PMR side effects
Posted , 12 users are following.
I have been on prednasone since July, 2014. My dosage since september has been 20mg. The pains are basically gone but the side effects that I have will not let me work as a tennis official. The sides are no energy, no taste, poor sense of smell and, of course, a feeling that I have just had a giant meal without eating anything. Over the last 2 months my eyesight has gotten blurry and I have had double vision. Not all the time but off and on abut 40% of the time. Last month we gradually cut down the steroid to 10mg. Eyesight is slightly better but the lack of energy, sleepiness, and the other sides have remained the same. Does anyone else have these side effects and how do you treat them? Any help would be appreciated.
0 likes, 22 replies
pat38625 tony80950
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ptolemy tony80950
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janet08828 tony80950
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I do recognise many of your complaints - but now I feel better able to "put up" with them - they will pass
EileenH tony80950
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https://patient.info/forums/discuss/pmr-gca-and-other-website-addresses-35316
This link takes you to a thread where there is a post with a load of links. One is to a paper by a top group of rheumatologists in the UK. They start patients at 15mg for 6 weeks, 12.5mg for 6 weeks and then 10mg for a year and this cuts the rate of flares. Further down the thread in posts 4/5 is a slow reduction scheme which many patients have used successfully. It might be worth you trying to reduce further after all the time you have been at a high dose - although the Bristol group would keep you at 10mg for a long time after the length of time you have been at a high dose you may well get away with aiming for a lower dose. The slow reduction allows you to identify more accurately the lowest dose which controls the inflammation which most doctors want you to look for far faster than yours did.
MrsO-UK_Surrey tony80950
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Use extra willpower with the hunger pangs and try and reduce the amount of refined carbs in your diet to avoid too much weight gain.
Steroids can be the cause of some blurring of eyesight in some patients. However, the double vision to which you refer should be thoroughly checked out by a good optician or ophthalmologist to rule out any signs of the PMR-linked condition, GCA (or temporal arteritis), or any other possible causes. In the case of GCA, you would need a much higher steroid dose to protect your eyesight. However, as you say there is a slight improvement since reducing the steroids to 10mg, then, hopefully, it is a side effect of the steroids.
So my advice would be to get your eyes checked thoroughly; have as much rest as possible, especially during the week or so following a dose reduction; and don't overdo things on a 'good' day because PMR will come back to bite on the next, including the fatigue.
l
tony80950 MrsO-UK_Surrey
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EileenH tony80950
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The literature says about 25% of patients get off pred in a couple of years or less but are at a higher risk of relapse. 50% take up to 4 to 6 year - I'm obviously in the other 25%! These figures do seem to be similar to what we see on the forums, even bearing in mind that the population on the forums is skewed, comprising the people who possibly have more problems.
MrsO-UK_Surrey tony80950
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Thank you for your good wishes - both my PMR and GCA went into remission approaching 3 years ago and I was able to discontinue steroids. It took some 5.5 years but it was little hassle as far as side effects were concerned once on the lower doses and life returned very much to normal - so a life-limiting but treatable condition for a while, but not life threatening and untreatable like some worse illnesses.
LisaCACO tony80950
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I think your body will eventually adapt as well. it's frustrating to have no sense of taste-I know that for a fact, but my dietician told me if you eat a high protein diet, make sure your tongue isn't suffering from a yeast infection (steroids can trigger that), take a multivitamin and zinc, your taste buds will grow back. It's working for me so far. Hang in here.
hilary_76724 tony80950
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those of you that remember, I saw a rheuma last week who gave me an injection as I can tolerate Prednisolone due to ZES. I am already taking 40mg of Omeprazole and have been for the past 10 years. One week on the symptoms are creeping back.
i know where you're coming from not being able to work. I was due to stand in the elections but have gracefully withdrawn.
does anyone find lying on either side at night makes your arms and shoulders worse. I have to lie on my back which I hate and get very little sleep which probably doesn't help the tiredness.
well having visited my cousin in a hospice this morning, at least we are all lucky. It's not terminal as far as I know.
Good luck
EileenH hilary_76724
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And it does get better - if nothing else, you learn to manage things better. I still lie there in the mornings wishing I could go back to sleep - but I suspect that may be more to do with too low BP after taking my medication than PMR!
Are your shoulders much involved in the PMR? Maybe you need some rather more localised treatment - or just a bit more pred for a while.
MrsO-UK_Surrey hilary_76724
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hilary_76724 EileenH
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EileenH hilary_76724
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If you have bursitis in hips and shoulders they will use local cortisone injections in addition to oral pred - maybe the same applies for you. Bursitis will go eventually on oral pred - but it goes a lot quicker with an injection. I speak from bitter experience!
Have you tried keeping your shoulders warm in bed? I realise the night sweats make things like that a problem but I did find my daytime neck pain was greatly eased by a thin scarf to keep draughts off.
hilary_76724 MrsO-UK_Surrey
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MrsO-UK_Surrey hilary_76724
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denise76179 EileenH
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Its been a while since I logged on as have been busy picking our lychee crop and then had to endure a cyclone - bit of a mess. I was interested in your comment of low BP as I have low blood pressure also. since I last logged in I have been put on metformin for a slightly raised sugar problem I think it was around 8 but now seems to be controled at 6-7 with the metformin. Is low BP a symptom of PMR? as I hadn't really noticed that I had low BP before. I am now down to 4mg and have the shoulder pain or knee pain sometimes at night and definitely the fatigue, I guess it is the PMR causing that. I am not going to reduce any more for while as I'm dead scared of a flare. Q. Do you consider 4mg a medium or low dose as far a side effects go? I started prednisolone at the end of last May (2014) so its been almost a year. Q When would I expect to get my muscles back as I find it hard to even get a lid off a jar, and climbing up and especially down steps also is a challenge.
Denise
tony80950 hilary_76724
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EileenH denise76179
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No - I have atrial fibrillation and the meds are to control the BP in that context. In the meantime I have lost 17kg in weight so probably that has also had an effect and I have reduced one of the tablets a bit with no problem.
4mg is considered a low dose - that's what I have got to after 5 years on pred and if I have to stay there that's fine by me! To get there in a year is brilliant! The pred doesn't help the fatigue aspect of the PMR, that is the underlying autoimmune disorder, although I suppose at the higher doses there will be the pred effect to counteract the fatigue.
If you are still having great difficulty with steps I'd suggest maybe your dose is a bit too low. Do you have pain in your hip and outer thigh? That could be trochanteric bursitis, common alongside PMR and makes steps hellish! I had a flare of that last autumn and a local cortisone shot sorted that pretty well. Hand grip is also possibly a tendon/synovitis problem - and maybe a bit more pred might help there too. Even just 5mg might make a difference.
EileenH tony80950
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If you are having so much night painyou could either try increasing your pred dose as it sounds as if you are not taking enough to control the inflammation well or splitting it, taking 2/3 in the morning and the rest late afternoon/early evening. Or you may have bursitis that would respond far better to local cortisone injections and then the lower oral dose would manage the rest.
denise76179 EileenH
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Appreciate your time
EileenH denise76179
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But whatever version of pred it is - if the underlying disease process is still active you need some pred, and preferably enough pred!