Update

[Liby57]

Hi everyone.  I thought I’d drop in on the forum ,  I haven’t been on for a while but I am still interested to know how people are getting on. It’s now 15 months since I stopped taking Prednisolone and thankfully I am still doing well and haven’t had a relapse.   I just happened to read this article which I thought might be of interest to some of you.  I do believe that my onset was due to a period of high stress.  I haven’t ever tested positive for CoVid but my symptoms of polymyalgia started shortly after Covid arrived, and at the time my husband had tested positive for CoVid and was quite poorly for 3 weeks. I have had the vaccinations

The article states: Infections, traumatic injuries or sudden shocks such as bereavement or a period of high stress can trigger the onset of polymyalgia rheumatica. There have now been reported cases of polymyalgia rheumatica occurring after a COVID-19 infection or, in some cases, after a COVID-19 vaccination. Despite this, polymyalgia rheumatica will usually arise without a clear trigger being identifiabletopdoctors.co.uk/medical-ar...

[DorsetLady PMRGCAuk volunteer]

Thanks for this - but can I suggest you add the title of the article to your heading - it will then be more meaningful and come up in related posts….

healthunlocked.com/pmrgcauk...

[Liby57 in reply to DorsetLady]

I’m sorry you felt the title wasn’t meaningful. It was an update on where I am at the moment with some additional info that I thought people might be interested in.

[PMRpro Ambassador in reply to Liby57]

Just if you look at related posts - there are dozens with update in the title! Something like "Interesting info about PMR and causes" would attract more interest and come up when people are looking for info.

[DorsetLady PMRGCAuk volunteer in reply to Liby57]

Okay, and it wasn’t a criticism, but as stated it doesn’t say update on what. The link is very interesting but it won’t be picked up if anyone searches for info or in related posts, which is a shame - which was my point.

[Blearyeyed]

Glad to hear your good news , it's lovely to hear positive stories of recovery it gives everyone hope. Take care , Bee

[PMRpro Ambassador]

What a good find!! It is our good friend Prof Rod Hughes from Chertsey - so to be trusted.

And good to hear you are doing well!

[Purpleazalia]

Thank you for sharing the article.

I think we have seen on this forum that there are people who feel covid or a covid vaccination has triggered their PMR - good that medical professionals are recognising it.

It's interesting (and reassuring) that Rod Hughes says untreated PMR (unlike GCA) does not cause damaging side effects - good to know for those who either cannot tolerate steroids or choose to try alternative treatments.

Also, it is estimated around 1 in 1200 people in the uk develop PMR each year. I wonder how this compares to other inflammatory conditions?

[Exflex in reply to Purpleazalia]

But as mentioned on here, untreated PMR may lead to GCA.

Interesting to read from a respected professional the myth of getting off Pred in 12 to 18 months.

[PMRpro Ambassador in reply to Exflex]

Not sure he does really say that, 2 to 3 years is mentioned earlier - and I note it has been edited (badly if you ask me) so I wonder if the contradictions don't stem from him. We also know he doesn't believe it - he takes on Long PMR patients,

[Purpleazalia in reply to Exflex]

I read that paragraph as all people with PMR have a 15-20% chance of developing GCA.

I've been waiting to see whether anyone would start a discussion about (after a slow reduction of steriods) '...eventually, after 12 to 18 months, treatment may be stopped.' Perhaps he is using a scenario with no flares.

The initial reduction plan given to me by my GP would have meant I finished my steroids after 12 months. If only it was that straight forward...

[Exflex in reply to Purpleazalia]

same for me, rheumatology prescribed prednisolone reducing to 0mg at the end of 12 months. Here I am at 39 months on 1.75 reducing s-l-o-w-l-y to 1.5mg

In another post this morning, I’m wondering whether to resume Risedronate. I’ve been off the ‘bone saver’ for ~3 months. 🧐

[Purpleazalia in reply to Exflex]

Decisions, decisions. Sometimes it's hard to know what to do for the best. I wasn't offered a dexa scan or 'bone savers', so perhaps my doctor considered me low risk. He did prescribe Adcal calcium/vit D but it made me feel nauseous so I buy over the counter vit D instead.

I'm 34 months on steroids and have just stopped my second attempt at a reduction from 4mg to 3.5. I'll try again in March.

All the best with your decision making, and your current reduction

[Exflex in reply to Purpleazalia]

It was my wife who switched me on to Health Unlocked and I’ve learnt so much here. (She’s not a sufferer, but suffers me!)

This bone saving thing is so difficult. A Dexa scan is only a snapshot, so if you don’t have regular scans there’s no way of knowing whether the steroids are causing harm. But we know that the Bisphosphonates cause harm as well.

Anyway… I think I’ve decided to to resume Risedronate once a fortnight until I’m closer to the end, ie stop Risedronate at 0.5mg.

Having moved house 5 months ago, I was interviewed by a new GP regarding medication and when we discussed Pred and associated meds he told me to continue taking the bone saver. I was on 2.5mg at the time. You’d expect a medic to sat that, wouldn’t you. He referred me for a Dexa scan but said the waiting list is long.

[PMRpro Ambassador in reply to Purpleazalia]

ALL the guidelines I have ever read say the taper must be adjusted for the individual patient. All too often the patient who doesn't tick all the boxes is told it must be something else or they aren't trying hard enough. RH does actually adjust the taper and accepts many patients don't fit the 2 year story.

[Jackoh]

Good to hear your positive story and thanks for information. 💐

[Poshdog]

Thank you for link. Good article, very clear and straightforward

[HelenDaisy]

I’m glad to hear you are doing well. And thanks for adding the very clear article. It can be so difficult to explain our condition.

[MrsPractical]

Thanks for posting this. I think it’s particularly useful to show to friends/ relatives who have never heard of this condition. Pleased to hear of your successful road through Prednisolone reduction. I am 16 months on from diagnosis and now on 2mg and going very very slowly now so that hopefully I don’t suffer a flare. Lots of twinges along the way but nothing too bad.

[Liby57 in reply to MrsPractical]

Glad to hear you are doing so well. The key is to go very slowly, I found reducing at the lowest doses was difficult but got there in the end. Wishing you all the best.