Hopefully improving!

Eighteen months since PMR diagnosed, was on 15mg daily now down to 3mg per week. The aching is much milder, very controlled reduction around 7% per month. Shoulders aching upset sleep but generally I believe it is getting better. Toothache still a problem - only a few teeth left and fillings keep falling out (I'm 74 year old male still working and enjoying it) Bone density tests delays 5 weeks to be seen further 5 weeks since and still no results.

Generally I appreciate how lucky I am, hope fellow sufferers progress as quickly as is safe!. Daily Express suggested statins may influence and encourage onset of rheumatic problems - I've been on statins over four years so perhaps there is a link . Thanks to previous contributors who encouraged me during blacker days.

6 Replies

oldestnewest
  • Hi triker,

    I am so pleased for you as you seemed to have managed PMR so well. The 7% reduction is interesting. Was that your idea, may I ask, or do you have a really good GP who understands this illness and can agree with your fine - tuned drops? My dealings with doctors recently has left me in despair. I am back on 10mg now and feeling ok again. During the summer, I actually got down to 6.5mg, but it didn't last and in the early autumn I caught a virus which caused a flare and sparked horrid pains in my elbows and knees as well. Thankfully, these pains have now mostly gone.

    Good on you for working. Long may it last. I miss my old job so much.

    Good luck with your bone tests. On the subject of statins - I too have heard that they can cause problems.

    It's so nice to hear a good story as it gives hope to many of us I'm sure.

    Pats.

  • Thanks Pats, you were one of the first one who encouraged me when I joined the PMRGCAuk website. That 7% figure also came from reading our website. Twice I had to increase the pred because there was a flare up (beyond the rheumy's reducing schedule of 15% monthly)) and then come down slowly. So far so good! Despite asking various GP's at my practice, I was never able to get back to the specialist (cost cutting I'm sure) so have been very fortunate, so far. Eighteen months ago I was so full of despair, now I'm so much more cheerful about the future. So keep on and hopefully things will go right for us all.

    Triker .

  • Triker

    It's brilliant how well you have done to get down to 3mgs after just 18 months. Don't ignore those aching shoulders at this low dose though - it was at 3mgs that I had a major flare and had to increase back to 10mgs. When I returned back down to 5mgs my rheumy kept me there for many months before further reducing. I then did the reduction in 0.5 stages, tapering to each new dose over about 7 weeks and then staying at each new dose for another few weeks - painfully slow, I know, but it worked and I reached the end of my PMR and GCA journey during the summer - fingers crossed it stays that way!

    Yes, I lost a few teeth along the way as well - now have half a dozen very expensive crowns!

    Good luck with the bone density results (when you get them) and good luck with your future reductions.

    PS If you had raised blood test markers at the outset, I do hope they are being repeated prior to your reductions, especially as you say you have aching shoulders still.

  • Many thanks Celtic for your kind advice, which I shall carefully check against ever changing symptoms. Yes, I appreciate from past experience how quickly aches and pains return, so fingers crossed. One great benefit of our PMRGCAuk blog is that others who have experienced similar results are kind enough to advise us accordingly. That really helps,

    Many thanks again,

    Triker

  • Triker Thanks. My experience more or less mirrors yours. About 14 months ago I developed what I now know to be PMR. The diagnosis took two months, which was no-one's fault as I was convinced that the symptoms were the result of manually loading onto a trailer, and then unloading, about 500 small bales of hay. Once diagnosed, I was prescribed 15 mg daily. The effect was nearly miraculous. The consultant recommended a fortnightly reduction of 1 mg per day. My GP thought that reducing every four weeks was a better approach. I decided to accept my GP's advice as I have great confidence in her. I have had two flares, which we have managed by an immediate increase in the daily dose for two days, followed by 1 mg reduction every two days until I reached the pre flare level. I also had a five day headache, which again was cleared by a short term increase in the daily dose. I am now on 2 mg per day; and on Friday will reduce to 1 mg daily for four weeks. If all goes well, the plan is that I will then reduce to 1 mg every other day. I cannot praise my GP too much. I have not seen her for about 12 months as we have found that we can adequately discuss progress and the next steps by telephone. Her starting point for each conversation is that I understand the state of my body better than she could hope to. I realise that I have been very fortunate in that my recovery so far has been almost trouble free. Of course, only time will tell if my text book experience continues. Meanwhile, I hesitate to offer advice to anyone as it is clear from the reports of others that there may be no such thing as a typical case. If I had to commend anything it would be reduce your daily dose more slowly rather than more quickly and don't be too despondent if there is some resurgence of the symptoms. Patience is a virtue and it may pay to hang on for a few days before changing anything.

  • Hi finniesp,

    you have got it precisely - we are all different in our reactions to PMR/GCA and our bodies abilities to cope with the often recommended reductions in prednisolone % drops.

    Each one of us, whether we suffer from PMR or GCA or both need to be evaluated personally regarding our own particular needs. It makes me feel so despairing that, still, so many GPs and so called Specialists stick to the 'one size fits all' regime of treatment for these very unstable illnesses. I have come to the conclusion that doctors must learn to listen precisely to what their patients are telling them, and also research the latest findings regarding these illnesses.

    Do we want to spend, perhaps, years on steroids? NO! Then we must go slowly. Any increase in symptoms should indicate - DON'T DROP NOW. Wait until you feel OK. That means no pain or stiffness for at least a month. Then make the smallest drop possible below 20mg.

    As the flares seem to happen on the lower doses, I think it is wise to make the drops there more slowly as, below 10mg the side effects are minimal, and once below 7.5mg and below there are very few 'nasties' .

    To date, 21st November, I have been on 10mg for 3 weeks following a viral illness which lasted 6 weeks during which I was on 8mg. My symptoms returned with a vengence during the infection. After 3 weeks back on 10mg, I am beginning to feel well again and my energy levels are decidedly on the 'up'.

    To tell the truth, I am very apprehendsive regarding my next visit to my rheumy, but I am not going to rush into a drop to make her happy. NO.

    Whilst I feel able to offer advice to others on our Site, I am very greatful for all the experiences and advice offered by other members. We are all on a difficult journey and I have learned so much.

    Thankyou all so much. Pats.

You may also like...