Covid vaccinations and PMR

[Ginntonic]

After 5 weeks on 15mg Peds from 27 August followed by 2 weeks on 20 and I am now on 15 again, and due to reduce to 12.5 on 15 November.

However on 10 October I had the COVID & flue vaccs in my left shoulder

Since then, despite the rest of me doing well, my left shoulder has been painful, mostly in the mornings similar but not as bad as the PMR. Right shoulder is also very slightly painful.

My question is, is this the remnants of the PMR and so should I keep at 15mg or is it a reaction to the vaccines received 4 weeks ago? Or am I over doing my exercise? (I average 6500 steps a day more now here in Spain on holiday.) It is clearly better to try to reduce the Peds asap.

Thank you

[DorsetLady PMRGCAuk volunteer]

Not so much “remnants of PMR” as the illness grumbling . It doesn’t disappear just because you are on the steroids -you have to learn to manage it as long as it hangs around. Unfortunately that could be 2 years, 4 years or even longer -certainly not a few months.

We usually suggest not having both vaccines as at same time, too much stress on your immune system which is struggling anyway.

It could be the vaccines causing your PMR to flare especially as both shoulders involved albeit injected side slightly worse.

I’d be inclined to stay on 15mg a bit longer and see if it improves-if not you may need to treat as flare.

As for “It is clearly better to try to reduce the Peds asap.” Afraid not, you need what you need.

This introductory Intro post might give you a better understanding of your illness -

healthunlocked.com/pmrgcauk...

[Ginntonic in reply to DorsetLady]

Hello DL & thanks for your advice @ also for your long ‘new sufferers ‘ article .

I have kept on 15mg as you suggest & very slowly the pains in my left shoulder are reducing. I have decided to wait to drop to 12.5mg until we return home from Spain on 3 Dec. in case of any reaction.

Against all advice I still walk about 4 or more miles a day ( gallingly my wife now does more than me) I can’t sit still

Thanks again

[PMRpro Ambassador in reply to Ginntonic]

And if you wait until early December - unless you turn into a hermit for the next 4 weeks do consider waiting until after New Year - or at the very least, only drop 1mg at a time.

Walking is fine - as long as it doesn't leave you flat out next day!

[Ginntonic in reply to PMRpro]

Yes, thank you for the advice. However there is a difficulty, before all this happens we had booked a 6 week cruise from 9 Jan. so I need to organise my Pred reductions to avoid that period. I take the point about being a hermit! A slower reduction may the way although all my medication is in 5 or 2.5 mgs

We have always travelled, family in Australia & NZ, camping & in the past adventure holidays in Peru, China etc. Less adventurous trips now but we are going to need to take care.

[DorsetLady PMRGCAuk volunteer in reply to Ginntonic]

Definitely no tapering before cruise, not on it either. So what if you stay on same dose for 3 months… no great shakes in the great scheme of things….

Been there, done it.. still got to zero - and still am, 8 years on!

[PMRpro Ambassador in reply to Ginntonic]

With all that - insist on 1mg tablets! If you are on 5s and 2.5s - does that suggest you are on enteric coated/gastro resistant pred? If so, you can't cut them but using one of the slowed tapers and repeating each stage at least once, possibly twice, accounts for having to drop such relatively large amounts at a time. If you don't take that sort of action you really do risk some discomfort and potentially a flare at some point during your travels. And having a bad flare away from medical care can be potentially very difficult! Where is the long cruise covering? You have declared it all even if it started after you took out the insurance?

[Ginntonic in reply to PMRpro]

It is unclear from the info exactly which tablets they are but they do have a slot on them which suggests they can be cut. If I can’t get 1 mg tablets then I can cut the 2.5 tablet. This with a full 2.5 plus 2x 5 will give 13.75 mg close to your suggested 14 (a reduction of 1 from 15) However I must do some homework to ensure I have enough of the right sort before departure

The cruise is relatively ‘benign’, Cuba & the Caribbean and I have informed the insurer who insist that, having made my health declaration they do not need to know anything new which I find astounding. It is Aviva through Nationwide, a choice made by many in my age range! I will however review that!

I started PMR whilst away, not an experience to be repeated as you say

Thanks again

[PMRpro Ambassador in reply to Ginntonic]

If they have a cut line - unlikely to be e/c. What colour? e.c 5s are red, 2.5s are brown I think. You need to take at least double what you think you need and preferably 3x - and packed separately, not all together!!!!

No, that is normal BUT you do need to be sure you have declared ANYTHING/EVERYTHING that happened before booking because they will try to back out of paying if anything were to happen and they can find a loophole.

Some people find heat and humidity taxing when they have PMR.

[DorsetLady PMRGCAuk volunteer in reply to Ginntonic]

It is unclear from the info exactly which tablets they are

If they are EC there will be either enteric coated or gastric resistant on the packet -

GR pack

[DorsetLady PMRGCAuk volunteer in reply to DorsetLady]

Or this

EC Pack

[Ginntonic in reply to DorsetLady]

Thank you, the packet is green & makes no reference to any coating. Nothing in the info leaflet either. The tablets have a groove which I assume means they can be halved if necessary. I am taking Lansoprazole to protect my stomach

[DorsetLady PMRGCAuk volunteer in reply to Ginntonic]

Guess they are plains one then and okay to cut..

[DorsetLady PMRGCAuk volunteer in reply to Ginntonic]

Agree with PMRpro on waiting to taper - and walking… 😊

[PMRpro Ambassador]

"It is clearly better to try to reduce the Peds asap"

It is - but ONLY if the PMR is going to allow it! You need what you need to manage the inflammation and keep the symptoms under control. The pred cures nothing - it initially clears out accumulated inflammation and then you taper the dose of pred in a process called titration to find the lowest effective dose. That will be higher in the early days of the disorder but the rate at which the disease activity falls varies, not only from person to person but also over time in an individual. And during that time you need to be careful not to overshoot the current level required. If you do, then the inflammation will mount up again and if your persist, you can end up back where you came from.

Did you drop from 20 to 15 in a single step?

[Ginntonic in reply to PMRpro]

Thank you. Yes, the advice from the GP was to drop from 20 to 15. I had to go to 20 because my phenytoin largely nullified the Peds action. When I got better after 2 weeks I reduced to 15.

[PMRpro Ambassador in reply to Ginntonic]

The experts say not more than 10% of the current dose at a time. 5mg at 20 is 25%! Most people do better with 2.5mg steps - still above 10% but better. The smaller the step - the easier it is for your body to adjust.

[Ginntonic in reply to PMRpro]

Thank you, I’m new to PMR, and from what I’ve read on the forum I can see it might have been better to drop more slowly maybe by 2.5mg rather than 5

[Ginntonic in reply to PMRpro]

Yes the advice from the GP was to go from 20 down to 15. When she put me on peds she overlooked that I also take phenytoin which reduces the effect of the peds and I had to return to her because I was still in pain after 5 weeks. She advised me to take the phenytoin later in the day and boosted the peds to 20mg then dropping to 15 after 2weeks if all was well ( which it was).

Sorry that took so long!

[ChrisBeeLoop]

I'm no way an expert but my understanding is to reduce the dosage as slowly as possible. certainly no more than a 10% drop in one go. I personally reduced by 1/4mg a week until I got down to around 7mg. It’s easy to cut up the pills with an Amazon pill cutter. Easier to cut the larger 5mg tabs if you can manage the maths. I had to recalculate and recheck every day. Take it easy, take it slowly, and keep taking the G&Ts!