point, and I've now been off prednisone for about 6 weeks, but he said I'll likely need to stay on methotrexate for at least another year, probably for the concerns you mentioned. I'm glad to be off prednisone, but still feel fatigued often, but for me it has been a fair trade, to be without the flare pain. I had a bone density test yesterday, to see if being on prednisone for 15 months caused notable issues with my bone density. I'm hoping that since I'm slightly young for having PMR (53) that maybe it didn't cause notable damage, but we'll see!

I hope that you get off the prednisone soon! For me, the methotrexate seems to have worked, and I hope it does the same for you. I really hate being on meds, but it is good to be off the prednisone.

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It's nice to read this. I am 57 and was diagnosed 3 years ago. I initially started on 20mg of prednisone and got down to 1mg in the first year. The following 2 years have been continual flare ups and I am now on 5mg and struggling to get lower. My consultant has suggested methotrexate, but I was put off by the side effects particularly hair loss. I understand you can't stay on prednisone for ever and this is an option to come off it so feel I have no choice, but good to read a write up that has worked 🙂

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Profile picture for amandasmith007 @amandasmith007

It's nice to read this. I am 57 and was diagnosed 3 years ago. I initially started on 20mg of prednisone and got down to 1mg in the first year. The following 2 years have been continual flare ups and I am now on 5mg and struggling to get lower. My consultant has suggested methotrexate, but I was put off by the side effects particularly hair loss. I understand you can't stay on prednisone for ever and this is an option to come off it so feel I have no choice, but good to read a write up that has worked 🙂

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Hello @amandasmith007, Welcome to Connect. Sorry to hear you are struggling getting off of prednisone but I don't think you are alone. My first time with PMR took 3-1/2 years to taper off with the last six months going back and forth between 1 mg and 1/2 mg until I could finally taper off. There is another discussion that might be interesting if not helpful:
-- If you have tapering problems below 5 mg this might explain why.
https://connect.mayoclinic.org/discussion/if-you-have-tapering-problems-below-5-mg-this-might-explain-why/
There are also quite a few other discussions on methotrexate that you might find helpful. Here's a link that shows other member discussions and comments on methotrexate - https://connect.mayoclinic.org/search/?search=methotrexate+for+PMR.

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I have been with PMR for 5 years and we started tapering off the medications (Prednisone and Methotrexate) but it is not working. It looks like I have a flare up again. Any suggestions are well received.

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Profile picture for sastrep @sastrep

I have been with PMR for 5 years and we started tapering off the medications (Prednisone and Methotrexate) but it is not working. It looks like I have a flare up again. Any suggestions are well received.

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How fast. Is taper? What % drop, and hold at that for how long?
Supplement with Tylenol for arthritis, 2 in morning, and 2 at bedtime if need be.

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Profile picture for sastrep @sastrep

I have been with PMR for 5 years and we started tapering off the medications (Prednisone and Methotrexate) but it is not working. It looks like I have a flare up again. Any suggestions are well received.

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Have you tried Kevzara? It can take several months to take effect, but it works very well for some people. I take a similar drug, Actemra, and I'm completely off prednisone and don't have any symptoms of PMR or GCA.

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Profile picture for tweetypie13 @tweetypie13

How fast. Is taper? What % drop, and hold at that for how long?
Supplement with Tylenol for arthritis, 2 in morning, and 2 at bedtime if need be.

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PS: ditto, ask Dr Abt Kevzara. I’ve been successful with it.

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Profile picture for tweetypie13 @tweetypie13

How fast. Is taper? What % drop, and hold at that for how long?
Supplement with Tylenol for arthritis, 2 in morning, and 2 at bedtime if need be.

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From 5 milligrams every day to 5 milligrams every other day.

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Profile picture for sastrep @sastrep

I have been with PMR for 5 years and we started tapering off the medications (Prednisone and Methotrexate) but it is not working. It looks like I have a flare up again. Any suggestions are well received.

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After 5 years of Prednisone with relapses there is more than enough justification to try a biologic. Kevzara is the logical choice for PMR alone. If GCA or vasculitis is involved, maybe Actemra is now the best alternative to Prednisone. There's even more justification to try a biologic if methotrexate doesn't work. Regardless of what you try next ... you will still need to continue prednisone until an alternative is found. Research and medical guidelines support a gradual tapering approach of Prednisone to allow the body's adrenal glands to recover, especially after long-term use.

Other than a slow and gradual taper of Prednisone, there is no evidence based taper plan that works the best for everyone.

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Profile picture for sastrep @sastrep

From 5 milligrams every day to 5 milligrams every other day.

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Did your Dr give you any advice?
Maybe methotrexate is not the correct biologic for you.
Maybe another like Kevzara might work.

Are you pain free?
How long have you been at 5 mg?
My PERSONAL experience is 2 weeks pain free before taper……

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