Good visit to rheumatologist

Hi just thought I'd share. . Diagnosed 5 weeks ago and put on 20mg which was amazingly good overnight pains dissappeared.. got quickly down to 15 then 12.5 and have been on 10 for last 3 days and feeling so far so good. Went privately and so had Bone scan immediately got results today and he said my bones are "very very good" he repeated that a few times. I guess it is because I was extremely active prior to being hit with PMR. He advised to stay on 10 for a while before tapering again but prescribed me with the previously allusive 1mg dose. I have given up fast running and spin classes but other than that am feeling well enough for pilates body pump walking cycling swimming and slower running...finding that actually I enjoy slower running much more...friendlier at the back! He also said not to take the A A as it was a drug and just to take vitamin d and calcium to keep bones good in winter. Feeling better than I have for months and keen to stay that way....half evenbooked a halfmarathon in January in canary islands....will just plod get some vit d and really enjoy it without looking at a watch. Have been through some tough times with my husbands cancer and not out of the woods with that as yet... more surgery once current infection has dried up....so great to have some good news for a change x Has anyone any advice or guidelines on how long I should stay on 10? He suggested a month....would appreciate your opinions thanx

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  • Hi i was Diagnosed in march and put on 20mg thank fully i respond to Pred like you hyper really house never looked so good lol

    i reduced to 10 mg by end of april and was good down to 9mg by july them had a fall took a few days to realise that i was having a flare up so back to 10mg reduced to 9 again beginning of this week and so far so good :)

    so was on 10 for 3mts before i felt confident to try lower so i am sure that you will be advise by the lovely people here to stay on 10 for a while

    I was also told to take AA but my dex scan was good so i took my self of them !

    reading though the site you can only take them for a few years and should only take them if you need them !!!

    you are also doing a lot of exercise the one thing i took from this site and Kates book

    is be good to your self

    KayXX

  • Thanx Kathy. Sorry to hear of your set back but it is good to hear that you haven't felt the need to go up higher than 10 again. I have always been a little hyper and exercise makes me buzz (can't get same kick from housework sadly)the PMR robbed me of that and although I still did it, it was a drudge....just want to do everything possible to stay feeling this good. Best of luck with your current taper.

  • What is AA, I don't know what that is. I am from New York City, USA. Thank you

  • Aledroninc acid tablets they are to replace calcium lost from taking pred

  • I am glad things are going so well. Pred really is a miracle drug after all the pain. The Bristol Group recommendation is six weeks on 15mg then six weeks on 12.5mg and then one year on 10mg. It is supposedly more difficult reducing under 10mg but I think it probably varies from person to person. At around 7.5mg the body's own adrenal glands have to start working again while the steroids have been doing their work for them at the higher doses, so they have been having a little sleep. I just take pred and vit D/calcium supplements. My GP was raving about my bone density too!! I do hope things go well with your husband, stress is loved by PMR. The Canary Islands sound lovely in January.

  • You are right I get carried away and must keep myself as strong as possible for the stress of more surgery for my husband. Thanx

  • If you can reduce SLOWLY - tiny steps, 0.5mg at a time would be good - there is no reason why you shouldn't continue. BUT bear in mind that you are not aiming for zero necessarily, you are looking for the lowest dose that manages the symptoms as well as they are now. That may be 9mg at present - or it might be under 5mg. There is no way to know until you get there. And it may go back up again at some point. Don't be in denial if it does.

  • Thank you will bear that in mind

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