Steroid withdrawal or PMR (undiagnosed) ?

[Phoenix51]

I have been reducing Pred over last 12 months - diagnosed with GCA January 20. Not been very successful until dr added in MMF which seems to have helped me get to my current dose which is 12.5 alternate days with 10mg. The good news is I haven’t had my usual GCA flare with head pain etc but I have been getting lots of pain/burning across shoulders, sore achy neck and a resurgence of my hip pain that I thought had disappeared ( obviously still lurking hiding behind the higher dose of Pred) I feel constantly tired especially in the morning when my pain seems worse and mid afternoon when I have to sleep. Prior to GCA I had had extensive physio and steroid injections into shoulder and hips and have also had shoulder surgery for rotator cuff. I’m just wondering if it’s possible I had PMR prior to the GCA without realising it and the Pred that I’ve been taking for my GCA has masked it until I have reached lower dose. I guess in some ways it doesn’t matter as the treatment would be the same? It would still be the Pred but just wondering if anyone else has had similar experience? What’s best to take for the pain ? I’ve tried paracetamol which helps if just a bit achy but not if pain is worse. Think this is why I’m feeling so rubbish about my weight etc. I’m generally feeling unwell and that negatively affects my thought processes. Thank you

[piglette]

If the pain is PMR/GCA pain you need pred to help you. The MMF will act as a steroid sparer so should help you reduce more easily. Paracetamol can be used for such things as steroid withdrawal for example. Do you think you have something other than GCA/PMR? If not it is pred that is No 1 for your pain.

[Phoenix51 in reply to piglette]

Thank you. I was trying to work out if the pain and stiffness were withdrawal symptoms it I’m more inclined to think it’s underlying PMR raising it’s head.

[piglette in reply to Phoenix51]

See how you go, you may need to increase your steroid dose a bit.

[SheffieldJane]

I know from my own experience that alternating 12.5 mgs with 10 mgs would not work as a tapering method. I would have to break it up into at most 1 mg drops over 4-6 weeks and possibly even getting a pill cutter and tapering by 0.5 mgs. It was a delicate process dropping to 11.5 one day a week, then two days a week and so on, stopping at the first sign of trouble. I found it to be a delicate almost cat and mouse process until I achieved the lower dose. Then of course you start to feel the effects of insufficient Cortisol as you get towards 7 mgs. I got stuck there for a year until something shifted and I got to 6 mgs. It may have been hard for me because unbeknown to me I had developed non cranial GCA/LVV. I had had PMR for 4.5 years. Your symptoms do sound as if these closely related diseases are occurring the other way round. GCA first then PMR.

Pred is the only pain relief for this. Do you feel ok on 12.5mgs? If so, wait until the symptoms are stable before trying a small and slow taper, maybe to 12 mgs. You do sound very symptomatic and it does give you very low moods. I’ve been there and am back there in spite of my Actemra injections. Sorry if this sounds muddled. I am trying to figure out where I am on 9 mgs just today.

[Phoenix51 in reply to SheffieldJane]

Thank you and sorry to hear your current medication combination isn’t proving 100 % successful, I know from your posts that you have had a difficult journey.

I am thinking you’re right that my symptoms may be due to the drop from 12.5 to 10. I think I was ok at 12.5. I suppose I am just so keen to reduce the moonface and strange new body shape that I am jumping at consultants suggestion to reduce, I thought it was a positive move but it now thinking probably not. I’m going to discuss it with him today. Really hope things Improve for you 🌈

[SheffieldJane in reply to Phoenix51]

I know the feeling but even an iron will and grim determination won’t do it. You just end up having to start again, feeling properly awful in the process.I just bought a spiraliser for courgettes and carrots etc instead of pasta. Onward!

[Phoenix51 in reply to SheffieldJane]

I’m also keen to reduce the Pred as I fear it is making my glaucoma /cataracts worse. I’ve not been able to have my check up at the eye hospital due to pandemic backlog which concerns me a lot

[SheffieldJane in reply to Phoenix51]

The dreaded fear is horrible. What my Optician thought was my Glaucoma, isn’t anymore and I have cataracts too. I welcome that op. Or the results of it. Everybody says that they can see so well after it. I am going to pay privately to have the more bespoke one. What could be more important?

[Phoenix51 in reply to SheffieldJane]

Goodness me. It’s not Glaucoma? How did the optician find that out? What is the new diagnosis ? I agree sight is so very important. My mum has lost vision in one eye and it’s decking in the other it affects her life hugely. An op has not been mentioned to me as yet.

[SheffieldJane in reply to Phoenix51]

I kept failing the peripheral vision test - the little sparkly dots that appear and you press a button for each one. I went to an Opthalmologist and he said that I didn’t have it - normal eye pressures. Agony of worry for nothing. I had two grandmas on each side of the family lose their sight, one with cataracts ( before they could remedy it) and one with possibly undiagnosed GCA, is my theory.

[Suffererc]

What is MMF please

[Phoenix51 in reply to Suffererc]

Mycophenolate mofetil - I can’t spell it so I just put MMF as that’s what the Dr says 🤣🤣it’s an immunosuppressant he’s using it to help me taper the Pred which has been problematic thus far

[Longtimer in reply to Phoenix51]

Never heard of that one before...we learn something everyday!....

[MrsNails in reply to Longtimer]

I’ll put the MMF in our abbreviations lists for reference

[Longtimer in reply to MrsNails]

Thank you, very helpful.....can you also add..VFU.....very fed up!!😉....sorry, couldn't resist it....feeling like you know what, and sick of looking at rain outside!!....hope you are ok...

[MrsNails in reply to Longtimer]

Never lose your SOH Sense of Humour 🤣

Pretty miserable day ☔️

I’m a bit like the weather 😳

[DorsetLady PMRGCAuk volunteer in reply to MrsNails]

GSOH - even better! Hope you and the weather soon improve. 🌸...more chance you!

[Suffererc in reply to Phoenix51]

Thank you 😊

[2013mayo]

Hi Phoenix51

I too am on pred and mycophenolate plus TCZ. I’ve not been taking the mycophenolate and TCZ for a week or so because I had Oxford vac and felt I shouldn’t reduce my immune system, however, since I’ve not taken them my shoulders are absolutely killing me, I’m in terrible pain, getting worse everyday, so I’ve decided to start taking them again. As you say, I also didn’t realise I had pmr until the pain started, even though my rheumatologist said I had it, I just thought it was aches and pains in general.

Hope you get better soon. Xx

[MrsNails]

I shall put MMF in our abbreviations as a reference....

[PMRpro Ambassador]

For a start I'd suggest asking for 1mg tablets and reduce steadily rather than alternating doses like that - your body doesn't know where it is.

Your cataracts won't regress even of you reduce the dose and an optician can check pressures for you - if there is then a problem you would be dealt with, Raised pressures alone are not glaucoma - that requires a set of symptoms to appear together and raised pressures can be controlled with drops or even a small op which can be part of the cataract op.

[Phoenix51 in reply to PMRpro]

Thank you. I was fortunate enough to be sent by my optician to an eye hospital where they calculated the pressures, my field of vision, thin corneas ( who knew!?) etc and then disguised glaucoma . I tried a number of drops without success and now on Timolol plus Azopt daily.

[Phoenix51]

Update: spoke with consultant this morning. He wants me to stick it our with 10mg. He said as I’m not having GCA pains ( for me head pain) then to tolerate the muscular aches and pains for a couple of weeks after which time I have to have bloods to see if markers are up ( when I have had flares in the past my markers haven’t been raised oddly enough, but my consultant has gone with my symptoms but he says that if my current symptoms persist and it is PMR then this will show in my bloods in two weeks time. I’m sad that I have to potentially put up with these rotten symptoms but I do trust the consultant and he is mindful of the effects of the steroid on my bones and vision. I do take onboard everything that you have all suggested and I would have preferred to have gone back up to 12.5mg but feel I need to give it a couple of weeks on 10mg as he’s suggested. Thanks again to you all 🌈

[HeronNS in reply to Phoenix51]

I believe it's not a given that your blood markers will rise. Your medical care should continue to be based on symptoms. If symptoms are still present or worsening you can be sure it's not pred withdrawal. Prednisone at low doses is not nearly as dangerous as many doctors seem to think, although it is good to get to 5 or below when you can without making symptoms reappear. Hopefully you will find the symptoms lessening through this fortnight. We always suggest a slow taper at the low levels in an attempt to avoid pred withdrawal symptoms which always arrive feeling like PMR and making us think we need more pred. But those pains go away with time. PMR pain tends to increase with time if pred dose is too low.

[Phoenix51 in reply to HeronNS]

Thank you 😊

[PMRpro Ambassador in reply to Phoenix51]

My markers don't rise for a very long time and even then are "within normal range". You may not even need 12.5 - even 1/2mg can make a big difference.

[Phoenix51 in reply to PMRpro]

It’s strange that isn’t it ? How can our markers stay the same when there clearly inflammation in our bodies

[HeronNS in reply to Phoenix51]

Perhaps the fault lies with the tests not with our bodies?

[Phoenix51 in reply to HeronNS]

Good perspective 👍

[PMRpro Ambassador in reply to Phoenix51]

Because the biological process that creates those very unreliable markers doesn't "follow the rules" - the inflammation has to be high enough for long enough to trigger the process at all. In some people the CRP (a protein) doesn't increase - and its increase contributes to the ESR reading so that doesn't increase much either, The figures may be raised for YOU - but still lie within the normal range (which is a range worked out on the basis of the results from thousands of apparently healthy people - some of whom may have undiagnosed disorders like PMR) and so the doctor thinks it is OK or only a bit raised. That's why really good doctors work on the symptoms. And actually, treating the patient is the important point - does it really matter greatly if the disorder is a a polymyalgic presentation of something that is steroid-responsive rather than a specific image that the doctor is fixated on? If it doesn't respond to anything else ...

[Phoenix51 in reply to PMRpro]

Thought provoking . Thank you

[Spanky2019]

I realize your post is a month old. Do you and your DRs realize crp and esr labs are erroneous when on tocilizumab? Go to patient info or call Genentech. Your dr needs to know this too. Your crp and esr will be normal on tocilizumab but doesn't mean you have normal inflammation level.