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Rheumatologists letter to GP

Posted , 4 users are following.

Whisper2003
Whisper2003

This was a bit of a surprise as i don't remember what he said being discussed at my appointment! My son came with me and feels the same so maybe not just my 'brain fog'. I was diagnosed by GP in Feb 14 with GCA/PMR with 40 mg pred.Reduced to 9mg by Dec on instructions from GP and Rheumi. He agreed it was PMR in Dec but by then I was suffering from much pain in hips, shoulders etc with raised CRP. The letter states he advised 20 mg for 1 week then back to 10 mg. Appointment with specialist nurse in February by which time I have to decide, apparently, between taking Methotrexate or Luflonomide! I am afraid I ignored his advice (due to heart issue worries) and increased to 10 and then 12 mg. Have split the dose with 10 mg am and 2 mg evening and awaiting new blood test results, hopefully by tomorrow. if I can get CRP down then can I refuse the other drugs that I don't wish to take? Pain has definitely lessened.

2 likes, 16 replies

16 Replies

  • pat38625
    pat38625 Whisper2003

    Posted

    Hi Whisper, you seem to be having a time of it.  I am a newbie undiagnosed PMR until November last year.  I will leave it to the experts in this forum.  Hang on in there someone I am sure will be along soon to answer or discuss your comments.

    Pat

    • pat38625
      pat38625

      Posted

      I am sure your head is melted what the PMR pain and everything else going on.  Conserve what energy you have and be assertive (I know these people can take offence) it's your body and your pain and you should be heard.  Stay strong.  I do hope you get sorted out.  

      Pat

    • Whisper2003
      Whisper2003 pat38625

      Posted

      Thank you Pat. Yes, my head is melted for sure. Why should this be such a fight.We are supposed to be ill and taken care of, it shouldn't be like this!
    • pat38625
      pat38625 Whisper2003

      Posted

      Generally speaking from what I can glean, that there are some consultants and gps do what they think is best for us.  But they are not walking in our shoes, they don't honestly know what the pain is like.  As I said to my gp on a level of 0 to 10 - 10 being the most painful, I would give it 12.  

      They don't realise how tired we get and we are bombarded with information and they drain whatever energy we may have, out of us.  I hope you get sorted, I really feel for you.  I haven't had my first Rheumy appointment yet was sent to Endocrinology last Thursday about PMR, they are referring me to Rheumy.  Started on 20mg of pred 12th December and Consultant in Endo said to reduce it to 15mg but work with my gp and tweak it when necessary.  So after putting a question on here, I got advise, support and I made up my mind to reduce down to 17.5  on Saturday.  Had a few wee pangs of pain in my thighs while driving but nothing to fuss about.  So here's hoping.  You take care and rest easy.

      Pat

    • Whisper2003
      Whisper2003 pat38625

      Posted

      That is so true, if only they could feel the pain! I have been housebound for too long! Driving became impossible.
    • pat38625
      pat38625

      Posted

      Sorry 12th November was when I got diagnosed not December.  I am not being dramatic but I was one step away from a wheelchair.  It took me about 2 and a half hours to do an 8 minute drive to my doctors.  My son had to open my car door and pull the seat belt and me hold it and the he got in the passenger seat and clicked my in.  He doesn't drive.  The toughest and most painful was not being able to turn in the bed or get out or into, but I had to manage even taken a shower was a murder picture.  

      Don't let them bully you.  It's not the first time I have made a complaint about a consultant.  We shouldn't be in pain like this, there is no need for it.  Yes we need to taper gradually and that seems to be the answer.  

  • EileenH
    EileenH Whisper2003

    Posted

    Ah well - I doubt you are the first to have a letter from a consultant that bore no resemblance to what was really said! In fact, I know you aren't - I don't think I was at the consultation my second rheumy described! I'm glad you took your son. 

    20mg and immediately reduce to 10mg doesn't fit any guidelines. Have you tried taking the paper from the Bristol rheumies to your GP? Now you have a PMR diagnosis he might be happy to work on the basis of that:

    It is the  last but one link here:

    https://patient.info/forums/discuss/pmr-gca-and-other-website-addresses-35316

    The final link is also excellent.

    Take your son with you to the GP and tell him you want to discuss this sensibly using those two papers. Methotrexate is no longer advised as a steroid sparer in PMR, there is no reliable evidence it works and has finally been discounted. Leflunomide should be kept for a last resort, not least because although a pilot study looked good the results with other patients aren't as good because they develop side effects or it doesn't make any difference - sensible and slow reduction of pred will work for most people once the inflammation has been brought under control, but 20mg for a week and then down to 10mg won't achieve anything in the long term. Try to get the GP to help you work through the recommendations from the Bristol group - it at least has achieved a flare rate of 1 in 5 as opposed to 3 in 5 using the sort of scheme your rheumy is touting. 

    The blood tests are secondary - the primary criterion is your symptoms. If they are improving at 12mg then I feel that should be continued for at least a month and then reviewed, continued for longer if necessary. But then reduce very slowly, not more than 1mg at a time and spread over a few weeks if necessary.

    • Whisper2003
      Whisper2003 EileenH

      Posted

      Thank you Eileen. My Rheumi says he works with Dasgupta (could be wrong spelling) and I tried to show him the Bristol plan but think he was slightly insulted by that offer! He is a consultant after all! From what I have read on this forum it just seems that my forced reduction has been too fast, not  considering any symptoms at all. That seems to be irrelevant! So frustrated!
    • EileenH
      EileenH Whisper2003

      Posted

      Hehe - yes, I gather that Southend and the former Bristol consultant don't really get on too well! I'm sure I have seen a paper from Dasgupta where he took the methotrexate line back - I'll try and find it and send you the reference.

      Talk to your GP, and take your son with you. That's a good start. 

    • Whisper2003
      Whisper2003 EileenH

      Posted

      Yes, I would but appointments with GP are like gold dust!
    • EileenH
      EileenH Whisper2003

      Posted

      It doesn't matter if it takes 3 weeks - and they can't refuse to never see you. If they do then a complaint to the practice manager is called for.
  • tina-uk_cwall
    tina-uk_cwall Whisper2003

    Posted

    Hello whisper, I'm sorry you seem to be having such a time of it. But have I got this right. You have been treated for GCA/PMR for 11 months and within 11 months you have tapered down from 40 mgs to 9 mgs? If that is right it is no surprise to he that you are in such pain because you have tapered down far yo fast and you are not on enough preds to cover the inflamation. 

    Also, I am not medically trained but to up your preds to 20 mgs for 1 week only then to reduce them back down to 10  mgs will not resolve your problem. You need to be on a higher dose for at least 1 month if not longer, or until all the pain is under control then a little longer for good luck then taper down in smaller amounts and in turn staying on those amounts for longer.

    i am not sure if your heart problems, but I assume you upped the dose to 12 mgs because 10 mgs wasn't having any impact, which doesn't surprise me. But I think you need to be taking the dose all in one and not split the dose 10 mgs and 2 mgs. I think you need to be on this dose for 6 weeks at the very least and then only taper when all your pain has gone.

    now to the issue of the 2 drugs you do not wish to take. Personally I would not want to take these drugs either and I will fight tooth and nail should my consultant attempt to change my medication. Unless there is an underlying clinical reason as to why the medication needs to be changed, all research papers do not recommend methotrexate (never heard of luflonomide) as a drug to use for PMR. According to the PMR Bristol plan  a patient suffering from PMR would still be on 10 mgs of preds in their 15th month yet in less than a year you are already on 9 mgs with your consultant pushing for a change of medication. 

    I would research both PMR and GCA and their treatment plans then at your next appointment ask why they wish to change your meds contrary to the established best practice. Take your son along to and allow him to bat for you. There is currently no evidence that mtx helps with the control of this condition so don't be bullied into taking it. Your pain etc in my opinion is down to poor clinical practice and if I couldn't trust my consultant with that I sure as hell wouldn't trust them putting me on mtx. Be firm and stand up for yourself. Do keep us informed his you fair. Regards, christina  

    • tina-uk_cwall
      tina-uk_cwall

      Posted

      Whisper, I'm sorry but your consultant is lying!!!  If he really worked with dusgupta he would not be dishing out the quick tapering as He has done. His approach to your condition is in total contridtion to PMR Bristol plan and Dr dusguptas research and clinical methodology. Christina
    • Whisper2003
      Whisper2003 tina-uk_cwall

      Posted

      I know that from the contradiction between what he said at my appointment to this damn letter! He is insulted by any suggestion about the Bristol plan. Trouble is, whoever I see doesn't want to listen to little me! Even so, i am not going to be bullied by them.

       

    • tina-uk_cwall
      tina-uk_cwall Whisper2003

      Posted

      Good on you whisper. Treatment plans are supposed to be created in partnership with the patient. Remember we are the consumer now not just a patient of the nhs services. Drs cannot impose their will on patients anymore and patients do not have to receive a treatment just because a Dr says we should, that's why we have to sign consent forms prior to procedures etc. he must have to justify why he believes the other two drugs are better for you and then you must reply that having given the medication options great thought and consideration you have decided to stick with the existing medication. Just because he is a consultant doesn't mean he is a good consultant. This dilemma is clearly a worry to you and as we always say stress and worry are what our condition thrives on, hence we experience more pain etc when we are under pressure. Why not book an appointment with your GP and set them straight on how you feel. Christina 
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