A Dilemma

[Callymac]

I've had PMR for just over 2 years and up until May this year I have been able to reduce my prednisolone down to 2 mg. Since May I have had 3 flares and following the Forums instructions increased the dosage by 5mg for about a week then back down to 2.5 mg which seemed to work. 3 weeks ago, I got my covid booster and flu vaccine. Since then, my shoulder muscles have been really sore and have problems sleeping due to pain. I was convinced that perhaps it was my adrenal glands not functioning properly. However, I've just had blood tests taken at the surgery and results are normal. My GP, via a voicemail message, is suggesting dropping the steroids down to 2 mg but my gut feeling is that will only make the situation worse. I was wondering if any of you out there have had similar issues after covid and flu vaccines and if so, should I just hang on in there for a while on 2.5mg and see if things get better.

[PMRpro Ambassador]

Really you are NEVER reducing the dose of pred relentlessly to zero. You start on a dose that should be plenty for everyone to clear out the existing built up inflammation and then you undertake a process called titration to identify the lowest effective dose as what could be described a maintenance dose ongoing. Contrary to some ideas, PMR does NOT last 2 years - it lasts as long as it lasts and as long as it lasts you need some pred to manage the ongoing daily production of inflammation, That dose for you appears to be 2.5mg and not lower - and excellent result. Prof Dasgupta, a leading figure in the PMR/GCA field in the UK, told us a couple of years ago that he often keeps patients on 2-3mg longer term as that reduces the risk of relapse.

It has been common during the vaccination programme for patients to flare after having a jab - it varies a lot, I had no problem with the first of 2 Moderna jabs and with neither of the Pfizer jabs I have had. There seems to be some evidence that the new bivalent jab is more likely to prod the immune system and lead to a short flare. Your GP is being a bit silly - whatever is causing the increase in symptoms, lowering the dose at the present is not the best idea.

I raised my dose slightly - but it was a lot higher than you are on and I had a lot of other things going on at the time. I would say see how you do, possibly add a mg or two and see if it helps in the short term, you can do that for a week and drop back to the previous dose without any problem. If the symptoms get worse that would suggest you are in a proper flare not just a reaction and you will probably need more pred.

[Callymac in reply to PMRpro]

Thanks to all of you for really helpful advice once again. Will try increasing the dose of prednisone by 1or 2 over the next few days. I’ve managed to get an actual face to face appointment with the GP ( first time since my diagnosis) in 10 days time so it will be good to discuss things with him then.

[DorsetLady PMRGCAuk volunteer]

Agree, don’t reduce any more.

Blood tests may be okay, but as WE know they are not the be all and dnd all that done doctors think! If you keep flaring, particularly at same level then you’ve gone below dose you PMR needs…

Some have said that vaccines have caused a flare, so another good reason not to taper.

Hopefully the 2.5mg will be enough -but if not, you know what to do.

..and maybe ease up on the tapering anyway - at such low doses 0.5 really does make a big difference-and at only 2years in, your PMR may be a lot more active than you, or GP thinks…

[piglette]

After my last Pfizer jab I was really ill for a couple of weeks. I was talking to a friend about it today and she was saying that the jab was worse than having Covid! My theory is if you react badly to the vaccine it means that you are building up a good resistance with lots of anti bodies. I am not sure if that is true or not, but it makes me happy with my reaction to the vaccines. I had a blood test and it seems I have a high antibidy count which is good news. They are now talking about a spray Covid vaccine.

[Exflex in reply to piglette]

Not according to a virologist I know. Reaction or not doesn’t imply a better response.

[piglette in reply to Exflex]

Oh well.

[PMRnewbie2017]

Something I find useful is to try taking a general painkiller like Paracetamol or Ibuprofen. You may need to take a few doses. If you get relief then the aches and pains are unlikely to be caused by pmr. There is a sound reason for this but i won't go into that now. Since you've been on this journey for only 2 years it's possible that the pmr is still active so you've done well to get down to 2.5mg. It is really important not to rush the reductions in pred dose. Flares are never nice and it's harder to control them, the more you have. Plus frequent yo-yoing of dose is hard on the body. Remember also that we all ache when we get older even though we feel 21 inside, and post vaccination issues are more common than docs realise. The trick is that with experience (I've been at this for nearly 5 years) you will recognise the subtle differences between muscle pain from pmr, from over doing it, and life in general. Could you try a hot water bottle on your shoulders to see if that helps? And to answer your question, I had the flu jab on Monday and felt dreadful for 3 days afterwards. Will wait a fortnight before having my 6th Covid one.

[Callymac in reply to PMRnewbie2017]

Thanks for this advice. I’ll definitely give it a go.

[DorsetLady PMRGCAuk volunteer in reply to Callymac]

You can use ibruprofen gel sparingly for muscles but not tablets/capsules - as said by Iamfedup used alongside steroids it can cause stomach issues

[PMRpro Ambassador in reply to Callymac]

My rheumy allows ibuprofen etc - but only with a PPI or the like taken with it,

[Iamfedup in reply to PMRnewbie2017]

I was told never to take ibuprofen as it’s an anti inflammatory and that’s what the steroids are

[jls93]

i experienced flares after my last 2 of 3 covid vaccines .very reluctant to get booster. Rheumatologist suggested next one to be from different manufacturer

. Still weighing risk/benefit . Currently at 2mg of pregnisone...

[PMRnewbie2017]

Yes gastric irritation is a potential problem with steroids and NSAIDs. However, Callymac is taking only 2.5mg Pred and providing doses are not taken at the same time and are taken with food ie at mealtimes for the Ibuprofen there shouldn't be a problem.

To clear up misunderstandings about anti inflammatories...in PMR the Pred mops up inflammation caused by Interleukin 6 . NSAIDs reduce inflammation caused by prostaglandins. That's why ibuprofen won't work for PMR pain. Granted this is a very simplified explanation but this piece of pharmacological information can be a really useful tool when trying to work out if our pains are PMR or not. It is so important not to take extra Pred unless we are treating an actual flare or we can establish that we have dropped below our ideal dose. Hope this helps to explain my earlier suggestions.

[Purpleazalia]

I am currently on 4mg/day and have had some PMR symptoms since my covid booster 3 weeks ago.

I was due to begin reducing to 3.5mg last week but have put this on hold for now. I am monitoring myself with a view to treating it as a flare if it becomes worse, but, as it has taken me so long to get to 4mg (I had to stay at 5mg for about a year), don't want to increase if these symptoms will settle on their own.

I think if the pain became bad enough to be waking me during the night, I would treat it as if it were a flare - but only you can decide what's right for you - hope it improves for you soon!

[CarolF1312]

I had the flu and Covid Vaccine together , two weeks ago. I had been doing well on 3.5 mg but started with aches and stiffness the day after my vaccine. I have managed to stay at the same dose with occassional ibuprofen or paracetemol. Thankfully, I seem to be improving now without increasing my Pred but still not back to where I was pre vaccine.

The previous Covid vaccines have not affected my PMR. I thnk having both vaccines , may have tipped my immunne system over the edge.

Hope you improve soon.