pmr again

[Crowsfeet]

I had a Covid shot on Sunday and the next morning I could hardly get out of bed. My back in the pelvic region was so painful. It eased up a bit during the day. Classic pmr symptoms for me and this is my third time. Unfortunately my GP is sick so I can’t get a prednisone prescription until Thursday. I happened to have an old prescription so I took 15 mg of that the next day as I was in so much pain. Do you know if prednisone loses its efficacy? Mine was two years old.

[SheffieldJane]

There should be an expiry date on the box. It won’t hurt you and it won’t be for long. Do the sick day rules for about 10 days (double your normal dose) and have a restful time. Take paracetamol for the discomfort. Fingers crossed for you. If your supply is hopelessly out of date, you could try a drop in centre.

[PMRpro Ambassador]

Hard luck - but with a bit of luck it will be a reaction and relatively short lived.

Was that its expiry date or how long you have had it? In theory they will say it is fine - but what matters is whether it works!

[Crowsfeet in reply to PMRpro]

That was the date of the prescription.

[PMRpro Ambassador in reply to Crowsfeet]

Then they won't be that far out of date - are they in their packet? There is usually a couple of years at least buffer.

[Crowsfeet in reply to PMRpro]

No they’re in a plastic pill bottle. I have a phone call with my GP at 1 tomorrow so will have a fresh supply for Friday morning. Am I right that the sooner you start treatment the shorter the flare. The first time I had pmr in 2006 it was not diagnosed for many months. By then all my joints were affected. I couldn’t do my hair or dress myself or drink a cup of coffee without spilling. It took 2 years to get off the prednisone. The second time it was diagnosed quickly and I was off prednisone in a matter of a few months.

[PMRpro Ambassador in reply to Crowsfeet]

Every episode of PMR can be different - even 2 years is pretty good really. Although we suspect delayed diagnosis doesn't help, immediate treatment doesn't guarantee it being shorter. The pred cures nothing - it is a management strategy while the underlying autoimmune disorder burns itself out, the pred doesn't have any influence on that

[Crowsfeet in reply to PMRpro]

Too bad. Wishful thinking on my part!

[PMRpro Ambassador in reply to Crowsfeet]

Hope springs eternal!!!!

[Marko666]

The issue here is the shot , not the pred surely ?

[Almostaweed]

I agree with Marko666. The issue is the Covid Jab. I was a health champion during the pandemic, championing the vaccine, so I hate to say this, but I developed PMR soon after getting my Covid jab last autumn and fear the jab may have been one precipitating factor among others. I am yet to decide whether to get vaccinated this spring.

[Hulotsholiday in reply to Almostaweed]

Same with me. It followed Moderna. Previous vaccines have been ok. I left it too long before increasing dose and it’s set me back around 18 months. I won’t have another booster. Hopefully Crowsfeet will treat early and prevent a full blown recurrence.

[Miserere in reply to Almostaweed]

Same with me - no more vaccines I'm afraid.

[Blossom20 in reply to Almostaweed]

Why would you think of having it? It's a no brainer. Thank you for being so honest..

[Almostaweed in reply to Blossom20]

Hi Blossom20 I really understand your point of view. Very nearly took that view myself but then compared the risk of the vaccination with the risk of being ill with Covid and jumped the other way! Hope I won't regret it. I much appreciated all the contributions on the subject and the admission that it can be a hard call.

[Kailacobweb]

I had my jab recently and all my joints were much inflamed however with paracetamol and time (4 days) the inflammation calmed down

[Crowsfeet in reply to Kailacobweb]

Very interesting because when I got in touch with my doctor he asked me to stop taking the prednisone for a few days to see what happened. If you see my posts I’d only taken two doses. He was concerned about committing me to months of prednisone again if the aches were due to a vaccine reaction. He’s given me a prescription for prednisone just in case I do need it. I was surprised because I was pretty sure it was pmr. So far on day one I’m not too bad.

[Almostaweed in reply to Crowsfeet]

Well, I weighed it up and discussed it with a neighbour who gave me this helpful advice: see how you feel on the day and if you are feeling well take the vaccination, if not probably don't. I was feeling good yesterday and had been able to exercise well on recent days so I took it. The nurse who gave me the jab advised me to rest and drink a lot which I did. So far no big reaction only a normal one. But I think it takes 3 or 4 weeks for the body to complete its immune reaction to the vaccine, so am not assuming I got away with it. I reduced to 6mg Prednisolone two weeks ago and am stabilising on that but PMR does hover in the wings along with a sometimes fluttery heart.

[DorsetLady PMRGCAuk volunteer in reply to Almostaweed]

Did nurse also tell you take paracetamol if arm hurt?

As for neighbour’s advice, if you leave it to the day of vaccination and you’ve booked a slot, it means that slot is wasted unless you cancel it early in the day and it can be rebooked. If not, then that’s a waste of precious NHS resources.

[Almostaweed in reply to DorsetLady]

Hi DorsetLady, good points. No I don't think any mention was made of paracetamol. But I am wary of mixing anything with Prednisolone as I had a bad time after taking a sleeping tablet (Valerian) which led to near-fainting episodes the next day. Re the appointment yes I agree - important to cancel in good time.

[DorsetLady PMRGCAuk volunteer in reply to Almostaweed]

Paracetamol should be fine with Pred - you only usually need it for a couple of days, and even one tablet at a time helps. I took it even on high doses when I had flu vaccines - my GCA went into remission long before Covid.

[Almostaweed in reply to DorsetLady]

Good to know. Thanks. May need it occasionally. It might bring me down from my steroid 'high'.

[PMRpro Ambassador in reply to Almostaweed]

Have you reported the fluttery heart to the GP? Needs checking out - preferably while it is happening which it rarely does at the practice of course!!!

[Almostaweed in reply to PMRpro]

Thank you PMRpro. I did mention it to the doctor and had 24 hour ECG monitor fitted and now a referral to cardiology (ECG again probably) in September. I quite wish I had never gone onto Prednisolone. The heart thing doesn't feel too serious as I walk up 6 flights of stairs once every day (just as part of my exercise routine) without getting terribly breathless.

[PMRpro Ambassador in reply to Almostaweed]

It may not be the pred - my arrythmia was due to the underlying autoimmune cause of the symptoms we call PMR having damaged the electrical cells in the heart that govern heartrate.

[Almostaweed in reply to PMRpro]

Thanks PMRpro. This is a bit scary. I guess I will just have to wait and see.