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I was diagosed with PMR just over 3 weeks ago and put on Predisolone 20mg once a day for two weeks

Posted , 11 users are following.

fran2498
fran2498

After two weeks my doctor told me to reduce the dosage to 15mg once a day which I've been taking for the past week.  However, almost from the start, although the pain and stiffness of the PMR has virtually disappeared, I feel nervous and anxious most of the time and my legs in particular feel very weak and I'm frightened of losing my balance.  I reported this to my GP and he suggested reducing the dosage again to 10mg and 15 mg on alternate days which I started doing today, having taken 10mg this morning. I've felt quite wierd all day and my legs feel worse than ever.  Has anyone else experienced this and does it eventaull get better?

0 likes, 31 replies

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  • linda17563
    linda17563 fran2498

    Posted

    It`s probably you getting used to the steroids, but I would be very wary of reducing too fast. 5mg straight away from 20mg seems too fast to me......you could end up with a flare and have to start all over again....I`m sure others on here will advise.....good luck, and always post on here with any queries....very helpful....
    • fran2498
      fran2498 linda17563

      Posted

      Thak you Linda. I am only doing what my GP instructed but I think I will stick with the 15mg each day until I see him again as I found this morning after taking only 10mg yesterday that the pain and stiffness in my upper arms was beginning to return.
  • Sheilamac_Fife
    Sheilamac_Fife fran2498

    Posted

    It's the Prednisolone Fran. It takes a bit of time to get used to it. In my experience it gradually got better. However, as Linda says be careful reducing too quickly. You have got rid of the pain, you don't want it back!

    it sounds as if maybe 20mg was a bit much to start. It would have been good to get used to 15mg which is the most common starting point. If you have no returning pains and stiffness though, maybe you will cope with this reduction.

    it us more usual to stay on 15mg for a few weeks to be sure you are on top of the inflammation, then come down to 12.5mg again for a few weeks.

    i had to go slower, via 13.5mg to avoid a flare. Once you reach 10mg, you really need to come down much much slower.

    Good luck! I hope you feel better soon.

    • fran2498
      fran2498 Sheilamac_Fife

      Posted

      Thank you Sheila.  Please see my reply to Linda above.  It's the weakness in my legs and shaky feeling that is really bothering me.  I'm used to being fit and active and before all this started could quite happily walk 5 miles without any problem.  At the moment I don't feel confident enough to walk half a mile, let alone 5 but I guess I'm just being impatient, I suppose as you say, my body is still adjusting to the medication.
    • Sheilamac_Fife
      Sheilamac_Fife fran2498

      Posted

      I was the same, I think most of us will recognise the weak shaky legs and not being able to walk far. It seems to me that it's the fit, active ones that get PMR!

      Also feeling unstable. It's horrible! Acceptance is the thing, I'm afraid. It took me ages to accept that I have a serious, chronic illness and that it doesn't show on the outside... I found that I had to go through various stages a bit like a bereavement. Denial, anger etc .... Now with acceptance comes pacing myself and not expecting to be able to do the things I took for granted before. Lots of rest and going for a walk but having lots of stops. Or lots of short walks. Sitting about or napping during the day equated to laziness to me before! But no longer... I am protecting myself from flares and hopefully shortening the time on steroids!

      Keep chatting to us Fran and let us know how you are getting on. We were all at the slightly bewildered, scared stage in our first few weeks with this illness and its treatment and are here to support. Even to be told that how you are feeling, although horrible is normal and par for the course I found very helpful. 

    • karenjaninaz
      karenjaninaz fran2498

      Posted

      Fran, I am in 13.5 pred and occasionally get the shaky leg feeling. I hate it, but I find, if I gently keep going it goes away. I learned that inactivity makes everything worse. For example, I have breathlessness from pred. Yesterday I just wanted to crawl in a cave. Instead I got on my stationary bike and very slowly pedaled for a half hour and felt immensely better. It's hard not to give in to inactivity and fear is a subtle foe.
    • fran2498
      fran2498 karenjaninaz

      Posted

      Thank you Karen. Certainly for me, like you, the best policy is to keep going, I don't like giving into things. I di hate this shaky feeling though but am trying to ignore it. How long have you been on the steroids? The tops of ny arms are still a bit stiff and painful first thing on the 15mg but goes off gradually throughout the day
    • karenjaninaz
      karenjaninaz fran2498

      Posted

      Fran, I started on 15 mg pred Dec 2. After about 3 weeks my rheum suggested going down to 12.5. After a few days of that i got lots of aches including my head. Went back up to 15 for about a month and now doing the dead slow technique as described here. I only go down 1/2 mg at a time. When I first decrease about that amount I get minor niggles but they subside. I also get some aches if I try a new exercise but that goes  away without any pred increase and maybe use Tylenol. I also tire more at first. 
    • fran2498
      fran2498 Sheilamac_Fife

      Posted

      Thank you Sheila, it's comforting to know that I'm not alone! Do you know if the weak shaky feeling is related to the steroids or the PMR itself? I'm hoping it's the former. Acceptance is the thing as you say but it's not easy is it. I wake up with a feeling of dread every morning at the moment wondering how I'm going to cope which is stupid really as I always do but things aren't the same as they were before. My Mother lived to the grand old age of almost 100 bar a couple of months and was reasonably fit until she broke her hip aged 97. I always thought I'd follow in her footsteps. Certainly no history of PMR in the family! How long have you had it? A few other people I know who have it say they haven't experienced any side effects form the Prednisolone at all. Lucky them!
  • EileenH
    EileenH fran2498

    Posted

    Well - heaven knows where this notification went to in the ether - I've just got it half an hour ago! Anyway - better late than never I suppose but I wonder how many more I haven't seen!

    It is difficult to tell whether it is the PMR or the pred - though since you feel the wobbliness is worse rather than better as you reduce I'd suspect it is the PMR. The inflammation makes the blood supply to the muscles not as good as it should be - so your muscles are running out of oxygen and nutrients, as if you were running really hard for the bus even if you are not. Imagine how your legs would feel. PMR definitely does affect your balance - many of us would fall at the drop of a hat and we also dropped things!

    One lady who had problems of a similar nature tried taking her pred at night at was her GP's suggestion. The wobbliness then happened overnight and by the time she got up she was much better. He said he'd note it for future reference.

    The nervousness and anxiety is probably the pred and it will improve as you reduce the dose and as your body gets used to the pred - but don't be tempted to try to reduce too fast as you will just end up back where you started. From here on I would suggest trying to reduce not more than 1mg at a time - it also helps to find the right dose more accurately as well as being less of a shock to the system, which in  itself can lead to a return of symptoms very similar to PMR due to the reduction of the dose. 

    I reduced from 15 to 10 to 5, 2 weeks of each and stop, when I was first given pred and was absolutely fine, even at 5mg - until about 6 hours after missing the first 5mg dose when I was in as much pain as before the pred. I never got back to 5mg for a very very long time!

    I don't want to sound a misery but the not being able to do what you used to do is something you will have to learn to live with - Sheilamac has written about that already so I won't duplicate it. 

    However - if you are used to walking, why not get yourself a pair of walking poles? They are far better than a walking stick for balance and don't look as "old lady" when you are out. Some years ago a group of ladies from the northeast of England PMR support group joined in a nordic walking course done by AgeUK. One of them could only walk with a zimmer at the start but after a few months was able to walk much better and without it. All of them said it improved their balance. 

    And here's some reading:

    https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316

     

    • tina-uk_cwall
      tina-uk_cwall EileenH

      Posted

      Yes, Eileen, I didn't receive notifications for well over a month and I also didn't receive notifications of further replies to threads I was involved in. When I contacted the moderator he told me that my email address was not being seen by patient and therefore when notifications went out mine was bounced back. It was a problem patients end and once the moderator reset things patients end everything is back to normal.bregards, tina

       

  • ptolemy
    ptolemy fran2498

    Posted

    I am so sorry to hear you have been diagnosed with PMR. One thing PMR is actually life changing and we need to change our pace of life to fit in with the PMR (and the steroids). PMR has a mind of its own. I did read somewhere when I was first diagnosed to tape down carpets etc as you can be unsure on your feet and it is easy to fall. As the others have said you have reduced with quite a reduction, the rule of thumb is to keep it to ten per cent max. There is a recommendation by a group of doctors of six weeks on 15mg and then six weeks on 12.5mg then down to 10mg for a year. The pred can cause a lot of side effects, although some people get none at all.
    • fran2498
      fran2498 ptolemy

      Posted

      Thank you.  I see my GP again next week and I guess he will recommend staying on 15mg for aother few weeks before reducing further, especially as I am still experiencing some discomfort in my upper arms first thing in the morning.  I didn't realise what a horrible illness PMR is!
    • EileenH
      EileenH fran2498

      Posted

      What time are you taking your pred? The earlier in the morning you take it, the sooner the arm discomfort will fade. Every morning a new dollop of the inflammatory substances are dumped into the body - the earlier the pred gets at them, the better. Some people wake early, take their pred and settle down for another couple of hours - by which time it is working.

      And watch out for overdoing things like carrying shopping - I still can't do that without my biceps reminding me I have PMR! 

    • ptolemy
      ptolemy fran2498

      Posted

      Hi Fran, when I was first diagnosed with PMR my rheumy gave me the impression that you take steroids and then you carry on as normal. I wish! You need to give into PMR, if you overdo it, it comes back and bites you. I have taken to pamparing myself as well as becoming a real bore on nutrition, as steroids can cause loss of needed vitamins. You should have been given vit D and calcium by your doctor. I have never really been able to get rid of my upper arm pain. I bought one of those lavender things you stick in the microwave to put round my shoulders. A jacuzzi and Canadian hot tubs are nice too. A hot shower is an alternative.
    • fran2498
      fran2498 EileenH

      Posted

      I usually take it between 8 and 9.30am depending on what time I get up. My doctor told me to take it either with or immediately after breakfast.
    • fran2498
      fran2498 ptolemy

      Posted

      That's exactly the impression my GP gave me!  Actually I know of three people personally who've had PMR for over 2 years and have been able to do just that with no side effects from the Prednisolone at all.  One lady in particular leads a very active life style and regularly goes on 5/6 mile walks.  She eventaully came off the steroids after 2 years but a few months later her symptoms started to return, she is now back on a low dose pred and is absolutely fine again.  She is obviously one of the lucky ones.  Yes, I am taking Vitamin D and calcium.  My thyroid is borderline underactive and I'm wondering if this could have an effect.  Will discuss with my GP when I see him next week.  I do find a hot shower soothing.
    • ptolemy
      ptolemy fran2498

      Posted

      I think you will find that most people with PMR do have some problems it is just that they do not always tell everyone else. People think I am fine because I look well because of the steroids and I try and live my life as normal. I find people don't want to know about my illnesses! I have a friend who took steroids for PMR for three years, he tells everyone he took them from between twelve months to twenty months, I don't know why the time keeps changing, and that he took them one day and had no pain or symptoms after that. I then talked to his wife and the story was completely different! 
    • EileenH
      EileenH fran2498

      Posted

      Until a couple of months ago I was on 5mg, with no visible side effects and felt absolutely fine. Then I developed a flare of something - back to 15mg, feel absolutely fine all day and still have no side effects. Still OK at 14mg, trying 13mg - but with 12mg it all came back after 4 or 5 days.

      Not sure I could do a 5 mile walk - certainly couldn't uphill rolleyes - but I don't LOOK ill at all.

    • fran2498
      fran2498 EileenH

      Posted

      Thanks Eileen, hope you continue to keep well.
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