It's been a long haul, and as with fellow sufferers exasperating at times. I was on 5mg Prednisolone for quite some time, when the Rheumatologist felt I no longer had PMR, and so to taper 0.5mg (half a tablet) every 2 months. Apart from taking Vitamin D, and having reached just half a tablet, when in October, that's it. I see the Rheumatologist later this month, when depending on a referral to the eye clinic to re-test pressure in the left eye, he is keen for me to start Hydroxychloroquine. Feel apprehensive because of one of the possible side affect re the eyes. However, with the cessation of Pred', symptoms such as sore arms, shoulders, hips, fatigue, etc., leave me feeling I should give it a try. The Rheumatologist feels I have Rheumatic Arthritis. Have today had an x-ray of both shoulders. Thank you for listening, and all the very best to you all in finding relief.
PMR from 2017: It's been a long haul, and as with... - PMRGCAuk
PMR from 2017
Overall good news - although I assume you mean rheumatoid arthritis? At least that has a wide range of options for management!
I do hope your step from 1/2 to zero pred works - but do remember that even 1/2mg pred can cover very low disease activity and it can take a few months to catch up with you. I hope it doesn't though
Thank you, and yes it should have read rheumatoid arthritis.
Hope the treatment works well - and don't forget, annual eye checks!!!!!
Thank you.
Hi there, can I ask about the eye pressure thing? Were they worried about GCA or some other condition? Asking because I am about to post about my issues with eye and increasing pressure it seems. Good luck with the reduction, hope it goes well.
Hi, Thank you. The re testing of eye pressure in a couple of weeks time is, I believe, precautionary. GCA wasn't mentioned. Wishing you all the very best.
Pred can raise pressures, so always on the lookout in case of glaucoma.
Pred can raise the pressure in the eye, if it gets too high it can cause damage to the optic nerve. Raised eye pressure alone is not glaucoma but over time other damage can occur and led to developing glaucoma which is sight-threatening.
Mild (low-tension) glaucoma (raised pressure within the eye(s)) is a possible side effect of hydroxychloroquine; so I presume they will want to check for no prior history before prescribing. It's worth remembering that the risk of side effects tends to rise with the dose and the duration of treatment. That means organ transplant recipients and those with life-long autoimmune conditions tend to be the ones most at risk.
I'm on hydroxychloraquine (HCQ) and although I can't know for sure, it seems to have helped lower inflammation and let me greatly reduce my Pred dose so you never know it might help your aches and pains. It takes a while to kick in though, probably months. Reading yur story the key question for me is whether you PMR has gone? Just because the rheumie thinks so doesn't necessarily mean it has, on what basis did s/he conclude that? A rheumie years ago said my PMR must have gone because he believed from textbooks rather than experience that it automatically just burns itself out goes away but that's not always the case. In the end I fought for a PET CT scan that showed that I was right and I still had PMR so ended up back on steroids. Sounds to me like you might need to push for further investigations?
Thanks, and my thoughts exactly re PMR & Rheumatologist's system of thought. A little encouraging re HCQ. I feel I don't have much of an option. Almost anything to be free of what at times feels crippling. My next blood test will show cortisol level, which should be interesting. Will take a look at a PET Scan.
I asked him the direct question, how do we know the PMR has gone? I said I'm still in pain, the symptoms are still there and classic. I remember saying if it walks like a duck and quacks like a duck it probably is a duck. And if it isn't a duck we need to know what it is! He pretty much stormed out and I got myself a new rheumie. Mind you that was in the day when we had choices. And doctors. I hope the HCQ works for you, it does seem to work for other inflammatory conditions like Sjogrens. I can't believe it's never been trialled and investigated as an alternative or steroid sparer to Pred, the answer to our problems might well be right in front of our faces for all we know. Keep us posted
There has been a very dodgy-looking paper about how it cured PMR patients! It does work for SOME people, as you know. So does MTX. So does LEF. Which only goes to show that PMR is in no way a one-size-fits-all diagnosis and far more complex than the average rheumy appreciates,
And the added compication that you can have PMR and other things going on at the same time. And also the possibility that you can be told you have PMR but it's actually a misdiagnosis and there's something else similar mimicking it - there's along list of other things to exclude. It's never clear-cut is there as there is no definitive test. Well actually there was in my case, the PET CT quite clearly showed it was PMR, classic inflammation in classic places, but few are lucky to get such a scan and diagnosis. And I do wonder if being off the steroids when I still had rampant inflammation going on actually caused more knock-on problems and partly to blame why my PMR is well and truly set-in, I expect for life? I ended up on huge doses of steroids for years to try and get it all back under control. We shall never know, but not being on enough steroids can be a problem worse than the side effects of steroids. We still know so little about this baffling disease
" not being on enough steroids can be a problem worse than the side effects of steroids"
I think so too. And it may not be obvious at the start of pred management - I had such a dramatic response to 15mg pred but that was the last easy thing for me. And that was after 5 years of total non-management.
My treatment right from the beginning was a catalogue of disasters, the doctors got absolutely everything wrong. When I look back now, I was in agony, really struggled to work and keep a roof over my head and on top of that had to constantly battle medical ignorance and bias. Im so grateful I found this forum and you in particular. I like to think that if one good thing comes from our bad experiences we will have helped advance knowledge and helped others navigate the rocky PMR path which has far more snakes than ladders to land on. Actually that's a good analogy. It's the luck of the dice whether you get people who help or hinder you! 😀
Will do! Cheers.
If you can't get a PET CT, as they're hard to come by, it'd be worth asking for an ultrasound because at least that would show inflammation like bursitis, which an x-ray doesn't.
Can I ask how a PET scan determines if you still have PMR please?
In very simple terms as I'm no scientist,it's a high tech and expensive scan where you are injected with a low dose radioactive dye that travels through your body quite quickly then the scanner can pick up any areas the dye sticks to which shows things like inflammation and cancer. We're lucky we've got a state of the art cancer wing in Leeds with such technology as that's what it's mainly used for
So badically shows areas of inflammation? And arthritis causes inflammation also, my rheumy said “of course more pred will reduce pain and inflammation, it s a painkiller, and wants me to continue tapering ,which was reluctant to do because of chronic pain , Im lost
Yes a PET CT shows inflammation, and there are classic areas such as hips and shoulders which are the hallmark of PMR. I'm afraid I don't know what it would show if it was something else eg RA, that's a question for the rheumatologist or other expert. I'd be lost in your position too, I have been there. Why aren't they interested in sorting out the underlying causes rather than just getting us off Pred at all cost when there aren't any alternatives? Steroids only work on some kinds of pain ie inflammation. The first rheumie I saw told me to get off steroids and take Gabapentin instead. I said but Gabapentin doesn't work on inflammation and steroids don't work on nerve pain and whatever I've got responds to steroids. In your situation, I'd say to the rheumie that I could continue to reduce, but if then inflammation goes up surely that would show that the steroids were doing the job and if so what are the alternatives, what is the next step and when can we review or how can I contact you if things aren't working? If I ever get a worsening of symptoms I personally always try increasing steroids a bit for few days. If that works it shows it was down to an increase in inflammation or the bucket of inflammation overflowing to use PMRPro's analogy. If it doesn't work then it's probably something else, which needs to be investigated. Your rheumie can't just leave you in pain and in limbo. Dp you have a rheumatology helpline at your hospital you could ring and explain yor plight?
Interesting comments here tangocharlie because my rheumy discharged me because my blood results were normal from a blood test 6 weeks before my appointment. My pleas to him regarding a PET scan fell on deaf ears, even though I was suffering from knee, hip and shoulder pain. He said it was arthritis. I ended up having to cancel my holiday because the hip pain got so bad I could hardly walk. My GP sent me for XRays - no arthritis! I took 5mg extra pred for 4 days, and all the pain went, and has stayed gone.I am now managing my pred dose myself, which my GP is happy with, and I'm hoping to drop to zero by Christmas from the half mg I'm now on.
Which backs up what I was saying, thanks for the story. I love the way they have a crystal ball and know exactly what's wrong with you without needing to see you or listen to you or do the right tests. x-rays wouldn't show rheumatoid arthritis or anythign inflammatory. They might show erosion or if there are extra knobbly bits of bone spurs. Then they try and fob you off and refuse to give steroids because 'steroids mask things' which is claptrap. Steroids take away inflammation so if the pain and stiffness goes, ergo I say it must have been inflammation, right? Finding out what is causing the inflammation is then their highly paid job. I've learned to question EVERYTHING and not be fobbed off and on every occasion it's been the right thing to do.
Sounds as if he did you a favour!!! Very early on, long before the diagnosis, a rheumy told me my knee pain was arthritis, she could "feel it". Thirteen years later, in Italy, a knee x-ray showed no sign of arthritis, The UK is very averse to using imaging, I really don't know why - and miss a lot of things as a result. A GP who didn't send my husband for a walk-in chest x-ray nearly killed him. The cancer was far more advanced by the time a colleague sent him for one and it was touch and go - he could have had an x-ray at least 2 or 3 weeks earlier.
Oh my, that's dreadful. My GP has come back after a long maternity leave. She's the best one in the practice and I was so pleased to see her again, but she gets booked up very quickly as everyone else feels the same! She must be the bane of the hospitals though, because she ALWAYS refers. She wanted me to have an MRI but said GPs are no longer allowed to refer for them. So she referred me to Musculoskeletal- 2 months ago and I've heard nothing...
A friend who's a GP says the only way she can get things done is if she puts patients on the urgent possible cancer pathway, which in the olden days meant you were seen in 2 weeks but now it's more like 3 months. And in the meantime she worries that she might have missed something and has frantic patients wanting to know what's wrong with them. They're still under her care until their referrals come through and she's powerless to do anything. It's very frustrating for all concerned
I had much the same - the first GP and rheumies were useless, including musculoskeletal. They were represented by a physio with an extra bit of paper who told me there was nothing wrong with my back as I could touch the floor with my fingers and he couldn't! I knew rather better thana that since I'd had a superb orthopod in Germany! Once I'd worked out what it probably was the next rheumy wasn't much use either. He wanted it to be an inflammatory arthritis despite my textbook response to pred. But a GP like yours, best in the practice on and off on maty leave and part time anyway, agreed it was PMR. Miracle appointment that was! Then I moved to Italy and everyone there actually knows what PMR is! But the thought of coming back to the UK scares the living daylights out of me!
And that's even with you and your late husband being medical people and knowing soethng was wrong. If I'd had x-rays on my spine a year ago I wouldn't be in the mess I'm in now but no, the physio's magic crystal ball said it was muscular - who needs science eh?
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