Long term steroids

Hi all

I'd be grateful for any thoughts on my situation. After seeing the same rheumy for 8 years, and feeling she was sympathetic to my VERY slow Pred reduction, yesterday she said she was discharging me back to my GP as basically I made the decisions about my steroid reduction and she wasn't adding anything to the discussion. She basically said she didn't think I had PMR anymore 'because the natural course is 2 or 3 years' and that any aches and pains I may have when I reduce the dose is 'wear and tear from ageing' (I'm 58, was 50 when diagnosed), and anyone would feel better on steroids so that doesn't prove I've got PMR. This is despite the fact that last year when I developed severe shoulder pains a month or so after my reduction from 4.5mg to 4mg, which I put up with for 4 months during which my ESR crept up (it's always reflected my clinical state), she seemed very happy that I'd finally gone back up to 4.5mg and seemed surprised that I hadn't done it before! She seemed to imply that my problem is being on steroids for too long so that I've stopped making my own and any reduction will take my body several weeks to recover (I did know about this). She said that it was up to me to decide how and when I reduced the steroids and while it would be better to be off them, in the grand scheme of things, as I'm under 7mg, the risk of side effects is negligible.

Just to fill in on the background: I was diagnosed with PMR 8 years ago, responded initially fairly well to 20mg Prednisolone but probably went too quickly to 12.5mg as I had a nasty flare and it took me 4 months on that dose to begin to feel OK again (GP and rheumy both suggested I stick it out rather than go back up to 15mg). That gave me the revised diagnosis of 'atypical PMR' and various letters from rheumy said I wasn't responding to Pred as well as she had hoped. Thereafter I was on a slow slow reduction of 0.5mg every 2 months or so, which usually gave a few weeks of increased stiffness but basically was OK. At 6.5mg I started the one dose reduction per week method and that worked well. However over the last 3 years I've only gone down from 6.0mg to 4.5mg because at various points when I was about to reduce again, something else cropped up like anaemia they wanted to investigate, or anxiety/depression (not linked to the PMR) and both the GP and rheumy said to wait till they were sorted out.

I am left now a) feeling like I'm being told I'm responsible for the situation by not reducing faster b) being a bit soft for not putting up with the aches and pains I might get when reducing, and c) wondering what to do next.

I'd be interested in other people's experiences of being on steroids as long as I have, of reducing below 4mg and also of what kinds of aches and pains you put up with when reducing at this stage?

Sorry for the rant!

10 Replies

oldestnewest
  • Hi mk, I read your post with interest (and trepidation!). I'm 51,diagnosed in April, put on 15 mg, reduced at my request to 12.5 mg after a few days (I am only 48 kg), just finished 5 wks at 12.5 and wanted to slowly taper to 10, but feeling pressure to drop there now, as rejected AA meds for bones (at my insistence DEXA scan just done shows bones ok for the moment). V unhelpful OH doc (1st visit, no notes in front of him) now questioning my diagnosis ( frankly he seemed to doubt existence of PMR, I think hiding he's never heard of it!!).

    My first Consultant appt not til July, so am going to try 10 mg til then if nothing else but to placate GP, but I must say reading all these lived experiences, it's a totally confused/inconsistent situation 'out there' for PMR sufferers (yes we exist!) in terms of this Pred reduction advice. I can see exactly your dilemma a,b, c and anticipate the same when the real taper gets going (what is Pred withdrawal, what is PMR not being controlled). I'm at the start of this, you're an expert, so I have no advice obviously, but thank you, your 'rant' will be reread by me no doubt in future and I'll feel less alone. Thank you!

    MouseBear

  • Hi mousebear, pred withdrawal is when your body has been on a dose of preds for a while then gets the hump when you reduce the dose. Because the symptoms of pred withdrawal are very similar to PMR type pains very often we can confuse the two. However, withdrawal pains can start on the very day of your withdrawal but will improve within a day or two or within the week.

    A flare on the other hand is when there are not enough steriods in the body to control the level of inflamation that's currently there and so the inflamation rears its ugly head a a full blown flare is the result. Again it can start on or very soon after the initial reduction and the pains simply get worse.

    I belong to the patient . Co . UK forum and a member there has devised a withdrawal regime that sort of cons the body into believing that it's getting the preds it wants. Of course it won't work should the inflamation simply be too great for the dose you want to give your body but by reducing slowly and by a slow reduction it does work. I and many other members have used it. Eg.

    1 day new dose, 6 days old dose

    1 day new dose, 5 days old dose

    1 day new dose, 4 days old dose, continue until you reach 1 day of each dose then reverse the method until you are on the new dose continually. Yes it takes longer to reduce but the risk of flares is reduced. I only ever reduce by .5 so my reduction is even slower.

    All the best, regards, christina

  • Thanks Chrsitina, I hope I will be able to distinguish between the two types of pain when the time comes! Much appreciated ,it's so hard to find ones's way through this, I'd be lost without this forum.

  • Hi mousebear, try registering with patient . Co . UK (written like that in case a website address is censored). There are loads of really experienced PMR/GCA sufferers there who can offer loads of advise. Regards christina

  • Good Morning mk14, I am sorry that you have had this awful experience with your Rheumy . I went through exactly the same as this with my previous Rheumy and I have had PMR for 11years..being told constantly along the way ..Yes you have got PMR and No you haven't got PMR although I knew by my symptoms that there was definetly PMR pain there and in these 11 years I have got down to 5mg steroids several times but after a fall in Dec 2014 which caused a dreadful flare - up and early this year I was up to highdose steroid 17.05mg -16mg ..I am now down to 13.05 but going slowly , Is your GP usually sympathetic to you ? I avoid going to my GP because there is such Negativity re PMR..fortunately I have had a caring Rheumatologist now for the last couple of years , I have a lovely Osteopath who understands my PMR and a few years ago got me in touch with a wonderful Support Group . I went to a wonderful meeting yesterday and although a magic wand couldn't get waved to take away my pain you are with other sufferers who know your pain and most are going down the same route as you are. Fortunately for me I have a Rheumy who believes in me and leaves me to reduce my steroids myself and I have tried all the steroid sparing agents .Luckily for me my rheumy doesn't always go by blood tests and as my PMR doesn't always show up in my blood tests he always goes by how you are yourself and your pain . My pain moves around and i struggle to walk .At the moment I am back on Amitriptyline 10mg and I am feeling better in myself Please Please look after yourself and fight your corner. Do you have a Support Group near you ? Best wishes and I am sending you Virtual hugs as I know how depressing this condition makes us .. I have gone round in a full circle with my New Rheumy going back on medications that I tried before and this year I went back on Methotrexate 15mg and 12.O5 injections ..even though 1st time around it effected my liver ..but I was willing to try it again if I could come off of these awful steroids , but unfortunately it made me very poorly and kept me housebound and unable to get up for days after taking it .My family were very relieved when i came off of it .Because I am willing to try anything my Consultant said he will stick with me , He agrees that i am not the type of person to just keep taking the steroids just for the sake of it .I hope to get my steroid down to between 12- 10 mg before I see him again in November . Good luck in the way forward for you.best wishes trish 29

  • Hello, I do feel for your situation but listen not all is lost! Atypical patients (and you were classed as atypical, just like I was simply because of your age of diagnosis failing outside the normal 60+ group).

    Whether your rheumatologist or even your GP like it or not one of the reasons why some patients find it hard to reduce the preds is quite frankly because of their initial reduction regime. I hear time and time again of patients that have suffered flare following flare following flare simply because they have followed clinicians advise and are reducing too fast or by too great a dosage drop or both. The result? Yo yoing which in the end is harder to get under control long term.

    How ridiculous that she says PMR only lasts for 2/3 years! Look up the condition on any website and it quite clearly states that the 2/3 years is only an estimation and many patients will have this condition for much longer, even for the unfortunate, for ever.

    I wholeheartedly support the go slow method. I suffered one flare prior to Christmas and following that I have Been on a go slow method of reduction and am now down to 8mgs, (diagnosed December 2013 and like you I was about your age).

    She is quite right about the fact that because you are on less than 7mgs any or all of preds side effects are at the lower end, and the fact that you're on 4/4.5 I can't see what her problem is! Like you I never ever reduce if I have any other medical problem or I am particularly over stressed. (I suffer terribly from cold sores on my face that erupt at least monthly, so never reduce from the time of an eruption and for a good two weeks thereafter).

    You should definitely not feel as if you're being too soft by not putting up with any emerging aches and pains. If they are PMR related they have to be brought under control in order to avoid a flare.

    Personally, I think you're better off without her, after all what has she done for you that your GP cannot do? And most PMR patients never ever get to see a rheumatologist and are only ever treated by their gp's.

    I say continue with your go slow method. If the inflamation is still around at the time of a reduction your body will let you know. However, don't confuse the beginnings of a flare with withdrawal pains which will diminish after a couple of days or so. Hopefully you will one day reach the finish line, but as we all know PMR recovery is not a race, it's about finding the the lowest dose of preds that will control the current level of inflamation not the other way round. All the best, regards, christina

  • I've had PMR for 10+ years and been on pred for 6 of them. The PMR hasn't gone away in that time - and I've had 2 major flares. I have managed to get to 5mg using the slow reduction I harp on about.

    Your rheumatoogist is wrong - only about a quarter of people are off pred in 2 years or so. About half take up to about 6 years, the rest take longer or it is there for life. German textbooks quote 5 years as the average time for PMR to burn out/go into remission.

    The full story about the slow reduction is on this forum too - here:

    healthunlocked.com/pmrgcauk...

    If you use this you shouldn't have withdrawal pain - and will know if the PMR is flaring.

    If you have a GP who is sensible and helpful - stop wasting your time with hospital visits unless you can find a more sympathetic rheumy. They do exist - contrary to most of our experiences! But they aren't essential.

  • After four years, my GP referred me to a rheumatologist. I was concerned, before the appointment, that she might be a 'get off pred at all costs' advocate but I couldn't have been more wrong. In fact, in her letter to the GP she states that I might be one of those who never get off pred competely. So there are some enlightened consultants around and I hope you manage to find one MK14.

    Good luck

    Anno

  • Hi

    I am sorry to hear of your experiences. I do have every sympathy! I can tell you that my Aunt had PMR for almost 30 years so, unfortunately for some, it never goes away.

    There seems to be some sort of manic desire to get people off steroids. I have resigned myself to taking them now- just beginning year 4, because my quality of life is dismal if I don't! I am trying to reduce but it needs to be done very slowly and avoiding flares when possible.

    Good luck! x

  • Well, I think it will be a blessed escape to be discharged by a rheumy who states that you :

    "can't have PMR any more because the natural course is 2 or 3 years' and that any aches and pains I may have when I reduce the dose is wear and tear from ageing"

    ........at just 58 for goodness sake!

    As Trish29 has pointed out, she has been on steroids for even longer than you, but she has now found that her second rheumy is far more caring, understanding, and most important of all, clued up in the ways and whiles of PMR. Depending on whereabouts you are, we may be able to recommend someone in your area.

    As for "reducing below 4", the slower the better. My experience was to reduce by just half a mg, taking seven weeks to slowly taper to each new dose until I reached zero Pred, via 7 days old dose, one day new dose; 6 days old dose, two days new dose; 5 days old dose, three days new dose, etc. As for "what aches and pains" I experienced at these low doses, mostly it was muscle pain caused by trying to use muscles that had been weakened by steroids. The worst of these pains at one time were centred between my shoulder blades and down my right arm - it hurt to try and sit back against a chair. I found an excellent physio at my local community centre, who found knots in the muscles of the shoulder blade and massaged them out gently, including ultrasound and heat. After 3 sessions I knew it was working and had complete relief after a couple of further sessions.

    Chin up, don't let that rheumy's comments get you down, and good luck.

You may also like...