What to do for the stiffness.

[Cgt1151]

Coming up on 4 years since I was diagnosed with PMR and GCA. I have tapered to 2 mg of Prednisone daily. Labs are all good. The stiffness is not going away. Mornings are pretty bad, as well as during the night. If I sit still for more than 30 minutes I am so stiff I can not walk normally. Most of the stiffness is in my hips, thighs, and shoulders. Not too bad as long as I keep moving. I just want to know what the likelihood is that the stiffness will go away at some point. Looking for something to look forward to. Thanks!

[123-go]

Hello, Cgt1151. I’m sorry to say that in my opinion your PMR is alive and kicking in spite of your labs being “great”. Stiffness in hips, thighs and shoulders are classic symptoms of PMR inflammation and symptoms always trump blood test results. Do you have the same rheumy who , two years ago, declared your bloods to be “in the normal range” when they clearly were not? If you do you absolutely need to see someone else who is more informed.

This is not what you want to hear, I know, but it would appear that your PMR has never been truly controlled. Whatever plan is set out for tapering Pred it is only a guide as we are all individuals and our response to Pred is also individual.

You CAN look forward to better times but only with correct management of your disease which means being on the correct dose of medication and for sufficient time to manage your symptoms before reducing. It’s also helpful to understand that that the lower the dose, the slower you go. Have a look at tapering plans recommended in FAQS:

healthunlocked.com/pmrgcauk...

You may benefit from some physiotherapy but the therapist should be fully cognisant of PMR.

Best wishes and please keep us informed.

[Sillydogsmum in reply to 123-go]

I have tried to access cess the PMRGCA plans several times but it always gives me the error 404.

[DorsetLady PMRGCAuk volunteer in reply to Sillydogsmum]

Must be an error -I’ve just tried link above and it’s fine. Try again -or try going to the FAQs -and accessing the post that way.

[Sillydogsmum in reply to DorsetLady]

I can get to the page but can't open the first hyperlink....error 400 not 404. Have tried going via FAQ , no better.

[DorsetLady PMRGCAuk volunteer in reply to Sillydogsmum]

How odd….then maybe the error is from your device…perhaps try the usual logging off/on again etc… and then if still doesn’t work contact HU help Centre…

[PMRpro Ambassador in reply to DorsetLady]

No - the Tapering Plans from the PMRGCA website link, the first one, gives error 400 for me too,

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Okay… in that case we’d better get  Fran_Benson to have a look then… apologies Sillydogsmum maybe try this - steroidtaper.azurewebsites.net

[DorsetLady PMRGCAuk volunteer]

hi,

Say I have to agree with 123-go looking at previous posts it doesn’t sound as if your GCA/PMR has ever been fully under control…. as for labs if you are still on Actemra then they would look good, that keeps them artificially low.

Perhaps you should try an increase to, say 5 or 6mg for a couple of weeks and see if that helps. If not you can drop back down to current dose and investigate other reasons for stiffness. If it does help, then it’s likely to be current illnesses [especially PMR]and perhaps you should then consider a slower taper from there as suggested.

[darkred in reply to DorsetLady]

This just came on my feed. Different doctors with different opinions about PMR. Not much in depth.

msn.com/en-us/health/ask-pr...

[DorsetLady PMRGCAuk volunteer in reply to darkred]

Actually many of the comments from other countries/regions are good - and better informed than some of their US counterparts

Good points on first look -

25% of patients likely to relapse if tapered too quickly

Relapse most likely between 6-12 months are finishing Pred

Can last up to 5 years (although most US say 2-3 years).

[PMRpro Ambassador in reply to DorsetLady]

Sceptical about the "other countries" - really don't imagine there is a high rate of PMR in India ...

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Does say rare, but they do seem to have a better grasp of it than some doctors mentioned on here…. What about Brazil?

[PMRpro Ambassador in reply to DorsetLady]

Hardly a Viking destination!!!!!

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

True - but they got to Portugal, and the Portuguese got to Brazil…..same as Brits got to North America, Australia, New Zealand…

[PMRpro Ambassador in reply to DorsetLady]

You do have a point!!!!!

And it is true that a very high proportion of rheumies in the UK seem to come from the sub-continent - couldn't possibly comment on whether that is good or bad for PMR-ers

[SnazzyD]

Hello, 4 years feels like a long time but for PMR it’s not with the median being 5-6 years. Your doctor seems to have under dosed you (according to guidelines) tapered far too fast and if you did carry on with Actemra, assumed that would be all that is necessary. Actemra only deals with one type of inflammatory substance and others could be involved which is why Pred can still be needed for some people.

Your markers haven’t been normal for you at times , never mind the lab range, and in any case can be unreliable, especially with Actemra. Can you get a second opinion? Your role as a carer may require to be on the go instead of resting sometimes which also needs to be taken into consideration. You deserve one as if your PMR/GCA is going to grumble on, you should at least have a better quality of life. 4 years will feel like a lifetime if you are symptomatic. Yes it will go, but in its own time, but better days could be had sooner with adequate dosing.

[PMRpro Ambassador]

I agree with the others - your PMR is still there and making its presence felt. You have typical morning stiffness plus the all day myogelosis. Symptoms ALWAYS trump labs but any individual's markers may not fit with what the rheumy thinks.

[Cgt1151 in reply to PMRpro]

Thanks so much for all the responses. I only took a few doses of actemra as it was unavailable through my insurance after about 2 months. In the past year I have been tapering at about 1 mg every 4 weeks. Had a difficult time getting below 7 and again tapering from 3 to 2. I also am experiencing tenderness in all my muscles. I cannot even get a pedicure anymore, because it is uncomfortable when they massage my calves. This has been going on for over a year now. The GCA does seem to be under control at this time.After I had the biopsies done and was put on 60mg of Prednisone, I am seen every 6 months by the eye specialist and show no signs of active GCA. I will definitely increase the dosage to see if it helps with the stiffness. I just completed 8 weeks of Physical therapy for neck and shoulder pain. Was told all my muscles were full ok knots. The massage was very painful. Thanks for listening.

[PMRpro Ambassador in reply to Cgt1151]

If you have a good physio who does manual mobilisation it may help the myofascial pain syndrome affecting the whole muscle. But I'd say you are getting PMR as a symptom of your GCA, it isn't uncommon. And you are now at too low a dose to manage the PMR. The tender muscles and stiffness are very characteristic of PMR.

[Cgt1151 in reply to PMRpro]

Thanks for your input. I increased the Prednisone to 6mg today. How long should it take before I know whether or not I need to increase it even more?

[PMRpro Ambassador in reply to Cgt1151]

How long is a piece of string!!!! But if you aren't feeling at least a bit better after a few days - rethink the dose.