Aaaargh

So fed up with this illness! Not sure what to do now? I have been trying to reduce from 20mg of pred and am also on 1000mg of mycophenalate twice a day. When I got to 17.5 the hips and shoulders started up again, not as bad but noticeable. I tried to carry on reducing by 1mg of pred every couple of weeks and got down to 13mg but it just became too uncomfortable. Now back up to 15mg of pred and had two or 3 days where I felt almost normal. I have maintained the mycophenelate all the time and have been on it for about 5 months now. However things are not so good now and I'm not sure what to do. I have been down this route before and at 17.5 mg of pred had to go back to 20mg. I am still working half days only, and have been for about 3 months but I am struggling with this. Just so fed up with not being able to reduce the preds and still being in constant pain. off on holiday next week so can have a complete rest but worried that my disability will affect my wife's enjoyment and limit what we can do. think I will give the rheumy a call when I'm back from holiday as I'm not sure the mycophenelate is actually doing anything. I have also tried methotrexate and azathriaprine, the first did nothing the second made me extremely ill!

22 Replies

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  • Have you been checked for bursitis in your hips and shoulders? I had hip bursitis that was not too bad at higher doses and it returned at lower doses. Local steroid shots and it cleared up.

    And yet again - myofascial pain syndrome can affect hips and shoulders as badly as PMR by making all your back muscles tight - mine were like boards instead of being soft - and then trap nerves causing referred pain into those areas. Physio or massage can mobilise the trigger spots alongside the spine. Or Bowen therapy is something you can access without a doctor and can also make a massive difference.

    I met a German orthopaedic specialist who was doing research in MPS at a meeting in Innsbruck a couple of years ago when I could barely move even on crutches and it wasn't just PMR - his lecture was "me". I'd wondered about this as for the first 5 years I had PMR it wasn't diagnosed because my bloods were normal and I was early 50s. I kept going using my osteopath and Bowen therapist - it kept the hip and shoulder pain reasonably at bay, the stiffness alone wasn't horrendous though I constantly had pain. He said that MPS is often found alongside PMR and the bits are confused - it is all caused by cytokines, systemic in PMR and in the form of trigger spots in MPS. At higher doses of pred these cytokines are minimised but as you reduce the dose they resurge and cause stiffness and referred pain.

    Several people on this and other PMR forums have tried Bowen and found it helps a lot. I'm NOT a practitioner by the way - I have no vested interest. A trial of Bowen for pain patients who aren't helped by traditional medicine is being done in the NE of England - including by my former therapists who are, understandably very excited - in much the same way as acupuncture is also available under the NHS. If it is going to help you will know in 3 sessions at the most - but often a patient crawls in with a walking stick, leaning on a friend but walks out with less pain after the first session.

  • PMRpro, thanks again for your reply, they are always so useful. It is interesting you talk about myofascial pain as my back also really bad at the moment and I know what you mean by back muscles being like boards. I had quite a lot of physio and acupuncture for this more than 12 months ago and it cleared up. When the hip and shoulder pain started bursitis was considered ruled out. I have had injections in my right hip several years ago for bursitis mind! I was diagnosed with Fibromyalgia quite some time ago and PMR was diagnosed after I could not get out of bed and hardly move with hip and shoulder pain which cleared up within 8 hrs of taking preds.

    You have mentioned Bowen therapy before and I think it is something I'm going to have to try, there is a local practitioner so no excuses.

  • Are you saying that you are OK on 20mg? I started on 20mg and had terrible problems reducing. My rheumy only gave me 5mg tablets and I just flared up when I tried to reduce. I found out that trying to stay on the same dose if I got bad was a waste of time, I needed to increase again. I have 1mg tablets now too and found it much easier to reduce.

  • piglette, Yes I seem better on 20mg but not clear of any symptoms. I have a supply of 5mg, 2.5mg and 1mg of pred so not a problem to reduce in small amounts.

  • I have never been totally clear of symptoms, but much much better than before the pred, so at least I have not had to move to a care home in a wheelchair, I can carry on life slowly but surely.

  • Hi Griggser. I can sympathize totally with you. Also on same dose of Mycophenolate for almost 5 months along with 22.5mg steroids. I don't feel its doing anything to help me reduce down either. Started on 40mg last July and many flare ups along the way. I still live in hope! However at 50 I am having to apply for ill health retirement as unfit for work. I hope you enjoy your holiday but remember to rest at times too particularly after the flight and journey.

  • 11caoline29, thanks for your reply. 50 is young to have this and I feel for you. I'm starting to think that I might well have to think about early retirement, I'm nearly 59. Good advise on the resting after the flight as I had already been thinking what I need to do once we land. You know go to the supermarket to get the shopping in as we are staying in an apartment. I think I will probably now have a doze before doing anything as we arrive around midday so plenty of time. Hope you feel better soon.

  • If you started at 40mg do I assume you have a GCA diagnosis?

  • Yes I have PMR & GCA diagnosed June and Fibromyalgia diagnosed 7 years ago.

  • I know quite a few rheumatologists who do not believe these so-called "steroid-sparers" have any role to play in GCA.

    There are a couple of younger women on the forums who had GCA, used the very slow reduction from the higher doses after a rough ride for a few months and being reduced far too fast so inducing flares, and are back at work and in full health after about 2 years.

    Some people simply cannot tolerate dropping by more than 2.5mg even at the higher doses and need to start with 1mg reductions as early as 25mg. There are now a few rheumies who are listening to us about slowly slowly - next step is to get them to use it at the higher GCA doses for patients who struggle.

  • I am receiving my treatment with a Neurologist over the last 16 months. Only saw a private Rheumatologist once and still on NHS waiting list. Yes 5mg reduction is too much for me and had flare up at 25 mg everytime so I decided to try 2.5mg reduction. Going to try to go from 22.5 mg to 20mg in a week or two. Side effects have been never-ending for me so got to make progress with the reduction even if it is at the slowly slowly pace. So glad of everyone's advice on this forum for reassurance as still feel very alone with these conditions.

  • Have you seen the "Dead slow and nearly stop" post?

    healthunlocked.com/pmrgcauk...

    Even rheumies are using it!

  • Yes I have but unfortunately my GP & Neurologist expect 5mg reduction per month which obviously has not worked so now I am doing it slower and at least it is going in the right direction. I have had too many flare-ups along the way and told to go back to 30/35mg which is so disappointing.

  • There is a definition of madness: doing the same thing over and over and expecting a different result. 5mg per month often will work at high doses - but still not for everyone. In this case, 30mg is a lower dose - and there is a basic rule for reduction in PMR/GCA: never more than 10% at a time. At 30mg that is 3mg.

    Both your GP and your neurologist have used pred in other illnesses and just reducing pred WILL work for most people at 5mg at a time. It will NOT work in PMR/GCA - they are chronic illnesses where the underlying cause of the inflammation is still there and active, causing refills of inflammation at the drop of a hat - or when the body is under stress. And messing about with its fix of pred is putting it under stress.

    No, pred is NOT addictive in the conventional sense, but it is capable of making the body dependent on its presence in the expected amounts. And cold turkey in GCA is not a good idea!

  • Hi Griggser,

    If you clarify whether you have other problems as suggested by PMRPro, and find its "just" PMR, then suggest you try reducing using her very slow method, even from 20mg. But only when you are painfree, there's no point in trying to reduce when you still have pains. Good luck, DL

  • DorsetLady, thanks for the reply. You have hit the nail on the head, I have been reducing but am still in pain which is stupid. I do also have fibromyalgia and really bad back pain at the moment. I need to see the rheumy and get back to a dose where I am pain free and then start on the PMRpro slow reduction plan. It's getting my head around that this illness really does have hold of me and I need to take control and not just be pig headed and think I can reduce preds can I'm a big strong chap (or used to be). Bowen therapy has been suggested and I think I need to give that a go as well.

  • One of the really significant moments I believe is accepting that you are where you are - there is no going back until the PMR burns out, which it does more often than not. Until you reach that acceptance you waste so much energy on fighting it that you have nothing left for you. Once that happens and you manage to learn to go with the flow things can improve dramatically - especially psychologically or emotionally.

    Are you sure it is fibromyalgia? One of the Mitchell Moser Bowen videos tells the story of him discovering Bowen - and using it for a patient who had been told he had fibromyalgia. Most of the symptoms went with a few sessions. I suspect that fibro is a get out for many mainstream medics - there is no test, there is no effective treatment so when they don't know they get out the fibro label. In the early days of PMR for me there was a massive overlap with many of the fibro pain points, but I was 1 or 2 down to get the automatic dx. Pred made such a difference to me it was a no-brainer - but 3 years ago I had the same things you are describing and was on 20mg Medrol which took until mid-afternoon to work! Its greatest effects were a flourishing beard and muscle wasting! A different corticosteroid helped greatly - but sorting out the myofascial pain syndrome was the best cure.

  • Hi again Griggser,

    I so know where you are coming from! And PMRPro is right, once you have accepted that you can't do what you used to do, nor necessarily what YOU WANT to do, it does help - a little! Still very frustrating though. Trouble is, we all still think we are in our twenties! Trouble is, we ain't! But that doesn't stop us "older", won't say more mature, people enjoying life.

    Enjoy your holiday, recharge your batteries, and mind the sun! DL

  • Go and have a good holiday just remember the sun screen and think about going up a level pred affects skin

  • When taking Mycophenolate you must stay out of sun or wear at least factor 30. Bit of a nuisance but better to be safe.😎

  • hi, replied to you again, but think it may have gone to PMRPro instead, but I expect you'll read it anyway! Fuzzy brain syndrome, or what. DL

  • Just a quick update. Rang the Rheumy yesterday only to find out he is on holiday! I now have an appointment to see him the day after I get back from holiday. Rang my GP to discuss where I'm at and he advised to go up to 20mg of steroid, I had gone up from 13 to 15 then 17 over the last few days and had got some relief at 17. He did confi that my inflammation market had gone up to 18, bloods were taken last week when I was on 13mg. Still taking the Mycophenolate but wonder why when it's not allowing me to reduce the preds! I have been on Mycophenolate for 3.5 months so would have thought there has been enough time for it to make a difference. Anyway off on holiday this afternoon so let's see what happens when I get back, Bowen treatment and Rheumy in quick succession.

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