The Lighter Side of PMR - 'MB, What Do You Think About This One?' Reply to JoanJo - and on the Paradoxical Journey of Steroid tapering ;-)

[markbenjamin57]

Dear JoanJo / all following this thread

First, sincere thanks for your post - and comparing notes. It's what this forum is all about!

I'm sorry if this reply is rather long, but I hope it helps. I've repeated it (here) as a New Post to all here if you think it's relevant. You tell me..?!

Well, first: I think the moral of the story / verdict for many of Us Lot is that, yes, PMR (if not GCA) CAN burn out (or at least threaten to..) as we get to lower doses of the Preds and / or The Adrenal 'Guyz' (gender neutral) start to get their act together again after a long lay-off. The difference is Night and Day symptoms-wise.. Yay..!

That said, and as I'm still learning after 2-ish years of PMR - and despite a recent, miraculous 'break' in symptoms (!), we're still not out of the woods even when feeling better / more like our normal selves.

After my account of 'Upping the Preds to 7.5mgpd and feeling worse / then thinking S*d it, I'll try dropping to 5mgpd out of sheer defiance / then getting a sudden, paradoxical (?) break from all symptoms etc' episode, it's back to business as usual with some of the familiar pain, stiffness and occasional DF (Deathly Fatigue) whilst holding steady - now at 4mgpd and with gritted teeth. Hey Ho, this is PMR after all! ;-/

That said:

Both my Rheumy and my GP, independently of one another, seem hell-bent on me reducing the Preds by 1mgpd every 4 weeks to Club Zero: which, of course, defies of all of the best wisdom here (i.e. 'maximum recommended reduction of 10% of the previous periodic daily dose at any time, etc). A familiar story for others here..?! As the (now) famous DJT***P would say: 'What the H*ll's going on here?!'

And, interestingly (the plot thickens?):

My (ok, respected but obviously very busy) Rheumy expressed surprise that I wasn't off-of the preds when he signed me-off about 6 months ago - barely 2 years from first dx. He went on to say, in writing, that (q.) 'for the vast majority of patients, PMR goes into remission in 2-3 years' and that I shouldn't stay at 5mgpd any longer, whatever. Mmm.... really... and why, exactly?

My (new) GP was recently also quite emphatic that (sic.): 'She gets ALL of her patients off-of the Preds within 2 years'. Wow! Again, Mmmm.. I chose not to get into an argument with her about my very different understanding of these things. I'll keep my powder dry for now..

Neither my Rheumy nor my GP seemed interested in discussing or explaining the possible causes of the notorious DF (Deathly Fatigue - mentally and physically) that often goes with both PMR and / or steroid tapering - and the reasons for it - nor the concept of DSNS (or its equivalents) especially when tapering at those critically important doses (i.e. < approx. 7.5mgpd) of the Preds where 'slower = safer / better'. Mmm.. x 3 now..

Reading between the lines (?):

I can't help wondering if (at least) some medics are maybe NOT so ignorant / un-informed about PMR and steroid tapering etc. as is often suggested here. But some are maybe more aware of the consequences of 'spilling the beans' (i.e. detailed and full disclosure) about what they really know about the process from their medical training, and choose not to confuse or scare their patients un-necessarily - and / or, maybe to cover their backs in terms of normal medical protocols. The thorny topic of whether to To / Not to advocate the controversial bisphosphonates (Alendronic Acid) for possible osteoporosis comes to mind as an example...

Surely, any qualified Medic will know Chapter and Verse about the often silent, co-lateral damage caused by the ubiquitous Preds whilst prescribing them to manage the worst of PMR symptoms for their patients, in most contexts? (I appreciate that GCA is a different matter clinically, for obvious reasons).

So, maybe their strategy with some /many patients is: 'encourage the typical PMR patient to get off-of the Preds asap at the same time as recommending precautionary / compensatory drugs (e.g AA) - and kick-the-can-down-the-road in terms of any consequences later'? Maybe a professional back-covering exercise? - you tell me...!

From what I've learned as an amateur on this Journey, PMR management via corticosteroids (or their equivalents) is a very complex multi-dimensional Physiological and Psychological trade-off, as many of us already know from bitter, personal experience. A case of Snakes and Ladders, or what?! :-? For many of us, we perhaps just want to get / feel 'better' without necessarily understanding the complexities of how or why..

But, maybe, with PMR at least, there is an equivalent paradox for some Health Professionals too: i.e. 'managing contingencies' around how much (or little?) to reveal to their patients about the potentially nasty physical and psychological side-effects of the cheap-to-adminster, generally effective and easily available Preds - at the same time as allocating their time and clinical expertise to more 'serious' (e.g. Life threatening) health conditions - and with limited resources all round (in the UK, at least)?

My conclusion, for better or worse?:

I'm certainly not excusing or advocating bad manners, ignorance and poor Patient Care by ANY health professional. But I do wonder if many Medics nowadays are so stretched in terms of their time and 'Performance Managed' resources that many struggle to prioritise which of their patients get the most urgent, focused attention and referrals to specialists - and which, too, places them in a difficult position all-round.

As PMR sufferers, I'm certain that we're not at the bottom of the pile on the daily Priority List of many medics. At the same time, we're probably not at the top, either. Food for thought - and all the more reason to keep close to this forum as a reality-check and source of trusted advice and research?

As always, I bow to the greater wisdom and experience of the various experts and Aunties here - I'm sure this one will run and run...!

In the meantime: try to stay positive, keep smiling, and remember that 'This, too, will Pass' - even if we don't quite understand why, when, or how

That's it. Brain over-heated after such long and intellectual ramblings. Wine open (dry red - as usual). Dinner in Wardrobe - again! That 'Witty' (allegedly) book making progress for publication pre-Christmas, if I have the energy.

Ohh, another day with PolyMyGodlyRoomInTheAtticUghh! ;-D

MB

[Mary63]

Wonderful as always Uncle Mark! How do I send you a Private Message? As I have some info which may be helpful about your future book,cos I have been down the book writing, publishing, marketing and selling the b thing myself. I really don't wish to bore all this forum with the details!

[markbenjamin57 in reply to Mary63]

Thanks Mary - I do my best here!

Yep, please PM me. I think you need to go to my 'profile' page and / or find my screen name 'markbenjamin57', and follow the menus for sending PMs.

It'll be good to have some expert advice on the process - all new to me!

MB

[Mary63 in reply to markbenjamin57]

Will do!

[markbenjamin57 in reply to Mary63]

Thanks Mary - catch up later

[CT-5012]

Many thanks for your latest post. Was at the docs this afternoon for a pred prescription left my request with the receptionist, got a phone call from a doc asking why I needed 5's and 1mg tabs explained that I was tapering after a flare very slowly, but why do you need 1mg tabs? Felt I had to explain that I was unable to cut one 5mg into five equal parts. Oh he said and ended the call. It's good to talk. 😟

[markbenjamin57 in reply to CT-5012]

All part of the service CT,

Yes, this seems to be a common response with some (many?) GPs. It's a bit late tonight, but I'll share more about my experiences of / thoughts about this kind of thing in a response or a new Post tomorrow..

As you say, Good to Talk - and to compare experiences here.

MB

[altywhite in reply to CT-5012]

Hi CT, once again I am thankful for a good GP...no matter when I request my pred prescription, be it for 5mg or 1mg tabs, it is always issued without a query. And he never batted an eye when I told him I was down to 8.5mg. (Unlike the rheumatologist a few months ago who said 9.5mg was "an odd dose...stay on 10mg for a year!!! P.....k!!!

[SheffieldJane]

I have been puzzled by the medical response to my complaints of deathly fatigue. As if it can't be PMR or Pred and they have to start investigating afresh, like with questionnaires and sleep clinics. Sleep apnoea has been mentioned. It's like being in a parallel universe. I know what's causing it. Could it be that there is nothing they can do? Does anyone out there have their energy back? 😴

PS. Thanks for the think piece Mr Benjamin.

[markbenjamin57 in reply to SheffieldJane]

Thanks, too, Jane - like minds maybe?

I just don't 'get it' about the medics' responses to the DF question, and how some medics can't (or don't want to?) answer it. On reflection, mine, too, have conspicuously avoided discussing this, possibly most important and Life-altering symptom of PMR? The DF (mentally, as well as physically), takes your life away for days and weeks on end.

Maybe you're right in that some medics can't, or aren't inclined to do anything to resolve the DF problem since it's not Life-threatening? On the other hand, and as I well-know, the DF can be a major cause of clinical Depression - and all that goes with that.

Maybe (and just maybe?), some medics / GPs etc don't really want to tread into this mental health territory as it's outside of their professional scope: and / or they avoid these issues to be on the safe side.

Either way: 'DF' (Deathly Fatigue) is a real, not imagined symptom of PMR / GCA, and I'm sure, of many other auto-immune illnesses too. Logically, who would want to 'fake' a health condition that severely limits or stops normal and healthy, enjoyable functioning in Life from day to day?

Mmmm, as always..

MB

[CT-5012 in reply to SheffieldJane]

They know what's causing it but don't know what to do about it, just keep the patient jumping through hoops, keeps 'em out of my hair. Some Greek said it's a wise doc who keeps his patient busy while he\she gets better. Feels like we are in a parallel universe but it's only the system. Enough to make a cat laugh 😹

[CT-5012 in reply to CT-5012]

PS Maybe admitting they don't know what to do damages their I am god immage.

[PMRpro Ambassador in reply to CT-5012]

That is the real truth - they are led to believe they are doctors to cure patients and never do well with the chronic patient for whom there is no cure or the only cure is time. Which is where 95% of PMR patients live.

[Robinre in reply to SheffieldJane]

I still have days when I am like an invalid--unable to do much at all and just want to stay in bed al dayl. Other days I have all kinds of energy and I am almost back to normal (dosage the same). Can't figure this out. I am experiencing my third flare in 2 years and Rheumy has me on 5 and tapering off very slowly. My last "remission" lasted two months. Finally the doctor here in the U.S. finally "caught on" that you don't need to start high when in a flare and taper slowly but start lower and go up to the point when you last had no pain and then taper back down slowly. I figured that out myself over a year ago and did that myself and it worked fine. If it weren't for these different chat rooms and research I do myself (piggybacking on my husband's name to get in various worldwide studies) I would not understand this condition at all. Doctors don't explain anything other than say "it will disappear in about 2 years." No further information about flares, tapering, side effects of pred. etc. My doctor told me the pred was not responsible for me not sleeping and I knew it had to be---I was off the wall with energy. I never gained weight at all because I was so hyper. I had to take Ambien to sleep until I got around 7 mg. At this dosage and below I crashed but doctors did not give me explanation just said to have this blood work done and come back in three months. My friends and I have concluded the doctors are trying to kill off older patients Robin

[PMRpro Ambassador in reply to Robinre]

Bad days tend to follow good days - because you did too much while you felt so good!

[Brixhamhampster]

Markbenjamin57 thank you for another insightful post. In the same vein I feel that the doctors tell you about the symptoms you may experience which are the ones they have answers to and deny existence to anything out of their experience. Because this is a long term illness they don't really know how it changes our lives so completely and stick with the initial firefighting I.e steroids and AA. I am now stuck at 5mg after having to increase from 3mg during a stressful experience recently. My instincts just tell me to stay where I am for a while but that is in complete contrast with two doctors who say I should go straight back to three and continue to reduce 1mg a month. Like you and sheffieldjane I am totally exhausted most of the time but they are just not interested in whether my adrenals are up and running yet. I am only 15 months into this but already they are talking about being off medication. Isn't this illness hard enough in its own right to deal with, without such an uncompromising attitude from doctors. At the moment I am stashing away the steroids for a rainy day, smiling sweetly at their advice and doing what is right for me!!!!

[Peetee in reply to Brixhamhampster]

I am doing the same stashing away, also smiling sweetly, but following the advice on this forum. My GP wants me off steroids with no answer as to how to deal with the continuing symptoms. No understanding really of how life changing this illness is.

[markbenjamin57 in reply to Peetee]

Well said Peetee...

[Sandy1947 in reply to Brixhamhampster]

Yes, we are ultimately responsible for our good health. At the initial diagnosis I asked my fancy NY Rheumotologist when PMR would be gone and she did not answer. That was my first clue to find fellow sufferers for the truth! When she said to keep as active as possible I realized since I was in bed all afternoon at the onset not to take the bait and feel the pressure of following her "expert" advise.

Luckily, I am slowly gaining confidence to address all the challenges of PMR in my terms. There are so many moving parts: diet, fatigue, supplements, new forms of exercise, tapering, Pred, side effects. All this is my full time job! I am hopeful that down the road, I can be less focused on this. 3 months in and it's still all about PMR...the gorilla in the room!

Thanks everyone for inspiring me to greater heights and giving a laugh along the way!

[markbenjamin57 in reply to Sandy1947]

I agree, Sandy - that's why this forum is such a goldmine of information and support

[Patience_1 in reply to Brixhamhampster]

How right you are Brixhamhampster - dealing with such unhelpful medical attitudes causes stress that has a knock on effect on the pmr! A while back I decided I'd had enough "discussion" about tapering/levels of pain etc and would button my lip. I then went ahead with the tapering plan I though might suit me best, and managed to achieve another 1mg reduction (which I'd previously failed at twice). I'm convinced that taking away the pressure of having to conform to my gp's expectations helped me. Trust your instincts!

[Robinre in reply to Brixhamhampster]

I had to laugh, I stash my steroids also, expecially since I am afraid of GCA developing one day and my doctor told me that if I ever experience eye problems to take 40 mg right away. I thought I might not be able to obtain a large prescription for 40 mg right away so I have been saving up myself just as a precaution in the event I may be on vacation or a weekend when I cannot get hold of my doctor. I feel so sorry for people who are not so inclined to act as their "own doctor" or even have no access to the Internet. I feel they are hostages to an antiquated medical view of PMR.

[Brixhamhampster in reply to Robinre]

Robinre I really thank you for your post and I so agree with you that people without the internet and particularly without this forum must be having a terrible time. It is only here we can get real experienced advice delivered in such a kindly helpful way that we are not afraid to ask 'stupid' questions. I have only recently had any contact with my doctor after 14 months of doing my own doctoring. I was in touch because of a continuing headache, stiff neck and difficulty opening my mouth. I thought I was being sensible reporting these new symptoms and was told to take paracetamol. When I queried if it was ok to take so many the doctor said "paracetamol are doing you less harm than steroids"!! At this point I decided following my own symptoms was the best way forward. I did pick up on your comment about taking 40mg in the case of emergency and this has given me a 'safety net' to stop me adding more stress to problems not being dealt with in a professional way. Good luck with your journey through this quagmire of confusion 🤔

[Robinre in reply to Brixhamhampster]

Hi, I had read that your symptoms of headache, stiff neck and difficulty opening the mouth were symptoms of GCA. Are you concerned about this--especially the mouth part as jaw difficulties were one of the main symptoms of GCA

[Brixhamhampster in reply to Robinre]

Yes Robinre I was sufficiently concerned to ring 111 who were extremely helpful and gave me an appointment at A &E. They did lots of tests but concluded that my blood test results did not point to GCA. Not sure how they could be sure but had no option but to accept their opinion. I still have the symptoms two weeks later but they are certainly less severe. I have not reduced my dose and don't intend to until I am comfortable. They sent a note to my doctor saying I must have regular blood tests so I will be guided by my next results. Thank you for your interest.

[PMRpro Ambassador in reply to Brixhamhampster]

"the doctor said "paracetamol are doing you less harm than steroids""

He thinks does he? I'd dispute that! One lady had hand pain appear while reducing below 10mg and her GP decided it wasn't PMR but osteoarthritis and she should take paracetamol for it. It was absolutely no problem to take the maximum recommended dose over long periods he said. She didn't take that much but did try it. It did nothing useful but at a routine blood test a couple of months later her liver enzymes were significantly raised. The GP panicked and sent her for an emergency liver ultrasound. Nothing at all to be seen - and the technician said it was almost always paracetamol that led to these panic referrals! She stopped paracetamol - and her liver calmed down.

There has been a considerable amount of opinion from Australia in the last couple of years that paracetamol is no better than placebo for most of the pain for which it is recommended. It certainly does nothing for me!

Your A&E doctors were showing a bit of ignorance - they were relying on the ESR and CRP values which they expected to be very high with GCA. Up to 20% of GCA patients anyway have ESR/CRP within normal range - and many patients already taking pred don't produce the proteins in response to inflammation so they won't be raised. I do hope your GP is aware of that too.

[Brixhamhampster in reply to PMRpro]

Pmrpro thank you for all that information and I agree with all you say. I have not taken the second doctor's advice to take paracetamol for the long term as even to a layman that sounded so wrong. I also knew that not having raised inflammation levels did not mean that I could not have GCA. I still have the sumptoms which prompted me to see the doctor in the first place but they have become less severe. I am currently doing "watchful waiting" and having regular blood tests to see if my levels start to go up. I have not continued to reduce as advised!!! I know how I feel. Which is worse illness or doctors?

[PMRpro Ambassador in reply to Brixhamhampster]

Sometimes you are left to wonder!!!!!!!

[Lizwillis]

I do so agree with everything that has been said. The DF is such a blight isn't it? Interestingly when I went to see my lovely Bowen lady a couple of days ago, I told her I had been to see my GP last week just to update him on where I am at ( hadn't seen him since May) and told him I had had to go back up to 20 mgs a little while ago ( but am now on 14 mgs) because of some incredibly stressful situations, and he, as usual, started to say " you shouldn't be taking steroids for stress" which I knew he would say and repeated, as I have done before, that I don't, I have had to "up" the dose because of the reaction to the stress it causes in my PMR! My Bowen lady asked how old my GP was, I told her possibly around 50 and she said that she has discovered that younger doctors seem so much more clued up about the effects of stress than older ones. Thinks maybe when in medical school now, that stress is highlighted much more. Certainly for me it really messes me up. I don't bother with itemizing my symptoms/pain/stiffness etc etc to him anymore, I just assume it is either PMR or effects of Pred and just get on with it. He is lovely and lets me do what I want regarding dosage, but I have realised there is no point in talking about how I am really! Hey ho!

[PMRpro Ambassador]

Part of the pred fear is inherited - the doctors who were practising when the use of pred was in its infancy, the 50s and early 60s, saw the effects of the use of the massive doses they were using to start with, before there was any suggestion of the potential side effects. Those doctors were scared - and they taught their students to fear steroids too. It really is only doctors under about 45 who are less scared and who have been trained differently. There are still poor communicators but fewer. The even younger ones are used to computer literate and intelligent patients who have done their homework - and know we aren't all lunatics! Well, maybe we are but that's another aspect...

I'm so lucky - all the doctors I meet here are perfectly accepting of my still needing pred after all these years. Though they do prefer me to be at below 8mg. But there are few signs I'm on pred so perhaps it is easier for them than the doctors who see the patently Cushingoid patient. Many of the most hackneyed side effects of pred CAN be managed better if you know how. But they don't know how so they can't tell their patients.

[markbenjamin57 in reply to PMRpro]

Makes sense...

[SheffieldJane in reply to PMRpro]

It would be a brave doctor who contradicted you PMRpro.🤺

[ALeCount]

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