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GCA - SPLIT DOSE OR NOT - current opinions ??

Posted , 6 users are following.

Rimmy
Rimmy

Hello All 

I am wondering if on a high dose of Pred for GCA of 60mg if it is OK to split my Pred dose at all into morning and mid-late afternoon amounts. Unfortunately I was still getting some GCA symptoms - not severe but I feel not completely resolved after almost a month on 40mg - so with GPs support upping dose to 60mg for now until after i see an opthalmologist at least.

 I coped on 40mg but felt very 'wired' so thought splitting 60mg into say 50mg and later 10mg or 45mg and 15mg might help - but worry it will not have an effective inflammatory result. My GP said he thought it would be fine but I looked through some older posts and I see DorsetLady you mentioned somewhere it wasn't OK to split doses for GCA ??

Thanks 

Rimmy

0 likes, 12 replies

12 Replies

  • EileenH
    EileenH Rimmy

    Posted

    It isn't recommended - but there are people who have done so because they couldn't manage the side effects. I don't see though that 50+10 would be a problem - it could be that the effect is wearing off inside the 24 hours.

    Do bear in mind though that some people don't ever become totally symptom-free whatever dose they are on.

    By the way - DorsetLady is on the other forum!

    • Rimmy
      Rimmy EileenH

      Posted

      Thanks Eileen - of course DL is on the other forum - bit of a 'bad sign' that sometimes I can't even remember WHCH forum I am on rolleyes - but at least I know YOU are on both !

      I appreciate your response 

      Rimmy

  • maid_mariane
    maid_mariane Rimmy

    Posted

    Hi Rimmy

    I don't have gca but from the start I've had retun pains in the afternoon so i split the dose.

    I take my afternoon dose at 3pm and rumi recommends that my afternoon dose be no more than 1/2 of morning dose.

    With you high now i would say 1/3.

    Mariane

  • Anhaga
    Anhaga Rimmy

    Posted

    The reason splitting is not recommended at least at the beginning of treating GCA, is because a very high anti-inflammatory effect is needed.  However as Eileen suggests a minor split may help you get better relief around the clock, especially as you had been managing, more or less, at 40 mg.  Basically your additional 20 mg could be taken at the new time, perhaps?
    • Rimmy
      Rimmy Anhaga

      Posted

      Thanks Anhaga - I appreciate your comments.one of my biggest probs has been gauging adequacy of dose by my symptoms only given no TA biopsy or ultrasound and never a very high ESR & CRP - which were only slightly elevated with my initial diagnosis of PMR. I feel like I have everything 'back to front' but I know lots of others have these confusing aspects too. I have however maintained a 'high degree of suspicion' given possible consequences.

      Best

      Rimmy

       

    • Anhaga
      Anhaga Rimmy

      Posted

      I doubt if there is a single typical PMR or GCA patient on this forum. wink Although we get very irritated with our doctors because they make such fooish (to us) mistakes, in a way we can hardly blame them.  These autoimmune inflammatory disorders really are mysterious.  This is why symptoms are king, especially when it comes to something like vision!
    • Rimmy
      Rimmy Anhaga

      Posted

      Yes well put and I agree totally Anhaga - the combination of personal experience - reading about the diversity of those of others here and elsewhere- the limits and inexactness of medicine and 'science' and its human practitioners and how life generally seems to have its own trajectories seem to add up to most of us just doing the best we can. I am fortunate my youngish and I think interested and smart GP -regards medicine as much as an 'art' as a 'science'. Although I respect the 'scientific method' I think there is clearly (as yet) no 'perfect' way of dealing with PMR/GCA and many other possibly interrelated conditions and diseases in all their 'mysterious' (as you said) manifestations. 

      Rimmy

  • lodgerUK_NE
    lodgerUK_NE Rimmy

    Posted

    Can I ask when diagnosed, how much pred at first, then what reduction and what on now.

    I had GCA for 5 years and then into remission and 6 years down the line, still there.

    I was told never to split the dose with GCA and I was able to handle it better when I sort of got my head around it all.

    • Rimmy
      Rimmy lodgerUK_NE

      Posted

      Hi

      Because I was originally diagnosed 'only' with 'PMR' in January this year and my GP was relatively inexperienced with this - he started me on 3 days of 50 mg tapering then to 3 days of 40 mg et.c down to 25 in about a month ! Although I found out this was rather unusual later on actually for a couple of months it all seemed to be working quite well in the PMR dept at least - until I got to about 18mg.

      But then to confuse matters much of that time I also had fairly bad 'sinus' pain which I ascribed to allergy and told my doctor I was sure it WAS that. But I then had some other 'minor' symptoms which suggested (according to the BSR Clinical Guidelines) that I could have 'uncomplicated GCA' ! - ie without obvious 'vision issues' or major other symptoms like jaw claudication. But I became more suspicious of some niggly temple and head pains and asked the GP myself to up my dose for GCA to the advised 40mg. I sat on that for about a month - the face/sinus pain subsided but then became more worried about some tiny blue 'spots' - very ephemeral that I was getting occasionally in both eyes - which I thought were related to 'floaters'. So again with the GP's agreement I am now on 60 mg  until I have at least seen a visiting (rural/regional areas)ophthalmologist.

      This higher dose is certainly full-on - I feel pretty 'zoomy' but can cope OK if I have lots to do but I have to STOP myself from doing the 'duracell bunny' thing and pace myself as get tired afterwards.

      Thanks and all the best

      Rimmy

       

    • lodgerUK_NE
      lodgerUK_NE Rimmy

      Posted

      I rather think you are not in the UK....but I could be wrong and it is better to be safe than sorry...........

      Yes the Duracell Bunny is a good name for the Highs and Lows and running out of steam.   I promise it does get better.........just learn to listen to your body and and the hard one......pacing yourself.

      Hope your opthamologist visits soon.............

  • iellen32
    iellen32 Rimmy

    Posted

    Hi Rimmy, having GCA there are 4 years and some set backs when my Rheumy goes too fast on taperings, I understand the signs my body gives

    to me.

    I take Pred.

    Everybody is different. For each one of us with the

    same illness the experience is different.

    I do not split the dose I take it - at 3 am and feel fine doing so.

    Wish you are doing fine,

    Take care.

    iellen

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