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Can you fight the Rheumy?

Posted , 9 users are following.

paul45653
paul45653

Some recent posts touched on areas very close to my concerns about GP's and Rheumy's attitude towards their patients when confronted with good data obtained from an outside source. I have become spring loaded when it comes time for a checkup with my Rheumy, knowing he is going to reject my ideas on the treatment plan and insist on schedules and meds that do not really fit.

On the 16th this month my checkup was started with a young female  Rheumy doing the leg work of collecting current info from me and listening to my current condition and dosage. I related that due to old symptoms coming back when getting down to 8mg, I had reverted to 10mg. Then after that info had been relayed to my regular Rheumy he came in and began a systematic lecture about the dangers of being on a 10mg or higher dosage for very long. First was the bone density factor, then the osteoporosis tendency and finally the danger of being turned down or delayed for major surgery. And to make it all worse he talked me into a 10mg/week dose of Methotrexate, with 1mg of folic acid/day for bone strength, and a bone scan yet to come. Any new med brings new side effects to deal with, and although he is saying that I won't see any effects at that low dosage, he is not me.I am already taking Vit D and calcium. I did not want more medications on top of the lot I am into. I remind you that I have only been on pred since middle of May this year and really wanted to stay at 10mg for awhile after having returned to that dosage. I tried wqys of insulting his narrow minded approach but was only reminded that "This is what I do for a living". 

Please repeat the straight story about Methotrexate regards it's ability to control PMR symptoms while trying to reduce the dosage. And what about Osteoporosis as a factor in using pred?

I am tired of being bullied by people in the medical here in US. They really think they are God. There are maybe 350,000 doctors in this country and they all think they are right. "Please dont blind me with the facts".

Thank you all for being there and have a great holiday.

4 likes, 13 replies

13 Replies

  • tina-uk_cwall
    tina-uk_cwall paul45653

    Posted

    Oh paul, I do feel sorry for you. Drs, do they not understand that if we all had own way we wouldn't be on any medication let alone steroids. We all know what the side effects of preds are, hence our dislike of it. But preds lower inflammation and until the PMR burns its self out there's not much we can do. Some Drs in England will recommend a different approach to this condition, but not after 7 months unless the patient was demonstrating a problem with them, eg allergy. I was still on 10 mgs at 7 months and after I had a flare up after attempting to reduce from 9 to 8 mgs I upped my dosage back up to 10 and I shall stay on this dose for at least 6 weeks or longer if I still display any flare up signs. I'm like you and will resist methotrexate for as long as possible. Can you not get a different clinician. I just hope that my current great clinicians don't turn on me re treatment options. All the very best, christina
  • twigjean
    twigjean paul45653

    Posted

    As I see you are in USA, as I am, it's not to hard to find a new Rhuematologist. I live in a city of about 100,000 and there are 4 rhuematologists here. I'll let the experts here talk about meds. I'm sorry to hear about your experience with Doctors and the stress they have caused you. Please look for a more compassionate one. 
  • cindy63197
    cindy63197 paul45653

    Posted

    I had a doctor like that at first.  First he started me on 10 mg Pred every other day.  When that didn't work, and I told him about studies that show that every other day doesn't work for PMR, he bumped me up to 15 mg which worked, but he wanted me to drop down to 10mg after 2 weeks.  When that didn't work he wanted to try the Methotrexate.  I switched doctors.  My current doctor just has me drop down 1 mg per month, and it's been working.  Now I'm down to 4mg.
  • davidmelville
    davidmelville paul45653

    Posted

    Paul, I'm in the UK and I saw three rhummys in five visits, the first and last being the boss man who on the final visit apologised for his colleagues diagnosis and openly said they had got it wrong and had now moved into other areas! . . .unbelievable!

    he then went onto lecture me on being stuck at 10 and said I must immediately go onto MTX . A few days latter I had paperwork for blood tests and awareness instruction. It fair scarred me. I cancelled all appointments, built in a three month period and got down to 7.5 at considerable pain and discomfort. I eventually caught up with my GP who said I need not do anything I did not want to but advised against fill fall out with the Rhummy in case I did need him down the line.

    I'm glad I've got a sympathetic GP and remain 'scarred' of the Rhummy.

    • erika59785
      erika59785 davidmelville

      Posted

      I would like to add that I also have a sympathetic GP who listens and is open to a slower tapering than he most often prescribed before.  My "rhummy" has not been helpful and insists I should take MTX when going above 10 mg.!!  Same story, and I live in the USA.  This is how lthe Rheumatologists are trained and they go by the book and not lthe patient.....obviously!
    • EileenH
      EileenH erika59785

      Posted

      The thing is ERika, it isn't even by the book. I have read many of the PMR sections of guidelines and textbooks, as well as studies, many of which are from the USA and the international recommendations now are that MTX isn't particularly useful. There were 3 studies using it in PMR - it is basically a drug used in RA - but one study said it made a difference, one said it didn't and one didn't know. Hardly overwhelming evidence supporting its use is it?

      What a lot of people find is that it may help at first but later they have a flare, often a severe one, and only going back to a high dose of pred works to control it. Would it have happened had they been on a slightly higher pred dose? The studies are often only over a couple of years max - almost certainly not long enough in PMR to really draw conclusions for the majority of patients.

    • davidmelville
      davidmelville EileenH

      Posted

      I think it us incredible scary! I literally mean that . . . why? If I had been an obedient, non querying patient where would I be and more importantly what would my oath gave been.

      i can unequivocally say that the Doc and I would have worked it out and I could have had a much better pathway. Would I have been off Prednisolone? Not sure on that one but I think I would have been lower with a better quality of life.

      What went wrong? For me it was novice rhummys they truly screwed me up.

      i thank God quite literally that thus sure has been there. The information and case histories are invaluable, the advice and experience is 'quality' of life saving.

      A big thanks to all who care to share and make this site a premier resource.

    • davidmelville
      davidmelville

      Posted

      sorry guys it's " WHAT WOULD MY PATH HAVE BEEN."
    • davidmelville
      davidmelville

      Posted

      oh and by the way . . . I hate predictive text!

      its a shame we can't access our messages after publication to repair those bloomers.

    • EileenH
      EileenH davidmelville

      Posted

      A limited edit facility has been asked for - there are problems in allowing people to go back and change what they wrote in a discussion that got people a bit heated for example! This stupid small box doesn't help - and it is not always easy to click and drag the miniscule arrow at the bottom right to enlarge it. I have very good mouse skills but I could not persuade it to stay enlarged earlier on today. 

      And yes - predictive text is an invention of the devil! I have an Italian mobile phone, switching the pt off is a pain - and predictions by the Italian version for English are particularly strange...

  • EileenH
    EileenH paul45653

    Posted

    My response to those sort of "concerns" is that many people live on 10mg of pred for life. i have been on above 10mg for most of the last 5 years - my bone density is much the same as it was originally. I have had atrial fibrillation and hypertension diagnosed - almost certainly due to the autoimmune part of the PMR, not the pred since they were there post PMR starting and long before I took pred. 

    I have to live NOW - it will do me no good reducing pred to a level that no longer controls the symptoms leaving me immobile to avoid the possibility of a hip fracture in 10 or 15 years time. Immobility itself is a major risk factor for osrteoporosis. Luckily, both the local rheumy and my GP are of the same opinion. And if you are monitored properly then a dexascan identifies the risk of osteoporosis and you can then take medication to reverse the loss of bone density.

    You need a better rheumy - because although yours may do this for a living he isn't adhering to international guidelines for the management of PMR. Methotrexate is no longer recommended a a "steroid sparer", it doesn't work reliably and adds in another level of side effects. He is not correct in saying there are no side effects at that level - there may be. 

    If you take the paper you get with the final link in the first post of this thread:

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

    "Our approach to the diagnosis and management..."  by Quick and Kirwan, to your GP might s/he be willing to manage you? In the UK and most of Europe GPs are perfectly capable and generally happy to do the job. The paper is by experts and aimed at GPs to aid them in their job. Your current rheumy could do with reading it too - but he sounds a bit too arrogant.

    Good luck.

    • paul45653
      paul45653 EileenH

      Posted

      Thanks to Christina, twig jean, Cindy, davidmelville, Erika, and Eileen.

      I don't think this Rheumy is ready to accept anything besides his own ideas. I am choking on the details about Methotrexate that I have just read. I took the first weeks dose and regret it. That's the last, and for him as well. I may take advantage of the bone scan order. I intend to adhere to the much accepted dosage reduction schedule and will be on 10mg for a good while.

  • misdiagnose
    misdiagnose paul45653

    Posted

    When doctors are out of their depth, as they so often are with auto-immune illnesses, if they suggest something dangerous their patients either get another doctor or else take responsibility for their own treatment. When patients are forced into taking responsibility for their own treatment, this discharges the doctor from any responsibility for their health care and therefore avoids a potential lawsuit if the patient becomes very unwell. Ask for a recognised treatment plan in writing and record your appointments.
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