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Contributors' Brief Histories

Posted , 46 users are following.

EmisModerator
EmisModerator

A thread for users to put a precis of their story.

EMIS Moderator

9 likes, 200 replies

200 Replies

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  • DQ73
    DQ73 EmisModerator

    Posted

    I was diagnosed with PMR 2 and a half years ago at the age of 38.  It was very strange the way it happened as my symptoms started just after a holiday in California and I thought I had picked up some weird bug while I was there.   

    Thankfully I found a great GP who is very supportive and as I am younger feels I should be able to get off Pred soon, although I have had 3 attempts to get off and failed everytime. 

    I have had issues with my stomach and the tablets that I take to protect my stomach, previously I've taken Omeprazole, Lansoprazone and am now on Esomeprazole which appears to be working. 

    I am trying to find natural solutions so any help and suggestions would be appreciated.

    Thanks

    • EileenH
      EileenH DQ73

      Posted

      I'm surprised your GP thinks that it will be quicker because you are younger - most experts think the opposite for younger patients! Who diagnosed you? Because if they are confident it is only pred-responsive PMR it would be wonderful if they wrote an anecdotal report or letter to a journal - we have patients in their 50s being told they are "too young" because the old guidelines say "consider in over 55s with...", now it says "over 50s"  and many doctors think that means when you are 49 you can't have it!
    • DQ73
      DQ73 EileenH

      Posted

      Hi Eileen,

      It was my GP who diagnosed me, thankfully he is excellent unlike one of the others in the surgery who diagnosed me with an inner ear infection.

      Do you have any links to the journals as I would be interested to read them and also to advise my GP.

    • MrsO-UK_Surrey
      MrsO-UK_Surrey DQ73

      Posted

      Hello DQ73 - Omeprazole and Lansoprazole caused severe bowel problems for me and were stopped by my rheumatologist.  He reassured me that my stomach would be ok!  I resorted to a 'live' yoghurt each day with my breakfast to line and protect my stomach before taking the steroids and never had any further problems stomach-wise, in spite of a high starting dose of 40mgs.  Another mainstay of my diet was (and still is) a teaspoonful of Manuka honey with my breakfast - it can help the immune system which can take a battering from the steroids, as well as help to protect the esophagus, plus a whole host of other benefits.
    • DQ73
      DQ73 MrsO-UK_Surrey

      Posted

      Thanks MrsO I need something as I have stomach problems but will try the Manuka Honey.
    • willa5
      willa5 EileenH

      Posted

      Hi Eileen, At my last appointment my dr said they are finding the PMR can and does affect younger people, as I had questioned her about if mine was really PMR why I got it at a younger age than the generally stated. She said many autoimmune diseases are inter related and there is just a lot they dont understand. it will be good when more research comes out, who knows how many people are suffering with it, and arent getting diagnosed.
    • EileenH
      EileenH willa5

      Posted

      Hallelujah!!!!!! What hospital are you under? Yet another doc who needs cloning - it must be nearly Christmas biggrin
  • vawils
    vawils EmisModerator

    Posted

    I am a 62 year old male from the US and happy to find this forum which I have already found very informative.  Nothing like this I have found in US.  Until early April I had been very athletically active,  mostly running and biking and was training for another marathon.  Then suddenly almost overnight I was hit with the neck, shoulder, torso and thigh pain and stiffness that everyone else has spoken about.  It is still hard for me to believe that this has come on so suddenly and with a level of pain and stiffness, weakness and fatigue that has stopped me in my tracks so to speak.  I went to my regular doctor who was great and quickly diagnosed PMR based primarily on blood tests and symptoms and put me on prednizone at the beginning of May.  I am still stuggling with proper dosing and level of prednizone.  I started with 15 mg once per day for 1 week and still had night and morning pain and then 10 mg twice a day for 2 weeks which was better.  Saw a rheumatologist last week who wanted me to try taking only one dose in the am - 20 mg.   Struggling with this now since night morning pain is returning.  Rhematologist suggested it was better for body to take a single dose since it may allow the body to better adapt and still produce it's own cortisol.  However, think I may need to go back to split doses.  I am still working but struggling some days for sure but better now that on prenizone (wouldn't be working without it) but have to deal with the  prednizone side effects.  Well know I will have a lot of questions but can learn a lot from other's experiences so will leave it at that for now.  Thanks for being out there!

     

    • MrsO-UK_Surrey
      MrsO-UK_Surrey vawils

      Posted

      Your rheumy is correct in that it is preferable to take the whole steroid dose with breakfast as early in the morning as possible, and that is certainly what I did throughout my years on Prednisolone.  However, a few people have found it helpful to split their dose (three-quarters in the morning and the remaining quarter in the evening), whilst a few have also found it helpful to take at 2am with a small bite to eat.  This is the time when our adrenal glands produce their natural supply of cortisol (steroid) when well.  We always feel sorry for those who are still in employment when suffering from this condition as our bodies need all the rest they can get, particularly in the early days of treatment.  This can also slow down the rate of recovery.  Is it possible for your to have sick leave for a while to give the steroids the best possible chance to get control of the inflammation?  Once you are feeling better, don't reduce in too big steps, for instance 20 to 17.5 is less likely to cause too much withdrawal pain, or worse still a flare.
    • mrs_k
      mrs_k vawils

      Posted

      Hi vawils

      There is another forum you could use as well as this one, and I do mean that, this forum is particularly special and very well administrated.

      On the other forum, there are patients with PMR & GCA from various parts of the USA and you might just find someone near you.  Although knowing how vast the States are it is probably unlikely.

      google 'pmrandgca.forumup' for the link.

    • KarenG3
      KarenG3 vawils

      Posted

      Hi vawils,

      i am 48 yrs old and was diagnosed with PMR in Feb 2014.  I initially started with one 20 mg dose of Pred in the morning but found morning pain intolerable.  I am currently taking 18 mgs of Pred in a split dose (12 mgs @ 5 AM , 6 mgs @ 5PM). In doing so I am able to function at work and in life and the PMR symptoms remain tolerable. Some where on this forum EileenH has provided me with a reduction schedule that I am adhering to faithfully. Hopefully she will read your post, she is very informed on all things PMR smile . In my attempt to reduce my prednisone to quickly I experienced a 'flare up' that immobilized me in the course of 24 hrs! I can empathize with the loss of your active lifestyle ... PMR has interrupted many of the activities I previously enjoyed. However, we must honour this condition and treat it with the respect it will demand!  Fortunately for us, Pred makes it manageable and we can relish the knowledge that it will eventually leave us alone!  Take care, K

    • vawils
      vawils EileenH

      Posted

      Thanks Eileen - I would like to see your reduction scheme at least for future reference.  I think I saw where you had previously posted it but couldn't locate it quickly.  One one brief try at reduction, too quick/too much reduction lasted less than 2 days.  Thanks for your help and feedback.

       

    • EileenH
      EileenH vawils

      Posted

      A group of us worked out reduction schemes individually that have allowed us to reduce far further than ever before but they are all basically the same - and they were based on a scheme a Swedish gentleman worked out when he simply couldn't get below 3mg without pain. Img at that level is 33%, 1/2mg is 17% - way above the 10% that has been recommended for years. So he used a table to see the daily doses and took the new dose on one day, old dose for a few days and then proceeded by repeating that and then reducing the number of days of old dose - until he got to everyday new dose. It worked, he got off pred and has been off pred for at least 3 years (it could be longer). Something similar to mine is being tried by a consultant rheumatologist in the north of England and he too finds it works for every single patient he has given it to. As it did for several ladies beforehand.

      My reductions are VERY slow. I use the following pattern to reduce each 1mg:

      1 day new dose, 6 days old dose

      1 day new dose, 5 days old dose

      1 day new dose, 4 days old dose

      1 day new dose, 3 days old dose

      1 day new dose, 2 days old dose

      1 day new dose, 1 day old dose

      1 day old dose, 2 days new dose

      1 day old dose, 3 days new dose

      1 day old dose, 4 days new dose

      1 day old dose, 5 days new dose

      1 day old dose, 6 days new dose

      By that stage if I feel OK I feel safe to go all new dose. I suppose you might be OK starting and stopping at "1 day new, 4 days old" but I was terribly sensitive to steroid withdrawal pain so I err on the safe side. Once you get to the "everyday new dose" - if you feel OK you can start on the next reduction, no real need to spend a month at the new dose.

      This avoids steroid withdrawal pain - which is so similar to PMR pain that you often can't tell which is which and some of us suspect that many flares are NOT the PMR returning but problems with steroid withdrawal. Using a scheme like this also means you can stop immediately if you have any problems - you might be fine at one day old dose, 2 days new (lower) dose but not at a 3 day gap - but you have dropped your dose a lot and that is the idea. It also isn't as slow as you would think - you can reduce at a rate of about 1mg/month on a continual basis.

  • Whisper2003
    Whisper2003 EmisModerator

    Posted

    I was diagnosed with GCA and PMR after blood test in February and started with 15 mg prednisone, GP prescribed 40 mg but I was too scared to take that many! Initially there was great improvement in symptoms but it didn't last and I increased dosage to 25 mg. I haven't taken even painkillers in years but at the time was on max dose ibuprofen for pain relief. Inflammatory markers came down and in April GP said to reduce 5 mg per week. a few days later had palpitations which led to tachycardia (280 bpm). Rescue ensued then into resus where adenosine was tried twice then shocked for return to sinus rythym. 4 days in critical care with tests suspected ASD. Now on Digoxin and Bisoprolol and await possible repair. Have date to see cardiologist on Thursday with TOE the following week. By the way, I was probably born with this defect - so not to scare anyone! GP advised on last visit to reduce again by 5 mg and she doesn't need to see me again. She said to ring for blood test results end of June. I cut the prednisone in 4 and reduced by 1.5 mg and then three. Within a few days I was in great pain again and went back up to 15 mg which I informed the surgery. This time pain in back/ribs makes breathing properly more difficult. I don't want this to interfere with heart repair. Thanks for all who posted on here. It has helped me a lot.
    • MrsO-UK_Surrey
      MrsO-UK_Surrey Whisper2003

      Posted

      I'm sorry to hear of the health problems you are experiencing since diagnosis, although if it was GCA then you took a big risk in not taking the recommended amount of steroids to protect your eyesight.  However, fortunately it sounds as though your eyesight is fine - at least you haven't mentioned it.  With GCA, and your other problems, I would have thought it would be advisable for you to be under the care of a rheumatologist especially as your steroid dosing will need to be managed very carefully alongside your cardiac problems.  Lots of good luck wishes for your future treatment.
    • Whisper2003
      Whisper2003 MrsO-UK_Surrey

      Posted

      It was such a shock and I didn't know the risks about eyesight so yes I've been lucky. I was more concerned with taking steroids. GP suggested initially emergency Rheumatologist appointment but changed her mind! She is unhelpful and very dismissive. I also have Vocal Dystonia which makes getting my view accross very difficult. Only diagnosed while in critical care under cardiologist - not by GP who said my voice problems were irrelevent! Thank you for support. I wish GP was more supportive!
    • MrsO-UK_Surrey
      MrsO-UK_Surrey Whisper2003

      Posted

      Is there someone who can go with your to your appointments?  If not, have you tried writing down all the points you want to discuss and taking the list with you?  Preferably perhaps there's another more helpful, understanding and knowledgable GP you can see in your Practice.  It seems that the days are long gone when most GPs were "supportive.  Depending on where you live in the country, there might be a support group near where you could meet up with other PMR/GCA patients - it can really help to share experiences.
    • Whisper2003
      Whisper2003 MrsO-UK_Surrey

      Posted

      am in the southeast. Took my 27 yo son, very supportive, to one appointment but she still managed to 'browbeat him! Do GP surgeries have to pay for referrals? It seems there is some reluctance for this in mine! And thank you!
    • MrsO-UK_Surrey
      MrsO-UK_Surrey Whisper2003

      Posted

      Your GP should certainly not be "browbeating" either you or your son.  There must be another GP in the practice so try and see him/her instead and request referral to a rheumatologist.  The GP is just a general practitioner whereas the rheumy should be the expert in his field.

      Whereabouts in the Southeast - there's a group that meets in Surrey?

    • MrsO-UK_Surrey
      MrsO-UK_Surrey Whisper2003

      Posted

      Meant to add that there's an excellent rheumy with a special interest in PMR/GCA in Surrey too, at St Peter's Hospital in Chertsey.
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