Tapered off Pred in Jan24 after being diagnosed with PMR May 18. . I had my routine Rheumie appointment 2 weeks ago which was with a Registrar for the first time. I told him I had increasing neck, shoulders and wrist, hand pain for the past few weeks especially bad upon waking. He told me it would be my OA flaring! I questioned whether it would be flaring in all the places at the same time , he said it could. He took bloods, said he would give me a steroid injection in the shoulder with torn ligaments which couldnāt be operated on. Dr Plant had previously said it could be operated on!
So not a happy bunny! He said see you in 9 months for clinic.
I phoned the Clinic yesterday for my blood results as my pain is just awful. My appointment came through for July for my injection which is fine and they also sent me another appointment for Clinic 2 days later. I asked yesterday what that was for, the Nurse said a follow up with the Registrar. My CRP is 15 has always been1-2 after initial diagnosis. Cannot remember what my ESR is but the nurse said No raised markers! I said my CRP is raised she said No Comment! What the heck does that mean!
I know my CRP is raised for me , so long story short, I have a GP appointment for this Friday. I wonder though, will he want to go against the hospital ? I hope he sees it as I do, that unfortunately my PMR is back, though a little different, no pain/ stiffness in hips or thighs.
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Does sound suspiciously as if it is PMR grumbling...
Not sure a Rheumy can make a decision on a shoulder replacement - think an orthopaedic surgeon wouldn't be too happy about that!
"No comment" - means she doesnt want to answer your question - probably because she knows something doesn't look right and doesn't want to contradict a doctor.
See what your GP says... and do you really need to be under Rheumy for PMR, I guess so as you have other a/i illnesses.
Hi DL, Yes I was referred as I tested positive for RF factor back in 2018 My consultant has seen me every 6/9 months since as my OA is very progressive. Yes will wait to see what my GP says
Not back, it never went away. This is the typical time span for very low level disease activity to allow a build up of enough inflammation to be noticeable.
If YOUR personal normal CRP is 1-2, and is currently 15 then it is rising and is a red flag. If your GP follows the rheumy line you could be in trouble.
Is that Mike Plant at JC in Middlesborough? I'd be seeking his advice ...
Yes! So surprised I didnāt see him, the registrar just said he was his Registrar and seeing me today. First time I havenāt seen Dr Plant! Unfortunately too, the Clinic nurse told me the appointment in July was with the Registrar for a follow up. I have to admit , not feeling much confidence there!
Itās all so classic, except no stiffness or pain around girth. However I do have stiffness and walk like the tin man after getting up from rest. So add in my neck, shoulders, arms, wrists and hands! I know it doesnāt help having the OA, butā¦ā¦. I get the feeling this self diagnosis is frowned upon.
Hi. When I was dissatisfied with my appointment with a ānew to meā rheumatologist some time ago I was given to understand that I could choose which consultant to see. Acting on that information I wrote to the clinic explaining my concerns and what I would like to happen next including a request that it would be written in my notes that I didnāt want to see the particular rheumatologist in the future. I asked for my complaint to be treated with respect and for another review as soon as possible to have my health concerns addressed. In due course I had a new appointment with much better outcomes. See this:
Thanks for your reply. I really trust my Rheumatologist, and have done for 6 years. I was just surprised when I saw his Registrar, who seemed clueless. Yes I will ask in July to see him if I feel the consultation doesnāt go well with the Registrar again.
I'm also under the South Tees rheumatology department though go to the Friarage and now see Dr Chapman. In over 5 years I've never seen a registrar only the consultant or specialist rheumatology nurse though have at times wondered how they are training new rheumatologists.
FThis is just how my second time around started. I went to GP told her it was back. I'd never seen her about PMR before as we'd moved house during my first bout. But I'd just got the pred on repeat.She insisted on blood tests.....that took a week during which time pains got worse.
Results showed no raised markers. How is the pain, she asked when relating the results. Worse I said and then advised her about blood markers not always being raised.
I do need pred I assure you it is PMR back.
I already had some left over from the first bout so took a minimum q2.5mg which worked. Didn't tell her I'd already taken some. But asked for 12.5mg as starter12 months later down to 3mg. Smooth ride, no flares, so far!
Minimal intervention from docs. Much needed advice always come from the wise women on the forum and always spot on.
I came off Pred last October 2023 after three years , thinking the PMR had gone. In January 2024 the pain and stiffness in hands , knees, hips, back & neck came back , getting worse daily. GP appointment face to face with trainee was told it was OA in hands and ankles, and sent for X rays. Slight OA in both.
I decided to take 5mg Pred for a few days, thinking it could help. Miraculous recovery making life bearable again. I told my GP in a follow-up phone consultation what I had done. She was appalled and said steroids were not the answer to OA, ibuprofen was the best thing.I cannot take Ibuprofen by mouth as it irritates my stomach, the only way I take it is in topical ointment which costs a fortune.
Following the conversation with the GP, I have weaned myself off the Pred once again, although fortunately I still have lots left. Pain is manageable, but I am less mobile than I was.
GP has taken my repeat Pred off my prescription so I cannot be tempted to keep taking it. She insists it is not the answer to my problems, which I think are PMR grumbles. She , who has never examined me in person, says I have OA.
Why will GPs insist that PMR cannot be at the root of these pains and aches? My blood markers were never raised- even in the worst stages of the initial diagnosis , so are unlikely to be indicative now when I have self-diagnosed a relapse.
And OA is the LEAST likely cause given your history. Under the circumstances I would be seeing another GP in the practice as a start and if that doesn't work I would be seeking to change practices.
Agree with PMRpro about changing GP and/or surgeries.. it does sound very PMR-ish.
Call your GP's bluff, if she thinks it's OA and ibuprofen will help, then ask her to prescribe the topical gel... my late hubby used to get it as he was on meds for other things and couldn't take it orally..
Could you try a pain reliever like Tylenol/paracetamol for a day or two, and then pred for a few days (if you have any leftover), and note the results. It does sound like PMR symptoms and unchecked inflammation may result in the involvement of pain/stiffness of the hip girdle and legs eventually. Mine moved the opposite directionā¦.from knees up to hips, quads, groin, then 4 months later shoulder, biceps and neck.
Your CRP is high, a clear indicator along with the re-emergence of symptoms. You have also been through this before, so surely as the patient you have some credibility. Surely there have been other PMR patients who have experienced what you are currently.
All the best with your GPā¦.hope you get proper investigation, diagnosis and treatment.
Thank you for your reply. I wonder if there is a paper anywhere with figures of a relapse occurring?
I think PMRpro said that a relapse is often in the 6 months after finishing Pred ( though I could be wrong) Also I thought I was first diagnosed 2018 but it was 2019 so actually on Pred 4years 7 months.
Thatās about right timescale -really depends how long it takes for the untreated inflammation to build up enough and cause you pain in all the old familiar places š
But that is because people go off pred thinking it is gone. We still go on about a VERY slow reduction righ to the bitter end - taking zero as the new dose in the slowed tapers and taking months over that very last 1/2mg if you get that low. It rarely works first time if you get to 1mg and are persuaded to just stop 1mg on the grounds "such a low dose can't be doing anything". There was one person at 1/2mg every second day that held things - but zero was still a step too far!
Forgot to say - it does depend what your definition of relapse is. We had a very enlightening and amusing discussion between a couple of expert patients and at least 3 different PMR experts and one of them referred to "the PMR 'R' words" and he reckoned there were several!
To me, relapse is when you get off pred for at least 6 months before symptoms reappear. But many doctors call it relapse when they taper a patient too quickly/too low and the patient flares (as we term it). Relapse can only be when the PMR has burned out and gone into remission, for however short a time. Pred (nor anything else) cannot cure an episode of PMR, it is always only management until the natural progression of PMR means it burns out and goes into remission. It doesn't necessarily - about 5% have PMR for life though it is difficult to tell if that is due to PMR alone or lack of adrenal function returning.
Agree with you.. and much paperwork refers to ārelapseā when what is really meant is a clinical relapse [ie when symptoms are controlled] - not quite the same thing.
No itās notā¦. but the word is bandied about a lot, and personally I think itās confusing for some patientsā¦but weāve had this discussion before, and probably will againā¦ š
I have been off Pred 5 months. So itās difficult I think for my GP. I think he will want to wait until he sees what the Consultant says in July (pass the book) I will know on Friday.
I had also been off it for 5 months. I think I'm lucky in my GP, though if the second opinion hadn't gone my way, I don't think he would have prescribed any more.
I am sane as you. On Pred from 2018 and finished Feb 2024. I donāt have OA. I am struggling at moment with neck, shoulder, arms and hip pain. Have suspected carpel tunnel in right hand. Pain is not as bad as before but always there. Had bloods done and one came up borderline-ESR. Havenāt heard anything as on report it said patient informed. I wasnāt. I took 5mg Pred a couple of weeks ago and got a little relief.
Itās the disbelief by GP that it could be PMR returning š
They are low - which should indicate little or no inflammation, But sometimes the body doesn't mount what is called the acute phase response and they stay low. Then they are supposed to go by symptoms but some of them believe the lab results rather than the patient in front of them. But the lab results often lag behind the symptoms - and it can be a while.
I managed to get a telephone consultation with a different GP. After describing the pain and immobility, she agreed it sounded like PMR once again and not OA. She has suggested I āgo for the killā on 15mg ( my original starting dose) for a couple of weeks, and see if it makes a difference. She has even prescribed more Pred on repeat for me.
We discussed the issues about steroids and I made it plain I didnāt want to stay on high doses, but she said it would be sensible to knock the inflammation on the head right away, and reduce as before.
What a different attitude. She is in the same practice but takes the patientās experience and self-knowledge into consideration.
Letās see if things improve. I will keep you updated. Many thanks to everyone who has replied and commented. I donāt feel alone in this any more.
It is sensible to knock the inflammation in the headā¦ be interesting how you can proceed after the first fortnight on 15mg. Not sure itās necessary to reduce as beforeā¦ hopefully a swift drop down to around 5-6mg and then slow tapering will work.
Thank goodness for a GP who listens to the patient! It doesn't sound ANYTHING like OA to me either.
If it were me, I'd try 10mg first of all for a few days and see what happens. I originally was put on a taper of 15/10/5 for 2 weeks each. Within 6 hours of the first 15mg I was so much better and even at 5mg I was fine, it was stopping and flaring up badly in 6 hours that not only confirmed to me it was PMR (rheumy didn't think so though). I have often wondered if I had been allowed to remain on 5mg it would have been a whole different story.
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