DorsetLadyPMRGCAuk volunteer

Have to say not sure your Rheumy has much of an idea of how to treat PMR-

He didn’t really give you time initially to taper successfully before adding in MTX - which as you discovered doesn’t suit everybody.

Reducing around the 7.5mg level can be tricky for many, it’s when your adrenal glands need to start thinking about starting to work again. Not sure whether you tried to continue tapering from then, but you obviously went below the level of Pred you actually need to control your illness. You are obviously lower than that now because you’re asking if you should go back to it.

The usual recommendation to catch a flare is to add 5mg to the dose you last felt okay (in your case not sure what that is), stay there for 5-10 days to clear out the built up inflammation, then drop back down to just above the last ‘good ‘ dose. Sometimes that can be done in one drop, sometimes you need to stagger it in two.

For example - if previously okay at 7.5mg - go up to 12,5mg - get stable then drop back down to 8mg - either in one, or initially to 10mg stay 5-7 days, then to 8mg.

I have no experience of hydroxychloroquine, but it is used in Rheumatoid Arthritis , and I think can be used, like the other drugs you’ve been on, as a a steroid sparer. If that’s wrong, happy to be corrected. If it is what I think, not sure it’s going to be any more help than others.

The only thing you can do to prevent GCA is to be on the correct dose of Pred, and discuss new symptoms with doctor.

You might like to read this - healthunlocked.com/pmrgcauk...

rosemw in reply to DorsetLady

Thank you very much for your valuable advice. I agree that I need control the inflammation now. I will talk to my rheumatologist soon.

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rosemw in reply to DorsetLady

Thank you for the link. There are a lot of good information.

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PMRproAmbassador

There is no evidence that hydroxycholoquine helps in most cases of PMR and so it is not included in the international recommendations for managing it although it is referred to. There is one paper claiming it works in all PMR - it is a single study, published on a (formerly at least) rather dodgy platform with a very poor peer review reputation.

ard.bmj.com/content/74/10/1799

Recommendation 7 deals with purported steroid sparers - and reading it again just now, I don't get the impression they hold out a lot of hope for them!

NO medications "control" the underlying autoimmune cause of the inflammation that causes the pain - pred manages the inflammation created so relieves symptoms and allows a better quality of life.

I really can only agree with DL - your rheumy obviously doesn't have any concept of how to deal with a patient whose PMR doesn't fit with his (incorrect) image of how it works.

"He told me he doesn't know what to do with my situation" - it is really fairly simple: give the patient enough steroid to manage the daily dose of new inflammation. If you go below that dose, which varies from patient to patient, the inflammation builds up again and the symptoms increase until you are back where you started. He has been in too much of a hurry - from that first reduction. MTX may help some people smooth out the discomfort of changing dose - but it won't help if the new dose is still too low. If MTX is going to help, it is likely to take weeks, if not months, to exert its effect in most patients. In the meantime you need enough pred. And even with MTX some people simply can't cope with a 2.5mg change in dose. Top experts say tapering steps should not be more than 10% of the current dose - and even that is too much for some.

You are never reducing relentlessly to zero from your starting dose: you are looking for the lowest dose that manages the symptoms as well as the starting dose did. In the early months that is likely to be higher than it will be later and it varies a lot initially. It takes 18 months for half of patients to get to 5mg/day consistently for 6 months - half take longer.

You have been badly messed about and to be honest, the best thing you can do is find a rheumy who knows what they are doing and treats the patient not the textbook he thinks he remembers reading. Your increase in symptoms and inflammation - which he can see from the figures - is because you are not on enough pred, plain and simple. PMR is a chronic condition - a single shot of steroid may help for a time but it wears off. Injections CAN be used but at the rate of a120mg depot Medrone shot every month - not a one-off.

The best protection against GCA is to be on enough pred for the PMR but if GCA is going to develop, even that isn't enough. There is no point worrying about it, cross the bridge when you get to it.

rosemw in reply to PMRpro

Thank you very much for your valuable advice. I tried to reach my Rms yesterday for a couple of times to discuss about increase prednisone dose to control my high inflammation. I couldn't reach him. Leave the message to him. I got phone call early morning. I didn't get up yet since last night didn't have good sleep. he left the message said he didn't have anything to offer to me since I had many side effects on the medicines he offered. He referred me to another Rms to get second opinion . " Thank God. I had made an appointment with another RMs on March 11. Hope this one can help me. Mainly, my situation still bad. This morning felt right side of large area back attached by my immune system, a lot of pain. Neck, head pain a little better than yesterday. Up back, shoulder still bad pain. Many other pain I already used to them. I took DorsetLady, and your suggestion, also read some papers, increase prednisone to 10 mg from 7 mg today. Hope in a few days will help control my inflammation. Thank you very much for DL, PMRpro and Jackoh's help. Especially felt discouraged from RMs, I could get help, good advises, support from this network. What a blessings!

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DorsetLadyPMRGCAuk volunteer in reply to rosemw

Let’s hope so, and if it does it might be sensible to stay at 10mg until you see new Rheumy- and good luck with that. Please keep us informed

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PMRproAmbassador in reply to rosemw

Your back problem could be myofascial pain syndrome effects and muscles that are tightening to protect themselves. Mine worsens with PMR activity.

It would be really helpful if you could write a bit about yourself on your profile and complete the details about country/region and so on. It does make a difference to what we suggest.

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Jackoh

Hi agree with all that has been said- you need a rheumy who knows what he is doing! One point though I would pick up on is when you had a steroid injection and you say” I felt great for 10 days, living like a normal person” Just as it has been said that you need enough pred to control the inflammation you also need to pace yourself and take sufficient rest. As soon as you feel better you can’t throw yourself back into loads of activity otherwise the PMR will come back and “bite” you the following days. Just take sufficient rest and pace when you are on a suitable dose to control the inflammation. You may not have meant at all that you continued at a pace that you would normally do but it still helps to realise that we have a systemic condition and we need to listen to our bodies

and slow down. . Let us know how you get on. 💐

rosemw in reply to Jackoh

Thank you very much for your good suggestion. I have slow down a lot since I have PMR 1 year and 9 months ago. But I am 59, I feel I still have to work. My work is not too bad stress normally. During covid time, I only work afternoon 3-4 hours, 4 days a week. But now feel hard to do it. I hope my PMR is in the control soon.

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Merk

Hello rosemw... I have had experience with hydroxychloroquine, a few years back I was prescribed it by my rheumatologist, continued on it for approx. one year. It did not help with reducing prednisone for me. I found what helped was changing to a Rheumatologist who didn't hurry me off Pred. and always following a very slow method of reducing, especially after 7mg.

Take Care

rosemw in reply to Merk

Thank you for sharing your experience. It help me. Best.

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