Flare or Long Term Steroid Withdrawal Symptoms

[LizMitchell]

After almost 10 years since my GCA/PMR diagnosis I finally thought I was well on my way to joining the “zero club” as I was slowly reducing at 4mg of prednisone and no longer on Methotrexate, but recently I have experienced a lot of pain and discomfort, lethargy and general stiffness! Most worryingly a constant headache, albeit not severe! Overall it is the worst I have felt since prior to my diagnosis in 2015!

In February I had a CRP of 8, moderately high for me, but this rose last week to 18, which is high for me! This latest blood test, which I requested, noted “Above Normal Range”, adding “No Further Action Required”

There is some good news from the blood test in February in that my cortisol levels were well within the normal range, so that’s something positive to focus on!

My last consultation with my Rheumatologist was last year by phone and she surmised that my conditions had gone! Of course I was very happy to go along with that!

I don’t know if what I am currently experiencing is down to a flare of PMR and/or GCA, or if the symptoms are as a result of withdrawal from long term steroid use? So I am at a crossroads wondering whether I stay as I am, with little relief from Paracetamol, or increase my Prednisone temporarily in the hope that I get some respite from my current situation.

Your thoughts, as always, are gratefully appreciated!

Happy Easter everyone xx

[DorsetLady PMRGCAuk volunteer]

Hi, long time no hear!

If you are getting some relief from paracetamol [albeit not a resounding result] just wondering if it is one of the various viruses doing the rounds -even the dreaded Covid!

High CRP [and why NFA comment one wonders], headaches, fatigue and general aches/pains/stiffness could all point to that.

But as you well know could also be PMR/GCA.

If you didn’t have such a high CRP reading, I’d have plumped for adrenals… but of course that could be a blip.

Sorry don’t seem to have helped much 🤦🏻‍♀️

Might be worth trying an increased dose [say 9 or 10mg, if you have sufficient tablets] for a week as a test to see what, if any, difference that makes.

You can then drop back down to current dose either way, but at least you might have something concrete to discuss with GP.

But do please ,monitor the headaches and if they worsen then you do need medical advice - and pronto.

Please let his know how things progress.

[LizMitchell in reply to DorsetLady]

Hi

Hope you are well and thank you for responding to my post, which is much appreciated.

As always, lots of good advice to consider and I will definitely try doubling the prednisolone dose for a week as suggested to see if it makes any difference.

Hadn’t considered a virus, so something else to consider.

I will keep you posted.

xx

[DorsetLady PMRGCAuk volunteer in reply to LizMitchell]

Please do..

[PMRpro Ambassador]

Withdrawal from long term steroids does NOT cause an increase in inflammatory markers so I would suggest monitoring that CRP level to see if it continues to rise. If it is a virus or whatever, it should settle down again, If it is a flare there will be a rising trend.

But really - 4mg is loads to manage PMR disease activity, even 1/2mg can keep it under wraps. I read your paracetamol comment as "little relief" not "a little relief". When paracetamol isn't achieving anything notable it is more suggestive of inflammation.

[LizMitchell in reply to PMRpro]

Thank you so much for your response to my post, I really appreciate it!

It is really useful to know that withdrawal from long term steroid use doesn’t cause increased inflammation and that I should consider my symptoms are being caused by a virus!

Thank you also for your information on Paracetamol use, that is very helpful!

[PMRpro Ambassador in reply to LizMitchell]

What WILL lead to increased inflammation is going to too low a dose of pred to manage the inflammation - I just realised what I said could be misunderstood. Just reducing the pred won't cause the marker to rise - reducing it too far can though. And while 4mg is "plenty" to manage low disease activity, reducing may take you to too low a dose. I didn't say that the symptoms ARE due to a virus, we said they MAY be due to a virus. YOu would need to have the CRP checked to see which is the case. If it is a virus now, the CRP will fall again. If it is because the pred dose is now too low, it will continue to rise.

[LizMitchell in reply to PMRpro]

Thank you for the clarification and additional information, that is much appreciated!