Another newbie

Hi, have been following this site as soon as my doctor thought I had PMR. Happened just before the August Bank holiday when I couldn't turn over in bed or move my limbs much! Incredibly scary and my husband took me to a private doctor in town as soon as possible on that Saturday. This is where the doctor made the diagnosis. I had never heard of this before. I had sero negative RA for about 8 years and have been in remission for about a good 3 years. Had every scan you can think of and blood tests which didn't show up any big markers. Been on 15 mg of prednisolone, coming down to 10 and 5 alternate days this week. Today the aches and pains have come back, although not as bad as it was. Am seeing Rheumy on Saturday and will let him know where i thought it was manageable, Must admit i probably overdid it when i thought things were going so well!! Will also try and let him know that i don't want to drop in such big dosages. Anyway, have learnt so much from this site. Keep up the good work.

7 Replies

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  • Yes - 1mg at a time is far easier for the body to deal with so do ask for a load of 1mg tablets. Your body will struggle with 10mg one day and 5mg the next - many of us struggle with 10mg one day and 9mg the next!

    Good luck - and REST!!!!!

  • Hi, no wonder you've got your aches and pains back. Going from 10mg to 5mg on alternate days is crazy advice! The recommended reduction is 10%, and you are trying to do a 50% drop. I'm surprised it worked from 15mg to 10mg. Trouble is, it sounds ok in theory, but the doctors don't have to do it in practice.

    As PMRPro says, get some 1mg tablets and reduce by 1mg at a time, in fact, once we get into single figures some of us reduce by 0.5mg a time. As has been said many times, it's not a race to get off Pred, it's a matter of keeping the inflammation under control until it stops being a problem. Take care.

  • Many thanks. You always talk sense.

  • Around twenty per cent of people do not have raised blood markers, which does seem to confuse some doctors. As the others say the reduction suggested does seem rather high and if you are having trouble I should forget the 5mg alternate days and just stick to the 10mg if that seems OK until you see your rheumy. Also you can see how well 10mg works, as below that obviously is not working at the moment.

  • Many thanks.

  • Hi I also had big drops 20-15-10 that was before I had found this site my dr who is very good and informed did say to drop as quickly as I felt comfortable.I was started pred in March.

    I tried 9 mg I'm May but did managed it as I had a lot on and also a fall

    Didn't help trying 9 again next week

    Hope you get sorted quickly 😀

    Kayx

  • Hi have got an appointment with Rheumy Saturday so now the initial stages are over will let him know how I feel and how I should start to taper off. Have taken note of lots of the suggestions here. It really is good to know that you are not alone, especially as most people have never heard of it, me too!!

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