Help please!

[September17]

Goodmorning,

I was first diagnosed with PMR back in 2014, usual treatment with pred, taper etc. Then diagnosed in 2021 with Fibromyalgia aand on 2mg maintenance dose of pred & 60mg Duloxetine plus Co codamol as needed. Then last month caught Covid for first time. Have had all vaccines. It really hit me hard. Now, one month on, I have a return of all the initial symtoms of Polymyalgia. Really sore shoulders, upper arms , hips, and swollen sore hands. Feel absolutely dreadful. Had inflammation marker bloods taken yesterday. Dread having to go through all this again as pred before caused a big weight gain. Just curious to hear if anyone else might have had the same after having covid, or maybe a complete coincidence! Happy Saturday everyone. xx

[PMRpro Ambassador]

Covid has been noted to cause effects that have been diagnosed as PMR as well as there being Long Covid cases which any of us would say were PMR. Covid certainly gives the immune system a major kick so not surprising if a previous autoimmune disease worsens or returns.

To reduce the risk of weight gain with pred, cut your carbs drastically, especially processed carbs and added sugar, LImit fruit - maybe it is healthy but some contain a LOT of sugar, Pred changes how your body processes carbs and causes random spikes of glucose to be released from the body stores in muscle and liver. They trigger release of insulin - more than will be required because the body expected a full meal to use it up - and excess insulin contributes to weight gain, causing glucose to be deposited as fat around the face, midriff and back of the neck, and also may lead to steroid-induced diabetes. Many of us on the forum have avoided both by cutting carbs.

This website is about the best for expalnations and easy to understand info on what has lots of carbs and what doesn't:

dietdoctor.com/low-carb

[Creas in reply to PMRpro]

that's interesting, I had pred without putting on weight but don't eat flour or sugar. Just meat, veg and dairy. Never anything processed.

I had awful side effects when I was told to try duloxetine - couldn't bear it after four days. I've heard a lot of people get PMR after taking the covid jab. There's apparently been a spate of PMR in Oxfordshire since these vaccinations began; I didn't hear that from my doctor who prefers not to acknowledge its existence but from a 'lady who lunches' friend of mine.

[PMRpro Ambassador in reply to Creas]

Some people have developed PMR after a Covid jab, but far more after having Covid. And however you look at it, a vaccination is often the trigger for developing PMR flu and shingles vaccines in particular. Or the flu. Or shingles, Or a lot of other illnesses. And most of us here with PMR had it long before Covid existed, never mind the jabs.

[Hidden]

I have had a significant flare of my PMR after my only episode of Covid in late December. I had a more minor flare after my last vaccine in October. There is some evidence that Covid and the vaccine may worsen or initiate autoimmune diseases. Studies cant be definite because numbers are so small, so they talk about correlation rather than causation.

[September17 in reply to Hidden]

Thank you Sillydogsmum, ( great name!) Sorry you have had a recent flare after having Covid. Interesting to read your post, my blood results will be back on Monday, but fear I know the answer already.

[Hidden in reply to September17]

🤞🤞,I felt that my crp and esr could be abnormal just because of the Covid , mine just went up to 9 and 25 respectively; it was the recurrence of usual symptoms that decided me to bump up my Pred.

[Lenore58]

PMR hit me 2 months after my first bout of Covid. A little over a year later, GCA showed up, 2 months after 2nd bout of Covid.

[September17]

Goodness, how extraordinary. Hope you are managing your symptoms. Thank you for your reply.

[moconnolly]

I reckon I started PMR after having 2nd Covid vaccine. Now down to 2mg and lot of pain which does not respond to co-dydamol. Not always both sides of body so not sure if another flare up of PMR or other cause .. to be investigated.

[PMRpro Ambassador in reply to moconnolly]

If a painkiller doesn't work, it increases the likelihood you have overshot the dose you need to control the inflammation. Easiest investigation is to add to the pred dose - using the flare protocol.

[moconnolly in reply to PMRpro]

Will consult my rheumatologist before increasing as want to come off pred asap and avoid the tapering procedure. Have stopped Alendronic acid as concerned about implications with dental treatment.

[DorsetLady PMRGCAuk volunteer in reply to moconnolly]

You may want to come off Pred asap… but if you still have PMR, it may not be that easy- or safe. Untreated inflammation builds up again and can cause your body more damage..

[PMRpro Ambassador in reply to moconnolly]

You can try it - but dumping the tapering procedure has two downsides and you can come unstuck from either or both. Your adrenal function has to return - dump the pred and you are at risk of adrenal insufficiency and, in the event of an emergency situation, and adrenal crisis which can leave you very ill, can even be life-threatening. In the context of the PMR, even 1/2mg can be enough to keep the inflammation being created by a very low disease activity at bay. Stop the pred altogether at any point, if the disease is still active the dripping tap of inflammation will continue and eventually build up to a level where you are back where you started - just like a dripping tap will fill a bucket and overflow sooner or later,

Stopping AA once you have been on it for some time won't make a lot of difference in the short term, possibly also not in the long term. Once it is in the bones, it stays there.

[Louisa1840]

Hello September 17. I can relate to all you are saying. I had Covid last Christmas and haven't really been well since. I've just had what I thought was a flare and upped my pred to 10 mgs (from 5 and a half) but it seems to have been a virus as I have been aching and shivery. Whatever - it's the same protocol as "Sick day rules" apply. I'll go back down to 6 (where I was last comfortable) and see how I go from there.

Wishing you all the very best.......

[September17 in reply to Louisa1840]

Thank you Louisa1840, it's exactly 10 years since I was diagnosed with PMR. I have been on maintenance of 2mg pred for 4 years, diagnosed with fibromyalgia in 2022 and on Duloxetine for that. Since having Covid in January I feel just like I did when I first got PMR. So depressing as I know what's ahead! I hope you get back down to 6mg without any further problems, and keep well on that.