1. < Polymyalgia Rheumatica (PMR)

Methotrexate to wean off long term Prednisone for PMR

Posted by marymv @marymv, May 10 6:03pm

Hello everyone,
I have been on Prednisone for 3 yrs. Developed Cataracts and a weight gain of 15pds from it…so far. Can’t seem to stay below 7mg without a flair. Time to wean off Prednisone. Started on Methotrexate 4 days ago. The Rheumatologist sort of poo poo’d Kevzara. I have been researching and it seems one has to fail on Methotrexate before insurance will approve a biologic…cost I believe. So far I have had no problems but the serious side effects and lifestyle changes connected with Methotrexate ie possible hair loss and no more than 2 glasses of wine per week are down right depressing. Any thoughts? Thank you.

Best,
Mary

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tuckerp | @tuckerp | Jun 11 2:16pm
In reply to @majryan61 "Thank you @tuckerp , got back my ESR/CRP results from yesterday. Very very disappointed. ESR is..." + (show)
@majryan61

Thank you @tuckerp , got back my ESR/CRP results from yesterday. Very very disappointed. ESR is 58 and CRP 31.9. Rheumatologist returns to office from vacation 6/12. My guess is she’ll raise the prednisone. 🤨 I always dread my methotrexate day because it makes me so tired and lethargic. The only thing I can say that change in the last month was my exercise. I typically did water aerobic 3 times a week and due to travel and out of town guests it went down to once a week. I still got in two days of 10k-12k steps. Could the reduction in exercise have raised these numbers ?

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Hard to say. Many have said a night out or change in excercise or gardening, or any number of things. I dont think anyone knows. Maybe the guest added stress. Well you cant go on in pain. I would up the prednisone to where your comfortable and just try to work down again. Its not the end of the world. Just a little setback. You know how to get off and you know about your cortisol levels. So your a lot more educated. My point in your original message was that I dont think either of the RA drugs are doing anything for PMR. Talk to your Dr about switching to something else. They have a couple of PMR drugs now in Kevzara and Actemra. Maybe a different RA drug. Like Humira. But that is not something I know much about.

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pb50 | @pb50 | Jun 11 2:55pm
In reply to @majryan61 "Hi All, I was diagnosed with PMR 12/2020. I was on only Prednisone for 9 mons,..." + (show)
@majryan61

Hi All,
I was diagnosed with PMR 12/2020. I was on only Prednisone for 9 mons, the referred to a Rhematologist who prescribed Hydroxychloroquine and Methotrexate. I was on 15 Ming of Prednisone, Hydroxychloroquine twice a days and methotrexate 25mg once a week.
I had life stressors in 2021 and a big one 2022(Brother killed MVA) which trigger the PMR. I continued all meds and in 2023 tapered off Prednisone by July 2023. Staying on Hydroxychloroquine and methotrexate. This was all pain free.

Late Dec and 1st wk of January 2024I got a virus (not COVID) which was cough, body aches, headache, lethargic. Last 2 wks. Then, the thigh and hip pain came back, along with hand/finger discomfort. ESR and CRP done and sedrate was 48 and CRP 25. Rheumatologist put me back on 10mg of Prednisone. Repeat markers 2/29 still high Esr(now 51) and CRP 24. Stay on same meds. Repeat markers 4/1/24, esr 28 and cRP 16.5. Repeat markers 5/1/24, ESr 22 and CRP 22.9, told to reduce Prednisone to 9mg. Had markers drawn today (6/10).

So, my question is what is the purpose of the hydroxychloroquine and methotrexate if it can can handle a little virus? I’ve been on these since Sept 2022.

Any advise? I don’t see my Rheumatologist into September.
Thanks you

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I wouldnt think of your immune system as on or off - or shut down or not. I think of my RA drugs as a thermostat instead of an on/off switch. Your disease has your immune system temperature turned up too high and the drugs - like Methotrexate - are there to turn it down. But not all the way off because you need SOME ability to fight off infection, even if that ability is somewhat impaired.
So maybe your immune system in its current state couldn't fight off that virus but that means methotrexate and prednisone were working as intended

Make sense?

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sandmason | @sandmason | Jun 11 3:21pm

In a brand new video on Youtube, the doctor said it takes 6 months for methotrexate to begin working. I would not take it, it's more toxic than Plaquenil, and in some studies show no benefit. I use LDN, 4.5 mg, prednisone 4mg and 300 Plaquenil. LDN has made me lose 2# a month since I started it.
https://www.youtube.com/watch?v=mWBPr-zZI44&t=417s

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chzuck | @chzuck | Jun 16 3:07pm
In reply to @tuckerp "Your probably still on Prednisone? I didnt read through all the threads. My take is if..." + (show)
@tuckerp

Your probably still on Prednisone? I didnt read through all the threads. My take is if your on Steroids still then you have a very high risk of adrenal failure. Depends on how long you have been on. The adrenal startup when you taper is causing the increased pain. They probably are trying to zap your immune system into not over reacting to get you off the prednisone. These drugs might be better at RA as well. You can probably taper these back as soon as you get off prednisone. That should be your goal. If your not on prednisone then I am not sure either. Yes. 3 months to get an appointment and 10 min if your lucky.

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Yes, still on Prednisone @ 8mg. Still have annoying pain many times around 3am. Cannot find a position in which it goes away. I will ask my Doc if I can stop Methotrexate since it appears to have done nothing. Thinking it may be time to have a new set of eyes look at my situation.

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1 reply
chzuck | @chzuck | Jun 16 3:22pm
In reply to @linda7 "I am getting the Kevzara for free. I called Kevzara Connect at 844-538-9272. They are very..." + (show)
@linda7

I am getting the Kevzara for free. I called Kevzara Connect at 844-538-9272. They are very friendly and helpful. I have only been on it 10 days and was told it takes 2 weeks to feel an effect. I can start tapering off the prednisone at 6 weeks. The best thing so far is that I was taken off the methotrexate and just take 6 mg prednisone. That drug had some bad side effects and wasn't helping, after initially allowing me to drop down on the prednisone from 8 mg. The shoulder pain that was my main PMR symptom is better and I feel pretty good during the day. Now I have pain in the fronts of my thighs, which started before the Kevzara, and wakes me up around 2 AM. I'm not sure what's going on with that and will have to see how the Kevzara will affect it.

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Interesting. Shoulder pain was the start of my PMR diagnosis. I also am awakened around 2 or 3 am with annoying pain in my lower legs. Once I get out of bed and move around some, a lot of the pain goes away. Also dealing with neck pain from arthritis/degeneration issues. Added to that, I have an interior/exterior torn meniscus. At times I don't know if my pain is caused by PMR or just plain arthritis/degeneration issues. I do know pain is frustrating!

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marg47 | @marg47 | Jun 18 6:31am
In reply to @chzuck "Yes, still on Prednisone @ 8mg. Still have annoying pain many times around 3am. Cannot find..." + (show)
@chzuck

Yes, still on Prednisone @ 8mg. Still have annoying pain many times around 3am. Cannot find a position in which it goes away. I will ask my Doc if I can stop Methotrexate since it appears to have done nothing. Thinking it may be time to have a new set of eyes look at my situation.

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I have been on both Prednisolone abd Methotrexate. The only thing Methotrexate did was made my hair fall out and thin dramatically, since I stopped it my hair loss has stopped.

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