New to community--Living with PMR

Hi all...USA resident here, and about a year or so into the PMR life. Feel as though I have gone through the stages of grief...was definitely in denial for a long time no matter HOW much I hurt or how stiff I was. Finally being a grown up. My doctor (third one) is rheumatologist and trying to get me to biologics to get the pred down. I can't seem to successfully reduce dose to a "safe" level (doc says no more than 7.5 mg). Right now am on 12.5 mg but do have some stiffness and pain ....which I don't mind so much as long as I can go to work and function. It's like balancing to put up with the pain/stiffness and then as low a dose of pred to minimize the side effects. Gained about 20 pounds when I was up to 25 mg. Haven't reduced weight too much but learning patience. My insurance requires step therapy to go from pred to biologics so have to try methotrexate or hydro...quine or something like that. I picked up the methotrexate prescription and have been staring at it for a week, not wanting to take on all of those side effects and not see any benefit for 2-3 months, IF I see any benefit at all! I know the pred is bad on the body but at this lower dose seems not so bad, but doc is insistent on wanting me to get off of it and/or down to much lower dose. Any thoughts on this? Again, thank you all for sharing....it is wonderful for me to be able to read your posts and am so sorry that so many of you are in really rough situations much worse than mine.

[PMRpro Ambassador]

I think your rheumy is being hasty in complaining about you still being stuck at 12.5mg after only a year - especially if you were up to 25mg at any point. And how are you reducing? If you are trying to step down more than 1mg at a time you will very likely struggle and 1/2mg is far preferable.

How much is he going to cash in by getting you on to a biologic? There is next to no evidence they help in PMR and the international recommendations for the management of PMR, published by the ACR and EULAR (so accepted by the US rheumatology college), say so in Recommendation 8. They DO say that the results of current studies MAY change that in the future but at present any use of biologics in PMR is off-label. With all that entails - as I understand it there is no responsibility on the part of the manufacturer if anything goes wrong. Biologics are also not sweeties.

rheumatology.org/Portals/0/...

PS - is he going to re-diagnose you with RA to get insurance cover for a biologic for PMR? Or does your insurer not care about paying out the high cost of biologics? And which one does he intend using? Tocilizumab ($17K/year) is the only one with any real evidence - and that is only in half a dozen cases.

[Hidden in reply to PMRpro]

Hi PMRPro! Thank you SO much for responding. Just having someone communicating with me who "gets it" is fantastic! Telling people about this disease is disheartening. They don't get it at all, but have lots of advice. LOL.

I like my rheumy, but am feeling less confidence in him for some of the reasons you state in your comments. Tapering has been too rapid. I did slow down to 1 mg reduction every 3-4 weeks once at 10 mg but then things went bad (severe pain/stiffness) and I went back up to 15. I did that myself...didn't wait until I went to see or talk to doctor because I was in misery. Perhaps overdid it by going up that high.

I need to just tell the doctor I want to stay on pred and just do it the slower way. If he won't do that, I'll find someone else to go to.

I am considered an atypical patient. Sed rate and CRP were only slightly elevated--closer to normal when I first got this disease. All symptoms pointed to PMR though, and then rapid response to pred, BUT in order to completely eliminate all pain and stiffness had to go to 25 mg. Right now I have both pain and stiffness but manageable. Is it usual for PMR patients to lower dose and still have some symptoms like pain/stiffness, but at manageable levels? Or is it more usual for patients to take the pred, become completely pain free, taper slowly, remain pain free all the way down to zero? this would be assuming no "relapse." I guess I am asking if I am in relapse now because I do have pain/stiffness but it's relatively mild and I can function pretty normally. Should I have increased dose to level that completely eliminated pain/stiffness again? And then taper again? Hope this makes sense.

Thank you again so much for responding and for the link to the very informative E

EULAR paper. I appreciate your thoughts more than you know!!

P.S. I don't know the answers to some of the questions you asked. I was not ignoring your questions.

[Ellie135 in reply to Hidden]

Hi Hidden it amazes me how we are given this diagnosis of PMR, given PRED and told to go away and reduce to 5mg. All the questions you have just asked in your post should be part of the diagnosis process. My G.P was the same, I found out about the ins and outs of PMR from this forum. Good luck in your journey and here's hoping you have many pain free days ahead. X

[polkadotcom]

Hello and Welcome from the UK, not that you want to be here! You are right, day-to-day life is a balancing act, particularly if you are still working.

I have developed adrenal insufficiency so will be on Pred for life, somewhere around 5 - 7.5mg. Does it bother me? No, I only think of it when answering posts as I enjoy the quality of life I have while taking it. I have no noticeable side effects, apart from a little weight I would like to lose, but hey! I'm just cuddly.

I took methotrexate for 2 years and in the long run it didn't do much for me, but the side effects I had were minor compared to some. Only at the end of the 2 years I developed mouth ulcers so badly I couldn't eat (no bad thing really!) so it was stopped. Hydroxy was never mentioned to me but it's one of the milder DMARDs.

I found the weight began to drop once I was under 10mg, but 10mg can be one of those 'plateau' points, where you are not able to get any lower for some time. The answer of course is to taper so slowly that your system doesn't notice!

I know your healthcare system is very different to ours, so keep us posted along the way.

Regards

[Hidden in reply to polkadotcom]

Thank you so much for responding polkadotcom! It is so wonderful to have people communicating with me who understand. So your adrenal insufficiency is considered permanent? I thought it could eventually recover but sometimes took a very long time to do it. In any case, yes, everything I have read (and I have scoured the internet a great deal over the past months) indicates that taking the lower dosages, such as what you do now, is pretty safe in general. So I am happy for you and glad you are enjoying a good quality of life.

What you say about methotrexate is similar to so many comments and articles I've seen. Some of the side effects can be awful--so glad you didn't generally have those. BUT...if it doesn't really help in pred sparing, what's the point? Even people who say it helped don't seem sure that the MTX did it, so I continue to stare at the prescription bag from the drug store and probably will never open it.

Am going to try some slower tapering, talk to my doctor and figure out next steps. Your comments are greatly appreciated! Thank you!

[PMRpro Ambassador in reply to Hidden]

Methotrexate DOES help some people - so sometimes it is worth trying I suppose. The differentiation between PMR and Late Onset RA (LORA) can be very difficult as they can present almost identically. MTX will almost always help with RA of any sort!

But our experience on the forum is that if you taper slowly enough - and that means in this sort of way (same as Heron has posted I see):

healthunlocked.com/pmrgcauk...

you can often get to a very low dose, in some cases even zero and off pred, without a flare. The most common cause of flares is reducing too fast or too far although you can have flares on a stable dose because the disease activity increases. I had a flare in the early spring, had to go back to 15 and am now back to 10mg.

You are not reducing relentlessly to zero - whatever any rheumy may think. You are looking for the lowest dose that gives the same sort of result as your starting dose. That may mean getting to a lower dose and sticking because the next lower results in a return of symptoms - it doesn't mean you won't get lower, just not yet. Someone on another forum has just posted to say they are now 6 months off pred, using the Dead slow approach - it has worked for a lot of people in the 4 or 5 years since I first posted the idea.

Like Heron, I've just had a minor flare - trying to go from 10 to 9. Upper back problems - I'll ask the doctor if I can have some more targeted help for them, they aren't entirely PMR, they are add-ons. And then I'll try for 9mg again. The specialist wanted me down to 10mg by the end of the summer, 8mg would be better he said. But at least he is realistic and himself emphasises the slow reduction approach. And he also believes that for the majority of patients the very slow approach at lower doses will allow the return of adrenal function - polkadotcom is fairly unusual in having no adrenal function, but as she says it doesn't really matter.

[HeronNS]

As generic prednisone is dead cheap I find it puzzling your insurance would require you to come off it and go onto another medication which is not as effective for treatment of your disease. PMRpro is right about the slow tapering. I have managed to get much lower than you, but was taking my time as I began to reduce below 3 mg. I've been using the dead slow nearly stop method you'll find on this site

healthunlocked.com/pmrgcauk...

Every time i've tried to reduce the last few mg there has been a point where I wondered whether it was going to work, and up to now I've gone through that stage and felt just as good at the end of the taper as I did at the beginning, so the symptoms were always pred withdrawal. The advantage of dead slow is you can stop the reduction and go back just slightly, because the drop has been so slow. So this time, I'm nearly though the taper to 2.5, and have had that same feeling of unease, is this going to work or not? The morning I knew it was a step too far was when I woke up with pain in the upper body, which I haven't had since starting pred at 15 a year ago June. I was past the point where the pred withdrawal should have ended. So that morning I took 3.5, just one mg more, and was fine, felt as I had before. I'm going to stay at 3.5 for a couple more days then gently slip myself back down to 3 where I had been for a while with no issues. I only go into these details to explain how useful this tapering method is, and I have used it quite flexibly according to my own needs.

There are a couple of other slow taper plans, sorry I don't have links to them.

I do understand about the balancing act. There are the 'niggles" which are really no worse than any aches and pains one might expect with aging, and there is the terrible disabling pain of PMR which restricts movement. The trick is to kind of allow the "normal" stuff to go on partly to allow for pred reduction, but never let the true illness take hold again.

[Hidden in reply to HeronNS]

Hi Heron! I apologize for my poor communication skills...write too fast sometimes. My insurance is not requiring me to come off pred. My doctor wants me to come off of it and he wanted to prescribe continued pred while starting a biologic to help me reduce pred dose (not eliminate it). My insurance will not approve going straight to biologics for this purpose. They require "step" therapy, in which case other less expensive methods are tried first. So methotrexate can be approved for this purpose and if it doesn't work, then they will approve going to biologics I think. But, I tend to agree with you and most others on here, that not only is the prednisone super cheap but it works and the side effects are known so you can plan and manage it pretty well. Your tips and info and link to PMRPro's slow taper post are so helpful. Thank you! I feel so much better about wanting to stay with the pred and just do what you and others recommend. I hope you can keep moving forward with your own taper, and am happy you are at such a low dose. I hope that means that you are feeling pretty good most of the time with minimal side effects, if any.

[HeronNS in reply to Hidden]

Thanks for clarification. I probably read your comment too fast 😳 and now I understand PMRpro's comment better! Yes, I'm quite well, thank you, although I do feel like I've aged ten years in the past fifteen months or so since starting pred. 🙄

[Hidden]

Hi I am also USA.

I was on methotrexate and it was awful. It made me feel poisioned and hypoglycemic which I only felt better when I ate and in 6 months on it gained 40 lbs. Once I stopped it was a noticeable difference and my friends and family commented on it. There is no clinical evidence Meth works for us.

My labs were pretty low compared to most people here but once started on Prednisone I could once again move after a year of misery and it was determined it was PMR then months later GCA.

I am at 17.5 right now I had gotten to 7 mgs but too much pain n went back to 20 on my own. That is where the break thru pains had started.