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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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  • willa5
    willa5 EmisModerator

    Posted

    Hi Im new here. Im 59 years old, and was recently diagnosed. My CPR and Sed rate have been elevated ever since I can remember. I had a first episode when I was in my 20's. I periodically would have episodes, they would slowly go away. There were some years when I was ok. At some point when I was working a lot I started getting extremely bad cases, I was so tired I had a hard time even keeping my head up. I could not lift my arms to brush my hair. I do have a back and neck injury from age 16- horse fell on me, so I assumed some problems were from that. I suffered a lot for years with extreme pain in muscles, deep pain. My scalp and nose get tender when I get an episode. Fortunetly I saw a good Dr. who even though most of my autoimmune tests were negative tried me on prednisone. We tired a small does and tapered off.. I felt somewhat better but when I lowered the dose it came back. Then we did "bursts" 40-60 mg. for one week and taper slowly off after 2 months. OH my ,, it worked, for first time in many years I got a break from everything, miracle. I had to have 2-3 treatments a year. Then after a few years I didnt have so many problems.,. I am diffinetly sensitive to sunlight and almost for sure I get an attack/episode every spring. I know this is not usual for this.. My doctor said we do not know what it is ,e xpcet it is a autoimmune disease that responds to prednisone.. I wouldve killed myself if I did not have prednisone. I do not drink , smoke, Ilive a healthy life. The only thing that makes me feel ok, is prednisone. But I have to take at least 40 mg to start to knock it all the way down.and keep it down. Fortunely I have only had to have 1-2 treatments a year for the past 5 years. If I over exert myself , it can bring on a long lasting episode. Recently I saw a new GP and she gave me the PMR diagnosis. Im not 100% convinced. But maybe I am an anomoly. Lately Past year I have been having extremely painful spasms/contractions in my major musclesof my legs , and when I bend my arm and am carrying something, a stabbing, crabbing pain in my biceps (makes me drop whatever I am holding) Id like people to describe their pains or limitations all the internet sites just say the exact same thing. To me when I try and lift my arm it feels like opposite pressure. Like to go up some muscles are opposed and pull the other direction, or like there is no blood in my arms, that kind of fatique,, if I keep trying to hold them up , extreme pain. same feeling with my leg muscles.. If you ever ran a marathon to point where there is pain then no control over muscles that is what happens.. When I am extremly tired and try and make myself continue walking,working, I fall down, Ihave hurt myself a lot that way. When I feel sick my vision gets very blurry , I get constant headache when I am having a bad episode.. I also have trouble swallowing when I get very tired and sick /choke. When I take the prednisone, itis like magic... miracle drug for me. I have gained a lot of weight, but the relief from my disease is worth it. Would like to hear other people who have similar symptoms. thank-you!
  • kern44
    kern44 EmisModerator

    Posted

    New member to the forum. 58 year old male from US. All the classic symptoms of PMR.  Started 6 weeks ago with hip stiffness and got progressively worse. Misdiagnosed as Lyme Disease which is very prevalent in the northeast. Waiting for results from blood test, currently taking 60 mg of Pred a day for 5 days until my rheumatologist appointment (which seems high to me at 215 lbs.).

    24 hours after taking first 20 mg, the pain relief was notable. Anxious to learn from all the knowledge contained in this forum.

     

    • EileenH
      EileenH kern44

      Posted

      60mg is the dose used for suspected GCA, PMR usually responds to 20mg/day and weight doesn't have as much of a role to play as in some other drugs - maybe your GP is erring on the side of caution but unless you have visual symptoms 60mg is a bit OTT. Keep in touch once you have seen your rheumy.
    • MrsO-UK_Surrey
      MrsO-UK_Surrey kern44

      Posted

      Kern, yes, as Eileen has said, 60mg is far too high a dose for a diagnosis of 'just' PMR.  Such high doses are usually reserved for those suspected of having the linked condition, GCA (Giant Cell Arteritis) so as to protect their eyesight.  

      However, I'm a little confused as although you mention "currently taking 60mg of Pred a day for 5 days", you then say that "24 hours after taking your first 20mg the pain relief was notable".  Does that mean you did, in fact start off with 20mg and have since been increased to 60mg? 

    • kern44
      kern44 MrsO-UK_Surrey

      Posted

      MrsO, 

      Thanks for the reply and sorry for the confusion. My first dosage was late in the day so I only took one before bedtime. Felt improvements the next day when I continued with the prescribed amount of 3-20mg per day.  I've had no neck stiffness or eye sight issues as yet. All the pain is in the hip and shoulders.

    • EileenH
      EileenH kern44

      Posted

      What both of us are trying to say is that you really do not need 60mg/day with all the risks of the side effects at that dose! 20mg, once per day in the early morning would be better, especially until you see the rheumy - if only because the high dose will mask other possible options as there are other disorders that can mimic PMR. Your response to 20mg is quite a good indicator of it being PMR - pretty much only PMR responds so quickly to a moderate (15-20mg/day) dose of pred. 
    • kern44
      kern44 EileenH

      Posted

      EileenH-

      Thanks for clarifying. I'm going with your recommendation.

      As a newbie, I have lots of reading to do to educate myself.

      Do you have an opinion about this book? :

      The Polymyalgia Rheumatica Patient's Sourcebook Paperback – April 19, 2014by Stephen Trutter MA (Author), Sue Feher MD (Editor)

       

    • MrsO-UK_Surrey
      MrsO-UK_Surrey kern44

      Posted

      Kern, it is generally recommended to take the complete daily dose all in one go as early in the morning as possible as it's more in line with the time that our bodies are used to producing their normal daily amount of natural steroid (cortisol) during the very early hours.

      Most people find their pain is relieved by about 70% within a few days of taking the first dose, sometimes, as in my case, the difference can be felt in just a few hours.  There are even some lucky people who become totally pain-free down through the doses. 

      15mg is the usual dose prescribed for PMR, occasionally 20mg for someone who is carrying more weight.

      Perhaps you should check with your Dr his reasons for starting you on such a high dose.

    • MrsO-UK_Surrey
      MrsO-UK_Surrey kern44

      Posted

      Kern, I'm sure Eileen will have an opinion on the book you mention.  I haven't read it although the reviews look promising, and sound helpful to the new sufferer.  

      However, I notice mention of chapters on "non-pharmacological management of PMR".  Avoid those chapters like the plague - only steroids will control the inflammation of PMR and thus prevent possible risks to other parts of your body from uncontrolled inflammation.

      Anti-inflammatory foods can be helpful with the pain levels.....but only alongside the medication and not alone.

    • EileenH
      EileenH kern44

      Posted

      I have not seen this book - I live in Italy so wouldn't anyway! Most of the books I have seen in the past have been somewhat disappointing - one turned out to be about the same level of information as you get on the sheet that comes with a packet of tylenol! If it mentions "non-pharmacological methods of managing PMR" I would be inclined to feel it is aimed to fill the authors' pockets rather than really inform the patient! There aren't any!

      Where you WILL find reliable medically approved information is via the links in the post on this site you will get to following this link:

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

      The final link in the first post is to a freely available publication by a top UK rheumatology group aimed at GPs to help them diagnose and manage PMR without recourse to a specialist. It is fairly easy to read (I think, but I do have a very medical science background) and is quite clear about starting doses and dose reduction. 

      Further on the thread is the reduction plan I use with an explanation of the reasoning.

      How long must you wait to see the rheumy? You will need pred for some time to come - it isn't a case of taking 60mg for 5 days and stopping, the pain and stiffness will return very quickly. You start at a dose that is enough to manage the inflammation (usually 15-20mg as we've said) and once it is under control, usually after about 6 weeks at that level) you reduce the dose very slowly to find the lowest dose that manages the symptoms. There is no cure for PMR - it is caused by an autoimmune disorder and as long as that is active and causing inflammatory damage to the muscles and maybe joints you will need some pred. In some ways it is like rheumatoid arthritis although it doesn't respond to the usual RA drugs but, mercifully, neither does it progress and damage joints at all. It usually burns out after a few years - but can be a year or so or can be much longer, I have had it for 10 years but it is now controlled well on 4mg/day pred. 

      The links I mentioned will also take you to the other forums in the UK - where you will find plenty of people with PMR, a great deal of reliable advice and tips and even a few other men but you are far and few between! Three times as many women as men develop PMR and it is noticeable on the forums! However, men often have a simpler patient journey and on the forums there are people who still post but who have got through PMR and GCA and no longer need pred at all. One thing is certain - if you have a question and ask it on any of the forums there will almost always be someone who has the t-shirt and can answer or make suggestions.

      By the way - it's probably a good idea to start another thread - this one is meant for telling your story but when someone responds the conversation just continues here and the "stories" tend to get a bit lost. It doesn't matter too much but would be helpful to others I suppose.

  • pat38625
    pat38625 EmisModerator

    Posted

    Hi, I am a newbie.  I just got diagnosed on 12th November.  I was diagnosed with ME/cfs 14 years ago and thought my symptoms were ME at it's worst,  Am on 20mg of pred.

    I have never experienced pain like this, totally housebound.  I have my mobility back but still some residue of pain.  Has anyone else have ME/CFS as I would be interested.

    • EileenH
      EileenH pat38625

      Posted

      I had what was probably ME when I was in my late 20s - a viral-like illness for several weeks that left me totally "off my legs" and abnormal liver tests that took a good 6 months to even improve slightly. Of course, in those days it took that long to see a consultant and I was improving and the blood results were back to normal by then! I don't think that ME was regarded as anything more than yuppy flu then. It was a few years before I could walk upstairs without feeling as if I'd just done 10 stories not just 1. The tiredness never really disappeared altogether and I had other back problems and then in my early 50s the PMR started mildly - like you at first I assumed it was whatever the earlier problem had been but after 5 years during which I asked to be referred to the new ME/CFS unit in Sunderland and was refused by the GP, it eventually hit like a 10 ton truck. Where the possible ME finished and PMR began I'm not entirely sure - but I also had myofascial pain syndrome to muddy the waters! On the other hand, I suspect that all 3 were interrelated  and all need to be taken into consideration. Bowen therapy helps a lot with that aspect I think.
    • pat38625
      pat38625 EileenH

      Posted

      Thank you so much Eileen for your reply.  I was diagnosed with PMR just there on 12th November and am on 20mg of pred.  It's good to know that there is someone else who has or had  ME (I don't think it ever goes away). Thanks again Eileen.
    • EileenH
      EileenH pat38625

      Posted

      No I don't think it does and I was very very lucky that it was relatively mild - you hear such sad stories about people who are totally disabled. A former colleague of my husband developed something they couldn't identify and had to give up work - he had small children at the time. Now he is very involved in research about ME and so I assume he has also recovered somewhat. At one time he was on oxygen he was so poorly.
    • pat38625
      pat38625 EileenH

      Posted

      I was bedridden off and on for about 3 years  with ME but it's a blurr now.  If I went downstairs I couldn't get up them and vice versa but had good remissions since until this (what I now know to be PMR) about June/July this year I started to ache and then gradually got worse.  I was in my 40s when I got diagnosed with ME.  
    • EileenH
      EileenH pat38625

      Posted

      The 6 months I had was bad enough! I just felt ill and nauseated all the time - the good thing was the weight loss! There was plenty to supply me to start with ;-) But when the being unable to get up the stairs except by pulling myself up or on hands and knees returned I thought it was that again - slightly raised liver enzymes again and no other abnormal blood test just the same. But no one recognised it.

      Glad to see you here - and you might be interested in the links you'll find by following this link:

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

      This is an appoved link - if we use links in a post it is "captured" for approval, just to warn you!

    • pat38625
      pat38625 EileenH

      Posted

      Thanks Eileen I live in Belfast, Northern Ireland.  I will check later to see if there are any  PMR support groups near me.  ME has plagued me and like yourself put everything down to ME and my own gp went along with me.  I could not stand the pain in my body.  Couldn't turn in bed, couldn't get out of bed, just a nightmare but I have my mobility back.  I am still very tired and my sleep pattern is up the left.  I am not a worrier so I know it's not insomia, I suppose things will settle down in time,  Thanks again Eileen.

       

    • EileenH
      EileenH pat38625

      Posted

      The pred will mess up your sleep too - as the dose reduces it will improve but for the moment just don't worry about it and rest during the day when you can and don't bother about daytome sleep being the cause of not sleeping at night. The fatigue is from the underlying autoimmune disorder and the pred doesn't affect that at all, it is just managing the symptoms to give you a better quality of life. 

      Not sure if there is a support group in NI, they are a bit spread out across England too, and Scotland has its own PMRGCAUK branch as does the northeast of England. My best friends when the children were small were from Lisburn and (I think) Coleraine - and we all lived in southern Germany. Not forces, all academics. I still count them as my real best friends.

    • pat38625
      pat38625 EileenH

      Posted

      Yes Lisburn and Coleraine, Lisburn not too far away, Coleraine further.  Having said that although I drive, I have no sense of direction lol.  Academics yes, people automatically assume when someone says Germany its to do with the forces.  I don't worry Eileen I just go with the flow, it's easier.  Yes the preds has helped the symptoms because I have got my mobility back and the absence of pain well it's just unbelievable.  I am not being melodramatic but I thought (before diagnosis) that my next step would be a wheelchair.  It's so good to have a forum like this and for people to help one another, I am so grateful for this.
    • EileenH
      EileenH pat38625

      Posted

      I don't think you are being melodramatic at all. The PMR on its own didn't bring me to considering a wheelchair - but the add-ons I had just over 2 years ago with achilles problems and myofascial pain syndrome which left me on crutches for 9 months and with horrendous back/sacroiliac pain DID get me to the point where I decided if it didn't improve an awful lot by soon after xmas I would be looking for a small mobility scooter! We have a camper van but when we went anywhere we needed a site that was near to everything as well as super weather - I couldn't go anywhere! I could only just manage at home from the flat to the village, all of 300 yards, and that because there is a lift in the block (law here in Italy) and it is almost flat. i was going totally stir-crazy. If I couldn't drive to the door and park I couldn't go - blue badges are only issued to the practically moribund here, even wheelchair users are cross-examined as to their ability to walk! Now they are stricter in the UK it is unlikely I'd have got one there. Yes, I could walk 50 yards. Once - more than once and I was a quivering heap. It was that far to get from the car to the shop - never mind walking round and back to the car. But I looked fine, with rosy cheeks...
    • pat38625
      pat38625 EileenH

      Posted

      Eileen, sorry but I have to go, will try to log on later.  Thanks
    • EileenH
      EileenH pat38625

      Posted

      No need to apologise - I just happened to be online doing other stuff. You won't normally end up in a conversation! I do like to keep the email box up-to-date though!
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