Worried About (Possible) Recent Diagnosis of PMR.

[GlesgaGal]

Around 3 months ago I became aware of increasing aches and pains in my arms and legs and an overwhelming exhaustion. I’m normally a fit and active 73 year old. My neck felt stiff but I put that down to wear and tear as I also have worn discs in my lower spine which I manage with Pilates. GP sent me for blood tests, but by a complete coincidence, I had the Covid booster 2 days before the bloods were taken. CRP came back raised at 215. I’d had quite a bad reaction to the Covid booster, so I thought perhaps that the booster had caused the rise in my CRP. GP wasn’t convinced, however she agreed to repeat the blood test 2 weeks later and the CRP was normal.

My symptoms remained and so she referred me to a Rheumatologist whom I saw privately 2 weeks ago. He agreed that the Covid booster may have pushed up the CRP but felt that my symptoms were more than likely due to PMR…but jury still out. He has started me on 10mgs Pred which I’ve to take for a month when he’ll review me again. He advised that I keep a diary of how I’m feeling.

So, I definitely have more energy and feeling much less lethargic, back walking comfortably 3-4 miles a day. Don’t know if this is due to the Pred or not. My neck and lower back pain remain as they were, never severe, and no worse in the morning and continue throughout the day. I feel the pain in these areas are mechanical rather than inflammatory…but only my guess. I have a dull headache which responds to Paracetamol.

My concern is that I’ve been taking 10mgs Pred daily for almost 2 weeks and not seeing my Rheumatologist for another 2 weeks. If I’m honest, I’m still unconvinced that I do have PMR and scared of being on steroids unnecessarily. I’m considering cutting back or stopping the Pred before my appointment in 2 weeks to see if it makes and difference, but would this be unwise? Any helpful advice appreciated. Thanks.

[PMRpro Ambassador]

I know it isn't particularly helpful perhaps - but there is only one way to find out! However - for PMR, 10mg is a pretty low starting dose and may not have been enough to achieve a meaningful improvement.

Are you really a Weegie or have you left home? There is a support group and a dedicated charity for Scotland if you were interested:

pmrgcascotland.com/

[GlesgaGal in reply to PMRpro]

Thank you. Really appreciate your reply. Yes, I’m a Weegie but have been living south of the border for many years. I did wonder about the starting dose. I don’t suppose it will do any harm to stop the Pred and see how I feel? No risk of withdrawals on such a small dose?

[PMRpro Ambassador in reply to GlesgaGal]

No, not after only 2 weeks BUT since 10mg is such a low dose you aren;t going to have learned a lot. I think DL's suggest is pretty good and what I wondered - you will have spare pred and could try a bit more to see if a bit more worked better. You don't stay at the higher dose and tapering is easy when you can get away with a lot less but often it takes more to get things cleared out to start - a sort of springclean.

[GlesgaGal in reply to PMRpro]

All makes sense. So, as a trial, would it be best to perhaps try a higher dose first (was thinking 12mgs?) for a few days rather than my idea of stopping it for a week.

[PMRpro Ambassador in reply to GlesgaGal]

I would have started at 15 as you will have gathered. I was thinking more about how much pred is available to you.

[GlesgaGal in reply to PMRpro]

I’ve spare 5mg and 1mg tabs so was erring on the side of caution at 12mg. Will go up to 15. Thanks.

[DorsetLady PMRGCAuk volunteer]

hi,

So, I definitely have more energy and feeling much less lethargic, back walking comfortably 3-4 miles a day. Don’t know if this is due to the Pred or not

Due to Pred - most likely…. But as PMRpro has said you probably aren’t getting enough from 10mg to combat the pains… below normal starting dose.

You could stop Pred for a week and see if significant difference, and if there is, you could then go back on it before you next see Rheumy.

[GlesgaGal in reply to DorsetLady]

Many thanks for taking the time to reply. So, presumably having only been on 10mgs for about 12 days, I won’t do any harm by simply stopping it for a week to see how it goes, then restart if the symptoms get worse?

[DorsetLady PMRGCAuk volunteer in reply to GlesgaGal]

No it’s fine to stop - about 3 weeks is about the time when you need to taper off a bit more slowly. Hope you get an answer…

[GlesgaGal in reply to DorsetLady]

Thank you so much. I’ll give it a try for a week and see how it goes. Much appreciated.

[Hosers2]

If you have been taking any type of statin (for high cholesterol), they may be your source of muscle aches.

[GlesgaGal in reply to Hosers2]

Thank you for your reply. Interestingly, I had been on statins for a year or so before this all started, so under my doctor’s approval, I came off statins hoping things would improve. Can’t say I felt any noticeable improvement so that was when my GP investigated further and suspected PMR. So I’ve been off statins for about 4 months. What I do wonder about is the flu vaccination that I had at the beginning of September as it was shortly after that when my symptoms started.

[DorsetLady PMRGCAuk volunteer in reply to GlesgaGal]

Maybe.. some think that a vaccine [of any sort] was their trigger…

[GlesgaGal in reply to DorsetLady]

Yes, I read that somewhere recently while doing my research. Flu jab was early September and within a couple of weeks I began to be aware of general aches and pains and an overwhelming fatigue. Do you know if PMR sufferers have a more severe reaction to the Covid boosters? I had no reaction to the initial vaccine, but after every booster since, I’m completely floored for 24-36 hours. Any connection?

[DorsetLady PMRGCAuk volunteer in reply to GlesgaGal]

A vaccine of any sort can cause a flare in some people…. for others it makes little difference. Must admit I never had any issues with vaccines [ various] whilst I had GCA - but that was long before Covid came along.

[PMRpro Ambassador in reply to GlesgaGal]

SOMETHING has to be a final trigger on top of a lifetime of insults to the immune system. They may include illness, trauma, both emotional and physical, chemical or environmental or a whole host of other factors. That includes vaccines, medications and so on. It probably was the flu jab for you - but the majority of us had never had a flu jab before PMR appeared. Everyone has a different history.

[GlesgaGal in reply to PMRpro]

Yes, as you say, a lifetime of insults to the immune system must eventually take its toll on us one way or another. Hence the reason why PMR hits in later life. Makes logical sense.

[Hosers2]

My “statin experience” happened five years before PMR. I had taken Simvastatin for three years and had experienced all the muscle pains associated with statins: Rotator cuff pain, carpal tunnel pain, hips pain, etc. I quit Simvastatin cold turkey, and those pains disappeared within a month. Of course, five years later. . . . PMR. Same exact pains. All at once. That is why I believe the two are related.

I ended my PMR medications in Feb 2023 because the symptoms has been vanquished for six months. (I used Hydroxychloroquine instead of Prednisone).

In June 2023, I had my third Covid booster. The interesting result is that every time the weather changes, the injection shot location becomes extremely sore for several days.

[GlesgaGal in reply to Hosers2]

Very interesting to read your experience with Statins and good that you’re now off PMR medication. Thank you for sharing. Much appreciated.