Hi - new here

Hello everyone - I'm 54 years and based in Scotland and was diagnosed with PMR about 4 years ago. Started on 20mgs of Pred reduced fairly quickly to 10 and then tapered very gradually to 4mg. But as soon as I go below the 4 the stiffness and pain returns - not to the same extent but enough to be debilitating. My GP has been pretty good - worked out very quickly in the beginning what was wrong and prescribed the Pred which worked immediately. He is very keen to get me off the Pred now (as I am) but I just cant get below the 4mg without the symptoms returning. Bloods ESR are ok - although I know from reading others posts that this isn't always a good indicator.

Anyway - just wanted to say Hi - and thanks as am finding the information on here really helpful!

14 Replies

oldestnewest
  • Hi Tag101,

    I would be really pleased if my optimum level of Prednisalone was 4 mg. I imagine the side effects would be negligible. I would be content to rest there if it gave me quality of life to be honest.

    Reading the posts has made me realise that winter hits us hard. Our preoccupations are much lighter in the summer e.g. Planning trips with enough rest and pacing built in. You may be ready to decrease when the milder weather comes.

    I think you've done really well and deserve a pat on the back. Don't be harried to decrease further, 4 mgs maybe your perfect dose.

  • Hi,

    As SJ says 4mg may be "your" level - at least at the moment, so don't get yourself in a tizzy about getting lower. Even though you're only in your 50s many people of that age are on other tablets for long term conditions.

    Doctors seem to have a love/hate relationship with Pred, and I agree that at high doses the side effect are pretty nasty, but at a low level they are minimal, no worse than most other drugs.

    You may find that in a couple of months you can try reducing again, and it works. You say you tapered slowly, are you doing the DSNS or similar plan and only trying 0.5mg at a time?

    Good luck, and don't be pushed into reducing when you can't.

  • He may be intent on getting you off the pred - but if the underlying cause is still active you still have PMR and you still need pred. 4mg is very low dose, The ESR is OK because you are on enough pred to keep the inflammation under control - but in some people it doesn't rise again while on pred, just to complicate things. Then the symptoms are king.

  • If it helps you PMR GCA Scotland have a Help Line on 0300 777 5090 if you want to talk to somebody. Phone call will cost the same as an 01 or 02 number and the charity does not charge.

  • Thanks all - I saw my GP again today and he was much more sympathetic and though the aim is still to get off the Pred in the future he's happy for me to continue with the 4mg for the foreseeable - with regular reviews / ESR etc.

    This site is great - really helpful and informative!!

    Thanks again.

  • My GP is the same. She said she was happy with me on 4 mg. - although I'm now a bit lower :) . She also said right at the beginning that her patients often keep a supply of 1 mg on hand even after they are off pred, just in case they need it from time to time. Now that I know more it sounds like she recognizes that the final taper can last for a very long time as there may still be a bit of PMR simmering away, or a bit of residual pred withdrawal. Eventually this tiny dose dwindles to nothing and that's when one is properly in remission. So much better than being told, you have to get off pred asap!

  • Poor you, getting PMR at such a young age and still have it after 4 years. Since joining this forum I realise that the main thing with PMR is to get to a stage where you feel you have quality of life. I was diagnosed with PMR just over two years ago and started on 15mg of Pred, felt marvellous. I did everything my Rheumatologist told me to do and decreased accordingly. She was very keen to get me off the Pred and I actually got down to 1mg which I realise now was unrealistic. My blood markers were low so she said to come off the Pred and take painkillers for the pain I still felt. No painkillers worked for me and the pain was dreadful....so I joined this forum and with much encouragement and advice I have returned to 5mg of Pred. feeling so much better, almost running again LOL. As much as I wanted to come off the Pred, its quality of life which is more important and so I will stay with it until I feel certain this dragon has left....my advice to you is to stay with 4mg until you feel satisfied you are free from this monster. Good Luck.....Mazz

  • Thanks Mazz - I would just like to get back to the gym and doing the exercise i could do before this hit me. I was never super-fit and to be fair very overweight until 2010 when through a 2 year strict regime of calorie restriction and increasing exercise I lost about 8 stone (112lbs) - and felt great! This continued for a while until the PMR started and frankly the exercise - other than normal day to day activity, is pretty non-existent. As a consequence I've put back on about 3 stone (42lbs) which is a real bummer!

    On the whole my GP is good - and is planning on review again in six months, has suggested I take 4 / 3 mg on alternate days, once I feel OK to do that. So will probably give this a go in due course.

    Good luck and hope everyone stays pain free!

  • Tag, could you try exercise which might be a bit more tolerable for you while you are still on pred? Maybe not the gym, but just extra walking? Amazing how quickly the calories can be burned up just by an extra few minutes of walking every day. That way you can pace yourself, not feel the competitive urge which gym reps might trigger which isn't good, and gradually rebuild your strength?

  • I had PMR for 5 years with no pred - and managed aquafit 5x a week in a warm pool, it was the only thing that kept me mobile! It meant I was then able to manage adapted Pilates and yoga classes. I started the aqua classes very slowly and didn't ever try to keep up with the others - but over time I was one of the most active in the class. It can be done with care.

    And pred-weight gain can be helped a lot by being REALLY drastic about cutting carbs. I was able to lose weight while still on pred at 15mg and on crutches so exercise wasn't practical - but even the extra walking I could manage helped.

  • Good luck to you too.

    However, the 4 / 3 mg on alternate days is still a greater rate of reduction the the DSNS way, where you would take 3mg one day, followed by 4 or even 6 days of 4mg, then 3mg again followed by one less day at 4mg and so on until you get to one day at each dose. After that you have one day at 4mg followed by 2 days at 3mg and carry on in a similar way until you are on 3mg for the 4 or 6 days. The method is better descibed on this forum by PMRpro. Another rule of thumb is to not reduce more than 10% of the current dose, which would be 0.4mg. The 4 / 3 mg on alternate days is effectively reducing by 0.5mg. It doesn't sound much, but maybe it makes a difference to your symptoms? When you take 3mg one day followed by, say, 4mg for 4 days, the total dose is 19mg in 5 days, which you can see is a very gradual taper (that dose = 3.8mg/day and so on).

    I'm reducing from 8mg to 7mg by the same method at the moment.

    Good luck with your weight too. You've done it once, so I'm sure you know you can do it again when the time is right. Tackle one thing at a time.

    Take care.

  • Keep walking your dogs Tag. If it had not been for my dog needing his walks every day I would have put on much more weight than I did when I started on pred. I dreaded the thought of putting on weight (I did put on a stone at first) so I gave my dog extra walks as its the only exercise I ever do. I honestly believe that walking is one of the best ways to keep the weight off, it did for me anyway. I appreciate you have/had a sprained ankle and difficult to walk like that but once you feel you can, get walking again !! Better than the gym, too boring for me. Good Luck.

  • Thanks guys - really appreciate the comments, so helpful and encouraging!

    I do walk a bit - as have 3 dogs, but sprained ankle in December has recently reduced that. Main issue is time when working - but also know that can be an excuse!

    Will look at the detail of the DSNS way - as it appears that works well for a lot of PMR victims! :-)

    Chin up everyone - sure it will be spring soon, longer, warmer days which definitely help me!

    Tag x

You may also like...