GCA, now PMR as well?

Hello everyone, I would be very grateful for your advice. I was diagnosed with GCA July 2021 and started on 60mg of Pred. I’ve had a bumpy year but am now down to 12 trying to get to 11.5 or 11. Have tried 3 times, twice to 11 and once to 11.5 each time I’ve felt very unwell and stayed on 12 for week before trying again. Last week I attempted 11 again and have severe back/shoulder/neck/arm pain as well as ongoing leg pain. Just wondering whether this could be PMR possibly coming to light now that the steroid dose is lower?

I’m due to see rheumatologist in a couple of weeks and would love to have your thoughts. I suspect she will suggest Leflunomide as she has mentioned it before. I’m not keen to take another drug but what do you think, would it be helpful?

Thank you so much for all your wise words, sorry you all have problems too but it’s lovely to know I’m not alone with this rubbish disease.

[DorsetLady PMRGCAuk volunteer]

Hi,

Could well be, you may have had PMR all along, but to be down to 12mg from 60mg in under a year is quite quick.... certainly easier to taper at the higher doses, but you may well have reached YOUR level for now....

Honestly one year in, I don't see the need to add in another drug....but then I don't think like a Rheumy.🤦‍♀️

I would be inclined to stay at 12mg for the time being, try and fight your corner (not easy I appreciate) with Rheumy, saying you'd prefer not to add in another drug at the moment.. and suggest a slow tapering plan -

couple here to look at before your appointment - takes about 5-6 weeks to get from higher dose to lower dose -

healthunlocked.com/pmrgcauk...

healthunlocked.com/pmrgcauk...

[Hidden in reply to DorsetLady]

Thank you DorsetLady I used your slow taper to get from 13 to 12 and all went well and carried on using it but now I’m stuck. I did say that to her last time and she agreed slow was the way to go so will have to see what she says this time. Do you know if Leflunomide would help in this situation? Thanks

[DorsetLady PMRGCAuk volunteer in reply to Hidden]

I never took anything other than Pred -but then I didn’t get stuck at any dose .

However I did stay at 12mg for a couple of months -my late hubby was in and out of hospital at the time so very stressful - GP agreed it was probably sensible thing to do.

Appreciate not the same situation -but it was at about the same timescale as you.

Sometimes you reach a point when it’s not realistic to try reducing-give it another month (if Rheumy okay with that) and then try again.

Leflunomide may help, it may not -but you are adding in another drug with its own set of side effects. Personally I would be reluctant to add in as you have so well to date -apart from recent blip.

[Hidden in reply to DorsetLady]

Thanks, sounds sensible

[PMRpro Ambassador in reply to Hidden]

I agree entirely with DL's reply so won;t repeat it.

Remember that GCA is very prone to flare in the first 18 months - and you have reduced very quickly. When it works that is great - but you are still at risk. The lower the slower the better.

[piglette]

It does sound as if you may also have PMR. It does seem to happen quite often with people who have GCA. As DorsetLady says you may have had it for a while but it is now showing itself as you get down to the lower dose.

[nallufl24]

I was diagnosed in July 2021 also. Started at 60 and relapsed at 10. Went back up to 40 and started Actemra. I was able to get down to 5 mg quickly. I had so much pain that I too wondered if I had PMR. It was in my hips, back and thighs. However, when I would take extra strength Tylenol it would ease up quite a bit and according to everyone if a pain killer helps it is not PMR. It could have been withdrawal symptoms.I’m now on 0 prednisone. The arthritis I had before has come back with a vengeance. I had an MRI on my back and my vertebrae has slipped and I have a great amount of arthritis. My back is causing my leg and hip pain.

I’m going to get a back injection this week from a pain doctor. Actually I feel pretty good right now. I just have a problem walking up stairs and uphill.

Of course, I don’t know if you now have PMR or not but sometime it could just be arthritis since prednisone covers all our pain

[Hidden in reply to nallufl24]

Pleased to hear you’re feeling good, you’ve done well to reduce so quickly I think. I am taking paracetamol but it doesn’t really help sometimes just takes the edge of it.