None of my doctors can give me a definitive diagnosis. I have two rheumatologists and a GP. One of my rheumys is at the Mayo clinic.
My diagnosis has changed from myositis to PMR to an "mRNA vaccine-induced myalgia" and then back to myositis, which was ruled out by an MRI. Then it was back to PMR and now they say they don't know. (Today marks nine month since the fateful vaccine.)
Except for my initial labs when this first started that showed elevated everything, my CRP and Sed rate have always been normal.
I don't want you to speculate on what my diagnosis might be. I've heard everything. I've read everything.
What I want to ask is if you can tell me the symptoms you get when *you* begin to have a flare up.
I would really like to know what a PMR flare up feels like *to you* compared to adrenal fatigue. My doctors think I am just experiencing adrenal fatigue along with "prednisone myalgia." They are now telling me that I likely *never* had PMR, and that all I have to do is taper from the prednisone, which I started doing more slowly again. (Last time I definitely went too fast.)
I am down to 11 mg and I have mild symptoms (of something).
I don't want to tell you what those symptoms are because, again, I don't want you to try to diagnose me. All I want is to hear your stories about what *you* feel when you taper and have a PMR flare up.
Thank you. I really appreciate all of you here and I wish for everyone's speedy recovery.
Emanuel
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The original symptoms - if I leave it long enough.
I think they are just trying to sound clever - on their basis, PMR isn't one illness, it is dozens, a reactive myalgia to each type of vaccine which already exists, or to various illnesses, or stress or trauma. But the overreaching fact is - it is pred-responsive.
It reminds me a bit of my elder daughter - the local university clinic couldn't diagnose appendicitis and sent her home as "definitely not ...". Two days later the regional hospital in the other direction removed an appendix that was about to perforate.
I had a similar experience to your daughter in 1997. Abdominal pains were getting worse. Phoned GP. He asked whether I could touch my toes. I could (I was really flexible before getting PMR last year). Not appendicitis, then, he said.
Pains got even worse. Into hospital. Appendix removed. Was told it was about to explode!
When you were first ill did you have excruciating bilateral pain in the shoulders and/or the hips? When you took steroids did a miracle happen, at least did you feel much better? If so it is quite probable you had PMR.
I'm sorry you are having such a confusing, horrible time just getting a diagnosis. This is not uncommon for many of us, however!
It took 2 years and 3 Rheumatologists for me to get a proper diagnosis and that was with a PET scan which showed inflammation in my shoulders and pelvis, despite being on at least 10 mgs Pred. and despite one of the leading Rheumatologists in the country ( Prof. Dasgupta) at the time being sure I didn't have it !
I have had dozens of flares in the 9 years since then and have not been able to reduce the pred below 11 mgs. For me, I usually can tell it's a flare when I get bilateral shoulder pain and stiffness, mostly at the base of my neck, and then bilateral thigh pain and stiffness. Eventually, I seize up and feel pain almost everywhere and feel quite unwell. A lot depends on how long I leave it before increasing the pred and by how much etc. It is all a delicate balancing act for each of us. I can have a flare with no apparent reason i.e. just increased disease activity.
I think PMRpro's point that if whatever you have is improved by Pred. then that is how you should be treated. I do understand why doctors are reluctant to give Pred if it is not necessary but you do need to be out of pain!
I very much agree with all the above posts and I'm sorry your having an arduous journey getting a proper diagnosis. I to went to various doctors/specialists/physios / acupuncture etc...to no avail.
By blood markers were not elevated despite debilitating pain, until my 3rd test, then they were quite elevated.
Basically once, finally, prescribed Prednisone I felt my life was worth living again.
Wishing you luck for more success in relation to your illness in the future.
You might be better changing the name of your post to “what does a flare feel like to you “ to get the response you want and not comments on the diagnosis.
Personally I have managed to avoid many flares by cautious management of my pred dose but sometimes I am aware of a change in overall bilateral pain levels lasting a few days which reduces with a brief increase of pred.
But in the same way that PMR is different for each of us, so too are flares.
In the last few years, almost every time I get a flare in what we recognise as PMR symptoms, I get a sore throat and feel like I have a cold coming that never becomes anything, I just feel under the weather for a few days. Then the familiar aches and stiffness get a lot worse and I seize up. I have no idea if this is due to whatever disease activity I have going on, or if I have a virus that is not expressing itself. Certainly, the last couple of major flares have come right after a viral infection. Anyway, my own diagnosis also seems to be a matter of dispute, so I have no idea what the heck is going on.
My flare symptoms are joint pain (bad aches), expecially in the shoulder blade.
I've never been below 5mg per day, though. And I went back to my 'last dose at which I was comfortable' (which sorted things) thanks to the excellent advice on this forum.
When I have a flare (incidentally I’m having one at the moment) I get pains and stiffness in my shoulders and hips much the same as when I was diagnosed with PMR. It doesn’t respond to Paracetamol. The lowest I’ve got with Pred is 8.5 mg but I’m currently stuck at 10mg. I always try a slow taper of just 0.5 mg but when I reach about day 14 in the reduction everything kicks off and I have to increase again. Good luck you’re not alone!
Thanks everyone. How do you differentiate between flare symptoms and pred withdrawal symptoms? Is it really the case that pred withdrawal symptoms go away after some time. How long? And is this 100% accurate?
When I tapered too fast down to 5 mg, I suffered for two weeks with classic adrenal fatigue symptoms. Only when I upped my dose all the wack to 20 mg did they go away, but here's the rub . . . I only got pain in my shoulders and thighs after raising the dose. My symptoms did not begin with muscle pain. Nor do I feel any stiffness that people here always talk about. It's more weakness and fragile muscles that hurt when I use them.
This is why my rheumy thinks it may just be prednisone mylagia and prednisone withdrawal at this point. But if so, why is it so hard to taper?
By keeping steps down SMALL and not rushing. Then withdrawal improves over time, a flare worsens. But if you drop the dose too quickly the effect is so great you suffer a lot more and is a lot more difficult to tell.
See this -and yes SW comes on almost immediately and gone within about a week -Flare may take a week, sometimes 2 or even 3, to materialise -and invariably get worse-
I've read the article and you and others say this a lot. But here's the thing . . .
I've been at 11 mg for a week and a half now I have had the same symptoms every day. It's not getting worse, but it's not getting better either. I have a mild fever (100 or 100.5) throughout much of the day, fatigue, brain fog, slight nausea, and mild pain in my shoulders, neck and legs (mainly tender thighs, and much worse with activity).
Everything is worse is the evening. But I wake up fine. So could it really be PMR? Everyone here says PMR is worse in the morning.
Morning stiffness for around 45 mins is one the the most common symptoms used as a diagnostic tool for PMR that’s for sure….as are many of the others you mention. So a bit flummoxed as to why you don’t have that stiffness when you wake.
Many do complain of symptoms returning in the evening which usually indicates that the dose is not enough to last all day, so you either a higher dose, or splitting the dose is required.
As you say in your question - is this PMR ? Certainly sounds as if you have elements of it, but cant say for sure it’s typical as we know it on here.
Don't apologize. I think I have needed to accept now for a long time that I do not have PMR, or at least not classic PMR.
I think I wanted a definitive diagnosis. I wanted to know what to expect, and what to do. But now I need to accept that I am more on my own with this, whatever it is.
Personally I experience a return of my original symptoms such as shoulder and arm pain and groin pain that really affects my mobility, getting in and out of cars and walking, when on the flat this improves as I continue walking. These symptoms persist beyond a few days and begin to worsen. I have replaced my bath with a large walk-in shower, this has really helped. The pain feels familiar and is accompanied by a low level viral feeling. Currently, as discussed in my recent post on the subject, I have mostly one sided, fairly severe neck pain and stiffness. ( not present in the early days of PMR 8 years ago).This has improved with an increase of 2 mgs Pred. I had been putting my symptoms down to a poor level of fitness due to a fairly sedentary lifestyle and the lack of motivation to combat this. I am on 7 mgs Pred hoping that this increase will be temporary. I know that the pain and mobility would be better if I increased to 10 mgs. Pred has begun to make me feel rotten itself after 8 years. I really, really want to get off it. Actemra worked well and enabled a swift flare-free taper to 10 mgs where I stalled. This has left me with painful Diverticulitis - bad in its own way and I needed to stop it. My Large Vessel Vasculitis ( non cranial GCA) manifests as PMR pain.
Diagnosed with PMR in September 2017 and then with GCA in July 2020, I have had 8 Flares along the way. Interestingly, your post as caught me just as I'm starting my 9th Flare...
For me, every Flare seems to start in precisely the same way as the original condition kicked in: my right shoulder plays up. My right arm goes into a weak mode: I have to use two hands to lift the kettle, I have to use my left arm to reach a coffee mug on a high shelf. I have to drive using my left arm as much as possible to avoid the pain of using my right arm. It's just as well that both of our cars have the latest Cruise Control that keeps one 'between the lines' or I wouldn't be comfortable driving long distances.
The reason it's always my right shoulder that indicates another Flare on the way is because, some 45 years ago, I was up a ladder replacing the gutter (or 'spouting' here in NZ) on a verandah roof. I over-reached and the ladder collapsed. Stupidly I tried to hang on to the spouting with my right arm - which was not very smart of me as I ended up with a Rotator Cuff tear which was never repaired. Evidently, PMR latches onto old injuries first when it comes to doling out another Flare.
PMR is really just a game of Snakes and Ladders played backwards: instead of making positive progress by climbing the ladder, in PMR's version of the game you're progressing when you 'slide' gently down the ladder - always following Dorset Lady's excellent taper schedule of course.
Thank you for your post, PMRpro. I was diagnosed with PMR on 8 September 2017: my GP started me on 40 mg Pred. Four days later, he reduced me to 30 mg. 2 days later, he reduced me to 20 mg. Later that day, I experienced my first flare. GP increased Pred to 30 a day. Things came right quite quickly after which I started a slow taper.
Flare #2 came on 3 January 2018 - I was on 10.5 Pred at the time.
Flare #3 was on 10 May 2018: I had just completed my first attempt at regaining my Single Pilot Multi Engine Instrument Rating: a highly stressful flight test. I was on 8 Pred at the time.
Flare #4 was on 2 October 2018: combination of lifting very heavy logs onto son's truck in Australia and having to sprint about 2 km between terminals at Auckland Airport to catch our connecting flight after a late arrival from Melbourne... I was on 10 Pred a day at that time.
Flare #5 was when I was diagnosed with GCA: I was on 3 mg Pred a day at the time. It started with a slight headache, a week later it suddenly got much worse. A week later, on 13 July 2020, I saw my GP who diagnosed me with GCA and increased my Pred to 40 mg. CAA grounded me once again...
Flare #6 was on was on 11 October 2020: I was on 10 mg at the time. The headaches were back.
Flare #7 was on 24 December 2020: right shoulder, neck, knees: all the usual suspects. I was on 10 Pred at the time.
Flare #8 was on 27 February 2022: right shoulder packed up again. I was on 5 Pred at the time.
Flare #9 was on 5 September 2023: I was on 6 mg Pred at the time. Triggered by being badly constipated for 2 days: maybe the Pred never got absorbed ?
As far as I can gather from that litany - I suspect you have never accepted you have a serious systemic illness and it is often a combination of doing far too much and reducing the dose far too fast without having listened to your body. Keeping PMR symptoms under control can be something of a balancing act - the pred cures nothing, it is a management strategy for the inflammation to allow a decent quality of life in the meantime while you wait for the underlying autoimmune disorder that causes it to burn out and go into remission.
But the timeline seems not quite right - according to that flare 6 is before flare 5!! Plus, if you had GCA in early July 2020 and were down to 10mg in December, the reduction the GP used was ridiculous - to reduce to 10mg in 5 months was far too fast. GCA remains likely to relapse in the first 18 months and most people need 6 months to reduce successfully to 20mg. Once you allow the inflammation to flare up it seems to become harder to get things under control - and the more it happens, the harder it gets.
Pred is absorbed from the stomach - it happens within an hour or so of taking it unless you take calcium supplements at the same time as calcium can coat the pred tablets and interfere with them being broken down which is why you should be instructed to separate them by at least a couple of hours. Constipation is unlikely to affect that.
Thank you for your reply to my 'litany'. You are correct: the timeline was corrupted: Flare #6 was on 11 October 2020, not 29 June 2020. I must have used up all my spoons when I wrote that... Thanks too for your recommendation not to take calcium supplements at the same time as taking Pred. That's certainly something I have be doing wrong.
That really does confirm my suspicion that you have often actually caused those flares by reducing the pred dose far too quickly. GCA in particular needs a lot more pred for longer than some doctors think and dropping from 40 to 10 in the space of 3 or 4 months is likely to have been the problem. From 20mg you MUST go slowly.
I do appreciate WHY you want off pred, but what you have been doing has probably kept you at higher doses for longer than if you had tapered as we suggest, It is one thing getting to too low a dose in PMR and putting up with the aches and pains but with GCA you are playing Russian roulette with your sight or having a stroke, Either of those and your CAA approval would be out the window for life, not just while on pred.
Those are the exact same symptoms I have in my right arm and shoulder but I have right sided neck pain too. GP has me doing a rapid taper as he says its not PMR this time. On 7.5mg at the minute.
Thankyou for that. I have been trying to stretch it. It definitely is involved. The pain is in that muscle, in the shoulder blade and very top of the shoulder as well. You can feel it pull there. I also think the vertebrae is possibly involved as well as it feels swollen on that side & is very noisy. I’m having a neck xray on Monday to see if theres any changes from my last one a few years ago.
It sounds as if you are in a similar situation as I am. Have seen a number (some well known) rheumatologists & now seeing a rheumy & a neurologist. The neurologist has referred me to a Dr Patrick Gordon for further investigation, who is a PMR specialist with an interest in neurological conditions. Originally diagnosed with PMR , then told I had necrotising myositis. Unfortunately my muscle biopsy was inconclusive as I had been on steroids for so long, which I am told could be part of the problem. Am trying to exercise as much as possible even though it's sometimes very uncomfortable so as not loose anymore condition. Nuffield Health do a course: 'Joint Pain Programme' after which you can use the gym at a much reduced price .
Your post was 8 months ago, how are you doing now? Have you had a more definite diagnosis? Hope you are improving.
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