I have just got the results of my PET scan and nothing is showing up! Prof. Hughes concludes that the PMR had gone away!This is after nearly 12 years mostly on 11mgs Pred.
His advice is to slowly reduce the Pred. and that the pain I have constantly is probably caused by the steroids.
I am really hoping he is right!
Any feedback from you would be welcome!
No advice... just wishing good luck.. sure it won't be that easy - but you won't know until you try.. 🌸
I still stick by my opinion that at 11mg pred the scan isn't reliable! Nothing showed on my scan either but my rheumy treats the symptoms as long as we can achieve pain relief. Not going to be forced off pred entirely because after 14 years my adrenals don't appear to want to play! Actemra is working well for most things,
There are rheumies who have a theory that when you have PMR for a long time like we have, there are two problems that are difficult to escape: one is that the immune system has learned its reaction and doesn't want to change and the other is that the pain perception is als "trained" and the body has a memory of the pain it can't escape from. However - other than leaving the patient to suffer the pain, they don't appear to have a solution or any ideas. Identifying means of achieving QOL has to be the aim. But at my last appointment with Christian I finally got heard! Between the Pain Clinic, Rehab, Cardiology there is nothing I can have that reliably deals with the pain. So he is giving me a steroid injection on Friday that we hope will improve the low back pain that has really dragged me down for 2 years. The Pain Clinic says no and to be honest, what she offers is achieving next to nothing. So now I am properly back with him, I'll take the risk. Sod Covid and the backlogs and long waits.
It is strange though - I had the ablation for the atrial fibrillation last week and the back pain has changed again and isn't quite as agonising! It felt worse after the procedure - from lying on the table for so long I assume! Maybe it poked something into place ...
Oh golly gosh PMRpro, pain is so complicated. I learnt this before I had any from my cousin, a physiotherapist who deals with sport’s injuries and pain management. It seemed incomprehensible to me that one could feel pain from learned behaviour. Nerve pain is a bit more understandable for me as I can understand how a nerve cannot know quite where it has been damaged and therefore transmit signals for a leg that has been removed say. But muscles?
Please do let me/us know how you get on with the steroid jab. Have they identified a problem in the spine? What are you not allowed that you feel would deal with the pain? I hope i am not being intrusive and I hope that the injection helps.
I know a relatively low dose of ibuprofen does the job. The pain clinic doc is horrified at the idea of taking it long term - even at such a low dose. Lidocaine patches from the rehab department do the job but the pain clinic doc pounced on that idea as the regs only cover their use for shingles neuropathic pain and they would cost me a mint if someone noticed we were using them and the prescription was stopped. The pain clinic offering manages other things - just not the stabbing s/i joint pain that can be scream out loud stuff,
Hopefully the steroid jab will. It is the sacroiliac joints, especially the right side. The pain clinic won't offer it as they are worried about bleeding because cardiology has me on anticoagulant therapy for atrial fibrillation and THEY have a hissy fit if I forget a tablet never mind deliberately don't take them for a day so I can have any procedure done. I had a cystoscopy done a couple of years ago - they won't do it if you have taken the pill, want it stopped for 2 days. Cardiology gave me such a dressing down when I told them - I'm too honest ... I'm just the patient in the middle.
Have you ever had ketamine infusions PMRpro? I eventually had back surgery for my back pain (it worked amazingly) but years before back surgery I had noticed after gallbladder removal I felt little back discomfort and it calmed my neuropathy/muscle spasms for several weeks my anesthesiologist used ketamine to knock me out so after some consultation we tried 3 ketamine infusions Mon-Wed-Fri near instant relief!! I had steroid injections but rarely could they hit the right spot due to narrowing of my back joints…appreciate all you do here….
How long did they last?
I typically got 5-6 months of relief I could cut way back on my pain meds at first I even tricked myself into believing i was “cured” lol I felt so well but ever so slowly the pain returned a little ache here and there then before long all the pain returned the plan was to get the infusions every 5 months to keep the pain away but iCovid arrived on the scene preventing that..
I am just beginning to find the frustrating restrictions of meds. I have a friend who is allergic to all pain meds. She is amazing as she copes well. I would live in fear. I know I could resolve or could have resolved my back issue if I had defied instructions and taken ibuprofen before it became chronic. Also I think paracetamol is really really bad for me. It is not benign in my case.
Just a thought. I had a really problematic s/i issue for years. This was before PMR. It totally resolved with a change of mattress! It doesn’t even get out of place now! The rest of me is vulnerable but the s/i seems pretty steady! Touch wood! There was nothing wrong as far as I could see with the old mattress. I changed because it was 30yrs old.
I have a new mattress!!!
Oh dear! Could it be the new mattress?
No, no, this is a very longstanding problem associated with the inflammation of the PMR. The problem is, we CAN sort it but the other doctors are disapproving of the means required. And I am in the middle. The only one who truly appreciates my problem with the pain is my wonder-rheumy and his view of the pain relief and steroid jab allies better with my needs. But the Pain Clinic doctor sees everything else and I have to face her on a regular basis.
my PET scan showed negative at the same time the biopsy showed positive. Have you had an MRI for your back pain?
PET scans can be a bit unreliable for cranial GCA - which is where you would get a positive biopsy. No, no MRI but we are pretty confident it is the sacroiliac joint, it is longstanding.
Good luck for today. I hope it works. Please keep us posted 🤞
So do I - the ablation last week seems to have and, weirdly, the back pain is also a bit ness knife-like since having that done!!!!!
Could it be back realignment? Have you thought of Pilates? Or an osteopath?
I did Pilates for years until I moved here where the opportunities are just not there, and I really doubt I could do Pilates now, I've tried a chiropractor - the pain eased in that it changed a bit but not enough to say it is sorted.
I have been wary of chiropractors ever since one crippled my elderly aunt. Probably at the age I am now! A cranial osteopath is good. Especially if they are very good and experienced. They are usually gentle.
Fingers crossed the steroid injection works. x
Gosh! I hope the Prof is right - that would be great, obviously. But weird him saying about the pain being caused by the steroids 🤔🤷🏻♀️ xx
I've heard a few say that - do they think it is a relative of steroid myopathy perhaps?
Yes, I think that's what he was referring to
I have steroid induced myopathy but it doesn't cause pain...it just disables me! Can't walk for more than a few minutes without muscles turning to jelly.
I don't understand why PMR would show on a PET-CT if the symptoms are being obliterated by pred.
By the way shouldn't taking adequate pred stop the body learning to have a pain response? Trying to think about this logically doesn't seem to help at all.
Wishing you a pain free future and hoping you get there soon.
Steroid can't cause pain but can make it worse. I must admit the lower dose I'm on the less pain overall I'm in unless my back is flaring in which case nothing works... But overall my pain lessens. On the Facebook forums for adrenal insufficiency a lot of people will agree.
Short but interesting thread! I do hope you are really on a positive path. 🍀
I'm plugging away at divesting myself of the last half mg and am beginning to note the re-emergence of probably autoimmune things I'd completely forgotten over the pred years, like itchy skin. Don't think this is anything to do with the time of year as it started during the summer. Loratidine helps! Would flare up a little with each reduction, subside after a pred day, but now that non-pred days vastly outnumber the pred days it's becoming more of a concern. Hope the old body does readapt to no pred. Possibly it's food-related (wheat? nightshades? chocolate?), and taking even low dose pred was enough to keep the reaction in check?
Do you suppose that psychologically, after years of dealing with a chronic something or other, some of us become geared to feeling discomfort or pain?
I never understood until recently how much work it is being old.
I never understood until recently how much work it is being old.
But undoubtedly better than the alternative -😉
Sometimes I wonder.
I’ve been there too Heron on the low days. I’ve hung on for the ‘ups’ and appreciate those but know what you mean.
Apparently Betty Davis once said 'old age ain't for sissy's'!
That’s very true….
Youth is the gift of nature, but age is a work of art. ...
Last spring I drew a series of pictures of some supermarket tulips in my place. It was interesting to look back later and see the progression from a rather featureless bud through the pretty and interesting stages of their height, to the final couple where the petals were twisted and drooping. I wrote a blog comment at the time, speculating that perhaps as we age we become more abstract. "In February I sketched the tulips I bought at the supermarket, from opening bud through perfect form to decaying flower with petals all askew. Are we like that? Do we become more abstract as we age towards death, as we draw closer to merging once again into the chaos from which we grew?"
That is very poetic. I often think we are like flowers. What always amazes me that you can have a tiny little seed, which then grows into a lovely flower. It always amazes me that the little seed can produce such amazingly beautiful, bright colours.
Here is a Grook by Piet Hein x.com/uncledd62/status/1506...
The Miracle of Spring
We glibly talk of/nature's laws,
But do things have/a natural cause?
Black earth turned into/yellow crocus
Is undiluted/hocus-pocus.
I agree plants are so beautiful to watch.I get them in winter to see them bloom.They remind me of Spring🌺
I always think when I grow tall things like foxgloves, blimey all that info inside a seed the size of dust. Like magic every time
It is a comforting thought is that, like almost all flowers, we live on in our children and grandchildren. Isn't it marvellous when we look at a growing baby and realise that part of that baby is from us. I am with you in the wonder of how the tiniest seed can grow into something as beautiful as the fuschia that Piglette has posted below. Like many others, I'm sure, I would love to see the tulips that Heron drew.
For all of its drawbacks, I'd take being old and wise, and at peace with it all over youth any day.
Yes!! Very hard work being old! 😂. But its got to be better than not being old. I have wondered about other autoimmune conditions returning after pred. I have completely forgotten my psoriasis. Although no contest between that and PMRGCA.
My pmr journey lasted 7 yrs. Pretty much the last yr on 1/2mg pred, which I thought I’d take indefinitely. Then one day decided to try 1/2mg every other day, then zero and it worked. After a few weeks I also had some arthritic pain in knees and wrists (didn’t feel like pmr though) and concluded that the steroids had been covering it up. But then that also went away. 2 yrs later, Everything is fine🤞. Good luck to you.
It's great you've been able to come off pred altogether!
The other night I couldn't sleep because whenever I lay down my arm started to ache like mad. Finally got up and looked up possible causes, and came up with cervical stenosis, which I suppose is inevitable because I've had arthritis in my neck most of my life. I stayed up for a while and read a book, and when I lay down again made sure my neck kind of curved backwards, rather than a little bit forwards or straight, and then could sleep. Arthritis does come and go and for the most part it seems a bit better now than it was a few months ago.
My ageing spine definitely suffers from some compression. I’ve found that yoga stretching ( especially in child pose) takes the pressure off occasional nerve pain which radiates down my arms and legs. 😬
sending blessings for the rest of your journey Suzy1959. 🌸
Yes, like you my flabber was gasted a couple of years ago!....had a scan told no inflammation any more. I do have pain, dizziness, but fatigue is the worst for me. It was concluded that I have Fibromyalgia. I sometimes wonder if that it what is diagnosed when it's not known what's going on. I was on 5mg when I had to scan....still am. When I try to lower not good!.....what surprises me is that I read Fibro dosen't react to steroids, well it does with me!Hope things ease for you now.....
I think this is true, and that's why response to low dose pred is used as a diagnostic tool to confirm PMR as opposed to fibro.
I am going to very slowly lower in a couple of weeks.....dreading it....but know I have to somehow....
Well, slowly introduce a half mg taper if you have regular uncoated 1 mg tablets. Take your time. I've been tapering from 2 mg since December 2022! That is not a typo. Right now tapering from half a mg with zero as my new dose and this has been underway since mid-September 2023.
All the very best Suzy. I hope 2024 brings you good health.
Good luck. Best wishes.
I personally think it's highly likely that because you were on Pred the inflammation hasn't shown up. It'd be great and amazing news though if true. All you can do is try and reduce slowly and see what happens. I don't believe that stuff about your body getting used to steroids because on the rare occasion I've forgotten to take the Pred I soon feel the pain. I came down fairly effortlessly from 25 to 10 but now feel the difference trying to go from 10 to 9 and that'snot body memory it's inflammation or I'd never have been able to get this far would I? Where the heck do they get these theories from when nobody een knows the basics of how steroids work let alone long term for PMR.
They make it up as they go along!.....
I'm so tired of battling with the medics spouting rubbish, I've had 12 years of it
Me too for about 10 years, have had very good rheumatologist for last couple of years, but with Fibro don't think I will be able to see him for that, because if I can't take the meds for it what else can he do to help me, although he has put me on the system where I ring his secretary to ask him to ring me......which I did in November but she rang me back and said he wants to see you........he is so thorough will discuss anything........can't fault him.....
He can hear you and acknowledge your problem and that alone helps.
So are you sure you don't have PMR any more but you do have fibromyalgia?
No I’m not, I am sometimes in lots of pain, very weak and dreadful fatigue. When I lower pred I can hardly function. Obviously Rheumatologists go by evidence in front of them, no inflammation, also told him I can’ t bear any of my muscles at any time to be touched, horrible, he said it was what they call Allodynia, he also asked if anyone else in my family had fibromyalgia….yes two nieces. It adds up I suppose.
Remind me how he concluded you don't have PMR, was it a PET CT scan?
Yes. Are you due to have one, or ever had one?
I've had 2 in the past, both showed the presence of PMR despite what the rheumatologists said. You do have to be on a low dose of Pred for it to show though. The first time if I remember right I'd come off Pred adn wa on hydrocortisone and the 2nd time I was on the steroid injections but towards the end of the cycle so the steroid level would have been low.
I am on 5 mg, think I was on 4.5 mg when I had it done. My most overriding symptom since 12 years ago is deathly fatigue. Blurred vision, haven’t driven for 18 months, after driving for nearly 50 years, so hard.
I hope they get to the bottom of it, you have been struggling for so long with this x
Yes, it has changed my life as it has many others, even though I had fatigue , starting on 15 mg I had a certain quality of life, short breaks, driving, got to 7mg, struggle began! What is your situation now?
Apart from the bloomin back which is a thorough nuisance I'm doing well thank you, down to 10 Pred to my amazement. I'm hypothesizing it's due to the Hydroxychloraquine but no way of knowing. Maybe, just maybe the PMR is finally bowing out after 12 years? Who knows. I will try and reduce the Pred again when the weather gets warmer but if 10 is as far as I can go, I'm also happy with that. i've lost weight, the moon face is going. Just need someone who can abracadabra my back problems.
At what point did you start to feel ill, would it be worth going back to that level of Pred and seeing what happens?
Can’t bear to think of the struggle to get where I am now again. Have had ACTH test last year cortisol’s reading not too bad. In February will very slowly drop, I’m hoping perhaps when I get to 3mg something might change…..or not….
Hi tangocharlie, I was diagnosed with PMR June 2023, relief from pain was incredible within 24 hours! Tapered easily from 15mg to 10mg but every time I try to drop to 9mg the pain returns. Luckily my GP has been brilliant and very supportive so after the third attempt to taper in at beginning of December without success I have been referred to a rheumatologist who I see next week, I can’t believe how quickly the appointment came through! I’m just hoping he’s understanding and I ask the right questions as there seems to be so much more to PMR than I was first led to believe!!
Suggest smaller reductions- try 0.5mg a time. Plain white tablets can be cut with knife or pillcutter.
But are you sure that because tapering from 15mg to 10mg was relatively easy -you aren’t assuming you are back to ‘normal’ life? You’re not - PMR is still there.
If you haven’t already, maybe have a look at this -
healthunlocked.com/pmrgcauk...
Thank you DorsetLady, I have read through the link that you sent me and found it very interesting, I will read it again as there are points on there that I will take a note of and take to my appointment with me.
I know that the PMR hasn’t gone just because the pain is under control at the moment, I now know I have limitations and after reading posts from other patients I am careful about what I do or attempt to do.
Once again thank you for your help and support.
I too had no real problems tapering my pred from 20 down to 9mg….but then got “stuck” there for 1.5 years. During my time at that dose I attempted to lower down to 8.5mg four or five times and sure enough about halfway through a slow taper, PMR symptoms would emerge. Even my GP could predict, with my monthly bloodwork, when the symptoms would re-emerge. Very frustrating.
So I went to a rheumy and tried Methotrexate which has helped somewhat, albeit slowly (now down to 5.5mg, but also on two immunosuppressive medications to get that low). I do have to be very mindful to avoid contact with folks who are ill as I’m prone to get sick easily and struggle to get well again (difficult especially during the winter months with COVID, RSV, and the flu). Unfortunately Actemra is not approved in Canada for PMR, and I’m not a good candidate for it anyway given my diverticulitis.
I do hope your rheumatologist is of some help for you and they should be of assistance with the complexities of PMR….autoimmune conditions are their specialty! It’s helpful to write down your questions prior to the appointment and note the responses. My rheumy was not bothered at all that I took notes the first few appointments…,it demonstrated I was invested in my health and wellness. Unfortunately, as read on some of the posts here, some rheumatologists are less than helpful. Good luck!
Hi, thank you for your reply. I know there are differences in our healthcare systems and also drugs that are available but PMR is the same wherever we are. I’m just hoping my rheumatologist is one of the understanding ones.
I will be able to put some questions together from the advice on here.
Yes, fingers crossed that you get a rheumy who is understanding and a good listener. As others have mentioned, you are doing quite well for only being months on in your PMR journey.
To be at 9mg after barely 6 months is not bad at all. All it means is that at present you need 9mg to manage the daily dollop of inflammation - it doesn't mean you won't get lower, just not yet. Some people need longer than others for the underlying autoimmune part of PMR to wane in activity. Half of patients take 15 months to get to 5mg - half take longer.
Thank you PMRpro for your reply. I’m still on 10mg at the moment as I haven’t managed the taper to 9mg yet.
I realised shortly after diagnosis that this wasn’t going to be as simple as it sounded when I first saw my GP and he told me the results of my blood tests.
It’s good to know that it’s not unusual for taper to take longer than a year which is what I was lead to believe at diagnosis.
Further to tangocharlie's comment, I think 10 mg is a bit high for a whole year, but others have suggested staying at 5 mg for months. We are all different and one reason is because we may metabolise pred differently. I think I must metabolise pred very efficiently because I was able to taper quite smoothly to 3 mg, although going very slowly once at 10 mg. On the other hand I've subsequently had PMR for several years although a very low dose is, mostly, all I've needed. Others may need a higher maintenance dose while waiting for PMR to decide to go into remission, simply because they absorb pred a bit less efficiently so not getting quite the same benefit someone like me does. I've also been fortunate that once I belatedly got a doctor who diagnosed PMR since then I've been allowed to taper at my own speed.
One expert in PMR, Dr Vanesa Quick (Quick and Kirwen) recommends keeping PMR patients on 10mg for a whole year befor etapering very solowly and that makes perfect sense to me. Not an idea well known to GPs though and not official advice. Call me a cynic but it wouldn't surprise me if when you do eventually see a rheumatologist they pressure you to reduce and or try put you on methotrexate, it depends who you get. You haven't even had a year yet so I'd think you're probably doing fine as you are, no need to worry at this stage. If it gets to say 18 months and you're still on 10 maybe worth some more investigations. Let us know how you get on and in the meantime read up all the info on here
I had a real tough time getting down from 10. But I made it and now at 5mg. I started this journey Sept 2022. Told my GP that now I am at 5mg I am going to reduce 1/2 mg every 8 weeks. He lets me do what I want and I’m so grateful for that. The weight I gained did come off and moon face is gone. Thank God. It does get better.
I do hope you are on the right path. Regarding PET scans, I can´t see that is a diagnostic tool for PMR? A clean scan even off pred. does not exclude PMR. It mostly exclude that nothing else is causing the pain. PET scans are used in PMR, and there is research mostly on GCA, but if diagnosing PMR was that easy, they could just PET scan us from the start. Being on 11 mg will not help.
The reason they don't PET scan us from the off is not that it doesn't very successfully diagnose PMR but because there are not enough scanners and cancer diagnosis takes precedence and it is an expensive test.
They do PET scan most patients here in DK with not obviously PMR. But it is only supportive evidence in the clinic. I have been 2 times 
It can support the diagnosis, and exclude other reasons, nut a clear PET is not the same as no PMR.
Well I do hope you are PMR-free, Suzy! If so, another reason for me to be optimistic!
All the very best Suzie as you tread this path. Let us know how you get on xx
Steroids can't cause pain but can make it worse. Also you'll get pain from withdrawal when you taper which you'll have to push through. My advice would be to taper super slow! As in 0.25-0.5mg a month. After 12 years your adrenals could well have atrophied. I hope they haven't and I wish you luck!
I had a muscle biopsy which was inconclusive (type of myositis), & was said that was because I had been taking steroids for over 3 yrs. If he says lower the steroids why not, but as everyone says very slowly. When I saw him he suggested raising my steroids which made some difference but not the same as when I first started taking them & helped to diagnose polymyalgia. On seeing an NHS rheumy (8 month wait) he immediately said with your symptoms I don't think you have polymyalgia, but necrotising myositis.
As everyone has said, this is not a certain road but worth a try!
There are 2 facts that give me some hope that the PMR may have gone and/or that the PET scan is accurate: The first PET scan I had in 2014 did show typical PMR inflammation despite me being on 10 mgs Pred. And in those days I was not in nearly as much pain as now and my blood markers were lower than they are now. Secondly, in the last year or so, on a few occasions when I have felt I was having a flare , I increased the Pred. but it didn't have any impact on my pain and, despite being on 11 mgs. , I have been in the most pain I have ever been in ( mostly shoulders, pelvis and hips).
It is a very complex picture.
I also feel that I need to trust Prof. Hughes- he may actually be right and wouldn't that be great!
I will keep you all posted on my slow reducing journey and thank you for your input.
👍
My shoulders don't hurt at all - but pelvis and hips can be awful. The right sacroiliac joint is worst and when it hurts, other local areas hurt too. If I can walk far enough then the trochanteric bursitis develops. Hope the current ideas work ...
Get far too wobbly for comfort below 7mg pred - not physically though.
Sounds like my back at the mo, both sacroiliac joints hurt and all the muscles around them, the left more so than the right. I think I've got inflammation from the waist down to the groin it's not due to PMR I don't think, but I don't know what on earth it is. I also think I've got trochanteric bursitis again, I had it about 10 years ago and a teroid injection sorted it. Dragged on for a year now, in the queue to see msk spine specialists. I'm so fed up of not being able to walk much
Much the same here. I need to make an appointment for the extracorporeal shockwave therapy for bursitis but they hadn't had the schedules for February when I last rang, I was in hospital last week and have totally forgotten it this week ...
Me too! I haven't been able to walk much since 2014- arthritis in hips and knees first and now in my foot which has resisted all steroid injections. My back hurts a lot too, especially pelvic area but I've hardly mentioned it to the docs as there have been so many other issues to discuss! I did have an injection in my bulging disc but that had no effect.
I think I may be immune to all kinds of painkillers!!
good luck 😊
Hope all goes well for you, in every sense. x
wonderful news Suzy!
I had gone for a second opinion regarding GCA diagnosis. Turns out I have Fibromuscular displasia. I had so many issues 3 years on prednisone/ Actemra…. I am now 8 months free of those medications and it has been interesting. I slowly have started to feel overall much better! More energy, etc. My eyes ( dry eyes, swollen) are normal, feet no longer hurt, headaches much better, and blood test reflect levels now normal. (Liver enzymes were high, etc) I followed advice here for tapering and went very slow.
I will say tapering was not easy for me, even going very slow. Endocrinologist told me it can take one to two years for body to adjust and metabolism becomes normal.
Best wishes! We are all “rooting for you”!
Did you have a previous PET/CT scan that revealed where your inflammation was?
Sorry- is that question for me? if so, yes it showed up in my shoulders and pelvic girdle. Classic.
I'm back!
Not feeling well again.......
So it may be PMR as well!!!!
I'm so disappointed
