it’s taken 5 months since the onset of PMR to get a first visit to a Rheumatologist here in British Columbia, Canada.
She’d like to get me below 5mg of pred asap and weaned off fully within the first full year. She also prescribed one daily use of 200mg of Hydroxychlorquine (Generic Plaquenil), which apparently takes about 90 days to build in the system, after which it may assist in weaning off pred.
The plan is to then get off Hydro the following year.
In the interim, she believes the correct dose of pred/med is low enough that you wake up with some level off noticeable stiffness that disappears after the first half hour of moving around.
Right now I’m on 7mg of pred, waking up with no stiffness at all, and not really a big fan of hunting for pain.
Has anyone had any experience with this type of plan?
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MikeVanBC
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DON’T taper to the level where you get pain. PMR always wins once it can get its foot in the door. I really wonder what your rheumatologist knows about PMR. I feel sorry for her patients.
I live in Ontario, Canada and have never seen a rheumatologist. My doc said if there were difficulties tapering perhaps then a visit to a rheumatologist would be called for. Four years on I’m at 4 mg. I’ve always been in charge of my schedule.
I am in New Brunswick and same. I am back up to 13 after getting to 9.5. I ended up in ER because my doc was on holiday. Small town, ER is also urgent care. Thought I had an ear infection. It was my jaw, TMJ flaring. Doc on duty took a look at me, went over my tapering asked about pain levels, stiffness, etc. and said, “you are tapering too quickly for your body right now, you shouldn’t be feeling this awful”. He said he slows his patients right down. It isn’t a race. Some morning stiffness but I shouldn’t have pain that makes me cry out. I said that is what my doctor said and he laughed. Told me not to worry so much about tapering quickly. Rest and nutrition and exercise are the best aids to help me get off prednisone and keeping the inflammation at bay is key. Inflammation = pain. My doctor has managed PMR patients before so I have never asked for a rheumy referral.
On dear another one!..... "Within the first year"....where do they get these ideas......and adding Hydro in as well, which quite honestly I don't think I have heard of anyone else on here adding that......My sister tried it for Rheumatoid Arthritis......it did nothing, except made her very ill......she was off that quick....
Is there any merit to tapering to the stage where you have morning stiffness for an hour, or is it better to be more comfortable notwithstanding a slightly higher dose of pred?
(Health vs Comfort? Longevity vs Quality of Life?)
And do you know anything about this Hydroxychlorquine?
She is totally crackers. Though her ongoing "lowest effective dose" isn't too bad. Shame she doesn't understand that is the long term requirement. If you get to her definition though I would say you are a step too far - let her try the hour od stiffness in the morning and get on with life.
Her trust in hydroychloroquine worries me since the single study that supports its use is a bit flakey. There is one person on the forum for whom it has worked very well. I suspect that it is like all the alternative options - it may work well for a small group of patients.
I live in BC too and have never been to aRheumy. I’ve had PMR for 18 months and am at 5.5 pred now down from 15mg. I’m reducing doing the DSNS plan with an occasional hold at a certain level if I get some pain back with any rise in CRP levels . My Family practice GP gave me an open order to get CRP blood tests done at Lifelabs if I need to check. I don’t see him but he trusts me to reduce prednisone slowly. He knows that I get good advice and research from this forum. If I have anything stressful coming up or know that I need to be pain free and not have the deathly fatigue to ruin an event I will happily postpone a reduction. Quality of life wins out for me! I know a.couple of others who have or have had PMR, no one has mentioned taking Hydroxycloroquine.
Thanks Allie. Good to know a PMR neighbour I’m in West Van and am back and forth to the island a lot developing my SookePoint Ocean Cottage Resort. I don’t want to lose any time needlessly immobilized with pain. I’m now leaning toward staying on the path you’re on.
I’d be wary to follow her plan especially when we are trying to avoid morning stiffness, not look for it. Maybe she’s referring to pred withdrawal as you taper. The taper she is proposing sounds awfully fast though. I can’t speak to the hydrox but do you need a steroid sparer to help you taper? Does she answer your questions?
Perhaps a second opinion is in order. I’m assuming there are others available to choose from in your area.
I was able to see a rheumy a month after diagnosis by my wonderful GP. She was unprofessional, acted superior and accused me of lying about putting up my pred dose. I lasted 3 appointments and advised them I wouldn’t be returning.
My GP then oversaw my care for a few years until I got stuck at 9mg. He referred me to a new rheumy and it has been good thus far. Perhaps your GP may be of some help.
All this to say following your own plan has got you yo 7mg with no morning stiffness….you must be doing something right. Our doctors and us as patients should be a team, trying to achieve optimal health….how you get that differs from Dr. to Dr. Some folks are left to their own devices which affords flexibility, but not much guidance/direction along the way.
In the end, at times, we must advocate for our health. Good luck moving forward.
Morning Mike, can't help with the Hydro as never used it, but it it does seem to me to an extremely quick taper down. Yes, PMR is very personal and it affects us all in different ways and time frames, but the experiences here would generally indicate that very few, if any, are free of Pred in twelve months. You could be one of the very lucky ones. General idea is don't taper further if you are still in pain and I certainly wouldn't be looking for a solution that left me in pain. I've had, in real terms, a pretty easy trundle through my PMR so far,compared to many/most on this site and I started in June 2020, at my present rate of taper it will be around another twelve months before 0mg, assuming all goes well. A faster reduction could cause a flare/flares which could easily put me back to square one again. Quality of life trumps all for me and my little white tablets gave me my life back.
I haven't actually taken Hydroxychlorquine, but my "near miss" may be of interest?
When I was first diagnosed with PMR and started on pred in Aug 2020, my GP was great and I was fine for him to keep managing me. He also suggested a referral to a rheumatologist as a "just in case" back up plan. Here in Australia it can often take many months to get to see a specialist, so that was put in motion. Surprise, surprise I got an appointment in Dec 2020.
However I was not impressed with the rheumatologist. He wanted me on hydroxy and to get off pred at 1mg a week, as according to him I "wasn't responding well enough to it", ie I assume not reducing fast enough for him. My symptoms were nicely under control. I was on 13mg of pred at the time, down from 25mg initially.
Based on information from this forum, my own investigations and talking to my GP, I chose to ignore the rheumie's advice and stick with the pred. The less than impressive results of hydroxy for PMR, the raft of potential side effects, some worse than pred it would seem, put me right off. Particularly as I'd responded well to pred in the few months I'd been on it, including starting to taper without problems.
And how he thought I would cope with return of PMR symptoms until the hydroxy kicked in (if in fact it worked, which was dubious) or adrenal insufficiency in the meantime went unanswered, even though I queried it.
I continued to do fine with just my GP managing my PMR – until I got GCA. But that's another story…
Obviously you need to make a choice based on your situation and what you hope will work best for you. Good luck with the decision-making!
Mike I live in Victoria BC I got pmr 14 months ago am now on 7.5 mg of pred tapering at .5 mg a month now. I started at 40 mg for the first 6 months always in pain first 6 months for about 5 hours got to 8 mg in Dec and had a flare took six months to get back down. All is going well now and I am pain free. I keep a pain log and activity log every day. My GP is great he lets me do my thing. We trust each other he asked me recently if I wanted to see a Rhumie I said no not now. I ski every day a week at a time in whistler and golf 3 times a week. I want to get off this drug in the worst way but not to the point where I loose my quality of life. This forum has been fantastic I am on another one in the USA but not as good as this one.
Thanks Skier. Right on topic, and local too! It’s wild that you started at 40mg and had to stay there for so long! I appear to be holding fine at 7mg and have so far not detected any pending flare. It’s excellent that you are mobile enough to ski! I’m about to try a brief dive to see if our SookePoint outfall pipe brackets have weathered the winter storms
I was almost an invalid by the time I was diagnosed stated on 40 to control pain 30 didn’t work but got down to 15 in a couple months I was following accepted procedure but didn’t work for me 1 mg per month is no good so am doing .5 a month
You seem to be doing really well as you are. Seven is not a high dose and you will be tapering to 5 over the next couple/few months anyway so what is the point of upsetting things with new meds?
I live in NS and had my first visit end of May 2022. She was condescending and flippant and if she wasn't the only game in town I'd definitely shop around. Took me 5 months also, but I was being seen by a Neurologist in the meantime, who was an awesome guy. She immediately switched my weaning schedule to hers and right now I'm stuck at 12.0 mg Pred with a bit of a flare at this time. The only other drug she prescribed was something for osteoporosis (which I'm not sure I have with BDS at end of August), which when I started it (1 pill per week) gave me such pain up through my guts, I stopped it. The new GP wanted me to use it and said "she knows what she's doing". Other than that, I've had nothing else prescribed. I'm supposed to go back to her sometime in September and don't even have a way to get hold of her. I may just not go and continue with the GP. Seems like a lot of "hit and miss" meds you're on. I know the wait in Canada is miserable. All the best to you.
Is this a rheumatologist you are referring to? You must not take an osteoporosis drug "just in case". You need to either have already had a definite "fragility" fracture (a spontaneous break or one caused by a very minor incident, not one caused by a significant trauma such as a fall), or a DXA scan which shows you have a real problem. Pred is considered one of the risk factors but there are things we can do to maintain our bone density which negate the need for an osteoporosis drug.
Btw the only rheumatologist I had the misfortune to encounter was the one who presented at an osteoporosis workshop at the Dartmouth General. She was very much fixated on "her" medication (alendronic acid) had nothing to say about other ways to manage potential bone thinning caused by pred, and was poorly informed about the value of Vitamin K2. No doubt other doctors believe she knows what she is doing, but although this may have been true once, it isn't any more. I suppose there are other rheumatologists in the province but if this is the prime example of an osteoporosis specialist I have little hope for the rest of them.
Yes. Emily Shaw. My bones do not break randomly. I had a broken nose from a punch and broken rib for the same reason. Other than that, no broken bones. Now the GP said he wants me to take what she prescribed (Risedronate) because of the way Prednisone "eats at your bones" and "she knows what she's talking about". So I'm stuck between a rock and a hard place. When I see him again I'll tell him it causes too much pain in the guts. My scan is August 31st, but I'd be very surprised if it showed a low bone density at this point.
Hi Missus, I sure hope you only got punched in the nose and the ribs because you are into mixed martial arts! Sounds like you’ve also got a doctor recommending a different course of action. I’ve decided to wait on taking any more of this new prescription and will continue to taper on pred and see what happens. That being said, I’m not willing to go so low that I’m in pain that I otherwise don’t need to endure. Good luck at your end!
I was only on plaquenil for 3 months because my lucer did not like it. However, I was able to get past the hump I was stuck at… 7.5mg while on it. It may not have had anything to do with it. Hard to tell especially sunce it takes 3 months to kick in. That said, it’s not usually the first choice for pmr. It’s more used for RA and my rheumy and I disagreed on my dx. She is no longer treating me btw. I would stay clear of any dr. that is pushing no steroids within a year. It’s not a realistic expectation for the majority of patients.
I'm in NS and have always controlled my dosage, nor have I been referred to a rheumatologist. I've been on pred since 2015 and despite a flirtation with zero in 2020 I've been below 3 most of the time since the end of my first year, usually at about 2-2.5. May never get off, although the past few months my CRP has finally come down to a really low level, so maybe light at the end of the tunnel! But no doctor I've seen has worried about my being on a low dose indefinitely,
Have a look at my story for ideas to help maintain bone density, link below. Considering how very many people on prednisone do NOT take any bone meds, and yet somehow survive without crumbling into pieces, I think the idea the "pred eats at your bones" is misguided. Yes, it is a risk factor, especially if one has had to take GCA level dosage for a time, but it is not inevitable.
Btw, I had done all the reading and was well on my way to the second DXA scan before I was able to attend the bone session at the hospital. There were four presenters and I would say the best was from the physiotherapist as she gave ideas how to protect oneself, particularly the spine, and the introduction, general information one was interesting where they talked about bone structure and so on. The dietitian was very inexperienced and didn't know as much as I did by then, and the rheumatologist - rolls eyes 🙄
I do take/eat a lot of calcium, D3, B12, C but I will have a look at your story for more fun facts. It's my belief that many doctors in general, do not know a lot about PMR/GCA and therefore they tend to agree with each other. I have heard that some actually poo-poo the Support Groups, such as this one and the Mayo Clinic Connect. My thought is they should join the groups, because unless you've experienced PMR or GCA, you cannot form an educated opinion or diagnosis and thereby make themselves aware of just what we go through on the daily. IMHO. ~ Deb
I agree with you about the lack of personal experience of an autoimmune chronic pain condition is a detriment to physicians' understanding. Although the doctor who diagnosed me was very good, a locum in for her for a month one summer has MS and she completely "got" it, and left copious notes for my doctor to read on her return - no more seeing how well my taper was going and suggesting I use up the rest of my tablets, stop and see what happens, rather than renewing my prescription! My current doctor is also good, letting me do my own thing with taper, but almost too agreeable. I'd like him to ask me how I feel. Silly, I know!
I've only seen my GP one time as he's a new one for me. Bloodwork results should be in and probably an appointment next week. It would be for them to ask how we're feeling....depends on the day...good days, better days.
I usually ask him how he is! I've been trying to be a really good patient. I'm so lucky to even have a doctor I don't want to lose him. He's the third I've had since my Boomer age doctor retired just before I developed PMR.
My GP of 29 years retired during my PMR, although he diagnosed it as "things that happen as we get older". So when it escalated in latter half of 2021, hands going numb, etc., pretty much debilitated, he said that "sometimes my hand goes a little numb in the mornings too". Then when I could barely move at all and asked him to do bloodwork for RA, he finally did and my CRP was in the 40's. He got me got me an urgent consultation with a Neurologist here in Halifax and he diagnosed me with PMR, got me on Pred and eventually I got to see the Rheum. Sadly, the GP could have had me on Pred from August until January. He needed to retire at 79. Fast forward to August 2022, doing ok on 12.0 mg and trying to get to 11.5. My neighbour across the hall (about 4 feet) has Covid and not self-isolating, so we in this 4 unit building clean up the door knobs, etc. after they come and go. Very entitled and stupid young people. It's a difficult because I've been feeling crappy the last week. I've taken two Covid rapid tests, both negative. Thank goodness. So I'll remain at 12.0 mg for the next while. I do work part time from home, so feeling crappy is not an option. Enjoy your weekend!
I'm planning to go to a demonstration! Also, on a more cheerful note, a book launch of a children's book by a couple of former co-workers of mine. I will keep my mask on at the events! It's the most I've done on a weekend since I can't remember.... Also, have private messaged you.
My daughter found that it took 4 days of symptoms before she tested positive - and then did an experiment and discovered different packs of NHS issue tests (she's a nurse) gave different results. They are very iffy with Omicron.
There has been some discussion in the US medical media about when doctors should retire. They definitely need some assessment as they age.
Good to know. I will re-test today (Saturday). Yes about doctors retiring. He was nodding off a few times while I was talking with him about my symptoms. My daughter experienced the same thing. Oh well...
Amazing he kept going so long. My doctor retired at 67, had stayed on two years longer than planned as he tried to get a replacement - unsuccessful but we were taken on by a young colleague of his who turned out to be useless so we were glad to see the back of her. Since then I got the diagnosis and really good care from another doctor who took me on even when she wasn't accepting new patients, and now, after she moved, a new doctor from the UK whose practice has filled up already. Apart from that year of not being diagnosed I count myself lucky.
Thank you for this info. We were going to have dinner with my son tomorrow but he is under the weather today. His RAT negative and he was going to test again tomorrow, and also see how he was feeling. I've just suggested he try to book himself in for a PCR, after reading your reply here. I am so worried about hubby's brothers and wives coming (at separate times) to visit from the West coast (California and British Columbia), which involves lengthy plane trips and several airports. Will I be considered very rude if I have my mask on all the time? How will I eat? I don't think passengers on US carriers have to be masked although as of this date there is still a mask mandate for Canadian carriers. Where I live now is absolutely terrible. Although under-5 vaccines have been available for a couple of weeks there's been NO publicity, not roll-out, no clinics set up. And the uptake for 5-11 has been very low, with a corresponding lack of promotion since our CMO appears to have been silenced a few months ago. The kids hospital is apparently packed all the time now, just like the other hospitals. It is horrendous. No fourth boosters available to anyone under 50, and even the 60-year-olds were offered it reluctantly. Certainly no promotion of said vaccine. And all from a change of government.
I wouldn't care if anyone thought me rude!!! I've just been out shopping wearing a mask - place is heaving with blasted tourists from all over! Eating - now there is a problem!!!
Have you asked them to wear masks in the plane/airport? Here the rule for a long time was in a restaurant you could leave off a mask if you were sitting but hat wear one standing. Apparently the virus knows you are sitting ...
The numbers are going down here again. But we do all spend a lot of time outside at this time of year - restaurants with outside seating are very popular and their inside areas are empty. Unless it starts to thunder!
One couple is actually staying with us, the other is staying with one of her kid's family. They are thinking of visiting our daughter in Ontario as well, probably after they've seen us, and I made a point of giving them the name of the B&B where we are going to stay in October so my daughter didn't feel obligated to ask them to stay with them. (They are going to some sort of reunion in Toronto, I think they are nuts to do that, plus combine it with visits to vulnerable family members all over the country, but there you go. Guess it's a once in a lifetime event.) As hubby has already had covid once I'm not keen to see him potentially exposed again. Unfortunately our provincial rates are not showing any signs of going down, despite the government's best efforts to restrict access to testing and generally obfuscating the numbers. I cannot understand their motivation. Three quarters of our deaths from covid have occurred since the omicron outbreak, and this keeps ticking up, week by week. Meanwhile there are NO protections in place (I refuse to use the word restrictions any more as I am restricted in what I can do because of the lack of protections). They are not even separating covid positive patients in hospital from others. And the number of people who catch covid in hospital was already scandalous.
I think I'm going to write to both couples and simply ask them point blank what their plans are to protect themselves while travelling and tell them, in case they don't know, that NS for some time has been the hot spot in Canada, with no sign of it abating.
I'm so sorry to hear how badly you've been hit. My husband was advised by a friend of ours who was covid positive around the same time (my age) that to help her recovery she took a number of vitamin supplements. She emailed them to me and so one of my new tasks lately has been to remind hubby to take his daily dose of magnesium and an occasional dose of zinc (don't want to overdo latter because of potential imbalace with copper). He was already taking D.
This is copied from her e-mail to me, in case it's any use to you. I must admit I didn't follow everything here. Hubby seemed uninterested although it's his health we're talking about:
Morning -1 vitamin C (I decided to get that from natural sources as I had a hard time swallowing the tablet)
- 3 Vitamin D3
Evening - 2 Quercetin
- 1 zinc
- green tea
- 2 vitaminD3
She also said she felt it helped her to recover without any lasting effects. I think she's pretty healthy. Plays tennis in the summer and curls in the winter, for example.
Having gone through three months of hell while my adrenals came back to life I think if someone would have explained a lot of things to me in detail I would not have taken three years to get off of prednisone. Had lab work done a couple of times after being placed on prednisone and the inflammation had subsided in a couple of months. the original symptoms had gone and I should have reduced faster at that point. I had a lot of various aches and pains and lots of stiffness in the morning but at my age that's to be expected. My rheumatologist only just recently explained that prednisone can create things (I had pain and weakness in the wrists, stiffness in different fingers and thumbs, weakness in arm muscles)
I am one week off of prednisone, don't know what happens next but I feel stronger and more energetic now than I have in quite a while.
"the inflammation had subsided in a couple of months. the original symptoms had gone"
At the point the pred dose is relatively high the values SHOULD have fallen and the symptoms resolve - the pred combats the inflammation that causes both effects. However, that does not mean the underlying autoimmune cause of PMR has gone. The idea then is reduce the dose sowly to find the lowest effective dose that works as well as the starting dose did. As long as the autoimmune process is acive you still need pred - you can't tell if you could have got off quicker or if you could have reduced faster without a return of symptoms.
I'm unsure as to what "Prednisone can create things" means? I know the symptoms you describe and more are what I had with PMR at the first, but Prednisone didn't cause them. Prednisone is a whole other ballgame. Predisone did bring me back to where I was able to function, pretty close to "normal". The side effects so far for me are dry eyes, cataracts there, but stable at the moment. Vision issues which have been looked at by an Ophthamologist. I have not experienced Prednisone creating anything pain wise, but lack of it while weaning definitely gives you a jolt back to the reality that we are not cured.
I have been on prednisone since June 2015, with a six week zero pred hiatus in mid 2020. Unsuccessful as PMR came back gradually over that time and it was apparent my previous dose of about 2 or so had been enough to keep the inflammation under control.
It sounds like many others have been on as long or longer, so hopefully you’ll bounce back. It’s nice to hear that you are already feeling stronger.
I agree there may have been an earlier exit, had you known to start tapering well before you did. On the other hand it’s possible you might have flared, and that you’re only now in remission. Since we’ll never know, might as well choose the latter 👌
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I’m in West Van and am back and forth to the island a lot developing my SookePoint Ocean Cottage Resort. I don’t want to lose any time needlessly immobilized with pain. I’m now leaning toward staying on the path you’re on.
Beyond frustrating visit to rheumatologist 
Visit to Rheumatologist 30/12
Confused carer again
First Rheumy visit.
so confusing
