Recent diagnosis

Hi

Was diagnosed with PMR & GCA in November 2016.Just thought it was flu but after 4 weeks getting weaker & weaker I went to doctors. Diagnosed immediately & after 30mg prednisoneI felt great.Then he said decrease to 20 mg in a week & after a month to 15 mg.

I feel back to square one since on 20mg wish I had seen this site before IAs it looks as iit's too big a decrease.Am in the Canaries (thought sun would help) .So what can I increase to safely it's been 9 days on 20mg & still feel awful. Thanks for this great forum.......don't feel so lonely

5 Replies

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  • That does sounds like a reduction too far. I suggest you try 25mg and if you are comfortable on that dose, then stay there for a couple of weeks. If not then you may need to go back to the start, frustrating as it sounds, and begin a much slower taper when you have stabilized.

    One thing NOT to do is to go rushing around trying to catch up with all the undone chores. Pred is only helping by reducing the symptoms of this thing we call PMR. It isn't a cure and you are still ill.

    Maybe if you are in the Canaries (lucky you) maybe you haven't got that many chores to do!

  • That is a silly way to go about things! I wonder if they have ever tried it themselves!

    As polkadotcom says - you do need to go up a bit, even maybe need to start over again. It is difficult to say though whether the discomfort is as much steroid withdrawal (some people are as sensitive as that to that big a change after only a week) or are you actually doing too much? Which island are you on? My memories of the Canary Islands is of a lot of hills to walk up in some places. And when did you go relative to the reduction? Travelling is stressful and can leave you feeling pretty washed out - add it all together...

    I'm assuming you have plenty of pred?

  • If your doctor thinks it is GCA then your 30 g was a little low. You should be on the starting dose for at least 4 weeks to allow the meds to get inflammation under control. Did blood tests show raised inflammatory markers? You also should be under a rheumatologist if GCA is suspected.

  • Esr not too raised & head pain subsided after 1 week of 30mg but must admit was surprised he didn't put me on 60mg fo GCA.I had it 17 years ago biopsy confirmation on 60mg then............had almost forgotten as no PMR then.Do you think II should increase don't really want to.Am still so angry with my gp for decreasing 30-20 in a month.HHopefully after a month in the sun I will feel better & calmer don't want to loose him as a doctor after all he got the diagnosis immediately. Oh well on the bright side a day on the beach......25C ....its not all bad.Thanks for this great forum.

  • There is a trend to using as low a dose as possible - and keeping the high doses for patients who already are showing visual symptoms. If 30mg reduced the symptoms you are probably OK as 40-60mg is the usual starting range. However - if GPs are going to do this I do wish they'd look the protocols up, they are easy enough to find! You just DONT reduce that quickly because it probably won't work. There is a good enough reason for rheumies feeling all query GCA cases should be referred as emergencies.

    I know you don't WANT to go back and start over again - but if you had/have head pain you would probably be better to do so. Sunshine may help with the PMR part by improving blood flow in the muscles - but GCA is a very different matter and it is the inflammation that must be reduced to protect your sight and the sun and warmth won't reliably do that.

    PS - have some reading, and show your GP when you get home, it is aimed at him and his colleagues to help them do a better job:

    rcpe.ac.uk/sites/default/fi...

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