Rheumatologist doesn't want me to stay on pred

[Goldengirlz2]

My Dr has me taking plaquenil 6 days a week and only use prednisone when I have much pain. I also gave inflammatory arthritis. There us a distinct difference between pmr pain and the inflammatory arthritis pain . She would have me take methotrexate before daily pred.

[PMRpro Ambassador]

That would be fine - if they worked for PMR. They don't usually prvide that good a result. There is a good reason pred is seen as the mainstay of PMR management.

[fmkkm]

I was looking around for something current on this topic. There does not seem to be much research right now on new treatments for PMR.I did come across this from 2021 and found the two expert’s responses interesting.

researchgate.net/post/Safes...

[PMRpro Ambassador in reply to fmkkm]

"adjunct immunosuppressive medications have been evaluated to assess their GC-sparing effects in PMR"

Well there is an exaggeration if ever I heard one!!! No they haven't - I don't consider a single small pilot study that wasn't followed up particularly convincing ... Nor does Prof Mackie I think.

As for Muktyar"The vast majority of patients with PMR need only about a year's taper." What absolute rubbish - obviously everyone on the forums has been misdiagnosed! And actually - he didn't say that in person in his seminar either! Though I do find his admission about methotrexate and tocilizumab adverse effects interesting.

[fmkkm in reply to PMRpro]

There’s really not much out there to go on right now. Prednisone is still the one to use with sparing drugs used with some success. I’ve done well with prednisone and am frankly afraid of methotrexate.

[PMRpro Ambassador in reply to fmkkm]

Me too - didn't like MTX at all, felt SO ill. Still working on considering leflunomide - but it scares me silly too!

[Josephinem in reply to PMRpro]

I was taking leflunomide for 2 years instead of prednisolone. However I had to come off them because I lost my taste and now back on prednisolone. I have been taking prednisolone since 2008 with the 2 year break on leflunomide. I have managed to get down to 1mg a day and then I have a flare and have to increase them. I truly wish I could come off them. I now have osteopania due to steroids.

[PMRCanada in reply to fmkkm]

I was/am afraid of Methotrexate too, but after 2.5 years “stuck” at 9mgs pred, decided to give it a try. 2 weeks on and all ok thus far. Time will tell and I can stop at any time. If it doesn’t pan out, the only other medication I’d consider would be Actemra…but that’s not available in Canada.

You’re quite right about lack of options for PMR treatment (that actually work)! Pred is cheap to manufacture, does the trick, and I don’t think researchers are keen to study PMR given the average age of patients. It’s certainly not well known and not a “sexy” condition for lack of better words. It doesn’t affect younger folks, those usually still working, etc, so not the same urgency.

[jarn in reply to PMRCanada]

I reside in B.C. and have had TCZ (tocilizimab) for nearly 2yrs. Yes, it is in Canada with special permission from your rheumy

[jarn in reply to PMRCanada]

Oh, but I have GCA so perhaps the reason for having TCZ............

[PMRCanada in reply to jarn]

Yes I should have said Actemra not available in Canada for PMR patients.

[fmkkm in reply to PMRpro]

Maybe he means they need a year to taper before their first relapse. 😳

[PMRpro Ambassador in reply to fmkkm]

The way he goes about reducing I doubt it takes a year!!!

[Longtimer in reply to PMRpro]

I have experienced Muktyar's opinion first hand....an arrogant man, who made me worse!.... ...doesn't like questions either.....nothing g shocks me what he says....like"if you get pain when lowering, it's not PMR!! "....

[PMRpro Ambassador in reply to Longtimer]

What is it then???????

[Longtimer in reply to PMRpro]

Exactly what I replied to him....he shrugged his shoulders!....my sister looked horrified....I think she thought I was going to have my say.....but I decided he wasn't worth it....never wanted to see him again....I get the impression after reading about him and my exper ience... he can't be bothered with PMR, onl y GCA.....

[Whittlesey in reply to PMRpro]

would say, also, that during the first difficult years of Gca -- we get the high doses of pred to begin with -

- I found that one or two baby aspirin, helped. Apparently it can reduce the IL6 inflammation -- which is an overall help. In trying to reduce the pred - the aspirin helped.

I took methotextrate for about 6 months in the second year of this.

It actually helped.

First day after -- felt terrible. But every following day, I picked up. And I was able to reduce the pred to 30 -- 28, 26, etc without the Gca and Pmr becoming obviously present.

I got it by injection, I remember.

With the high doses of pred prescribed for Gca -- methotextate may be one possible way -- with aspirin -- to reduce and stay at the rate -- in the slow slow method of reduction( which is very good).

[PMRpro Ambassador in reply to Whittlesey]

In fact, the use of aspirin in GCA is now discouraged as it is felt the risks of gastric irritation and bleeding outweigh the benefits. There seems to be a lot of dispute about the use of both low dose aspirin and methotrexate in GCA - and I suspect that will continue indefinitely! Prof Dasgupta, an acknowledged expert in the GCA field, has now said he doesn't find MTX helps in GCA although I htink he did consider if it were to be used, it should be started within the first month.

[piglette in reply to fmkkm]

As steroids work so dramatically it is an easy solution and something like PMR does not have the appeal of various cancers and heart disease or the cash return!

[Goldengirlz2 in reply to fmkkm]

I have read about the monoclonal antibodies for treatment of inflammatory diseases.

[Nymocaaz in reply to fmkkm]

Hi forwardmotion, Thank you for the link to the excellent article. I appreciated the fact that the need for accurate diagnosis was stressed, as was the caution about a “knee jerk” reaction to increase steroids when some pain is felt.

[Constance13]

Similar journey to mine D2C. Having both PMR and inflammatory arthritis is just too much for the body sometimes. There seems to be no "exit door" for either of them. We suffer in silence most of the time - how many doctors/rheumies understand these illnesses. They've only read about them at some time or another.

Thank goodness we have a magnificent forum where we can let of steam/ask advice, or even just chat.

🥴⚡️😗

[Constance13]

Lucky you! Can't happen for me unfortunately. The joys of old age!🤨👵🏻

[cranberryt]

Is she checking your liver function? Though rare, Plaquenil can cause liver problems. I had to stop taking it because my liver numbers skyrocketed. No drug is without it’s consequences. And if the planquenil isn’t the solution for the PMR specifically, the inflammation in your body will only build up and make things worse.

[tangocharlie]

Unfortunately TCZ is not licensed for treatment of PMR in the UK, but there are trials going on for using it against LVV and GCA

[tangocharlie]

Hopefully more research will be done to see if this is a viable treatment for PMR.

[Nymocaaz]

I’m very happy you have found some relief