Advice

In retrospect I had undiagnosed PMR 3 years ago lasting for about a year and then suddenly disappearing, only to be followed by leg pain, also undiagnosed until I'd had a great deal of neurological testing, all with non-specific results. I was a very active 64 year old with active border collies and no risk factors for anything and suddenly in a wheelchair. When diagnosed with GCA my worst leg had to be revascularized and the other currently has 56 % blood flow. I started on 50 prenisone 2 years ago and tapered successfully to zero a month ago. SED returned to 5 or below for the whole 2 years. Two weeks ago PMR returned, Sed 30. Am seeing rheumatologist, who started me on 20 a few days ago. When I see him he may suggest combining the prednisone with a prednisone sparing drug - this March I got sideswiped in the dog park and broke my hip, a gentle fall, am okay after the repair. Has anyone had success adding a prednisone sparing drug? I just found this website. I know no one with GCA, especially affecting the legs.

[optimist-ok]

I have had PMR/GCA for 3yrs now. Badly affected legs & had to use crutches for a while on several occasions; my GP blamed the effect of the steroids. As for the prednisolone 'sparing drug', I don't know if this is the same but for a while I had Methotrexate to help reduce the steroids. Hope this helps!

[Hidden in reply to optimist-ok]

Thank you for your helpful reply! Did you find that methotrexate helped you?

[optimist-ok in reply to Hidden]

Hello again. Not really sure whether the Methotrexate helped. I was on it for a few months then had to stop using it in Feb this yr as I had a severe dose of shingles! Apparently it can cause shingles, anyway as the steroids were coping without it I didn't restart. From Feb to now I have been able to reduce steroids to 2mg a day. Seem to be stuck on that at the moment as last 3 blood tests haven't been too good. Good luck with your problems. Things do get better!

[Celtic PMRGCAuk volunteer]

Jonny, Snap! I too recovered from undiagnosed PMR within a year but then succumbed to GCA, also aged 64! However, there the similarities end, as it took me 5-6 years on steroids to reach remission. But what a blow for you to succumb for a second time. It is felt that those who recover within two years run a mall risk of contracting it for a second time. However, stay positive, I know of at least two other people who have had two bouts and both have again gone into remission. They both have said they know they were really overdoing things after recovering the first time, so a little lesson there for the rest of us, I think. Hopefully others will join in shortly who may be able to reassure you with their experience of steroid-sparing drugs. Very best wishes.

[55grove]

I am so sorry to hear of your situation now. Having active working Springer Spaniels for so many years and then being struck by PMR it was devastating. I have had to give up so much to do with the dogs...it is really depressing to feel "old" now with so little energy in comparison to former days. I tell,myself it is just life limiting and not life threatening like the cancer of one of my close friends ! Best wishes for your future. Susan

[Hidden in reply to 55grove]

I still feel sad having had to give up my most active dog. I see him sometimes now at the kennel and he runs to the fence wanting to come home with me. The fact is, though, that he has a wonderful new owner who can run and play.

[PMRpro Ambassador]

I know personally of 2 people who were put onto methotrexate (mtx) as a steroid sparing drug and who were initially able to reduce considerably - until they had a massive flare and were back to much higher doses again.

The most recent advice in the guidelines is that mtx has little or no role in PMR even as a steroid sparing drug and is not recommended for use. The evidence is mixed: one study showed it did help, one showed it didn't and one didn't know. They were all fairly small studies. A few other immunesuppressants have been trialed, azathioprine seems to not do much either.

A pilot study using leflunomide showed promise in 22 out of 23 patients who needed to be taken off pred for various reasons, inducing remission in all of them. Whether it was sustained beyond the period of the study I can't say. I know a few patients who have done well initially on leflunomide but then developed severe side-effects from it and have had to come off.

The experiences of people I have come across on the forums have been that if you reduce slowly enough - i.e. in small enough steps and with sufficient care - many patients are able to reduce to acceptably low pred doses without "steroid-sparers". To taper from 50 to zero in two years is, judging by the patients I have come across at least, quite fast and I would suggest that it is very possible that had the rheumy proceeded much more slowly in the final stages and you had remained at each low dose for a couple of months each time the PMR bit might have been picked up sooner, the reduction slowed or stopped and you wouldn't be back on 20mg now. I make that assessment on the basis of the speed with which you relapsed. The primary cause of a flare is reducing too far or too fast - the experts in the USA have recognised that for some years and it is to be found pointed out in rheumatology textbooks. You may well get to well below 10mg very quickly if you reduce in such small steps but steadily.

If you visit the Vasculitis forum here you may find people in similar situations to you - GCA is a large vessel vasculitis, not all large vessel vasculitis is GCA, so there may be people with LVV where it hasn't been classified as GCA as well as GCA patients. There is also a site associated with the northeast of England PMRGCAUK support group with a lot of stories from patients, some of who had/have GCA, a wealth of medically checked and reliable info about GCA and a link to another forum which has several GCA patients as members.

[Hidden in reply to PMRpro]

Thank you SO MUCH for your extremely helpful response. I see my rheumatologist tomorrow and I'm pretty sure he will pressure me to be part of another clinical study with one of these drugs. Having this information is so good. I've also just started Forteo for my bones.

[PMRpro Ambassador in reply to Hidden]

I don't think there are any official trials running at the moment though I might be wrong. A lot of doctors still believe they work, maybe they do, many people find homeopathy helps in some situations but the evidence is lacking! Facts that doctors learn at certain stage of their career stick with them and because they were told "this works" that remains with them even when later evidence shows that maybe it didn't work as well as they used to think.

What they learn also depends a lot on which country they are in and the culture there. The attitudes of doctors here in mainland Europe to many treatments that are regarded as "alternative" or pooh-poohed in the UK is totally different. Herbal, massage and very traditional spa-type therapies are used regularly - and certainly achieve something positive both prophylactically and therapeutically!

[Hidden in reply to PMRpro]

Your advice was exactly in line with what my rheumatologist said today -- the flare was likely caused by too fast a taper. He basically said I would taper from 20 now over 2 more years!

[PMRpro Ambassador in reply to Hidden]

Good! Shame he hadn't said that the first time!!! Mind you, you should be able to get down to 10mg fairly speedily but don't force anything. PMR goes in its own time - and it definitely has a mind of its own. Must be a teenager...

[Hidden]

I do sympathise with your position as I have two collies, used to an active life, but now I have to rely on others to take them out - unfortunately slightly reluctantly - which makes me sad for the dogs! Hopefully I can get back to their joyful activity - I miss it so much.

[Hidden in reply to Hidden]

I know exactly how you feel. That joyful activity is what I miss most too.