As suspected, the very quick taper rheumy thought up (2.5 mg per week til I get to 10, then reducing 1 mg per month), has caused a flare and I'm in pre-PMR pain - almost). Currently at 12 mg but should be down to 9 by now, if I was to go with her guidelines. GP refuses to let me up the pred saying "it's just regular arthritis". Prescribed enteric coated Naproxen. I told her she didn't want me on NSAIDS before. I reminded her that now I have fracture pain from the Osteo and PMR pain, hence the Rx. In November she had increased me to 20 mg which didn't have a chance to clear the inflammation, when the rheumy "got involved" a couple of months ago and was irate about the dose of Pred I was at (17 mg) and said "you probably don't even have PMR anymore if it was PMR in the first place". In December CRP was 6, in February was 9, March 5th, it was 15.94. GP says that is not high enough to cause a flare. I had a consult with my pharmacist on Friday, which was more comprehensive than any doctor visit so far. She is going to write a report to GP with her recommendations, which I have to review, make any changes I don't agree with and sign. We went over the last few months' blood work and that's how we discovered the steady rise in CRP since starting this ruddy tapering plan. My 3 month follow-up phone appt. with rheumy is April 9th. Very disappointed with my GP who was on board until rheumy sent her a very intimidating email. For her to say this is just arthritis was extremely upsetting. Sorry for long post/rant. Any suggestions?
QUICK TAPER; CRP RISING STEADILY; FLARING - PMRGCAuk
QUICK TAPER; CRP RISING STEADILY; FLARING
"GP says that is not high enough to cause a flare."
It isn't the CRP that CAUSES the flare - it is the marker that there IS a flare. It would be helpful if they actually understood what they were looking at! The steady increase over the course of the taper is confirmation.
And how long are they wanting to leave you on Naproxen? That is more dangerous long term than pred - for kidneys at least.
Exactly Pro. The GP had not even checked my bloodwork prior to the call. If I could take NSAIDs I'd still be taking ibuprofen, which worked. Plus, not only the stomach but heart at my age (just turned 74). So fed up with doctors who don't listen. The pharmacist is the one who said I should get bloodwork - prior to my PMR diagnosis more than 2 years ago, when my now retired GP had diagnosed me with old age for 5 months. Did GP even consider I was on Tylenol 3 when she prescribed Naproxen. Both to be taken with meals. Needless to say, I haven't taken the Naproxen yet. My stomach is already messed up. I will be making an IP appt. when GP is back from vacay. Hopefully she will have seen and read pharmacist report by then. Do you suppose I should up the Pred to 15 for a few nights? Next bloods end of month. Thanks for responding so promptly. š·
Yikes. Well I know my effective go-to appears to have been (unplanned) tears! 
Don't have any answers, but lots of questions. If you can appeal to the normal human empathy a doctor should feel for their patient you may be able to get your GP back on your side. I don't know anything about rheumatologists in our area but my only encounter with one, a woman, at the DGH osteoporosis workshop for patients back in mid-2016 I found very disappointing and was relieved I didn't have to see her after all had been referred, probably to her, but GP cancelled the referral when I told I wasn't prepared to take medication - fortunate to be able to be in that position).
Although the rheumatologist doesn't seem capable of seeing things from the patient's point of view, it might be worth a little exercise to figure out what their point of view is. They are disagreeing with you and your primary care doctor, but why? Is this specialist so afraid of the effects of prednisone they are prepared to make you stop taking the only medication available to you which relieves your PMR symptoms and because they have nothing else to offer they are saying you don't have PMR - despite clear evidence that pred at a moderate dose does indeed lower the inflammation which causes pain and your symptoms abate?
And no one knows what level of inflammatory marker will cause pain in a specific patient. PMR no doubt frustrates physicians because we are all different. In my case the thought of PMR never occurred to the doctor I had when symptoms started because she assumed my markers were "normal for my age". In fact, there are no elevated "normal" markers. If they are elevated at all there is inflammation somewhere in the body, and it could as easily be PMR as some other cause. I have very active osteoarthritis at the moment, btw, my hands have been very stiff and the joints have swollen. But my CRP has for months been the lowest it's ever been since this journey started. I currently (touch wood and all that) have "only" arthritis. But your markers are going up with the reduction in pred which shows something is amiss.
A quick google reveals that osteoporosis can cause elevated inflammatory markers, but not the CRP.
Btw, did I ever mention my "osteoporosis" post to you? If not, you may find it interesting:
healthunlocked.com/pmrgcauk...
š
So many questions eh? Rheumy wants me off pred yesterday and has always hammered that at me. Mainly because of the osteoporosis at this time. So why not deflect about the PMR which was diagnosed by a Neurologist. She's egotistical and was not the one who diagnosed PMR, nor did she do anything to confirm or not, his diagnosis. So that's twice now she has alluded to "you probably don't even have PMR" after 2 years of bloods, and all the other junk. I don't believe she even reads the reports, as with the CT that showed the first two fractures and she had sent me for the scan! Six weeks later ER doc found the report. I did cry out of anger, frustration and pain. Thanks Heron. About to check out your link.
Sounds like the person I encountered at the clinic who had no treatment for OP except alendronic acid which she referred to as, and I quote, "my medicine," pooh-poohed Vitamin K2 and didn't know anything about the problem of Vitamin D levels when the patient has sarcoidosis, which causes high Vitamin D levels.
Same with Dr. Theriault, OP Specialist. Looked at the K2 asked me what that was for. I told her and she said "oh you don't need that", even though it's a K2/D3 combo. I still take my K2.Then I had to have separate bloodwork for D3 levels, which are optimim. Shaking my head. I have a Rheumatologist, Neurologist, GP, OP Specialist and all combined they don't have the answers so you get fobbed off to the next. I've recently started with some neuropathy, shins down to feet. Left leg is worse. This should be quite interesting....not. At least that's what I think it is. Could be an offshoot from the fractures and nerve involvement. Just throwing my two cents worth in. Ha!I've saved your OP article. Quite the journey. What a journey we've been on!
Enjoy your day. My daughter is on the way with some birthday cake. SHHH! Mine was the 8th, hers today. Gotta have some fun.
Happy belated Birthday!
I bet that's who I met, but I really can't remember her name. Probably, and unfortunately, the local "expert" on OP. But she hasn't kept up to date, if she ever really was.
Did I tell you my reaction to my GP saying if it looks like my hand tremor can't be attributed to cervical arthritis I'll have to see a neurologist? Knowing that takes even longer than cardiologist referral I was tempted to say my heart will, hopefully, take me out before any referral to a neurologist transpires. I think it's been 20 months since the cardiologist referral. Also the request for a stress test, neither has occurred, although echocardiogram did show enough that GP says it's more than aortic regurgitation, my entire heart is "tired" whatever that means. š¤· Meanwhile gov must be spending a pretty penny on all the ads telling us how many ways Nova Scotians can access healthcare now. As though you can magic away 120,000 people waiting for primary care, not to mention those who are now relying on independent (not working with a physician) nurse practitioners. One of my friends has a nurse practitioner. She had to wait two years before referred to a specialist who discovered she has cancer in her throat. That specialist has given her excellent treatment, but she should have been referred much sooner, If she wants a GP she has to leave the NP and go to the bottom of the list of those waiting. š
Aw, my heart goes out to your friend. It's a huge concern that we who are "diagnosed" with whatever, continue to worsen while waiting for referrals to actually materialize. I've been referred via the ER at Dartmouth General to an Internist. Still waiting for a referral to a Neurologist made by them over 2 years ago. Lol. In the meantime, I've been seen by a Neurologist who wanted to "take care of my back" in the absence of any kind of caring from the Rheumy. Now, he's insisting on a referral from my GP.
As far as Dr. Theriault goes, I believe she's older than me at this point. I have a follow-up with her in April, as well as the Rheumy. Theriault no longer has anything to do with PMR/GCA since 1996 and will not answer questions with regard to it.
Lots of meat in your Osteoporosis article, which I had read, but have now saved. I did Tai Chi many years ago, and had an aunt who started it when she got her OP diagnosis. It's such a beautiful, fluid practice. QiGong is my next thing - but more walking first. Lol.
Qigong sounds like a good idea. I expect you could find one or two moves that would get you started without straining or stressing anything. Just something to get the energy channels opening up. When I hurt my knees in 2020 I was not able to do things which involved knees for a while and didn't start Tai Chi again until 2022. I distinctly remember the first time I went through the moves after that long break there was a moment about halfway through I really did feel a sudden flow of something - energy I guess - like something which had been tying me down was suddenly released.
Are you still doing Tai Chi?
Yes, I do it every day for between 15-20 minutes.
That's awesome. So that would be the first set. I always had trouble with cloudy hands.
Yes, I go through 24-form three times, with three different YouTube versions. I had to take classes several times and also practice from videos at home - definitely not a natural! Was gearing up to learn 100-form when, first of all, the instructor was unable to teach, and then we entered pandemic times. 
It does sound as if your GP knows nothing about PMR, how to diagnose it and how to treat it. No wonder you feel upset.
I think she has an idea about it. Gawd knows what the Rheumy said to her to make her feels like she knows nothing. Almost a fear. They've threatened to cut off my Pred if I don't follow their plan and the ruddy pills are counted to the very end of the taper. No wonder my anxiety is in overdrive Piglette. Lol! Gotta laugh or I'd be crying
I would have thought they could be criminally liable cutting off your pred. How appalling.
I'm sure if that actually happens it would be some kind of malpractice. I explained to the pharmacist that adrenal insufficiency is nothing to fool with. She agreed. Anyway one day at a time. Thank you piglette for your reply, as always.
Tapering Pred: DEAD SLOW or faster as per GP recommendation?
My PMR was diagnosed February 2022. After about 6 months my GP suggested what I thought was a very fast tapering regime. I showed her the Dead Slow regime, as shown on this site, which she dismissed. I ignored the NHS guidelines and have been following a (nearly) Dead Slow regime. Since August 2023 when my dose was 4.5mg I've been dropping .25mg every few weeks and am now on 2.25mg. No problems so far with this regime.
That's awesome. The only concern I have is that Rheumy and GP have threatened to stop the Pred if I don't follow their regime. They've got the pills Rx'd in 1 mg. and they are counted to the end of their tapering plan. I'm still not following theirs. Idotic.
You made a comment above that ibuprofen worked. If ibuprofen works for your pain then it is most likely not PMR. Or did you mean the ibuprofen worked for something other than PMR? Could that be a factor in them thinking itās not PMR?
No. It was for muscle pain caused from vertebral fractures.
That makes sense! I am so sorry you are going through all this.
Oh she knows it's PMR but her ego says she has to justify this quick taper plan somehow. She was very snotty about it. It makes a stressful thing even more so. The Rheumy is the problem here, who has managed to intimidate my GP who was new to me in November and was on board with some things PMR. Thanks for your input.
It's so frustrating how much opinions differ between clinicians over the effective use of Pred. Your rheumy sounds like a nighmare and you must feel like screaming. Oh, sorry, you already did that!
I only wish my rheumy was consistent. In 2020 at the start pf my GCA diagnosis, she was a listener, adjusting her tapering regimes according to how I was feeling combined with bloodwork and playing merry hell with my GP when he ignored my steady ESR/CRP rise over 4 months of tapering below 10mgs - sending me into a flare that set me back 18 months.
But once I was prescribed Actemra, she was so convinced it was the answer that she set me on a ridiculously fast taper which I attempted twice with monstrous failure. She still insisted on continuing with this, despite rising ESR/CRP levels and being barely able to crawl around the house. I was so poorly, had to cancel a follow-up appointment and had to wait almost a year for the next one where she actually listened again, so maybe we're back on track, who knows?
Unlike you, I'm fortunate to have inefficient monitoring of my tapering scedules as far as repeat prescriptions are concerned, so I tend to keep a couple of extra packs for such emergencies. Refusing to prescribe any more than what your incompetent rheumy has decided is enough is dangerous and she ought to know that.
I think sometimes when you continue to offer your own opinion on your illness to certain clinicians with too much of an ego, they tend to resent it and notes may appear on your file about your 'attitude.' I know for a fact this was done with mine. As patients how can we possibly know our own bodies? Such file notes aren't exclusive to the NHS either. My severely autistic son's social services file was littered with all kinds of untrue notes about me when I spoke up about cuts to his weekend support and actually had the gall to complain about a social worker. But I could write a book about that story!
i read your last post and with all you have going on, my heart goes out to you. I do hope someone listens to you soon before things get any worse. If that's even possible.
I don't think about the worse. I've just read where zolendronic acid can cause neuropathy, which has reared it's merry little head. Heaven forbid patients might know something, most of which I've learned from our forum. My GP always looks like a deer caught in the headlights when I tell her something she doesn't know.š I've learned there are times when not to mention the forum because it's completely dismissed. The Rheumy is, well, just one of those. Nice to hear from you and thanks.
Hmm, I did once mention the forum to my previous GP and she laughed, said it sounded like one of those 'mumsnet' things and not to be looking at it! I need to know as much about zolendronic acid as possible as due to have it soon but my calcium levels are too low just now.
Nice to hear from you too and good luck.
You should see a dentist before to make sure those jaw bones are good. Also they recommend an up-to-date Dexa scan to ensure you really need the infusion which I really did. No one mentioned this to me prior. It's painless, takes about 45 minutes in all. Here in Nova Scotia they keep you for a bit afterward to check vitals. There are a few rare side effects long term. This neuropathy I'm experiencing could be one of them, or it may have something to do with the nerves around the fractures. Either way, can't be helped and onward. All the best!
My last DEXA was Feb 2022 and my spine was -3.9. It had dropped from -2.5 in Jan 2019. My GP doesn't see the point in having another as it could only be worse from the Pred dose I'm on, not better.
She also declined my request for a spinal xray after I injured my back in October and still having pain, though much better now than it was in the beginning. I mentioned this to my rheumy and she's writing to my GP suggesting I have one. But paperwork is taking months to get through these days and the GP could still refuse. She has however arranged another blood test tomorrow as follow up to the really low calcium levels. Not sure if this is just rechecking calcium or a parathyroid test. Hope it is both, because despite all the bone supplements I've been taking nothing seems to improve.
What a strange system - my rheumy writes the request for x-rays and sends me to make the appointment! Last time I got to the receptionist and she asked if I wanted it done now as there was no-one else waiting.
That makes far more sense! But it may have something to do with my rheumy being quite a distance away from my home and it made more sense to hand over the ordering of monthly blood tests, scans, etc to my GP so I could have them done more locally. It works so long as there are no communication difficulties between the hospital and the GP surgery. Electronic systems may be quicker, but there must be some backlogs somewhere holding things up. They still blame Covid, NHS cuts, etc for all of that stuff.
Even if it were the GP making the request, I would call her or turn up to the open surgery and tell her, she would write the request and hand it to me to take to the hospital to make the appointment. She just looks it up on the computer system. She can see everything the consultants write on my notes though they can't necessarily see everything SHE writes.
Sounds pretty simple. I can only contact the rheumy through a rheumatology helpline by phone between 9am and noon - although they tend not to answer the phones until 9.30 and after 11.30. Then you go on a list for a call back from a nurse which might be that afternoon if you're lucky. The call back nurse makes a note of everything (allegedly) then feeds it back to the rheumy who feeds her reply back through the same pathway which generally takes 3 days before you get an answer. If she has not answered your question in an effective way, you have to go through the same channel all over again. It's very frustrating!
That's what I go through here in NS. They triage their calls. They do not answer the phone. You have to leave a voicemail. In two years the Rheumy has not called me as a result of my leaving these voicemails.
Same here with voicemails. I don't think anyone listens to them. It's crackers and such a waste of time.
Then make a complaint to the hospital. PALS is one option but an email to the legal department or the CEO may get more notice.
I'll try that next time. Touble is we're so accustomed to not being listened to here in the UK it's accepted everywhere as normal. Even other health workers you sound off to (sorry other health workers) accept it as normal too. They often have worse stories of their own family members.
My husband always encouraged patients to complain properly about something - otherwise there is no procedure to correct it.
I used to complain about everything until I got stung very badly by Social Services when I complained about my son's social worker. They made defamatory notes about me in my son's file 2 days after i issued my complaint to influence the complaints investigator. I fought the case for 3 years and it nearly broke me. In fact I think the stress brought on the GCA. I had the notes removed after 6 months because the social worker couldn't remember (conveniently) who had given her the information about me that I was on long-term meds for mental health issues, was seeing a counsellor and all the staff at my son's respite place were scared of me. All completely false. Yet my complaint went nowhere because of those notes. My son was refused a respite care place for months because of those notes. I will never forgive them for that. One of the staff I complained about was eventually asked to resign because of other complaints against her, but she's now managing director in charge of risk assessment at Ofsted. That's how it is in this country.
That's so sad. I hope it has all worked out now for you and your dear son. You can forgive intentionally, but don't have to forget.š·
When I became ill with GCA, and misdiagnosed several times, I couldn't look after him anymore. It was during the first year of Covid and he lost all of his support because no-one was working. He didn't understand and his behaviours became too much. He's in residential care now and I see him when I can but not nearly enough. He's well cared for and happy, but I do miss him. Not sure I can forgive the individuals at the Town Hall who covered up so much evidence and tried to destroy my reputation for their own ends. They will carry on doing what they do and no-one has enough power to stop them.
š„¹
Oh yes, I know. You can't win with SS. Straight out of uni with the mentality of a spoiled teenager and they know it all. Hopeless.
Exactly. But the culture goes way back in time. The older social workers advise the younger ones how to document false evidence on files by beginning with 'It is believed that ...' As long as they begin a statement with those words, they cannot be challenged. Heresay is allowed and is often accepted as gospel in a complaints investigation. I was told this by my son's Special Educational Needs Officer who works closely with Social Workers. When I submitted a Subject Access Request to view all of the files they held, every false entry about me began with those words, and the entries they didn't want me to see were heavily redacted.
If I "happen" to be in the hospital I will just turn up in the rheumatology clinic - the phones are only answered at specified times these days but there is a nurse there from 8am to 4pm doing infusions or seeing patients before they see the doctors so you can get to speak to one directly. Lot to be said for a hospital-based system - more staff around.
Couldn't agree more, although I'm pretty sure the nursing staff who do the callbacks are on the same floor as the Rheumatolgy Clinic. I was told they have to text her to let her know there's an email message for her. One of the nurses told me. I'm pretty sure they catch hell by times because of her ineptitude.
When the Rheumy gives me the req, I book whatever on line. When she books it, the paperwork inevitably gets lost and the Admin. Staff are blamed. Never a follow-up on tests, bloodwork, scans until the routine 3-month follow-up. If all is good, that's fine. But...
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