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Will I ever be better????

Posted , 12 users are following.

TERI23
TERI23

I have had PMR for almost 6 years and have all the side effects. weight gain, moon face, bruses all over my arms and legs. Blurded vision and the latest swelling in the legs. I an trying to lower the dose of pred. to 12.5 but because of  the fatigue went back up to 15 today. Dr. said to to 15 then 12.5 then 15 etc for about a week. so thats where I am now. Will this ever end sometimes I think not. I uess I have to try to be possitive but boy it is hard.

4 likes, 21 replies

21 Replies

  • lodgerUK_NE
    lodgerUK_NE TERI23

    Posted

    Teri123

    You wrote 'blurred vision'  have you told your Consultant or GP?.

    Blurred vision is not usual in PMR.  You need to get this checked out, like yesterday,  to see if it is possibly done to GCA, if so you need urgent treatment.   

  • EileenH
    EileenH TERI23

    Posted

    First of all - I can't say from personal experience you will get better and off pred - though you will and there are a few people on the forums still who have stayed around to tell us so! I have had PMR for 10 years, for 5 years without pred. 

    My immediate question though is - have you been on a lower dose? And do you always try to reduce by such large amounts? Many people simply can't manage big steps in reduciton and suffer such bad effects that they have a knee-jerk reaction and go back to a higher dose. 

    Follow this link

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

    and in the replies part you will find a description of the reduction scheme I used to be able to get below 9mg for the first time ever. It has been used by a lot of people who have also managed to reduce with fewer problems and steadily to a much lower dose. Even rheumies are using it.

    The fatigue is part of the PMR and isn't affected by the pred - but we have always said on the forums that you need to rest when you are trying to reduce - clear the decks and cancel anything you can't get out of if you need to. THEN try to reduce.

  • Mrs.Mac-Canada
    Mrs.Mac-Canada TERI23

    Posted

    Hi Terri,

    There are others here that have had PMR for many years but it seems you are still on a high dose?  What is your pred. History? Have you had several flares?  We're you decreasing your dose using the very slow methods discussed on this forum?

    I agree that you should mention your blurred vision to your Dr.  I think it is also a side affect of pred. as there have been discussions on it here on the forum.  I have it sometimes but don't have any of the other symptoms of GCA.  Always best to have anything that might affect your sight checked out.

    Hope you find a little solace in this forum.

    Hugs, Diana🌸

    • TERI23
      TERI23 Mrs.Mac-Canada

      Posted

      I have had the vision checked out and she said it was dry eye. as far as reducing  the pred. I stay on the dose for a month and then go down 21/2 until I reach 10 after that I go down 1mg a month, so the way I have it figured I'll be on pred for at least another year.  Eileen is right you have to rest. Can't wait to get out of work so I can go home and take a nap. Thank you all for your support it is always nice to know you have friends out there who have the same problems as you.

      thanks again all of you.

    • ptolemy
      ptolemy TERI23

      Posted

      Teri, it is a nice plan to get off pred in a year by reducing at 1mg a month when you get to 10mg. You may be lucky and that will work, but don't be disappointed if you have to slow down somewhat.

      Are you saying you have been on pred for 6 years or just had PMR for 6 years.

  • Guest
    Guest TERI23

    Posted

    My rheumy sent me to a new opthamalogist last week because my vision in the left eye was blurred. I (GCA only) was very lucky to have no eye issues when first biopsied. He explained that cataracts are frequently a problem on heavier doses of pred. I am forming a cataract in the left eye only. BUT blindness is a huge factor for New GCA patients...please check it out, Ann11195
  • FlipDover_Aust
    FlipDover_Aust TERI23

    Posted

    I've recently tried to reduce from 15mg to 12.5mg (again) and it was just too much too fast. I went back up to 15mg for a few weeks and now reducing by 1mg every couple of weeks. I am not aiming to get off it, but rather get to/under 8mg which is the 'magic number' according to my Dr (who is REALLY good with PMR) as that dose is where the side effects stop being so much of a problem (eg weight gain etc). Until now I've been reducing 2.5mg eery two weeks so clearly I've reached the point where I have to 'go slow' point for me.
  • snapperblue
    snapperblue TERI23

    Posted

    I sympathize with your frustration!  Although doctors (to generalize) seem to think PMR is no big deal because you just take a little prednisone for a year or so, one long-term study found a third of patients were still on prednisone after 6 years.  So, sadly, you are not alone, in the length of time you have struggled with the balance between controlling the PMR and avoiding the side effects of prednisone.

    Have you found that increasing the prednisone dose actually reduces the fatigue?  The collective wisdom on this forum suggests it does not- prednisone helps the pain and stiffness but not the fatigue.  If that is true, the increased dose may be increasing the side effects without really helping.  I hope things get better soon!

      

    • Mrs_CJ
      Mrs_CJ snapperblue

      Posted

      Hi

      do you happen to have the link to the study you reference...and since we can't post links perhaps some words that would work in Google?

       I have always wondered how long it takes most people to get off Pred for PMR but so far no one has a good reference for this. I am beginning to think there is no stats for this!

    • EileenH
      EileenH Mrs_CJ

      Posted

      I'm not familiar with the study snapperblue mentions but I have seen one with figures of about a quarter are off pred in under 2 years, about half take up to 4-6 years and the rest much longer or are even on pred for life. I kept the reference in a file - but it no longer works. I found it about 6 years ago and several of my references have disappeared behind paywalls since then! It was referred to in a US textbook as well. I was also discussing this with my GP recently, who showed me her German rheumatology textbook where they quoted 5 years as being typical - but I didn't get a chance to read it and their references at the end of the chapter. But that was the figure she remembered - whereas in the UK they keep on about "a couple years" - and THAT is patently wrong!

      The research people I'm involved with don't agree with these figures, saying that most people remain under GP care and are rarely included in such papers as the stats from GP are really quite difficult to access (it can be done and that is what the fuss was about releasing our medical records in the UK but old records aren't digitised). They feel the times are shorter - but all I can say is that, after well over 5 years on 3 different forums, they certainly reflect what I see: a smaller number who are straight through the pred reduction in 2-3 of years, a bulk who take 4 or 5 years and another smaller group who take longer or who end up on pred at a small dose for life. 

      Of course the forums are most likely skewed in their view with a higher rate of people who have more difficult patient journeys who are looking for information - but there are very large numbers who appear in the first year of their diagnosis so they wouldn't know if they are the tough cases - they are just scared of pred or are not being treated properly and beginning to despair.

    • Mrs_CJ
      Mrs_CJ EileenH

      Posted

      Thank you for this information. It's shocking that stats aren't easily available for the duration of PMR patients - it seems like such an obvious thing to do!  When I was initially diagnosed my doctor told me I would be on Pred for a few months.....he could have really used this information.  Too many information gaps which contributes to doctors nagging us to get off Pred too quickly!
    • ptolemy
      ptolemy Mrs_CJ

      Posted

      Mrs CJ I think EileenH has given a very good description of the duration of being on pred. It varies from just under two years to life. It is not short term and your doctor should know that. Perhaps they were trying not to worry you. Remember PMR is not like getting a cold, you never actually get rid of it. How long one is going to be on pred is like asking how long is a piece of string. It varies from person to person. 
    • EileenH
      EileenH ptolemy

      Posted

      Yes, part of it not wanting to upset a patient by telling them there is no fixed end in sight. The doctors often feel a failure because they cannot offer a cure - they really struggle with that in every field of medicine. Maybe they are afraid the patient will appear every week with the sort of questions we deal with in the support groups and forums - and only a few are aware of and support the forums "Don't look things up on the internet - you'll just scare yourself..."

      But it WOULD make life easier for us if they said "We can manage this fairly well until it burns out at some point - but it won't be perfect." We told some rheumies in a video conference that we DON'T feel "back to normal" on pred - they were surprised, and these were good PMR people!

    • ptolemy
      ptolemy EileenH

      Posted

      I met an Australian rheumy recently and he said he loved treating PMR. All he had to do was diagnose it and give someone pred and like magic the symptoms improved and the patient was eternally grateful. He then seemed to think that was it. I suppose from his point of view it is, all he does is continue to offer pred. Perhaps because we mention the magical effect of the initial pred on the symptoms makes doctors think everything is then tickety boo forever after.
    • EileenH
      EileenH ptolemy

      Posted

      Which suggests he doesn't deal with the flares and side effects doesn't it...
    • ptolemy
      ptolemy EileenH

      Posted

      Exactly. Probably gives people pred, waves a magic wand and then sends them off to their GP for more pred. 
    • snapperblue
      snapperblue Mrs_CJ

      Posted

      The study I mentioned is called "Long-term follow-up of polymyalgia rheumatica patients treated with methotrexate and steroids," first author is Cimmino, published in Clin Exp Rheumatol.  They were studying a comparison of those on pred only versus those on pred and methotrexate.  But in the conclusions they say (perhaps with surprise) "PMR is not a benign condition, as often reported, since one third of patients need steroid treatment for more than 6 years."

      I got it- abstract only- on the internet, so Googling it should find it.

    • ptolemy
      ptolemy snapperblue

      Posted

      I remember reading it a while back and thinking thank goodness someone recognises PMR as not being a benign condition. It is a pity more doctors do not realise it. 
    • snapperblue
      snapperblue Mrs_CJ

      Posted

      The actual results were 31% of the 'pred + methotrexate" still on steroid after 6 years and 39.3% of the "pred only" group.  
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