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Average Timing for Commencing Reducing Pred (UK)

Posted , 7 users are following.

jones10939
jones10939

Husband, PMR and GCA - assessed over 3 days in hospital and discharged on 40mgPred pd.

Has been for 6weeks but problems in that assessing Rh.Consultant has died following accident, consequently cases are reallocated and thre are follow-up delays.

We realise that everyone is different but are wondering when people on average commence reduction of pred.

GP appt. made for next week and she does seem to be well read on PMR and had bloods sent in when he first saw her as she suspected PMR and the results next day set him straight in to Rapid Assessment Unit.

0 likes, 9 replies

9 Replies

  • EileenH
    EileenH jones10939

    Posted

    I assume he was under Dr Kim in North Wales? What a shock - and absolute tragedy for everyone.

    Usually they recommend staying at the starting dose for a month - providing the symptoms have reduced and are stable that is. If the GCA symptoms haven't improved you may need more not less. If the blood markers applied (ESR and CRP) then they should be falling noticeably even if they haven't reached normal range yet.

    Do I understand you to say he's been on 40mg for 6 weeks? If he is stable then there is no reason not to try a reduction. Some doctors suggest 10mg at a time but many say 5mg - top experts in tapering pred dose say no reduction should be greater than approx. 10% of the current dose. This paper might help:

    http://www.rcpe.ac.uk/sites/default/files/quick.pdf

    It was written to help GPs manage their PMR and GCA patients so is aimed at your GP and her like.

    Are you also on the HealthUnlocked forum (sorry, I should recognise you if you are but amongst hundreds it gets foggy!). If so, we have someone who was also under Dr Kim for GCA and she would know how she liked to reduce her GCA patients. You can't really be left in limbo for months - and it could be since it is summer and they are generally short of rheumatologists anyway.

    • jones10939
      jones10939 EileenH

      Posted

      Thanks Eileen - I was hoping for something from you.
  • jones10939
    jones10939

    Posted

    Should have added that bloods weree to be taken at 4 wks and he was to phone Dr Kim re results; however he was told that she wasn't"in work in th Maelor at that time" checking back re reports she would actually have been a patient in Stoke. Then of course matters became complicated during the following two weeks.

    It does seem as though the pred is raising his blood glucose levels so he's getting impatient. Very fortunate to get a GP appt next week!

    • EileenH
      EileenH jones10939

      Posted

      Have you persuaded him to cut carbs further? Or is he insulin dependent? Which doesn't rule low carb out - just has to be managed well.

    • jones10939
      jones10939 EileenH

      Posted

      Attempting to cut carbs, particularly his breakfast cereal! H saw the Diabees Nurse in the local Practice a couple of days ago assurgery had  phoned with the appointment following Hb1Ac results.

      The nurse (I 'm assuming she's a nurse) took a finger prick test also and although GP had said they would supply monitoring kit if required he urse said she would see him again in 3 weeks and then think about supplying a kit.

      I'm not happy with this as I would prefer to be able to see what effect the meals which I am cooking are having since I cook from scratch - no bought sauces etc. I've just tried a 50/50 wholmeal bread today since he's always said he wans white bread and we had this with spinach soup this evening - went down OK.

    • Michdonn
      Michdonn jones10939

      Posted

      Jones, I been a type 2 Diabetic for 56 years. My wife and I both loved bread, she was making most of our bread up until I contacted PMR. We now eat no bread and have stopped eating all grains. I had a difficult time, gained weight and Blood Glucose reading were too high. Changed diet, doing more exercise and once again have the A1C back in range, lost all the weight gain while still on 7 mg of Prednisone. Thinking positive with a smile. ☺️
    • EileenH
      EileenH jones10939

      Posted

      Hehe - yes I have a white bread person in the house too!!! If it were me I'd get a message to the doctor saying that yes, you would like a monitoring kit and not have to wait 3 weeks. 

      Isn't your husband a bacon and egg person? Or porridge maybe? Being told to not eat cereal would have been heaven for me!!!! 

    • jones10939
      jones10939 EileenH

      Posted

      We managed to book an appointment with GP for Weds because of the potential delay in seeing the Rh. Consultant so he'll ask for blood glucose monitoring kit then.

      Breakfast is just cereal unless away on holiday - unfortunately he gets up later than I do and I've usually gone to the gym, he's just said that porridge needs plenty of sweetening (he's not keen on porridge).

      Awkward++

    • EileenH
      EileenH jones10939

      Posted

      Men!!!! 'tis the sweetening that is the problem...

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