When does it go?!

[Poly1975]

Hey everyone.

Would really love some positive replies 🤞

My story so far….

I had hip replacement in Feb 22…by Oct 22 I could not get out of bed….had to roll off onto the floor and loosen those muscles for around an hour or so. Tired all the time, sore in the glutes, hip area, neck and shoulders. My appointment for rheumatology was routine so

I ended up going private as I couldn’t continue my job any longer. Bad times 👎

My private doctor put me on 20mg pred….oh within a few hours I got my life back. Plus…..

Before going private - I got my notes from my GP who had mentioned PMR to the rheumatologist department when they tried to expedite my referral, but they said I was too young (47) and said my appointment will continue as routine. Just an FYI

Anyway, I got my NHS appointment, have been diagnosed and have weened myself to 7mg. I was good on 9mg, 8mg was ok, 7mg, I’m back to stiffness, napping again in the afternoon 🤦‍♀️ due to go to 6mg next week.

I could go to the gym on 8 but cannot go on 7mg (hurts to much) I love keeping fit 😞

My questions if you anyone can help.

I hear this is temporary, when does it go? Does it actually just go?

Pretty confident my hip replacement caused this?

Do I need to continue reducing each month for it to go? Or can I go back up? Would love to go back to 8

I’ve also just read that some turn into fibromyalgia 😳 is this true?

Thank you for reading and hoping for some positive answers 😀

[DorsetLady PMRGCAuk volunteer]

hi and welcome.

Quick replies -

I hear this is temporary, when does it go? Does it actually just go?

Yes it does, it’s known as a self limiting disease -but it can last anything between 2-6 years - there is no definitive period.. depends on individual.

Pretty confident my hip replacement caused this?

Maybe, but if it didn’t something else might have - sometimes we never really know what caused it.

Do I need to continue reducing each month for it to go? Or can I go back up? Would love to go back to 8

If you relapse because you have gone too low on Pred for your illness, then yes you can return to previous disease to see it that solves the issue. Would say you probably need to return to 9mg if 8mg was only okay.

I’ve also just read that some turn into fibromyalgia 😳 is this true?

It’s doesn’t usually ‘turn into’ Fibro - but it is possible to have both - autoimmune illnesses do like company. Some have more than one, some don’t.

Presume you read this Post -

healthunlocked.com/pmrgcauk...

Maybe have a read of this - explains about your illness as well as tapering and learning to pace yourself -

healthunlocked.com/pmrgcauk...

[Poly1975 in reply to DorsetLady]

Thank you so much for your quick response and thank you for your answers 😀

I will be reading your links now and thank you again!

[PMRpro Ambassador]

You aren't reducing relentlessly to zero - you are tapering to find the lowest effective dose which is then a management strategy to maintain the level of symptom relief you got at the start while you wait for the underlying autoimmune condition that creates the inflammation to burn out and go into remission. That can be anything from a year or so (particularly if your PMR started after a Covid vaccine) to 6 years and , in a few, even longer. It is estimated some 40% still need a low dose of pred beyond 6 years.

Go back to 8mg - that isn't a bad dose after barely a year and a hip replacement. It doesn't mean you won't get lower - just not yet. If you keep reducing you will end up back where you started as the leftover inflammation builds up again. Stick at 8mg for a couple of months and then carefully try 1/2mg at a time and allow time to assess how you are on each new dose. It isn't slow when it works.

And keep the keeping fit gentle - too much isn't good for PMR though it does depend on the individual and if you kept going all the way through the PMR. I did at first, even without pred for 5 years, but struggled in the gym: aquafit, Pilates and Iyengha yoga were all great. I also skied for years. Now I have other problems and am restricted to walking, but not much because of bursitis, and aquafit. But I am over 20 years older than you!

I don't think it magically turns into fibro. It is doctors who don't understand the disease and don't understand you need ENOUGH pred for pain relief at any stage and PMR doesn't equally magically go away in 2 years as some believe. They try to get the patient off pred because they are scared of it, the pain comes back and doctors decide to say it is fibro because they conveniently can't treat the very well, so get out of my hair and stop bothering me, You can have both and you may develop fibro - but not from the PMR as far as is known.

[Poly1975 in reply to PMRpro]

Hey.

Thank you for replying

Right ok, starting to understand more 🤦‍♀️

My last covid jab was May 21, gone natural since….. every 9 months 😂 due covid at Christmas time!!

I only started back at the gym in August and I was feeling fine 👌 was on 10mg then.

I will speak with my rheumatologist and ask if I can go back to 9mg,

Will also try something different to the gym, thank you for your advice ☺️

[PMRpro Ambassador in reply to Poly1975]

If you feel OK the day after with what you are doing - fine, Just be aware, And don't neglect your rest days - they are equally important.

[Poly1975 in reply to PMRpro]

Noted on rest days! 😀

[piglette]

I would say you may have reduced to far recently and you should hang on a bit and not reduce for the time being or you may get a major flare if you are not really comfortable now. You are also entering the mirky area where your adrenal glands start to wake up and the realm of the deathly fatigue!!

[Poly1975]

I’m having a flare! Very sore this morning. Fell asleep twice yesterday. I’m going up today to 9mg. I cannot function….and I need to work!

So, I didn’t know about the adrenal glands. I don’t know a lot tbh. Oh question. Should I/or do I need any scans/X-rays for anything?

Thank you 😀

[DorsetLady PMRGCAuk volunteer in reply to Poly1975]

Advice for flare in this link -get it under control pronto- the odd one or two mg may not do the job -

healthunlocked.com/pmrgcauk...

And this re adrenals -

healthunlocked.com/pmrgcauk...

[alangg]

You have come down quite fast - from 20mg to 7mg in 12 months. And you don't say by how much you are reducing your dose each time. I started on 15mg and after 4 initial weeks started a tapering plan of 38 days for each reduction in dose reducing by no more than 10% over the 38 days. If I felt that the new dose was not adequate, I would go back up for a week or two and then start the taper again.

This 'scheme' was devised purely by reading posts on this forum and I am hugely grateful to everyone who gave advice. That's why I'm still here!

It took me nearly 3 years to get to zero BUT... I didn't experience any flares, I carried on working throughout in quite a physical job and am now back to full fitness and have remained so for 3 years (touching wood...)

I didn't see a Rheumy; my GP was very aware that I was managing the reduction and happy to prescribe at my request. She even asked for a copy of my spreadsheet!

I hope this is a positive enough reply!

[Poly1975 in reply to alangg]

Good morning.

Ok wow, thank you for your reply and has helped massively 😀

So the private doctor put me on 20mg 4th April 23 weaning down over 6 weeks, when I saw the NHS rheumatologist he was ok with weaning off as he wanted to do some more bloods.

So my last bloods before I saw the private doctor was CRP 13 and ESR 17

When I came off the steroids for tests CRP 11 ESR 16

NHS then put me on 10mg weaning down by 1mg every month. So I have only been on steroids for around 8 months.

I went back to 10mg yesterday and feel so much better today already. I managed to get a telephone appointment with the rheumatologist Wednesday (5 days) I couldn’t do another day so made the call myself and went to 10mg 😬 also on Lansoprazole, Adcal and Alendronic Acid weekly.

When I came off the steroids for tests….I didn’t feel so bad as what I have been like on 7mg 🤷‍♀️

Full fitness I would love back 🤞 very positive. I have a very physical/demanding job too….I run a pub. Which I love doing! But hard work when Im not feeling great!

[Pixix]

I have both fibro & PMR…it happens…fibro came first, when I was about 50, then PMR joined it age 63. For me, fibro is easier, but endless, & I can’t take the drugs that can help.

[Poly1975 in reply to Pixix]

I feel for you so much!

[Pixix in reply to Poly1975]

Thanks, very kind of you! S x

[Hulotsholiday]

Sorry to hear of your difficulties. I think you’re looking for answers which it’s difficult to give. PMR has its own path and everyone has a different experience. It’s poorly understood by many medics and the first lesson is a degree of acceptance. That doesn’t mean giving up or giving in, but accept that it is life changing/ limiting and adjust expectations. Less exercise maybe, with plenty of rest. Lose the frustration and be pleased with any progress, however slow.

I think you’re trying to reduce too quickly; the disease is still bubbling away and the pains are telling you that. It needs a larger dose to keep it under control and a very very slow reduction to the next lowest dose. Otherwise you run the risk of yo yo situation with return of flare and a much higher dose may be required to bring that under control.

Sadly, there is no one size fits all solution. It does improve, but there’s still a journey ahead as your adrenals kick in. You need a strong mindset to tackle that and I’m confident you have that because you’re trying to do all the right things. It’s frustrating, but you will get there with patience ( and enough pred).

[Poly1975 in reply to Hulotsholiday]

Hey thank you.

I do indeed have a very positive attitude…usually, was just in so much pain I was feeling a bit down. And maybe I should not do too much exercise as I’m on the go all day anyway 🤦‍♀️

This forum has helped massively! So thank you guys ☺️

[Boss302Fan]

My suggestion to you is if you are feeling pain from PMR, then your current dose of Prednisone is inadequate vs disease activity. If you’re attempting to ‘stick it out’ hoping the pain will subside, wrong decision. If feel pain, increase the dose and don’t ever decrease the dose under that situation. If you aren’t feeling pain that’s a good thing. Don’t be surprised if your inflammation markers are normal when you’re pain free, that’s to he expected. Also, don’t be surprised if they are elevated when you are. But, sometimes you can be feeling some pain and the markers don’t relay that. Trust your body, not the markers. As to having pain and should you increase your dose without calling your doctoer? My philosophy is it’s better to ask for forgiveness after😉.

[Poly1975 in reply to Boss302Fan]

Thank you Boss

I have increased and every day is a little better 💪 not sure what the rheumatologist will say though 😬