Question for long term sufferers

I am in my 4th year of PMR and have had one relapse in that time. At my last visit in April, my rheumatologist suggested that I should be weaned off Prednisolone by September and I am currently taking 2mg of Prednisolone for two months, reducing to 1mg for 2 months and then stopping altogether. The thought of reducing the dosage to zero made it a target I thought was in my means of reaching. I do have to rely on anti-inflammatories for pain but my monthly blood results show that the PMR has abated. I had also gained a stone in weight in the 4 year period so I decided to take some exercise alongside the steroid reduction and started with a gentle cycle ride on a flat route last week to see how I could cope. I felt fine afterwards, if a little stiff for 24 hours, which is natural after relying on walking and gardening in the past. On Monday I started a course of 6 weekly l hour Pilates classes as a beginner and afterwards felt like I had just had a workout when I got home. Marvellous, I thought. However, the next day the stiffness in my body came back, the heavy-leg syndrome has returned and I am tired all the time. I may be overreacting after only three days but the symptoms have not gone away and in the back of my mind I am worried that I am doing too much too soon and may be sending myself towards another relapse. Has anyone experienced similar after-effects from Pilates or any other exercise at this stage in their illness/steroid reduction?

16 Replies

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  • Hi Brevon, This is a tricky one and I think you need Kate's opinion on this one. For what it's worth this is mine. The lower you are on your pred, the more careful you have to be with pushing your body with exercise. Although I've only had pmr for 17 months (seems like a lifetime) I am very careful to take things easy as I can after a drop. In the last three days I am on 7.5mg down from 8mg and I felt tired out and feverish doing virtually nothing. Today I think I'm picking up again. I don't know how long you have been on the lower doses, but don't forget that you are nudging your adrenals to work as they used to do pre pred, which will have knocked them out. I know that weight gain is a real bummer. I only put half a stone on and most of my clothes did not fit me. If I do any extra exercise it's on a static bike in my bedroom for short periods. Look at what you are eating. Perhaps cutting some calories will help and not put you muscles at risk. I know Pilates is supposed to be gentle but you're out of your comfort zone when doing the class and that in itself will stress your adrenals. Take it real easy until you feel better. I know I'm not a pro. but who is. If I were you I'd stick to the gentle bike ride in the future. I've never had a blood test that showed inflamation so far and yet have been told that I'm a classic case for pmr. Could it be that, although your bloods look normal, the pmr is still active. Do take care. You're doing so well so far. Watch those drops - half a mg at a time is what my rheumy recommends.

    Hope you feel better soon, Pats.

  • Hi Pats, thank you for your full and very helpful reply. This is the sort of feedback I was hoping for. I was taking 4mg at the beginning of the year and reduced in .5mg stages to 3mg by the time I saw the rheumatologist in April (I was struggling some of the time and kept going back up to 4mg). She advised me to stay with the 3mg for a further 2 months before reducing to 1mg for a further 2 months etc as I have already explained. She does not advocate using smaller units than 1mg! I think you could be right that the pmr is still active, proven by the reactions I have had to the Pilates exercises and I will follow your advice and stick with the gentle bike ride or the static bike - I have been reducing the carbs since I started exercising but ensuring I have plenty of energy foods. I will let you know how I get on. Best wishes, Brevon

  • Hey Pats thanks for posting here. I have had pmr since last August (diagnosed finally November 2011) and have gone from 30mg for 3 days and am now down to 11mg. I am also complicated by my T1 diabetes which I have had for the past 52 years. It is interesting to note all the excercise regimes and diet. Unfortunately I am strictly controlled with the diet and as for the excercise, I walk a lot up to about 4 miles daily. I did not know about the dosage reductions making so much difference but will take that on board when I get to the lower doses (if ever) lol. I lost so much weight originally but now I seem to be gaining weight and it's nothing to do with my eating habits so presume I will just gain weight naturally with the pred!! I will keep plodding on but thanks again for those little tips on the lower doses. Thanks again Tricia

  • Hi Trishyb. Sorry to hear about your diabetes. I expect there's not much anyone can tell you about healthy diets. You must be quite fit, up to 4 miles a day, so it's not lack of exercise that's putting the weight on. It's the pred. I found that my weight stayed the same until I got below 10mgs. At 8mgs I lost three pounds in three weeks and now I'm on 7.5mgs I'm hoping for further drops. Over the first few months on pred I put on about nine pounds. Now I'm only about 6 pounds over my original. Trouble is it's all around my middle. What's really bugging me at the moment is the loss of muscle size in my arms. That's the pred too. I daren't exercise them much in case it aggravates my shoulders and causes a flare.

    Glad I was able to pass on some tips about reducing pred. Your adrenals have had a long sleep - treat them gently.

    Pats.

  • Hi Pats I'm hoping to drop down to 10mg next week when I see the doc and have started to do Weight Watchers last week. It is quite complicated counting carbs and also pro points!! I need to be a mathematician to do this and work out medication for diabetes phew!! but so far managed to loase 3lbs whoopee for me :) Will keep on trying. Tricia

  • Hello Brevan

    I am in my 6th year with PMR and GCA although for the first year I remained undiagnosed with what I now know were the symptoms of PMR. So I've been on steroids for 5 years, commencing on 40mgs and now on just half a mg every few days, with everything crossed that I am in remission!

    I had one relapse in PMR along the way with blood markers increasing and spent a while in a bit of a yo-yoing situation with the doses. However that wasn't until I reached 5mg and as that had been the sticking point for me, when the bloods were finally under control again my rheumy suggested I stayed at 5mg for between 5-6 months. I then continued reducing successfully again but this time not quite following rheumy's suggestions but tapering at a snail's pace in half mg decrements. For instance I did 5mg on 6 days of the week followed by 4.5mg for 1 day; 5mg for 5 days and 4.5 for 2 days etc. I feel sure the secret for me was 1) the rheumy keeping me on 5 for many months and then the very slow taper.

    Exercise-wise, when I was on about 2mg I joined a Nordic walking class for an 8-week session - that proved excellent with ttwo poles for support! I have also attended a weekly Tai Chi class for most of the years on steroids. I have walked every day, even if in the early days I could only manage 5-10 minutes.

    I don't think it's realistic to expect to be off steroids by a certain date - everyone's body reacts differently to each reduction, and I was led to believe that once we reach 5mg we need to remain on each dose for 3 months - the lower the dose the higher percentage reduction - and those adrenal glands will be working hard to kick back in with their normal cortisol production

    Of course your increasing discomfort could just be down to steroid withdrawal rather than increasing inflammation but, if it was me, I think I'd forego the Pilates class for a while.

    I'm so sorry this is a bit lengthy but hope it helps - slowly slowly is the secret Take care.

    Shirley

  • Hi Shirley, thank you very much for your full and helpful reply. Like you, my relapse was at 5mg and then, last year, I had invasive surgery, for which I had to double the dose for a week. It is since then that I have had a battle to reduce it successfully. I also tried a similar dosage reduction pattern to yourself but that didn't work either. My rheumatologist's view on the treatment may differ as I live in France but she never mentioned remaining on 5mg for 3 months, etc. As far exercise is concerned, I will follow your advice of keeping to the gentle sort. Best wishes, Angela

  • Hi again Celtic, You may recall my sight-loss GCA & 18 month pred course. Now off steroids after go-ahead by Eye Hosp. consultant and thought things would begin to improve with the general feelings of weakness in muscle tone & stiffness in most joints, not to mention the irritating rash. Having thoughts of asking for referral to a rheumy as these ongoing symptoms are very suggestive that PMR might be lurking in my background even though the blood test results show nice low inflammatory marker levels. As a long term sufferer of both conditions, I would value your opinion, again, as you have been very helpful in the past. Regards & good luck with your withdrawal too!

    raymck

  • Hi raymck

    It is possible that your continuing muscle weakness and joint stiffness is PMR still lurking - you did come off steroids fairly quickly, and relapses are quite common in those who appear to make fast recoveries. Equally, it could be your body still recovering from the onslaught of steroids.

    If you had raised blood test markers at diagnosis, it doesn't necessarily mean that they would be raised again now in the case of PMR.

    With that rash in mind, has anyone checked you for psoriatic arthritis? My first rheumy in my undiagnosed year questioned whether I had ever experienced psoriasis when he was trying to eliminate different conditions. I also have a friend who developed a nasty rash and painful muscles/joints a year or so ago and she was diagnosed with psoriatic arthritis.

    There is obviously something going on and if I were you I would get the advice of a good rheumy who can hopefully give you some answers. Good luck and do let us know how you get on.

  • Hello Brevon. <br style=""> All the responses above make loads of sense. Coming off the steroids is a really long-term thing and you can't do everything at once. There might be some residual PMR still active, but besides that your body has become dependent on the artificial steroids (re the comment about your adrenal gland being knocked about) and so you will have some withdrawal symptoms, not to mention (possibly) new aches and pains related to soft tissue damage by the prednisolone. For example, a lot of people report 'rotator cuff syndrome' in their shoulders and upper arms when they come off. If your doc would prescribe you a combination of 2.5mg and 1mg tablets you could come down a bit more gently. Don't forget that you can take painkillers to help you over the first couple of weeks or so of a reduction. Get those paracetemol down your neck, and before you start exercising! <br style=""> <br style=""> The process of coming off prednisolone and 'recovering' from PMR has not been researched. All we know is what we have learned from one another. One thing we have found from listening to loads of people about coming down and coming off is that if you overdo it on one day, you have to pay the next! So a new regime of exercise that requires a session every day is not going to suit the PMR-recoverer. You need to rest, as well as exercise. Pilates isn't really gentle. There's not a lot of movement involved but you are working your core area very hard and your muscles need time to recover. <br style=""> <br style=""> At the charity we often get asked whether there are any foods or supplements that can help. Well, we have to say that there may be theories (e.g. about turmeric) but that these are only theories because they have never been properly clinically tested. However (and here I'm speaking completely personally), I was quite interested in the theory about aloe juice helping in auto-immune illnesses. I found it terribly difficult getting off the last 5 mg. But after months of trying I started taking 2fl.oz. of pure aloe juice every day. After four months I got off the steroids and I never went back on. But when people ask if it was the aloe that helped I just have to say 'I don't know, because I don't know how I would have been without it.' At least I felt I was being kind to my body.

    I think of PMR as a dragon with a fiery head and a very very long tail!

    Best wishes

    Kate

  • Hello Kate - I've had some family illness to attend to over the weekend so apologies for being late in getting back to you and also Pats, Celtic and Trishyb for all your advice and support. Today I cancelled the Pilates weekly sessions and have just about recovered from last week's! In hindsight, I should have asked the question before I started exercising. Lesson learnt and advice taken. Your explanation and personal experience has been most helpful, Kate, and I will give the aloe juice along with the slower steroid reduction rate a try. I feel more positive than I have been for a long time. Thanks to you all. Brevon

  • Hi Brevon, Celtic and Trishyb,

    Kate puts it all in perspective. I know she's been there. She helped me so well when I was at my lowest. I've learned so much from her and all the lovely ladies who enitially set up this web site and charity in the beginning when so little was available for sufferers.

    If I've been able to help i'ts because I've listened and learned.

    Good luck, and remember, Don't let your guard down! I'ts not over till i'ts OVER. I'ts

    the last few miles that are the hardest.

    We fight on. Pats.

  • I have had PMR for the last ten years then I developed GCA five years ago I have found it very difficult to cope is there really any other treatment other than steroids.I have been to see a specalist, but no one believes some of my symptons pain behind my eyes they water

    quite alot ,dreadful headaches, jaw ache, tinnitus, stiffness in my shoulders..I do hope you

    have other people with some of the same symptons.

  • Hi Bonnie,

    You have all my sympathy. PMR and it's big sister. I do not have GCA, but have heard how bad the pain can be. They have said that it's like no headache you have ever had before, therefore I believe your doctors know exactly what you are talking about.

    Go with the steroids Bonnie, as long as you still have GCA. As for PMR, yes there are other treatments for it, but you would need to talk it over with your rheumy.

    Pats.

  • I note some references to a "Club Zero" which seems to be for us ex-steroid folk, but the search engine here does not come up with a link. Can anyone point me in the right direction please, as I feel I ought to be in it now I am off the steroids altogether, although still suffering from various "after-effects" possibly due to my hypertension. raymck

  • Club Zero is on this link

    pmrandgca.forumup.co.uk

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