PMR diagnosed July 2018 after 2 years of symptoms. Inflammatory markers normal. Immediate and dramatic response to 4 days @15mg pred. Pain free, able to move freely, felt great. Started pred programme, 15mg for 2 weeks, 12.5 for 2 weeks, 10 for 2 weeks and was due to reduce to 7.5 and stay on that for a month before fpreducing further.
Symptoms started to return at start of 10mg. Pain but also overwhelming fatigue. After 10 days at 10, increased to 12.5mg last Tuesday. Planned to keep at that for a month and taper more slowly. But...symptoms are getting worse. Increasing flare pain and fatigue level is making me feel nauseous. Initially thought body needed time to adjust to impaired adrenal function, but I'm no medic.
Spoke to rheumy specialist nurse today; there's a direct helpline to the rheumy unit to answer concerns. I explained what's happening. I was hoping/ expecting for approval to increase to 15mg. Pah! She was adamant about not increasing further. Agreed I should stay at 12.5mg then said more bloods might be required to check inflammatory markers. I said I didn't think that would help; over >2 yrs, markers normal. She said rheumatologist says I'm atypical and she's going to speak to him but thinks I may be 'one of a few' who need extra support. I asked if there was an alternative diagnosis (not PMR) and she said no.
You'll guess what's coming; I asked what she meant by extra support and she said a minority of patients with PMR need steroid and additional treatment. I said are you talking about metox something and she said yes. She's going to speak to rheumy consultant and phone back possibly tomorrow.
So, after a positive start, I've not only ground to a halt within a month, but am now going backwards. I'm going to have to look up the MTX stuff, but I know I'm not going to like anything I read. Today, I'm in pain, wiped out with fatigue after preparing a few veg and I've done nothing else all day. PMR really is the gift that keeps on giving. I hate it.
Wow, I cannot believe how quick things have moved for you since starting pred, it must be a record!......your body hasn't had any time to adjust to even 15 mg.......we can't drop pre d that quick.......well most people can't, and to suggest MTX this early.......if you can't go back to 15mg, please try and see if things settle at 12.5mg.......no good dropping anymore yet...
Hopefully other advice will come along soon......good luck
Thanks Longtimer. The taper prog is the one 'approved' by NICE. Doesn't mean it's right for everyone and based on rheumatology papers, doesn't work for some 60%. I planned to follow a longer taper and copied a couple of suitable plans from advice here. But meantime, symptoms are getting worse; it's deffo a flare. Common sense tells me the body is struggling with the PMR and unwelcome toxic intervention; steroid, AdCal. It can't expect adrenal function to slow/close and be hunky dory in no time.
But the docs will doubtless suggest another med if nurse response is anything to go by. Thank you.
Rubbish - you need enough pred. Period. And you were reduced too fast - after 2 years undiagnosed there is a lot of accumulated inflammation - even if you don't have raised markers. TBH - I think this is one version of PMR. And once they mess about with reducing and yoyo it causes problems - been there, done that.
The reducton is NOT "approved" by NICE - no-one has ever done a study to find an ideal way to reduce. There's a good reason for that - no two people are the same, there are too many variables. They make suggestions - with absolutely no evidence to back them up. And NICE is meant to be based on EVIDENCE. Every reduction broached in the literature has a codicil: they must be adjusted for the individual patient.
A basic reduction of 15mg for a month, 12.5mg for a month - provided it works would have been a better start, as described here:
which found that flares could be reduced to 1 in 5 from 3 in 5 - which speaks for itself. And THEY kept patients at 10mg for a year. 7.5mg at this stage is ridiculous.
And impared adrenal function has NOTHING to do with it at this stage. That comes far far later once you do get to 7.5mg. At 10mg and above the adrenals are taking it easy as they don't need to do anything.
mtx should be offered when the patient has difficulty - and only when the patient agrees. I tried it for 4 weeks (after many years of pred) and said no. It wasn't worth the agony for me.
I have a half functioning brain this morning. Don't know how long it'll last!
Approved was the wrong word and my fault. What I was trying to say is that these bloo*y doctors now seem very unwilling to waver from anything with NICE guidelines. And for me, they're just that, guidelines. As long as a patient presents with tick box symptoms and dr can give a clear diagnosis, they're happy. The GP is pleasant, but bearing in mind it's taken 2 years to get to this point and I saw her twice in the final six month wait for referral, almost begging for something to ease the pain and she offered nothing, just said we need to wait til you see the consultant, I'm not confident about her advice. And she doesn't like being challenged. Even when I put on my personable head and use non confrontational negotiating language! Maybe I'll stick to my obnoxious, I know what I want and I'll get there head next time!
The second paper is very useful, thank you. I've only skim read the content, other than rec7. Sadly, a lot of treatment isn't evidence based but big pharma lead.
I'm going to write down all my concerns, references and be clear that I want another go at pred, for longer in the first instance. I'm going to check Mtx now, but I'm fairly certain I won't like what I find. As you say, this is very early stage treatment with pred for me and the taper was too fast, for me. I can't thank you enough for the time you give and the references you offer to help. I'll raise a glass of Cabernet to you this evening. Thank you.🍷
They can be so intransigent - and quote guidelines as it suits them, ignoring them willfully if it suits them. Having a dexascan is in the BSR guidelines - can we get them to order one half the time?
And don't get me started on NICE - I can't remember the percentage of members of it with close relationships to the pharmaceutical world. Which says it all really.
I spent a year yo-yoing- going down and back up on prednisone trying to taper in 2.5 mg doses from 20mg down--the flares were very bad and I ended up having to back up to a high dose. Have found that I need to taper very slowly and am now taking it 1mg at a time. I alternate for a week between the higher and lower dose, then go to the lower dose for a month, then repeat. So far this approach has worked. I also have no inflammatory markers--bloods always normal, which is true for a percentage of PMR sufferers. Talk to your rheumy about giving the slow taper a try!
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Thanks offtothebeach. Do you also take Mtx?
Yes- I take 6 2.5mg tabs/wk of mtx.I also take folic acid 2 tabs/day. I take the mtx at night as I tolerate it better and I am not taking it at the same time as the mtx. From what I read on this forum, docs want to get everyone off prednisone ASAP, but forget that PMR is a 2-5 yr illness and that undertreated PMR also has its consequences. I think that my PMR actually progressed after I was diagnosed and that the original dose of 10mg was too low. I have learned that I need to stay at the higher dose or up the dose until my symptoms have gone away or are minimal. I ended up back at 20mg after 6 months of going up and down on the prednisone and insisted on a slow, 1 mg taper. I am down to 18 mg. My first few days at the lower dose are a little uncomfortable, but then I feel better. Don’t be afraid to insist on both the dose you need to be symptom free and a slow, slow taper. PMRpro posted an article (I think it was PMRpro) about a study that compared those on long term prednisone with a control group—over several years. The prednisone group did not have an appreciably higher incidence of osteoporosis, or other issues that are related to taking prednisone. Hope you feel better soon.
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Thanks offtothebeach beach. That's interesting; it seems low starting dose, but it's through all the shared experiences here that I'm learning the vagaries of the disease and treatment. It's a minefield but there's much in common!
I have the study you mention; its quite compelling. I think it's around 60% who had problems with the faster taper. I said to the rheumy nurse I spoke to on Monday that I thought the taper was too fast and that I understood quite a few have difficulty with this particular plan and was met with silence.
Rheumy consultant is on holiday, so I have breathing space to gather my wits. I'm finding it very difficult some days to be rational and articulate; the disease or meds or both seem to eat into mental attitude as well. I've made many changes, mostly small and certainly embraced the long haul approach, which I really hadn't expected. And that's thanks to everyone here.
As those have already commented, your taper was much to quick! No wonder you are struggling now. Difficult to deal with a rheumy with the personality you've described, but I will encourage you to be strong/firm, and if they are still unwilling to work with you, instead of against you, time to ask for a second opinion (as long as you have someone who can oversee your taper for a time until you get another appointment).
Of note, I had untreated PMR for five months, diagnosed May 1/18 and started 20mg on that day. Heavenly relief. Met with rheumy and was advised to taper from 20 down to 15, then 12. 5 and 10, one month at each. Well 20 down to 15 no prob, but the next drop to 12.5 I flared. I have one marker that does indicate inflammation, and after blood work was done advised to go up to 15 where I stayed for another 5 weeks. Saw rheumy for 2nd appointment and she told me to taper the same way again??? She said I was atypical and may have seronegative inflammatory arthritis and I may need to go on Methotrexate (this after she suggested the taper that caused the flare, and I was negative on both RA tests). Suggested at the second appointment after me only being on pred for 3 months. Even after I told her I flared. She said it would be "silly" to taper less amount and slower. So I went to my gp, he gave me a prescription for 1mg pred to help me taper as I feel best, and advised me not to even tell her. And that is exactly what I shall do.
If there's a will, there's a way. My symptoms trump blood markers, and I am an expert in my own body. When I see her in Sept., it may be my last appointment if I'm faced with the same reception from her.
Keep us updated on your progress. Wishing you a much smoother and slower taper moving forward.
Thanks PMRCanada. And you've introduced me to a new illness! I've never heard of aero negative arthritis, but that's interesting as my bloods seem similar to yours and negative for RA. Disease experience is similar. I was absolutely fine at 15 and 12.5 is a problem as soon as I do anything. As you say, it's my body and I know how it feels. The PMR pain is very different to what I call OA joint pain and aggravated nerve pain. The latter can be horrendous, but they're different, not bi lateral and not radiating and burning like PMR. As I believe I've had PMR for around 2 years pre diagnosis in July 2018, I don't expect it to disappear overnight and it was well embedded everywhere! I am out of that overwhelming pain though, so that's a huge plus.
Hope you get on OK with next appointment and thanks for your encouragement.
And off topic, poutine...that brought back memories of Québec. I tried it when I visited some years ago. It's yumzers. That and the onion soup served to eat outside on a little bistro table in the narrow streets of old town. What a place. In my top 3 cities.
Update. Not sure whether it's good news or not.
Rheumy nurse phoned today to say I need to see consultant when he returns from holiday and she's made an urgent appointment for 11/9/18.
I asked why I and she said the Drs she's spoken to are unwilling to advise without consultation. She said its 'very rare' to have no inflammatory markers. It may not be PMR but I need to see consultant again as soon as he returns from vacation.
So what's going on? Treat as PMR diagnosis a few weeks ago is now being questioned; why? If it's not PMR, what else might it be? I know I'll have to wait till after 11/9, but I'm not encouraged.
My current plan is to explain, listen and suggest a slower taper programme as first choice. Then see what happens. At 12.5 (as opposed to 7.5 I should be on now) it's barely acceptable. Very little pain, as long as I don't do anything other than get up. Pain returns quickly on effort...vacuuming, standing, food prep.
I guess what concerns me most is the possibility of a different diagnosis.
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