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

22 Replies

  • Posted

    Hi Tony, welcome to the forum.  I am a newbie and have no medical background.  I have no energy whatsoever.  Although I was diagnosed with ME 14 years ago so am kind of used to it.  Was diagnosed 12th November last with PMR and put on 20mg of pred.  I don't have the side effects that you are experiencing besides no energy, I have had no smell for about 20 years.  I am not sure if you are aware or not of GCA which can effect your eyesight.  You would need your optician to check it out.  It can be quite serious if not treated.  This is a great forum and some people have medical backgrounds as well as lots of experience.  I'm sure they will not be on line until the morning.  They are just fantastic with their support, information, experience and advice.  So hang on in there and someone will answer you later on.  Good luck on your journey.    Pat
  • Posted

    I am the opposite regarding the giant meal, I can eat a huge meal and feel I have eaten nothing, the pred makes me feel ravenous. I think most people get very tired as this is very much a symptom of PMR. In the evenings I am like a wet rag!
  • Posted

    I got down to 5 mg for a short while before having a flare - I was relieved to exerience that many of the pred. side effects (that  I was beginning to worry about being a permanent fixture) did begin to fade. Unforunately I had to go back up to 15mg to manage the flare am now slwly reducing again, but it cheered me up no end to finally get a little glimpse of "me" again.

    I do recognise many of your complaints - but now I feel better able to "put up" with them - they will pass 

  • Posted

    I'm not surprised you have these side effects if you have been on 20mg since September  - 20mg counts as a high dose and is actually higher than the usual starting dose which is 15mg. The only real way of cutting the side effects is cutting the dose. The double vision in PMR would usually be taken as a warning of possible GCA but if it has improved with the reduced dose then it probably was the pred. The lack of energy could well be the underlying autoimmune cause of the symptoms we call PMR - and the pred doesn't touch that, it only controls the inflammation that is the cause of the pain and stiffness.

    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.

  • Posted

    Hi Tony, lack of energy is, or fatigue as some prescribe it, is unfortunately something very much part of the PMR/GCA experience.  Both the inflammatory condition and the steroids themselves can contribute to such tiredness.  There is no easy solution but we can make it easier on ourselves if we give ourselves plenty of rest and TLC whilst the steroids are tackling the inflammation.  Unfortunately, there is no cure for either PMR or the fatigue that accompanies it, but rest assured that the fatigue will gradually lessen as the inflammation improves and the steroid dose reduces.

    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      

    • Posted

      I really appreciate your comments.  Sometimes I wondered if my side effects were part of something else.  Doctors I have dealt with seem to know very little about PMR.  Before I reduced the pred and was having the sight problems I immediately went to a good eye doctor.  I have to see one every year as required for being a tennis official.  He felt that the pred or the PMR might cause the double vision and blurry vision.  Not much consulation but eliminating other problems was good.  At this point I am withdrawing from all tennis tournaments because of the side effects.  Now, apparently, recovery can be, what, 1 to 6 more years?  Again, thanks for your helpful comments.  Good luck to you too.
    • Posted

      Just to be a misery - I have had PMR for over 10 years now. I think I could do the umpire's job now but not anything that required standing for long! 

      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. 

    • Posted

      Tony, PMR goes into remission when it wants to and not when we want or our medics want it to unfortunately.  That can take anything from two years upwards, with a tiny handful of very lucky people I've spoken to getting off steroids in a year.  Of course, we tend not to come across such people on these forums, probably because they don't feel the need to investigate whilst experiencing a textbook recovery.  However, it is believed that such people can be more likely to succumb to PMR for a second time than those who recovered more slowly.  At diagnosis, I was told 18 months but the goalposts kept being moved for the next few years!  Hopefully, in your case now that you have decided to withdraw from tournaments for a while, you will find that you will start to feel much better.  You are already showing signs of that, having been successful in reducing to10mg, plus the improvement in your blurred vision.  Importantly, do not reduce the steroids too far or by too large an amount at any one time as the body needs time to accept the withdrawal and the lower you get on the steroids, the higher the percentage drop, so the slower you need to go for success.  If you are someone who had raised markers of inflammation in your blood tests (ESR and CRP) at diagnosis, then these can be repeated before each reduction to use as a guide together with your symptoms, ie if they haven't reduced at any time then you need to mark time on the present dose.

      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.  

  • Posted

    oh I'm so with you about the lack of taste, no energy and poor sense of smell, not to mention the lack of desire to eat. Steroids are really strong systemic drugs. I've been on them on a high dose (for GCA so I'm just at 60 now, down from 80mg after a zigzag back to 70mg) and I'm just getting a sense of taste back (really hot salsa and some sweet things) and just getting some sense of smell (only garbage, can you believe it?) Really wrong. Yes, the blurry vision is there, but you should have it checked out just to make sure it's not something else.  Btw, I'm just coping with most of the side effects of the steroids and waiting til I get to a lower dose in the hopes that I can start to improve as my body adapts to the drug. The docs seem less than sympathetic with my lack of ability to keep food down, for instance. I'm on a liquid smoothie diet since this started (bananas, protein, almond milk, other nutrients). I try the occasional food but it causes major reflux (the steroids have triggered a Peripheral neuropathy throughout my body). So I'm hanging on, and tapering slowly, hoping that I get better with each 5mg I drop. So far, so good.

    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. 

  • Posted

    Tony I know how you feel re tiredness. I am newly diagnosed and for a number of months before the PMR came on I had no energy at all. Now it's even worse. My younger partner really can't understand why I am in bed so early and fall asleep watching the tv. We used to go to lots of social functions,  theatre, dinner parties etc. the last one I went to a week ago I arrived at 7 pm and left at 9 pm. Not exactly PC as it was his business clients.

    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

    • Posted

      No - unpleasant, life-changing and a pain in the rear but NOT life-threatening. It doesn't even shorten our lives as far as anyone knows. 

      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.

    • Posted

      Hilary, I used to find that sleeping on a folded duvet helped my overnight pain in my hips and shoulders.  In the very early days before diagnosis I used to roll off the bed and roll back in on the other side every half hour or so just to relieve the pain in my hips as turning over was a no-no - needless to say poor hubby was despatched to the spare room!
    • Posted

      No Eileen both shoulders are the same and legs too. Nothing has changed except for a miraculous few days after injection but pain slowly returning. Unlike you guys I have to wait for the next injection so hanging on for another in two weeks. I wish I could take extra pred when I need it.
    • Posted

      I assume it was an i.m. depomedrone injection - can you have localised shots for the shoulders and hips or can they offer a higher dose depot shot? I just know my granddaughter was on very high dose i.m. pred which lasted longer than that (it had to!).

      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.

    • Posted

      Good idea Mrs O but I'm getting married on 18th April so suspect my fiancé wont like that 😄
    • Posted

      Oh Hilary, how exciting, but that made me chuckle.  Perhaps in the circumstances an injection the day before might be the best bet!wink 

       

    • Posted

      Hi Eileen

      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

    • Posted

      I always sleep on my sides and the pains are much worse because of it.  I am now sleeping 4-5 hours at nite, very restless, then, unless I force myself to be busy during the day, will nap 2-4 times a day for 1/2 hour to 1.5 hours.  Within 90 minutes of waking in the morning I am ready for a nap.  It's driving me crazy to be so tired all the time.
    • Posted

      Yes - heard about the cyclone but all it said on our news was it was coming but then never told us anything about it! Glad you survived. I can imagine it doesn't do farming land any good at all!

      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.

    • Posted

      Why are you fighting the fatigue? If you plan a rest/sleep at some point you will almost certainly find you feel better the rest of the time. Many people try to carry on as pre-PMR, but if your body needs rest, it needs rest. Fighting it all uses up energy that can be better employed elsewhere, acceptance that this is the way it is, how can I make the best of it, can bring a lot of relief.

      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.

    • Posted

      Thanks Eileen  I'll discuss the couple of those things with my Dr and see what she may be able to do for me and I'm okay to go back up to 5mg if necessary - if that is a low dose then I'll be fine with that and see if it helps.  I really wasn't making much reduction progress there for a while until I went onto Lodatra it seems much easier - well until now anyway.

      Appreciate your time

       

    • Posted

      I use Lodotra too and was able to reduce far better with it than with pred originally - and also to 4mg but 3mg was a step too far. I'm sure it is because it is there ready and waiting in the early morning! I know it is all in comparison to Medrol for me which was awful and useless even at 20mg but as soon as I switched to Lodotra the Medrol weight started to melt away and all the other side effects went too. 

      But whatever version of pred it is - if the underlying disease process is still active you need some pred, and preferably enough pred!

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