I had hip replacement in Feb 22ā¦by Oct 22 I could not get out of bedā¦.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 couldnāt continue my job any longer. Bad times š
My private doctor put me on 20mg predā¦.oh within a few hours I got my life back. Plusā¦..
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, Iām back to stiffness, napping again in the afternoon š¤¦āāļø 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 š
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
Iāve also just read that some turn into fibromyalgia š³ is this true?
Thank you for reading and hoping for some positive answers š
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Poly1975
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I hear this is temporary, when does it go? Does it actually just go?
Yes it does, itās 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 didnāt 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.
Iāve also just read that some turn into fibromyalgia š³ is this true?
Itās doesnāt usually āturn intoā Fibro - but it is possible to have both - autoimmune illnesses do like company. Some have more than one, some donāt.
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.
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!!
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!
Ok wow, thank you for your reply and has helped massively š
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 couldnāt do another day so made the call myself and went to 10mg š¬ also on Lansoprazole, Adcal and Alendronic Acid weekly.
When I came off the steroids for testsā¦.I didnāt feel so bad as what I have been like on 7mg š¤·āāļø
Full fitness I would love back š¤ very positive. I have a very physical/demanding job tooā¦.I run a pub. Which I love doing! But hard work when Im not feeling great!
I have both fibro & PMRā¦it happensā¦fibro came first, when I was about 50, then PMR joined it age 63. For me, fibro is easier, but endless, & I canāt take the drugs that can help.
Sorry to hear of your difficulties. I think youāre looking for answers which itās difficult to give. PMR has its own path and everyone has a different experience. Itās poorly understood by many medics and the first lesson is a degree of acceptance. That doesnāt 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 youāre 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 thereās still a journey ahead as your adrenals kick in. You need a strong mindset to tackle that and Iām confident you have that because youāre trying to do all the right things. Itās frustrating, but you will get there with patience ( and enough pred).
I do indeed have a very positive attitudeā¦usually, was just in so much pain I was feeling a bit down. And maybe I should not do too much exercise as Iām on the go all day anyway š¤¦āāļø
This forum has helped massively! So thank you guys āŗļø
My suggestion to you is if you are feeling pain from PMR, then your current dose of Prednisone is inadequate vs disease activity. If youāre attempting to āstick it outā hoping the pain will subside, wrong decision. If feel pain, increase the dose and donāt ever decrease the dose under that situation. If you arenāt feeling pain thatās a good thing. Donāt be surprised if your inflammation markers are normal when youāre pain free, thatās to he expected. Also, donāt be surprised if they are elevated when you are. But, sometimes you can be feeling some pain and the markers donāt 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 itās better to ask for forgiveness afterš.
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