New to this and lots of questions!

[CJDLSR]

Hello everyone

I was diagnosed with PMR in late June this year. I went to the Dr's because I was aching for no reason and about to go on holiday. Saw a registrar who immediately suspected PMR. He took blood tests and asked me to try 15mg Prednisolone daily for a week. He said that an improvement in a few days would pretty much confirm the diagnosis if my inflammation markers were also raised (which he confirmed later that day they were)

The preds worked as predicted and I had a pretty good holiday, did a lot of walking (a bit slower than normal, but that was OK) and, apart from finding uphill sections a bit more tiring than usual, felt pretty normal.

Back from holiday 4 wks later (and due to reduce preds to 12.5mg) but was feeling "funny in my head" as if I was mildly sedated. A few months previously I had had my BP meds increased and wondered if the head problem was due to that (maybe compounded by the preds). When the registrar rang to check up on me and I mentioned all this, he asked me to go in again but said I would be seeing a different Dr as he was fully booked that afternoon.

New Dr questioned the diagnosis as inflammation markers (ERG??) were under 40 and asked how I'd feel about coming off the preds to see what happens. Not wanting to be on steroids if I didn't need to be, I agreed but then she said "drop to 10mg tomorrow and 5mg next week then you're off them". I had already found this forum and knew that coming off preds quickly was a no go, so challenged this advice, to which she said "oh you've only been on them a month, it'll be fine".

It was far from fine!!! I had an extremely painful couple of weeks, unable to turn over in bed without shrieking out in pain (not normally my style!) and almost unable to weightbear on one leg due to pain behind my knee.

Dr rang after 4 weeks. Said latest blood tests showed higher inflammation (I think this was the other marker ?C something) so she was now confident about the diagnosis and to restart the preds at 15mg.

I also had a long-standing apptm, in another month's time, with a senior Dr at our practice regarding BP meds and, more specifically, another recent diagnosis of osteoporosis and medication for that, so was told that she would check on how I was doing.

Back on the preds, the accute pain eased, but the aches were still significant. As I was worried about ignoring this for another couple of weeks, I rang the surgery again, spoke to yet another Dr who suggested increasing the preds to 20mg for a month, and discuss again with senior Dr when I saw her.

Senior Dr advised against putting preds up and down, said aim was to reduce them, but should be done slowly. She then said that it was OK to go from the 20mg straight down to 15mg after the month.

I would say that things are VERY gradually improving, but the aches have not gone like they did in the beginning.

Last weekend I was due to reduce the preds, but we were going away again and I was nervous about spoiling our holiday, so I decided to stay at 20mg until we get home (next weekend), especially as I still ache.

Having read more and more on this forum, I am wondering whether to follow one of the protocols and reduce MUCH more slowly. One of my questions is, should I reduce at all when the aches are still so apparent??? Also, should I do this without consulting my GP??

Whilst away I have cycled (is this a good idea????) and brought on more aches.

2nd question - how much exercise is too much??? I know walking is good and I also do a yoga class once a week. Is it OK to do bigger walks or cycle rides when I ache??? I guess a lot of it is "try it and see" but I don't want to build up more problems for myself.

So sorry for this very long post but feel the whole background is significant for where I am now, and my current concerns.

Thanks for this very useful, friendly and informative forum. I look forward to seeing your responses 😀

[DorsetLady PMRGCAuk volunteer]

Hi and welcome,

What a chequered start you’ve had…and unnecessarily.

For info blood tests are ESR and CRP… and ESR at 40 is high in most books.

Hopefully a longer time at 20mg will sort things [and never reduce just before or whilst on holiday]. The guidelines do suggest reductions of 2.5mg from 20 to 10mg - but many cannot manage that- and I’d be thinking that with your start, 1mg a time would be much more sensible. .. and not whilst still in pain.

Have a look at these link re general advice - and exercise -

healthunlocked.com/pmrgcauk...

healthunlocked.com/pmrgcauk...

[CJDLSR in reply to DorsetLady]

Thank you so much for your full reply and links. As you say, there is a lot to learn, but plenty to read and gradually absorb. I will certainly be on this site a lot!!

[DorsetLady PMRGCAuk volunteer in reply to CJDLSR]

'Gradually absorb' is probably the most important thing.... try and cram in too much, too soon and you'll be overwhelmed..

There is plenty of info in the FAQs.. link under post and in the Pinned Posts - and always someone around..

[CJDLSR in reply to DorsetLady]

Thank you. This forum is so supportive and reassuring. Much appreciated

[SnazzyD]

Hello. Deary me, you haven’t been done any favours with this steroid dose going up and down apparently due to individual doctor’s theories.

Do read DL’s links. This should explain about the exercise but the bottom line is you really can’t go about life as if you are normal once pain is controlled. Pred masks the inflammation that is ongoing but your upset immune system will still be going berserk until it settles when it’s ready. It makes you more prone to injury as does Pred too. However, Pred is your friend.

You need to scale activity right back and build back up slowly, giving a couple of days for any payback to develop. If you are used to being active it really irks one to go back to a level that doesn’t even register on one’s radar to be worthy of being called activity. Generally, I found that the body tends not to like repetitive movements especially under strain.

[CJDLSR in reply to SnazzyD]

Thank you for your honesty. It's what I feared, but not what I want to hear!!! However, it's better to know and understand, and that's what I'm about at the moment. The more info the better!

[SnazzyD in reply to CJDLSR]

There are a number of people here who were extremely active before PMR and know the heartache of having to cut down pursuits that gave them joy. It can seem at the beginning as realities kick in, that you’ll never be there again. It will get better but not at the speed that is often implied by a simple sounding plan. You will get there.

I forgot to say that Pred can make one feel a bit squiffy and fluffy headed particularly when it is at its highest in the bloodstream about 1-3 hours after taking. It can also temporarily mess with your sight focus which changes with dose and can add to this wafty feeling. You may also find you feel quite tired (Pred and PMR) but still a bit wired (Pred) which can make you feel you have more energy than you actually have.

[CJDLSR in reply to SnazzyD]

That's really useful. Thank you.

[Pr0jection in reply to SnazzyD]

Read this with interest, Snazzy D. Your last sentence is exactly how I have been feeling.

[PMRpro Ambassador]

Hi and welcome! What a tale of everyone singing from a different hymn sheet!!! And how they have messed you about. I find it very unprofessional to directly contradict another doctor's method of managing anything. ESR, the rate the red blood cells settle to the bottom in a vertical tube, isn't always raised at all in PMR and is often in the 20s and low 30s. When it is really high you suspect there may be GCA lurking in the wings. Your speedy response to pred should have spoken louder.

I think you have caused yourself a massive attack of DOMS (delayed onset muscle soreness) by exercising at a level that isn't really an option with PMR. You have a whole new normal now and pred isn't a free pass to go back to the normal level of activity you had pre-PMR. Sorry - but it will probably come eventually providing you accommodate the PMR now. John is a shining example of what CAN happen when you do - but he started with hydrotherapy, he couldn't even walk at diagnosis, and was a bit younger than you (sorry but that does play a role too).

healthunlocked.com/user/Ski...

It isn't a good idea to exercise when you already hurt - training happens because muscle spindles tear, causing DOMS, and then heal in a few days, leaving the muscle stronger for next time. But that healing process is delayed when you have PMR. In some cases, they can take weeks to heal and every time you exercise, they tear again - takes even longer.

You have answered your own question - exercise made the aches worse. No, it wasn't a good idea. And when you exercise - apart from needing to get right back to absolute beginner level, you must allow at least one rest day before having another go - even when you feel fine.

You will be overwhelmed by the info you meet so if you have a question - ask. Don't feel you should know it 'cos you read it once - though it gets a bit wearing when someone asks the same question 10 times and it is the sort that the answer isn't going to change!

[CJDLSR in reply to PMRpro]

Thank you for this very full response. I am getting the message loud and clear that I will have to adjust my expectations of what I can do!!

I asked my (very supportive) husband to read your reply which sent him into a very thoughtful mood as he also realised that this isn't something we can pretty much ignore. I absolutely don't want to make myself worse!!!

So thank you for this timely reply. We must now reconsider how to adapt our lifestyle to accommodate this condition and ensure that progress and not the opposite is gradually achieved, while continuing to learn as much as we can about it. I don't expect this to be a quick transition, but at least I am left in no doubt about what to expect and how best to deal with it. I asked the question and received the answer!! I shall keep reading!!!

Thank you again.

[DorsetLady PMRGCAuk volunteer in reply to CJDLSR]

Maybe also get him to read my intro post - it’s for families (if they are interested) as well as patients. After they have to live with the effects of PMR as well as you.

[PMRpro Ambassador in reply to CJDLSR]

There is also a set of videos from medical professionals and patients on YouTube - links are in a post by Skinnyjonny

healthunlocked.com/pmrgcauk...

You may have graduated above this already but they are useful to see,

[CJDLSR in reply to PMRpro]

Thank you. I shall look forward to viewing these.

[piglette]

All I can say is I am gobsmacked. It really frightens me that our medical professionals are so badly informed/trained. The sad thing is it seems par for the course.

[Daffodilia]

I think you will need to pace yourself with exercise - may be half usual

[Potemkin]

I was active before getting PMR - running 3 x a week and doing yoga. For about 6 weeks I did nothing giving my muscles time to recover.

I then started exercising slowly doing 5-10 mins slow jog and part of a yoga class. Running has been easier than the yoga. I also leave at least 1 day between each. I used to run and do yoga on the same day. I've decided now that running shorter distances more frequently helps my head and I can manage it. I built it up so I can now do a whole yoga class.

You really need to listen to your body and rest if needed. I've learnt to manage my frustration and be patient.

I'm now reducing my dose and know I might need to adjust my exercise. It is hard though as exercise is how I support my mental health.

I think it's accepting there isn't a quick fix. Good luck.

[CJDLSR in reply to Potemkin]

That's really useful, and kind of you to share it. It's so reassuring knowing there are other people out who have been or are going through the same thing. Thank you so much.

[AtopicGuy]

Regarding the advice to stop the steroids immediately:

This is generally okay if the patient has only taken them for 2 or 3 weeks (depends on the dose). Any longer and there is a danger that the adrenal glands will not restart producing the natural hormone cortisol fast enough (adrenal insufficiency). That's why patients are told to taper the dose.

The above advice is so important that pharmacists are meant to issue card(s) to keep on the person. In an emergency, those treating the patient will know what dose they are taking.