Continuing problems

I've posted on this forum a few times before. I was diagnosed August 2016 and started on 20mg Pred. The doc was unsure of diagnosis so requested I reduce v quickly to 0 mg to see what happened. As I had a return of symptoms he decided it must be pmr and put me back on a 15mg dose. After about 10 days I requested it should be put up to 20 as I wasn't feeling well which he did. Since then I've seen a rheumatologist who gave me a reduction programme and by the beg. Of December I was taking 9mg. I have felt quite unwell from then on - we went to our son's for Christmas and I increased the dose to 10 then 12.5 to cope with that, reducing again to 10 at beginning of January. Feeling fairly grotty, I contacted the rheumatologist for an appointment (they were supposed to send me one but hadn't) and saw her on 31 January when she told me to increase dose and let her know if I felt no better which I did in Feb. She told me to again increase (to 15 mg) and let her know how it went etc. We were again going away to visit our children so I stayed on that dose until we returned home last week when I tried to reduce to 12.5 as she had instructed. I have been feeling so awful, really ill and in pain since then that today, after reading a post from a lady whose mother of 76 was very unwell and had improved after an increase, I cracked and increased my dose to 20. I'm quite desperate to get off the Pred really but I am at a loss as to what else to do. I almost began to feel as if I was going to die I felt so bad although I know that sounds a bit over dramatic. I am nearly 73 and have always felt young for my age and am now wondering if the rest of my life is going to be like this. The rheumatologist is talking about trying Methotrexate next and having a CT scan but in the meantime I have very little quality of life. Does all this sound normal for this horrible condition?

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  • Hi,

    Unfortunately what sounds normal is a Rheumatologist who has little idea of how to treat PMR. No wonder you are in such a state, anyone given the reducing and increasing plans you've had over the last few months would feel exactly the same.

    You may be anxious to get off the Pred, but you can't, at least not yet. Not until your PMR has gone, and that's not likely to be any time soon. All you can do is take enough Pred to keep the inflammation under control.

    20mg should be a large enough dose to get your PMR under control (not cured, there isn't a cure) , once it has, usually about a month, then you need to decrease the dose SLOWLY until you reach the level that keeps the inflammation at bay.

    Usual reductions recommended by doctors are in 2.5mg steps until you get to 15mg, some manage to get to 12.5mg or even 10mg if they are lucky. Once below 10mg you need to be thinking of 1mg drops. But you really need to stay at each dose for at least a month to ensure the inflammation is still under control at all times. Many people can't manage 2.5mg at time even from 20mg and have to go 1mg a time. It depends on individuals and their circumstances. With your history (not your fault) I would image that 2.5mg may be too big.

    It is also recommended that you shouldn't reduce more than 10% of your current dose, so at 20mg that 2mg, at 15mg it's 1.5mg. Your previous reductions have obviously been larger than that.

    Also think your Rheumy may be a bit premature in considering MTX - you haven't been given a realist reduction plan to follow, so he/she is not giving you chance to do things sensibly.

    PMR is not nice, but it has been made a lot worse by those who should be helping you.

    While you're waiting for scan and another appointment suggest you stick at 20mg for a month, and then maybe try a reduction so long as you feel okay.

    Do hope you feel better soon, but please don't be rushed into reducing Pred too quickly, nor into taking MTX if you don't want to.

  • Thank you for your quick reply. I was almost tearing my hair out - which isn't a good idea as it's falling out anyway! What you say sounds sensible and I know I have read similar advice on the forum before but I guess when a consultant tells you to do something you feel you should obey. You may well know the department actually - I believe we both live near the county town of Dorset. The only thing I'm slightly bothered about is having to ring her next week to report progress or lack of. Thank you for suggesting I can resist taking Methotrexate. I must say I don't like the sound of it although my GP says it is a 'good' drug. I will follow your advice and stick at 20mg Pred for the next month assuming I can get away with it. I already feel better than I did this morning.

  • Hi Carrot1,

    Yes do know Dept, haven't seen lady Rheumy, although did see her predecessor some 5 years ago, he didn't have much idea or a good patient bedside manner either! Although having said this, another lady on here said when she saw someone recently she was quite impressed, so perhaps you caught her on a bad day! Or maybe not same person.

    By the way are you coming to Haskins Garden Centre for Christchurch group meeting on Friday 17th from 11am onwards. Just a friendly get together for coffee and chat, nothing formal. If you feel you'd like to come just contact pmrgca.christchurch@gmail.com, if not maybe we could meet up one day for chat. Message me if you like.

  • I will try to come on Friday 17th. Haskins is not too bad as a venue - at least I know how to get there. I'm not familiar with Christchurch at all. I have only been thinking lately it would be good if there was a support group nearby.

    The lady rheumatologist at Dorchester is very nice actually and very caring, eg she rings if she says she will, even at 8.30 pm! It's not that I don't like her but as you know, it's all rush rush to get off the steroids without actually being cured. So one ends up with the worst of both worlds, ie taking the nasty drug to no effect.

    I look forward to meeting you on Friday.

  • Good, be nice to see you. As I said it's not a formal meeting, so if you want to bring a friend or partner etc I'm sure they'll be very welcome.

  • I agree with DorsetLady. I am one who views prednisone as my "friend" with this condition as it helps me to feel somewhat more normal and even better than when I had my "sick body" (pre-diagnosis). Finding a happy medium with the tapering is the key and not everyone will be the same. I have no experience with MTX, as I have not gotten to that junction yet. I will be on prednisone protocol for almost a year, when I finish my last dose. Until then, I can function better and consider myself lucky to have gotten to the bottom of this mystery condition sooner, rather than later. Everyone gasps when I tell them 1 yr protocol on prednisone, but if they had my body and the runaway train that it was with 3 auto-immune conditions, they would not be so horrified! Lol. So yes, prednisone is my helper in this case. My taper has been more gradual however, so for that I feel my doctor is on the right track. Best to you that you're feeling better soon.

  • One year on pred for PMR is, for the vast majority of people, pie in the sky I'm afraid. PMR lasts about 2 years if you are amongst the lucky 25%, a further 50% of patients take up to 4 to 6 years. An Italian study done with patients put on methotrexate showed that 1) while mtx reduced the pred dose in the short term, 2) it did not reduce the incidence of pred-related side effects and 3) after 6 years, some 30% of patients still required some pred.

    This is the study they are so keen to tell us shows mtx works to reduce the pred dose.

  • Thanks. I also have 3 autoimmune conditions - hoping no more come along! I wonder why there is no such thing as an autoimmune specialist!

  • PMR is also autoimmune - so does that make it 4?

    Rheumatologists think they are. I think some specialise in one part of autoimmune disease, lupus, Sjogren's or RA for example - the trouble is, autoimmune disorders attack different parts of the body so each organ specialist (for want of a better way to say it) looks after them. Don't desperately want a rheumy looking after a thyroid problem!

  • No I included pmr. Yes I guess you're right in your final sentence. Can't quite see why RA would be a different specialist from pmr though as I believe they're often mistaken for one another in the early days aren't they? I keep wondering if that's what I've got actually although I'm just clutching at straws as I feel no better on 20mg Pred. I can't understand why.

  • They aren't in that a rheumatologist looks after both, more or less ;-) Sometimes I feel that for PMR it is more less than more...

    I have to admit, my immediate thought is it isn't PMR. But it is a well known problem that messing about with doses can lead to it becoming more difficult to get symptoms under control afterwards. It also isn't unusual for people to need a higher dose to get things sorted. Now of course, that could also mean it isn't "just" PMR.

    I wonder if maybe your rheumy is thinking along similar lines when she wants to put you on mtx - that is first line for RA. It IS a fairly good drug for what it is meant to do. I have come to the conclusion that it may be worth trying it if you are struggling otherwise. If you don't have problems and it helps, all well and good. If you have problems or it doesn't help you can always stop taking it, you don't have to wean off like with pred.

  • That's interesting. I shall bear it in mind. I need to contact her imminently anyway.

  • My gosh Carrot, you have had a bad time. As DorsetLady says you need to take reduction slowly. Jumping up,and down does not help, so the sooner you can start to just slowly reduce in a controlled way I am sure it will be much better for you. I had a rheumie who wanted me to reduce from 20mg to 15mg which was a disaster. I was in awful pain. The rheumie just laughed and said I should expect a few flares. Unbelievable.

  • Yes I reduced from 20 to 15 at one stage and then by 2.5 each time down to 10. I wasn't too bad then but the last few months have really been difficult. I realise (grudgingly) that things can't be the same as they were but surely we can expect to have some quality of life even with pmr? Since before Christmas I've had zilch. I am resolved to stick at 20mg for now and see how it goes for a few weeks. Thanks for your reply.

  • Funny how very few people using DSANS have flares - until they get to the dose that is right for them.

  • Food for thought!

  • I am glad you have received some intelligent replies from experienced people. I looked at your post last night and my heart went out to you. I was so exhausted that I was not sure that I could put together a response that was any good to you indeed I am not sure I can be helpful today, having just been dished a bowl full of family worry.

    I just want to say, don't despair, what you are feeling is normal for this condition, as is the " can't bear it" feeling.

    Reading your story makes me feel fairly sure that I would feel dreadful under this treatment. Your dose has been so mucked about. What you need is a steady period on a dose of Prednisalone while the inflammation gets under control.you also need some rest and cherishing.

    This will pass. I would be reluctant to add MTX. to the mix.

    Medics are so afraid of the ( serious) adverse affects of steroids they sometimes forget that there is an actual person suffering at the end of their calculations.

    If 20mgs is helping, I would be inclined to stay there for a few weeks and rest and recuperate. Then begin your reduction using the dead slow method when you are feeling better. Make notes on how you feel and communicate your symptoms to your prescribing doctor. This is not a time to be brave.

    You are not alone. Please take care and keep us posted.

  • Thank you for your comments SheffieldJane. I'm sure you're right in saying that both doctors (and patients too) are perhaps too keen to phase out the steroids as soon as possible. One of my worries is in case it's something else causing all this. I read constantly about misdiagnosis with pmr although my symptoms do fit to some degree. There doesn't seem to be a 'one size it's all' with this complaint. I've made up my mind to stay on 20 mg for a few weeks and hope that stabilises things. Oh for a an illness where one pops a week's pills and it goes away!

  • Hi Carrot, Reading your post I know exactly how you feel. It's like never ending one thing after another.

    I was diagnosed may 16 with PMR and it's been a merry go round since. I started at 20mg then told to reduce down . It was almost like let's put you on pred. Now let's get you off pred. So had what thought were a number flares.

    Long story short saw rhummy privately, who was really good, now my GP has a better grip on things, and I am now doing the slow decrease, thanks to this site.

    I've had lots of other issues which I thought were flares, but again thanks to this site found they were muscular spasms. So did not need increase my pred dose .

    Like you I had not much quantity of life and had to rest a lot, something I'm not used to doing. I run a boarding cattery so had to get extra help in.

    Plus I felt very down but now looking back I can see a great improvement. I'm down to 9mg pred and reducing. And so far so good. I found it's important to listen to your body and be firm with your GP. And to rest and be kind to your body.

    I've had to stop my yoga class but am able to walk for miles, so I think we have to focus on we can do and not what we can't. I could not of done any of this without the help and advice in this forum.

    I can't give you any medical help but I can relate to your issues and say that you are not alone and things will improve for you but it does take time.

    You have to think like a tortoise and not a hare, if that makes sense xx

    Best wishes and keep positive

    Carole x

  • Thank you for you thoughts. I understand your tortoise/hare reference - that is the frustration of the illness isn't it. Not being able to be the person you once were!

  • But as 9lives has said - in a year you will look back and see how far you have come. Almost everyone does - especially the ones who have malleable doctors who are willing to learn from and cooperate with the patient.

    As I keep saying - the slow approach to reduction isn't slow when it works.

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