1. Community
  2. Bones, joints and muscles
  3. Polymyalgia Rheumatica and GCA

Difficulty reducing at higher doses - I'm ready to try reducing Pred again

Posted , 5 users are following.

jean05221
jean05221

After 4 weeks back up to 60mg, I feel so much better and my pain has almost g and I'm waiting forone. I saw a Urologist today who ,s pretty sure that MTX WAS responsible for eGFR crash and Kidney pain I experienced before rheumy temporarily stopped it. A week later my eGFR had risen 10 points.

All bloods (except kidney ones) are now normal or near normal and I'm waiting for rheumy to contact me with instructions,

I've asked him if I can try reducing again WITHOUT the MTX. Urologist has asked me NOT to take it whilst investigations are carried out next week as he feels there's something causing haematuria at the levels I have in my samples. Haematuria also lowers eGFR significantly. So I feel I've been given an opportunity to bargain more effectively with rheumy.

Rheumy hasn't replied yet to my requests - he went off on a mission to consult colleagues and consider other condition with similar symptoms to GCA.

I know I have GCA - it just doesn't fit his idea of what it says in the books. he lost a chunk of my trust at our last appt when he suggested that I should consider that I was making myself anxious, therefore the symptoms could possibly NOT be GCA. I have considered it - properly ( I'm a qualified Psychodynamic Councellor) and I feel betrayed that after all I've been through with him as a caring & helpful rheumy, he destroys it all with this careless and ill thought out, throw away comment.

My thoughts on reducing from 60mg would be to try in 5mg drops for a month at a time and providing I feel well and the symptoms are being managed, move down another 5mg. Rheumy suggested 10mg last time & it was too quick for me.

Do I reduce to the next level in one go or would I introduce the new dose gradually like in the lower doses?

Has anyone else on the Forum experienced difficulty reducing at the higher doses?

1 like, 10 replies

10 Replies

  • Oregonjohn-UK
    Oregonjohn-UK jean05221

    Posted

    Jean - I would stick to 5 mg it's only just under the 10% mark as 10 mg may be a bit too much.
    • jean05221
      jean05221 Oregonjohn-UK

      Posted

      Thanks OJ for your advice. You're right about 10mg being too much - that's what rheumy asked me to do - taper by 10mg every 4 weeksall the way down to 30. I think that advice is printed in all the leading med articles. Rheumy says it's his fault it "failed". 

      He'll be contacting me in a couple of days to plan the way forward and I'm doing my own bit of thinking and finding out in preparation

      PS = hope you don,t mind me calling you OJ

  • tina-uk_cwall
    tina-uk_cwall jean05221

    Posted

    Hello Jean your recent flare has made you anxious regarding resuming reducing. I do not have GCA, only PMR and after a flare in December last year I have reduced very slowly and by .5 pred reduction. Having a flare knocks your confidence and so I share 100% your anxiousness. I agree with oregonjohn reduce by 5 mgs and stay on each dose until you feel really well. I stay on each dose for 6 weeks.

    all the best, christina 

    • jean05221
      jean05221 tina-uk_cwall

      Posted

      Thanks Christina -You and OJ make sense. Staying on each dose until feeling well appears to be really important.

      I'm hoping that rheumy won't try to hurry it a bit more than that because i am becoming de-conditioned with prolonged 60mg (since last July - apart from 3 months trying to come down.)

      He says we don't have much time before muscle damage becomes irreversible.

      I am exercising very "modestly" with a rehab specialist for precisely 9 minutes every day and am about to begin chair Pilates (warm-up only to begin with) to keep the affected muscles moving & hopefully recover as I taper down.

      I'll keep posting!

      All the best to you too

    • tina-uk_cwall
      tina-uk_cwall jean05221

      Posted

      Jean, I do feel sorry for you as you sound as if you're stuck between a rock and a hard plate. So no wonder you are anxious.

      it is great that you are exercising though, even modest exercise is great! Weight bearing exercises are the best for our joints and muscles, like walking, so if you can fit in a little walk each day that will help. Unfortunately swimming and bike riding are not good weight bearing forms of exercise but help tremendously with our cardiovascular system. Do let us know how you get on. All the best, christina 

    • jean05221
      jean05221 tina-uk_cwall

      Posted

      Thanks again Christina - I appreciate your comments & support. Sometimes it's easy to feel isolated when you have an illness other than the "take the pills and you'll soon be better" kind. This is a great forum!

       

  • EileenH
    EileenH jean05221

    Posted

    The 10mg drops are normal - the mistake he made originally was probably not waiting for all symptoms to resolve first.However, lots of people find the change in dose difficult even at the high doses. Even if he does say 10mg again you could try in 5mg steps every 2 weeks - same as 10mg every month but a bit gentler on the body.

    If you have lost faith in this rheumy you need another one or have a very frank discussion with this one. There is NO reliable evidence that MTX works effectively to reduce pred  and it is now being discouraged in recent articles and guidelines. I think I said before a new trial is underway using toxcilizumab alongside pred for GCA and the aim is to see if it will help reduce pred faster - you cannot omit pred from the GCA story until a reliable alternative is found, it simply isn't ethical.

    It's the first time I've heard of irreversible muscle damage but no doubt it is possible. I had muscle wasting with Medrol but not with prednisolone or prednisone - maybe trying a different corticosteroid would help as well as the physio?

    • jean05221
      jean05221 EileenH

      Posted

      Thanks for the tip reducing Pred by 5mgs every 2 weeks. 

      I've been "

      off" MTX for 4 weeks now as I had pinpointed it as the culprit in the possible kidney scenario.

      Just to complicate matters, I saw consultant urologist yesterday and he says there is a problem - high blevels of haematuria are probably due to leakage from somewhere. CT Scan next Wednesday & Cystoscopy to follow.

      However, he's asked me NOT to take the MTX on the next drop down! and will recommend that in his report when all tests are complete.

      I'm waiting for rheumy to contact me re the way forward. I'll send you a PM later today around that. 

      Thanks, as ever, for your sound advice.

      Is it possible to change cortisoids when Pred has already quietened everything down. Will a different one cause a blip before settling the symptoms again?

       

    • EileenH
      EileenH jean05221

      Posted

      Yes - that is the basis I was answering on.

      It should be OK - I went from prednisolone where I was fine to methyl prednisolone which caused me side effects but then went to prednisone where I have been fine too. There are others which last for shorter times - that means more than one dose per day but they do exactly the same thing.

Back to top

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.