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Cant cope with more than 1/2 mg drop

Posted , 5 users are following.

jennissw
jennissw

Hi all...sorry I dont contribute much... do look in and often people far wiser than me with PMR have already given great feedbackor a question I came to ask has already been asked and answered.

As some of you know, my rheumatologist is Dr Quick who co-wrote and co-research the Bristol paper. I am in Hertfordshire so felt lucky she has a placement as the consultant here.

My problem is this.

I struggled with all my drops and so have only been able to do 1/2mg at a time following Eileen’s regime. However, once I was at 12.5 Dr Quick told me to do 12.5 one day and 10mg the next. This would mean I could continue on the gastro resistant, coated tablets.

 

Well I have tried for 2.5 weeks and the pain and stiffness are just to difficult…not to mention the return of chronic fatigue and a low grade temp.

 

My appointment with her is not until September but I managed to speak on the telephone with her. She said to try and continue for a while and ordered a blood test. Thing is, if I have the white tablets they give me bad stomach pains (cant take stomach meds) but if I eat a massive breakfast with porridge and yoghurt and rice crispies I seem to buffer them okay.

So I feel I should try ½ mg a day…say 12.5 one day and 11.5 the next….or should I go back to 12.5 a day for a week or something and then try?

Dr Quick said perhaps This questions the diagnosis of PMR and I may need a pet scan

Anyone else had one of those?

My thinking is I am just struggling to reduce.

 

 

 

 

0 likes, 18 replies

18 Replies

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  • jennissw
    jennissw

    Posted

    PS anyone have a problem if the go back to fix a typo? For me it goes into overtpe mode.

     

  • EileenH
    EileenH jennissw

    Posted

    Overtype - have you pressed insert on your keyboard by mistake? What annoys me is the lack of an edit facility once you have posted!

    Have you tried using my method but with a 2.5mg drop? 

    Take 10mg for one day, 12.5 for 6

    10mg for 1 day, 12.5 for 5

    and so on. That will smooth the drop far more than going straight to alternate days. If you struggled with 1/2mg you won't manage 1.25mg will you!

    It doesn't really put a questionmark against PMR yet - it puts a questionmark against the size of the reduction for you. Some people are just very sensitive.

    Nothing wrong with doing a PET scan - it might confirm a PMR-type vasculitis! In fact, personally, I think it would be nice if we were all offered one! But that is just in my dreams.

    Slow down that reduction again...

  • jennissw
    jennissw

    Posted

    Thanks. I thought the same because I have seen so many struggle with more than 1mg on this and the face book page. (have tried to get onto that other forum and it keeps showing page errors)

    However, I wont refuse the scan. I think she is worried I may have vasculitis. I also think its about withdrawal. I will go back to 12.5 till comfortable and then try your method as its worked before although i onoy went down by 1/2mg those times. 

    • EileenH
      EileenH jennissw

      Posted

      It's being worked on - has been for months. Try during the week, it's better. Use the back arrow at the top left of the screen and just keep trying but not too quickly or it will have a paddy. Be patient!

      You HAVE got a vasculitis - PMR is now accepted by the experts to be a vasculitis, similar to GCA (they knew it was related) but almost certainly of the microcirculation (the very small blood vessels). She's a few years behind...

  • christine26681
    christine26681 jennissw

    Posted

    Hi jennissw,

    2.5 mg does seem to be too big a drop to 10 mg. I also get withdrawal pain if I drop more than 1/2 at a time. I am surprised Dr Quick is questioning the diagnosis on the basis of return of symptoms following a big drop as surely you must have responded well to 15 or 20 mg initially?

    If you take 10 mg coated ones and then only 2 uncoated with yoghourt and cereal then hopefully your stomach will be O K.

    I hope you don't mind my asking but I am in Hertfordshire too and am struggling to find a good rheumatologist. Where is Dr Quick based and do you have her full name and contact details please? Thanks.

  • jennissw
    jennissw

    Posted

    Thanks so much for confirming that its pretty common to have pain at that drop.

    She is based in St. Albans and Watford

    Eileen thanks to you too...always so helpful

     

    • christine26681
      christine26681 jennissw

      Posted

      Thanks! That is local for me. I have spent ages searching for her contact details and nothing comes up. She is not listed on the website of either hospital. If you know her first name that would really help (Googling 'quick' is a problem in itself!). If you have any more details I would be so grateful. Thanks
    • EileenH
      EileenH christine26681

      Posted

      Her initial is V - no idea what her name is. She may be only a senior reg (or whatever they are called now) and not yet a consultant so not listed.
    • christine26681
      christine26681 EileenH

      Posted

      Ah - that's probably why she isn't listed at either of the hospitals jennissw mentioned. I am now thinking that it would be difficult to be referred to a registrar rather than a consultant.
    • mrsmop
      mrsmop christine26681

      Posted

      I have discovered that she is called Vanessa and is a Specialist Registrar, or was in 2012.
    • mrsmop
      mrsmop christine26681

      Posted

      Dr Vanessa Quick, Specialty Registrar, Rheumatology 

      Centre, University Hospitals Bristol

      As I said, this was dated 2012

    • christine26681
      christine26681 mrsmop

      Posted

      Thanks. It's useful for an easier search to know her first name
  • jennissw
    jennissw

    Posted

    She is new here...a few months only. Even the switch board did not have her name and still had the old consultant. She is now a consultant in this new post.

    She is young...mayne mid to late thirties. very atrractive and passionate about her work and has a nice way about her. My friend who had pmr a year befoe me, got better and relapsed is seeing her and she is very thorough with all the investigations and at this stage in her career very enthusiastic...give it 10 more years in the nhs cheesygrin. Below is some text Icant edit or get back to...ignore. I meant to say Christine your GP may fefer you to her...her secretary is at Watford...ask for the secretary for rheumatology and she will explain who she is and how she is new etc. 

    Where are you based? I am in St. Albans 

    Your GP could fefer you

    • christine26681
      christine26681 jennissw

      Posted

      Hi Jenn,

      I have now spoken to the rheumatology secretary at Watford. She said it would normally be a 16 week wait but less if my GP marks it as urgent so I don't have a long break in treatment. Thanks again for your help x

    • EileenH
      EileenH christine26681

      Posted

      It is possible for the GP to request a specific person - he should mention the name.
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