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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Hydroxy costs me about $20/month, so cost is not that bad. That is just a little more than what Methotrexate costs me. I don't understand why my doc said to keep taking the Methotrexate when I take the Hydroxy. Now I am on two meds that affect my immune system and am dealing with sinus issues that maybe are made worse because of a weakened immune system. Just wish I could find answers. Wish a doctor would be willing to talk at length instead of herding you through in 5 or 10 minutes.

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@chzuck

Hydroxy costs me about $20/month, so cost is not that bad. That is just a little more than what Methotrexate costs me. I don't understand why my doc said to keep taking the Methotrexate when I take the Hydroxy. Now I am on two meds that affect my immune system and am dealing with sinus issues that maybe are made worse because of a weakened immune system. Just wish I could find answers. Wish a doctor would be willing to talk at length instead of herding you through in 5 or 10 minutes.

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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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@chzuck

While on Methotrexate and 7 mg of Prednisone, I would be awakened around 3am with pain in the front of both thighs and both shoulders. An increase to 8mg has seemed to take this away.

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I get pain and numbness in the front of my thighs upon standing or walking 20 minutes. It's a trapped nerve in the groin area.
I had it 30 years ago while pregnant.
I've gained 18 lbs in 17 months of prednisone. Down to 7mg daily. 20mg methotrexate split over two days self injected has helped the lower back pain so I can sit for a few minutes to get the feeling back in my legs. The pmr is mostly in the upper back from elbow to elbow. Doing the taper super slow. One half mg per month of the old pregnisone.

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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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@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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Lots of discussion on this thread to MTX. Generally the idea is to shut down your immune system as much as possible to allow you to get off the steroids. I find it pretty interesting you were able to make off it without any pain. Hydroxychloroquine and Methotrexate are both RA type drugs to do just that shut down your immune. Doing that also leaves you susceptible to may types of infections, viruses, eye problems, etc. The goal is to get you off steroids. Provided you dont have anything else going on. Having one autoimmune disease seems to open the door. However many on here say they dont work for PMR. In your case they worked. The issue is usually tapering off of steroids that creates new inflammation and can restart the PMR. I would think your goal and your Dr's would be to get the PMR under control to get off prednisone and then discontinue the other drugs. Taking both drugs your body is not able to respond to any kind of an immune threat. Right now you need to get PMR under control. But these drugs dont necessarily prevent PMR. They have some newer drugs that may help. Kevzara and Actemra.

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@tuckerp

Lots of discussion on this thread to MTX. Generally the idea is to shut down your immune system as much as possible to allow you to get off the steroids. I find it pretty interesting you were able to make off it without any pain. Hydroxychloroquine and Methotrexate are both RA type drugs to do just that shut down your immune. Doing that also leaves you susceptible to may types of infections, viruses, eye problems, etc. The goal is to get you off steroids. Provided you dont have anything else going on. Having one autoimmune disease seems to open the door. However many on here say they dont work for PMR. In your case they worked. The issue is usually tapering off of steroids that creates new inflammation and can restart the PMR. I would think your goal and your Dr's would be to get the PMR under control to get off prednisone and then discontinue the other drugs. Taking both drugs your body is not able to respond to any kind of an immune threat. Right now you need to get PMR under control. But these drugs dont necessarily prevent PMR. They have some newer drugs that may help. Kevzara and Actemra.

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The goal is to get PMR under control...the question is how ?without medications?

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@rosemargaret

The goal is to get PMR under control...the question is how ?without medications?

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I think most of us cannot do it without Corticosteroids. That is the drug of choice. Someone treating it without steroids is tougher than me. It can also be dangerous allowing further issues without taking it. The question was on the two immune blockers. Those are RA type drugs to help with prednisone induced flares when trying to taper. Lucky for me I was able to get off fairly quickly without the drugs. But you should be able to stop those after stopping your prednisone.

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When you say ‘immune blockers’ are you referring to anti-TNF drugs?

What is your current dosage of prednisone?

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@pb50

When you say ‘immune blockers’ are you referring to anti-TNF drugs?

What is your current dosage of prednisone?

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I was answering majryan61. read up a few messages. Your the RA expert.

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@tuckerp

Lots of discussion on this thread to MTX. Generally the idea is to shut down your immune system as much as possible to allow you to get off the steroids. I find it pretty interesting you were able to make off it without any pain. Hydroxychloroquine and Methotrexate are both RA type drugs to do just that shut down your immune. Doing that also leaves you susceptible to may types of infections, viruses, eye problems, etc. The goal is to get you off steroids. Provided you dont have anything else going on. Having one autoimmune disease seems to open the door. However many on here say they dont work for PMR. In your case they worked. The issue is usually tapering off of steroids that creates new inflammation and can restart the PMR. I would think your goal and your Dr's would be to get the PMR under control to get off prednisone and then discontinue the other drugs. Taking both drugs your body is not able to respond to any kind of an immune threat. Right now you need to get PMR under control. But these drugs dont necessarily prevent PMR. They have some newer drugs that may help. Kevzara and Actemra.

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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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