PMR - need to take back control - GP call tomorrow

[Gimme]

I have a follow up call with the nice lady GP tomorrow morning, after I had the neck scan on Wednesday. I've just been reading some of the posts here and it highlighted for me the importance of staying in control of this journey and how careful you need to be in what you say during consultations to prevent HCPs going off on the well worn tangents. Part of the problem for me has been lack of continuity of care, due to availability of docs, so I am now trying to stay with the lady GP as I like and respect her. This post is in part, me getting my thoughts straight, and I need some help from you smart and knowledgeable folks in being absolutely clear in what it is that I need from the GP. Sorry it is so long.

Where I think I am right now: I do have a polymyalgia that is extremely responsive to steroids. The stiffness and fatigue has been pretty debilitating. I believe that I have PMR and that I still have it. If I drop the pred dose, I expect the symptoms to worsen again and I believe the autoimmune situation to still be as active as ever.

Just to recap, I started on pred at 15mg in Feb 2023, which gave miraculous and almost complete relief from pain and stiffness. Due to psych effects, after 3 weeks, I had dropped to 7.5mg, which gave me about 90% relief of initial dose. I've been on 5mg pred for months and that has given me mostly 70-80% relief, though I have had a lot of good and bad days. I am going on holiday next week and have upped to 6mg a few days ago so that I can manage to get through the holiday. This gives me 90-95% of the relief that I had initially. I haven't told the GP that I have upped the dose, after I got a chewing from the grumpy rheumatologist, and I am dipping into my small emergency stash atm.

From the posts I saw today, it seems that my experience with the grumpy rheumatologist is all too familiar. He told me that he thought I had PMR initially, but that he is not sure that I still have it and thinks something else is going on and the pred is masking it. He didn't say what that something else might be or why he thinks that. From memory, I think it might have been after I commented that ESR and CRP have never been raised.

As far as I can see, I think other possible diagnoses have been excluded. I do not have raised ESR or CRP and never have. Lupus and RA anti bodies negative. No vitamin deficiencies found. Thyroid function normal. Neck scan showed no enlargement of thyroid and no abnormalities of salivary glands. Initial physical exam by GP showed no trigger points for fibromyalgia. Further exam by musculoskeletal man showed no neurological involvement, which I take to mean that Fybro also ruled out. Any joint involvement, I would say is only what I would expect for a 65 yr old woman, though I would say that I am probably slightly better off than many women my age as far as OA concerned. The stiffness is confined to the large muscles in the classic pattern for PMR.

I don't believe that I have fibro, because of steroid response and also a lot of my pain and stiffness responded to ibuprofen pre pred. GP ruled out the trigger points. Though yesterday, from self examination, I do have tenderness at the exact spots just below the jawline, the collar bone, hip and buttock for fybro, so arguably, I might have 8/18 trigger spots. However, I do not suffer night time pain or pain on resting. The pain comes when I need my muscles to stretch, so that I can move.

If I have anything else, I have been told that I have osteoarthritis in the vertebrae at the base of my neck by osteopath and physio. My neck and traps have been very stiff since I got flu in Jan 2023 and that is when all the clicking and graunching in my neck started and difficulty in moving my head. I do not get full relief from the neck problems from the pred dose that I am on.

tbh, I do have my concerns about the pred. I don't like the way it makes me feel and I have anxieties about the long term damage it is doing to my body. Whilst it helps with the stiffness and my mobility, I would say that I feel less well in myself since I started pred. Certainly the fatigue is worse. That said, I think I would be pretty debilitated without it and I don't really want to go through all the discomfort of withdrawal, no matter how slowly I taper, if I am going to end up straight back on it again. I think I have been on too low dose at 5mg and that I really need 6mg, atm.

I was thinking that I might do a rehash of this post, with some judicious editing, and forward it to GP via e consult before the consultation tomorrow at 8.30 to make sure that we can make best use of the few minute that we have on the phone. Atm, I am wondering where I go from here, but I think I need to be able to tell her what I need, so that I can have some control over this. Having read back the above, I think I most probably need to stand my ground and say no more tapering for now. Let's just go forward with the idea that I do have PMR, as everything else seems to have been ruled out.

[Gimme]

One additional question. I've often seen the comment that 20% (?) of patients with PMR do not have raised ESR and CRP. Please can you help me locate this information in the literature or guidelines, so that I can quote it, if needed.

[DorsetLady PMRGCAuk volunteer in reply to Gimme]

Not 20% but UP TO 20%- ESR usually -

From one study -

In a sizable proportion of PMR patients – from 7% to 22% – ESR is not raised at the time of diagnosis. However, in these patients, CRP is usually raised

Full article - ncbi.nlm.nih.gov/pmc/articl...

[Gimme in reply to DorsetLady]

Many thanks, DL. hmmm, that's interesting CRP raised. I have neither. Maybe grumpy rheumie is right after all, that I don't have PMR.

[DorsetLady PMRGCAuk volunteer in reply to Gimme]

There may be other studies -but I’m just off to Pilates so don’t have time to look right now.. will see if I can find anything else later.

[Gimme in reply to DorsetLady]

Thanks, no rush. I'll have another rummage myself and see if I can find it.

[DorsetLady PMRGCAuk volunteer in reply to Gimme]

Found another couple -

ard.bmj.com/content/82/Supp...

academic.oup.com/rheumatolo...

[DorsetLady PMRGCAuk volunteer in reply to Gimme]

Not everyone has raised CRP either!

[Seekingasolution in reply to Gimme]

Hi Gimme. I’ve replied more below explaining my thoughts on this and what a funny illness PMR is - but one thing is clear, which is that the pred has relieved your symptoms. I suppose the question should be if not PMR then what the heck else is it ? I have a friend in a similar situation to you re that question and nobody seems to know.

[Gimme in reply to Seekingasolution]

Exactly! What the heck is it? 😳

[Seekingasolution]

Morning Gimme !

I can reply from my experience only but I’m sure the Pro and other more knowledgeable bids will reply soon.

Firstly I think PMR is a funny illness where the symptoms are not 100 % classic for everyone. Your point about ESR and CRP levels not being raised are a case in point. I think it’s one of the reasons why diagnosis is often difficult. In my own case my levels are pretty low ( hence one specialist telling me he thought maybe I had a cold - for 5 years ?) so I think one gets a diagnosis of PMR when the collective symptoms follow a broadly similar pattern and everything else has been ruled out.

I don’t have morning stiffness for example but I have pain if I lie on my side. In other words I think there is still a lot to learn about AI diseases. I have heard the expression before from medical staff, ‘if all else fails, try steroids ‘ and as you say that initial dose seems miraculous!

Did all your symptoms go on that initial dose ? Ie the points in your neck/ salivary glands ?

I have been pretty much left to my own devices on a reducing dose until now but it’s been about 5 years. When I asked for repeat prescriptions at about 5 mgs there was a nod and that was it. I’m now at 1 mg ( hurray ) have been for about 3 months and I suppose I’d better try a half pretty soon. This time the magic box had the instruction ( and wean off !) . However the point is that the reduction has had to be very very slow on the slow almost stop method that the group advocates - should be able to find it on the group info.

I spoke to someone briefly yesterday who told me that she had been switched to weekly methotrexate injections as she couldn’t get her dose down from steroids. ( I don’t want that ) however I don’t know what dose and over how long. You’ve only been on yours for a short period by comparison with just about everyone else on here

Such a shame that paracetamol and ibruprofen don’t do the trick . I found recently due to a nighttime rummage in an old medicine chest that voltarol tablets ( diclofenic ) do seem to work well on whatever I am suffering from maybe a bit of OA thrown in but that needs a prescription too .

In short, and I think you are right to try and be knowledgeable and persuasive on this journey, I hope your nice lady gp agrees that you can stay on the higher dose for your holiday and that a very very slow taper is the way forward .

I should print out the ‘dead slow almost stop ‘ method of tapering designed by a rheumy I think in case she hasn’t heard of it . Good luck !

[Seekingasolution in reply to Seekingasolution]

Typo * knowledgeable bods’!

[Gimme in reply to Seekingasolution]

Many thanks for your reply. oh, good grief! A cold! Why do HCPs come out with this nonsense? That's as bad as the asthma nurse telling me that I didn't have asthma, I was just unfit. It totally undermines any faith that you have in them when they do that.

I too had pretty good results with diclofenac and I took them for about a month, I think, and then they gradually became less effective. No idea what that means, but I eventually gave up on them. It was years ago when all this first started.

15mg of pred and within a few hours, I was totally symptomless!

Yup, I've decided that I am fed up of being passed from pillar to post and decided that I am going to have to take care of myself from now on, or I will never make any progress. I've lost confidence in the rheumatologists that I have seen and decided that the GPs at the surgery seem to understand PMR better. I'm relieved that I've had the investigations, but from now on, think I need to be very clear about what help I think I need and try to head off the usual side tracks that so many of us seem to end up on.

[Seekingasolution in reply to Gimme]

I went to look for the post on dead slow nearly stop tapering ( which I’ll try and attach !) but on the pinned posts I went down a rabbit hole which included people with pain on ‘swollen clavicles ‘ and something called Sapho all of which may be interesting for you to read ! Also big thumbs up for a rheumy called Prof Rod Hughes. So if all else fails and you get desperate, maybe try and see him for a consultation!

Tapering advice

[Gimme in reply to Seekingasolution]

Thankyou.

[DorsetLady PMRGCAuk volunteer in reply to Seekingasolution]

That’s mine -

healthunlocked.com/pmrgcauk...

[seamaid in reply to DorsetLady]

Thanks DL . Thumbs up for this I follow it religiously .

[PMRpro Ambassador]

Manzo has other papers about normal ESR. I have never had markers out of range, except ferritin which is also an acute phase marker and it wasn't because I was anaemic but it isn't often checked. The only time my CRP was out of range was on a day I had a bad atrial fibrillation episode, back to normal the following week. My ESR bumbled along at 16-18 during a severe PMR flare when I could barely move - my personal normal is low single figures. The normal range isn't a range normal for a single person - it is the range of levels that covers 95% of a large population (in the 10s of thousands usually).

In the 5 years pre-pred when I had pretty textbook PMR symptoms with normal range markers, I could score about 10/11 out of 18 on the trigger points, That is because many of the trigger points coincide with attachments of soft tissue to bones which inflame in PMR or trigger points in large muscles - all of which may be involved in myofascial pain syndrome. Finally they have realised the tender points don't mean what they though they did!

creakyjoints.org/about-arth....

The GP and 4 consultants I have seen here have never questioned my PMR diagnosis - one of them is a world expert in the field! Here they accept that there is a far wider variation in presentation and while I am unusual in the duration, there is absolutely no evidence of "something else" - even the OA one UK rheumy snapped was the cause of my knee pain. Here they actually did imaging - not just a rather dilatory physical exam.

You are now down to a corticosteroid level that won't change much even if the pred is less - your body should start to produce cortisol instead. So the longterm adverse effects are far less. The long term effects of uncontrolled inflammation are probably greater on a far wider spectrum - cancers, depression etc and damage to blood vessels and soft tissues. Never mind the pain and disability which I found the worst aspect.

I agree with your analysis - 6mg for a while and sit back and see how it goes. Out of interest - do you feel better on some brands of pred than others? It is actually quite amazing how much effect the fillers in pills can have.

[Gimme in reply to PMRpro]

I just checked back and ESR and CRP were normal even back in Nov 22 before I started pred.

[Gimme]

Thank you for thoughtful reply, Pro. That does add some clarity to some of my question marks.

Reassuring that someone with even your severe PMR had normal ESR and CRP, though I am sorry that you had to be so ill and I get the impression that you have been much more ill than I have been. It just shows that those results (ESR and CRP) shouldn't rule out a PMR diagnosis.

Interesting, observations about the trigger points also. I had assumed that the tender points below jaw and collar bone were attachment points until I saw the body map for fybro yesterday and then it made me doubt myself. Perhaps I was on the right track in the first place after all. I am suspecting the sternokleinomastoid muscle involvement that you have mentioned in the past. Did you find that exercises helped that, or am I misremembering? The tender point behind the hip could be the connection point for the long string down the back and musculoskeletal man did mention that.

Helpful comment re long term effects also. I just wish that my hair would stop falling out and that my chops wouldn't get any fatter. Though for the last 2 or 3 weeks, I seem to have got past that awful fatigue that I had ever since I dropped to 5mg. Funny you mention the brand, I haven't really taken note, except for the one that had wheat in it. I get handed out a different brand every time. I use the tabs in strict order that I get them, and I am not 100% sure that the improvement in fatigue wasn't when I switched to another batch. Though it was also around the same time when I went back on the B Vits.

I think when I talk to GP, I am going to say to her that I still think that original diagnosis was correct and still ongoing (and as said already, what the heck else can it be?) and stress the level of disability without the pred, make the point that I think that the 5mg is sub optimal and that I need to be on 6mg for the time being. If I get time, I can mention that the neck involvement may be a confounding factor and while I am away, I can try and stick to my old physio exercises to see if I can get some improvement there.

One thing that did make it harder for me to manage the HCPs is the complete burn out that I had in May 2021 when I stopped work. It has taken the full 2 years and then a bit (as promised by my therapist friend) to recover and now that I am in a much better place mentally, I feel a lot more able to deal with them. I worked with people like this every day and back then, I was fully capable of giving them a metaphorical cuff round the ear, but then I got ill and needed to put all my energy into survival. Underlines the feeling that the last thing you need to be is ill when needing to access the services of the NHS!

[PMRpro Ambassador in reply to Gimme]

I don't think I was particularly BAD - just the inflammation built up and up. We do see - we think at least - that patients who wait a long time for diagnosis and/or are messed about with tapering so they flare have a longer and harder journey. Can't work out why though since pred isn't supposed to have any effect on the disease process.

Burnout is difficult - been there, done that. And yes - dealing with HCPs when you feel rubbish isn't easy!

SnazzyD is the SCM guru, think she found the stretches very useful.

Your hair will recover I'm sure. I could do with a bit of mine falling out at present, it is thick and wavy and a bit unruly!!!! Have to summon up the enthusiasm to ask the local hairdresser to tame it ...

[SnazzyD in reply to Gimme]

You can have both Fibro and PMR. Perhaps PMR stirs up the pain perception process and makes one more susceptible to Fibro. Who knows?

Yes, to SCM exercises. I have to do them daily especially especially when I’m stressed. This video shows the physiology clearly and the article talks more about the many symptoms and action. There is a lot on YouTube too.

kenhub.com/en/library/anato...

healthline.com/health/stern...

[Gimme in reply to SnazzyD]

Thank you, Snazzy. The neck thing drives me insane, at times. I'll give it a whirl to see if it helps. Nothing to lose.

[SnazzyD in reply to Gimme]

The worst actions for it are looking at phones and improperly positioned screens, looking down at things you are doing with your hands, sloppy posture from the upper back and chest upwards, front sleeping.

[Gimme in reply to SnazzyD]

oh yes, I got that. I'm a lifelong asthmatic and developed that classic forward hunch when I was a child. I'm sure that has a lot to answer for. I'm very conscious of my posture, but it is very easy to slide back into old habits. And its not an easy one to correct without persisting with the exercises. I think I have been spending far too much time on the computer. I won't have access to a computer for 3 weeks, so it will be interesting to see if I improve over that period. I don't have "that kind of phone", so I can't blame that.