Help and advice please!: I have had PMR for 6 and a... - PMRGCAuk

PMRGCAuk

13,009 members23,608 posts

Help and advice please!

k-mac
k-mac

I have had PMR for 6 and a half years, with GCA after two years. Nearly 3 years ago I managed to reduce Pred. to 3.5mgs with a small amount of returning pain. I then had a rheumatologist appointment and was told that according to blood test results, PMR was gone and the pain and fatigue I was experiencing was due to 'chronic fatigue, chronic pain, ME or fibromyalgia' and that I should stop taking Pred within a fortnight, indeed immediately as at that dose, it would be contributing nothing. I had not discovered this site at that time and my own doctor seemed baffled as she took the view that the condition was limited to 2 years. The resulting flare was pretty immediate and incredibly painful, treated with amitriptyline and only eventually was a return to Pred. considered. I have not since been able to reduce to 3.5 mg and during the following years, pain has spread to all the smaller joints pretty well as well as the shoulder/pelvic girdles.March 2020 , a different doctor referred me back to the same rheumatologist as she wondered if the red, swollen finger joints were a symptom of rheumatoid arthritis. He considered it unlikely. I also had a dexa scan in September which the rheumatologist considered to be fine, whereas when I rang my surgery to discuss results, was told the spinal reading was 'borderline' . Both Doc. and rheumatologist were pretty emphatic about reducing Pred. to below 4 mg and prescribed Zapain, 30 mg codeine/500 mg paracetamol up to 8 a day. I was taking 5.5 mg Pred. at the time. I have over the past 4 months reduced to 4mgs. as requested and now the pain, stiffness and fatigue are becoming overwhelming. Onset was 61 and I am 68 now, self employed but struggling to cope with walking, driving and all the regular daily activities. I had a blood test last week and am expecting a phone consultation tomorrow. I imagine a synacthen test I will be out of the question now and has never been offered and blood tests show low cortisol. I wondered if anyone had any advice or suggestions as I am dreading further Pred. reduction if bloods are within range - and can't see a consultation with rheumatologist will be any more helpful than before. A long post and a long shot but if anyone has had a similar PMR journey and any thoughts, I'd love to hear them. Thank you. k

35 Replies

Sorry that top line has jumped out from lower down and relates to dexa scan sentence...It should start with 'I have had PMR for 6 and a half years...' grrr sorry I can't see how to edit it

PMRpro
PMRproAmbassador in reply to k-mac

Happens to me all the time - I thought it was my computer. It seems not. To edit click on More and it should offer you the options of Edit or Delete

k-mac
k-mac in reply to PMRpro

Done! Thanks 😀

PMRpro
PMRproAmbassador

My suggestion? Find a doctor who knows what they are talking about because so far they haven't. Telling a patient to stop pred overnight is medical negligence though that IS long in the past.

I don't know what they think they are treating you for but it is being done badly. PMR rarely affects joints although I did have hand pain, but not every joint and they don't become red or swollen - are they also hot? Your GP sounds to have the right idea. Your rheumies didn't - anyone on 3mg of pred with a normal CRP could well still have actove PMR. The only test is to be off pred altogether with no symptoms - because even 1mg can be plenty to manage it.

What was your spinal t-score? It probably isn't so bad you need to stop the pred if that is what is keeping you going at all - but they should have offered bone meds if they are that concerned (bisphosphonates are often taken alongside pred management).

Where are you? Your profile doesn't tell us anything and knowing the country at least helps us.

k-mac
k-mac in reply to PMRpro

Sorry yes I'm in the SW of UK. (I wrote in a bit of a state and didn't think of profile etc) The rheumatologist I have occasional contact with has a special interest in PMR I think it says on his profile! When last we had a phone conversation, he made a passing reference to other possibilities but not during pandemic. I feel, maybe entirely wrongly but emotionally, that this huge flare has been an ongoing reaction to sudden termination of Pred as even when back on 15mg in April 2018 although a great relief, it wasn't as good as previously. So this most recent taper has been since then, arriving now at 4mg which isn't sustainable. I guess it's feeling like I am getting nowhere, far from having burnt out , PMR's more up and at it than ever and yes, I have now got a weekly Alendronic acid tablet and wondering whether I should tell doc. I need to return to a higher dose of Pred - around 10mg for a while, just to get a break from the pain and exhaustion but maybe I have taken it too long for this. No mention was made of a score after the dexa scan - just borderline. The joints are red, becoming misshapen and only slightly warmer. I know they worry about cumulative doses from what I have read here and have taken 60 mgs briefly for GCA. Thank you k😀

jinasc
jinasc in reply to k-mac

ncbi.nlm.nih.gov/pubmed/287....

You might like to read this article by Eric Matteson on his research.

k-mac
k-mac in reply to jinasc

thank you 😀

PMRpro
PMRproAmbassador in reply to k-mac

Pffft - I've been on pred for PMR for over 11 years, much of it at above 10mg - if you need it you need it. The alternative is that you have NO life (I had 5 years with no pred before that and it was awful - if I were sent back to that they'd have another patient in mental health. Or dead).

You have been totally mismanaged - but other than seeing a good rheumy privately (recommended, not just a random local private one) I don't know what to suggest.

k-mac
k-mac in reply to PMRpro

In amongst promotional content in the Guardian recently there was a piece by Prof. Rod Hughes who seems to specialise in rheumatological conditions with an auto immune basis. I saved it.I wonder if you have heard of him or if anyone has a recommendation - it would be worth the cost to get a life back. 5 years with no Pred. is an awful thought and as you say, think mental health might become an issue. I certainly don't feel like 'me'!

PMRpro
PMRproAmbassador in reply to k-mac

Rod Hughes is the first person I recommend to anyone - especially in the south. There are a lot of people on here who have gone to him in desperation and sing his praises. He listens and he is good at PMR. He worked most of the way through the first lockdown - and still sees patients f2f. He wrote a piece in the DM about being prevented from seeing as many patients as he'd like because of the NHS guidelines.

drrahughesrheumatologyltd.com/

k-mac
k-mac in reply to PMRpro

Serendipitous indeed then! I was kneeling down sorting the stove, not looking forward to standing and started to read the bits of newspaper destined for the fire and there he was. I'll look at his website again. I haven't contacted a forum before but by half past midnight last night, reading posts and feeling pretty darned demoralised, I took the plunge and now have all this great advice and support. Still wondering whether I should request synacthen whilst Pred. so low or is this pointless? sorry all these questions🙄but I was told there's no point.

PMRpro
PMRproAmbassador in reply to k-mac

Why is there no point? Very silly ...But if you want to go back up there probably isn't ...

k-mac
k-mac in reply to PMRpro

A little progress to report - phoned by a different doc. who confirmed CrP/ viscosity higher than 2 years ago and white blood cell count, who agreed to request synacthen test and email rheumatology and suggests a couple more mgs in the meantime... with a view to a larger increase. If I meet with more intransigeance, I will contact Prof. Rod. It's been great hearing such sound advice here...made me much more confident ! thank you 😀

PMRpro
PMRproAmbassador in reply to k-mac

Oooohhhh - HE seems with it enough!! We'll give him a chance :)

I have a much higher cumulative dose than you and it is not worth worrying about when you are suffering so much! There is no real point taking pred. If it isn’t enough to get you out of pain! At what dose have you been comfortable since the flare? Really you need to get back to this dose and work from there. It does sound like you had a terrible flare and have never really got the inflammation from that under control. It is also possible for PMR to go up and down in activity all on its own. You clearly still have an active disease.

Your doctors certainly don’t seem to know what they are talking about which doesn’t help at all!

Many of us on this forum have had to learn all about our condition as so many doctors know so little. Stick with us here and you will learn so much that is invaluable for your health.

Thank you -this is so true. Every waking moment seems to be accompanied by when can I lie down, have a hot water bottle, take codeine rather than welcoming what life presents. When belatedly diagnosed, I was told 18 months and all would return to normal. Nothing about lifestyle changes so carried on with hecticness as ever and GCA developed. One of my girls bought me Kate Gilbert's book, I found this site and began to realise this PMR is something more than me grizzling about aches and pains! So having read the thoughtful replies and read articles, I am going to strongly resist being told to reduce Pred. and try not to tell myself I have failed.🙄

PMRpro
PMRproAmbassador in reply to k-mac

Oh no - YOU haven't failed, you have been failed. Left, right and centre.

As so many rheumatologists don't understand PMR and therefore do more harm than good with their interfering and bonkers ideas, I think your only hope is to go see one who specialises in PMR and knows what they are doing. One on the NHS is Dr Mackie in Leeds but there is a massive long waiting list to see her and you might not be able to be referred outside of area. Another is Dr Rod Hughes who I believe does private. There is also Dr Dasgupta of course. I think others have been mentioned on here so worth a search of old posts.

k-mac
k-mac in reply to tangocharlie

Ha ha..I cut an article out of a newspaper this week about Rod Hughes I felt so desperate and I will search old posts as you suggest - thank you!😀

The more I read and the longer this b* virus goes around the more I start scheming. A plan for training of rheumies - give them pmr big style for a month, with all the pain and stiffness but perfectly 'normal' bloods. Then they should self diagnose and self medicate. For those that designate themselves as having a 'special interest in pmr' they should endure pmr for at least 6 months on a taper to 0 in the first 3 mths. They can only qualify after being thoroughly examined by people that actually DO know - members of this forum.

Not a lot of help for your immediate predicament admittedly, but clearly your medics are short of a lot of knowledge and you need some quality of life. I would be rehearsing a variety of ways of saying how the person and symptoms should be treated . An increase in pred would be part of this, and diagnostic from their point of view. I do hope you get some relief soon.

k-mac
k-mac in reply to herdysheep

Thank you and yes an attack of PMR would do a lot to rein in their 'How are our aches and pains? comments. I imagine the perceived - and not very accurate demographic (fairly elderly, female and economically uninteresting) accounts for the lack of interest/ knowledge or am I being overly cynical ...and affected by PMR induced grumpiness 🤣

herdysheep
herdysheep in reply to k-mac

😂

PMRpro
PMRproAmbassador in reply to k-mac

I have said that for the last 10 years. I thought it would change with the retirement age rising and the age of patients apparently falling - but many resist the idea of PMR in anyone under 65 despite the international guidelines. Now with the effects of Covid it will all go to pot again - Long Covid will occupy them for years.

k-mac
k-mac in reply to PMRpro

mmmm...interesting as a standard response to PMR diagnosis seemed to be to relate it to a virus. (tho I attribute my onset to prolonged stress) Some LC symptoms seem oddly similar - wonder if they'll give them all the Pred!

PMRpro
PMRproAmbassador in reply to k-mac

LC is just a massive outbreak (for want of a better word) of what has been called ME or CFS (chronic fatigue syndrome) since the 80s. No-one knew what caused it - so the usual "it's a virus" was used. It probably IS "a virus" but it causes an autoimmune response in some patients, just like a strep throat causes a rash and is called scarlet fever in some patients...

k-mac
k-mac in reply to PMRpro

Hence the similarity of symptoms and my Rheumatologist telling me as though I had won an award, that I had CFS or ME!Is there an Ologist who deals with the myriad auto immune responses because the mechanical processes understood by the Rh. seem very unlike the subtle, shifting and ostensibly random symptoms of inflammation from AI rather than from physical damage.

PMRpro
PMRproAmbassador in reply to k-mac

No, the average rheumatologist thinks they know about vasculitis and autoimmune disease because almost all inflammatory arthritis is a/i and they get to deal with them. Some have centres of excellence but getting to go to one is next to impossible - partly because of the arrogance of the local medic.I have hopes there may be a lot more interest in a/i research worldwide - but I'm not holding my breath.

k-mac
k-mac in reply to PMRpro

Maybe LC research and an updated acknowledgement of earlier onset PMR might create a future specialism. 🙏

Louisa1840
Louisa1840 in reply to k-mac

Oh I think you are BANG ON!!!!

With regard to bone health, we are given zilch. I think we should be taught how to care for our skeletons much as we are taught about the dangers of smoking, the importance of exercise, the signs of stroke or heart attack, etc. Failing that maybe you'll find my story helpful - you may pick up some ideas from it:

healthunlocked.com/pmrgcauk...

k-mac
k-mac in reply to HeronNS

Thank you - that's a fascinating read and one I'll take notes from tomorrow. The supplement advice great as I get a bit flummoxed about what to take and when. Coincidentally, I asked a friend if I could borrow their Nordic Walking poles earlier today to try as mobility has become strangely limited - it certainly has a psychological component to do with bones and a small bone in the foot broken during a period of hypercalcaemia(hyperparathyroidism) has decided to join in the flare up fun. I hadn't heard of Parkour which reminds me of part of the selection process for the Paras which my son undertook🤣I've learned such a lot today. Thanks🌈

HeronNS
HeronNS in reply to k-mac

Story a bit dated now. I wonder if I could even manage to start a program like that if I were newly diagnosed today? But I do carry on with most of the protocol. Need a third DXA scan someday but I think I may wait for the pandemic to subside befoe asking!

I cannot back up my comments with science but my personal experience does echo what you have said.My opinion now is that every failed reduction leads to an increase in dose which is higher than any previous one in order to achieve the same effect. I have also found that the PMR symptoms morph into different aches and pains. It's almost like drug resistance is taking place but I can't think of a pharmacological basis for this. I have also found that the failed reductions impact in the Adrenal arena too. This illness is so fickle and even very low doses of Pred will keep it suppressed, it is so hard to distinguish between a return of symptoms and the effects of lack of cortisol.

I know of a transplant patient who was on Pred for 3 years who got off pred with minimal problems. This makes me think that perhaps our PMR really is more active than we realise, and our normal blood tests are because of our steroid treatment, just as PMRPro says. My mantra now is slow slow slow and I wish I'd gone slower originally.

Me PMR unconfirmed GCA Nov2017 now 4,5mg and stuck.

DorsetLady
DorsetLadyPMRGCAuk volunteer in reply to PMRnewbie2017

Pred does keep the markers artificially low in some patients- which is why we always witter on about symptoms being the key element when judging activity of illness. ... ...and yes I think the more often you flare and need to take extra Pred each subsequent flare seems more difficult to control.

As I’ve said many times with my GCA the reducing from 10mg to zero took almost the same time as 80mg to 10mg took. Not because I flared (I never did) but because I took it really slowly.

On what I considered low doses I had no side effects from Pred. neither was I pressurised by medics to reduce quickly - so I took it slowly!

It might not be correct in all circumstances- for a variety of reasons, but for me it worked.

k-mac
k-mac in reply to DorsetLady

Thank you. I think the medics I have spoken to are unaware of this possibility hence I was relieved when my doc. confirmed yesterday that markers were elevated...I had started the phone consultation yesterday slightly bullishly quoting what I have read here about symptoms not markers in case there was no change in the face of rising pain. Here also, reducing from GCA level to 15 was quicker than 10 to 4 and much more painful. I think I finally have some support for going back up!

You may also like...