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my journey with polymyalgia rheumatica

Posted , 15 users are following.

eileenstephenson
eileenstephenson

first visited gp dec 2010 with severe pain and stiffness in muscles of legs and hips, upper body ached but not too bad, was told had back problems and prescibed pain killers, over the next month pain and stiffness spread to every muscle in my body bar my head, thank god. returned to gp end jan 2011 and was immediately diagnosed with pmr, 20mg of predisolone given and within 12 hours pain free. in may 2011 my hands became stiff and swollen and unable to open jars etc, very painful, gp referred me to a rheumatologist as he suspected rhuematoid arthritis, appointment within 2 weeks and yes diagnosis correct,now on 15mg methotrexate which after about 8 weeks relieved pain in hands, got down to 10mg prednisolone without too much bother.

but have been unable to go maintain lower dose for any length of time, have actually got down to 1mg but within 4 days am in agony. i thought i was beating this pmr but i am afraid it is beating me at moment.

very down, weight gain awful, at least have lost moon face for the time being.

i have had lots of support from my doctors surgery and my rheumatologist.

will try again to reduce steriods but at a slower rate, have problems with pressure behind eyes and constant water infections which gp puts down to steriod side affects, in jan and feb 2012 have appointments with various hosp departments to try and sort this out.

i did feel quite alone when first diagnosed and frightened as the pain was horrific but after finding this website and reading the forum feel more confident that one day i will beat pmr, i do realise that rhuematoid arthritis is different and is incureable but seems to be controlled by the methotrexate at moment. i was 63 when diagnosed.

2 likes, 43 replies

43 Replies

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  • Mrs_G
    Mrs_G

    Posted

    Hi

    I have had PMR twice but nothing else thank goodness !

    I think that is the difficult thing if you have 2 illnesses having a fight and not knowing which one is causing you a problem

    If you feel it is the PMR your dose of steroid isnt high enough Im not sure what you are on now ?? They give you Mtxte for the RA but they also give it to people who arent managing to cope on steroids to control their PMR ?? After having PMR for 14 months this time I had to go up from 4mg to 15mg and now Im back to 4mg but Ive had it for over 3 years so a double fiquire doseage for you wouldnt be unreasonable so dont really understand why they are trying to get you off them so quick ??

    I too have a large weight gain but as I am feeling so much better with the steroids its something I have to put up with and havent had any other probs with them

    Hope you have some help from your next hospital appointments and dont give up because it isnt normal for PMR to burn out in a year 2 to 4 years is more common but if you can get your doseage right you will feel so much better

    Mrs G

  • eileenstephenson
    eileenstephenson

    Posted

    thank you all for replies, am heartened by this. eileen, i do not show RA in bloods but because my father was and my sister is a sufferer they reckon i am too. i really think it is PMR. i do not understand why i was told to reduce pred so rapidly, wont do it again as i have felt like death.

    will return to forum regularly as i feel am now not alone with this even though i do get good support from medical proffesion for which i am eternally grateful, i will remain on 10mg until i return to see my rheumatologist in two months and take it from there, he has now conceded that i will be on pred for some considerable time.

    thanks again for words of advice from you all and take care

  • EileenH
    EileenH

    Posted

    It is fair enough to say that if it is in the family there is a much higher chance it IS RA - but the symptoms you describe can apply in PMR and other autoimmune diseases too though getting rheumys to acknowledge that seems to be difficult. The main confirmation of RA is either positive rheumatoid factors (and the other newer better markers) or signs of joint damage on x-ray. If the MTX helped that's great, especially if you don't suffer any side-effects - I hope you were given a high enough dose of folic acid alongside it?

    There is a brilliant RA site called rawarrior with loads of info and support - well researched and presented by a girl called Kelly in the USA. I recommend it wholeheartedly - een for help with PMR problems!

    Look forward to hearing from you again,

    Eileen

    • pat73046
      pat73046 EileenH

      Posted

      Hi hope you are doing well. I have a question after finally being able to write again. Had to put in new password several times. I have a husband with a form of Parkinson's and now has a urinary catheter and thinks that means he is abed bound patient. I was recently diagnosed with PMR again after being in remission about 2 years. My question is how much activity should I push myself to do. The last time I was still struggling to cook,clean,and everything else and was trying to walk on hips with a vascular necrosis due to Prednisone. Gp nor rheumy noticed this.,went to a separate back surgeon who could tell by my gait. This time I have both hips and one knee replaced but recently cracked or bruised a rib cleaning tub. Did not fall just pushed hard. How do I know how much activity is enough or would detrimental. I keep besting my self up for not getting more done in house but I don' t want any recovery slowed because I should rest more. Sometimes it is all I can do to stand 4-10 minutes. Pain is around hips,buttocks, lower back,and left shoulder.cno help from husband and little from son who lives here.
    • EileenH
      EileenH pat73046

      Posted

      The only way you can tell how much you can mange is by trying - but it sounds as if housework is as much a no-no as it is for me. I couldn't even THINK about cleaning a bath tub! Have you been checked for osteoporosis with a dexascan? Being on pred sometimes doesn't do our bones much good - it hasn't affected me at all but a broken rib just while cleaning the bath sounds suspicious.

      If you can manage to afford it I would also suggest you look for a Bowen therapist locally - it may be that a couple of sessions would help the low back and hip/buttock pain. It is something that often happens alongside PMR but responds better to more targetted treatment. You can access Bowen without having to persuade a doctor and I'm sure some f the ladies (and now a gentleman) who have benefitted a lot from it will support me.

      And whilst I have a lot of sympathy for your husband - having a catheter doesn't mean he has to stay in bed and leaving everything to you. You need to get someone to talk to him and explain that you, too, have a problem and need help. If you can afford it - a cleaner at the very least.

    • pat73046
      pat73046 EileenH

      Posted

      I tried to make my email short but left out some data. I took Fosamax as Kong as I was allowed as bad stopped last year. Last dexa scan Wes above normal bone density,but I agree something should not have popped in my side and a week later still painful. I am almost 68 and my husband is 77. He has some dementia but I agree he should be more active. I think he just gave up with the diagnosis of PD and is waiting to die. He has had rehab but won't do exercises at home. He walks with walker --used to be a cane.I live in NC USA so far no one has heard of Bowen therapy. Thank you will try to get a cleaner.Pat
    • pat73046
      pat73046

      Posted

      Sorry for the type mistakes.Dexa scan above normal . fosamax taken from 2008-2014Pat
    • EileenH
      EileenH pat73046

      Posted

      It may have another name in the US. I googled "bowen therapy north carolina" and got a load of links - maybe one is not too far from you.
  • eileenstephenson
    eileenstephenson

    Posted

    well, i hope everyone has had a good holiday season with as little pain as possible. i have been pain free since returning to 10mg of pred for which i am eternally grateful. thanks again for all comments, it does help to hear from other sufferers.

    i will not attempt any reduction for at least another month then am going to reduce by 1mg to see how i get on. i am most uncomfortable with the weight gain but it is better than the pain methinks.

  • EileenH
    EileenH

    Posted

    Eileen - when you have a go at your next reduction try just 1/2mg rather than 1mg. And you could also alternate old dose/new dose for a week or so. Anything that makes the step down smaller will help with the reductions and at 10mg/day the maximum reduction you should be thinking about is 1mg, 10% of your current dose.

    Eileen

  • eileenstephenson
    eileenstephenson

    Posted

    will try that Eileen, thanks for that, woke up this morning with another water infection, sick of this, role on lst feb when i go to see a urolgist, you never know, he may be able to help me, getting these infections every couple weeks, had so many antibiotics that relieve symptons for a short time only. also had phone call from doc recalling me for more blood tests as problem with my liver, something is raised apparantly and as i am on methotrexate need to be monitored. if its not one thing its another but still pain free from my pmr.
  • EileenH
    EileenH

    Posted

    Usually if you get antibiotics that only work for a short time it is because they are not clearing the infection fully, just sending it sub-clinical and once the bugs have recovered from the minor attack they cause trouble again. Have they done cultures to make sure it is the best antibiotic they are giving you? Trimethoprine will deal with most infections if you are given enough and that is what is used most of the time in the UK and (I know from experience) without a culture being done. But they only tend to give 3 days worth - wasn't enough for me. A week did a better job but it needed a different one, specifically for E.Coli, to sort it properly. The culture result showed trimeth worked but nowhere near as well the other ab.

    The other option is that it is a different sort of cystitis, inflammation of the bladder lining, and a low level of bugs makes it worse, enough to cause symptoms.

    It's a miserable life though - you have my sympathy,

    Eileen

  • eileenstephenson
    eileenstephenson

    Posted

    hello everyone, managed to get back after a great struggle.

    some advice please, am having trouble with high pressure behind eyes, have been back to optician today and she again has written to my doc to refer me to hosp.. he originally said it is steriods and as he hoped i would be off them soon to wait and see, well it is getting worse and my rheumy ses i will be on steriods for some considerable time. am on 7.5 pred at mo. optician was shocked to see beginnings of cateracts in both eyes, i only had test in august and new specs in sept. she ses they are forming rapidly and reckons that it may be the steriods, oh heck, what do i do now. has anyone else had this problem.......

  • MrsO-UK_Surrey
    MrsO-UK_Surrey

    Posted

    eileenstephenson

    Yes, I have both high optic pressure and cataracts have developed during my time on steroids probably caused by my high starting dose of Prednisolone (40mg). Because of the risk to eyesight of my GCA, the high pressure and cataracts, I decided to see an ophthalmologist privately. Although steroids carry a risk of developing both glaucoma and cataracts, having high eye pressure doesn't necessarily mean that someone has glaucoma. My pressures are treated with daily eye drops. They haven't tended to control my pressures very well but the consultant checks the optic nerve 6-monthly to ensure that it remains healthy. The latest appointment revealed lower pressures than usual so I'm hoping that's the result of having been on a very low steroid dose for some time now, and await the next consultation with fingers crossed! As you are now on 7.5 Pred and heading in the right direction towards what are considered 'safer' doses, hopefully your pressures will return to normal and the cataracts will stabilise. Do let us know how you get on at your hospital appointment.

    MrsO

    • margo25238
      margo25238 MrsO-UK_Surrey

      Posted

      Hello and thank you for sharing so lmuch information about PMR.  I was diagnosed 3 monlths ago started at 40 and am now down to 10 and next week it will be 9 of prednisone.  I am particularly interested in the issue with glaucoma and cataracts; i am due for my eye exam and was not sure how the pred. in my system would show up in the exam.

      I have been very healthy all lmy life and this diagnosis has me thrown for a loop.  Having weight proplems all mly adult years, it has gotten so much worse.  In researching this aspect of the PMR it is recommended to stay on an anti-inflammatory diet; i will be easing myself into this soon.  Problem is, i am depressed about the diagnosis and the carbs and fats sooth me.

      Something i have not seen addressed on the blog is the connection between stress and the onset.  This has been my experience, years of stress caring for a sibling and then the death of that sibling about the time of the diagnosis....

      i look forward to catching up with each of you for mutual support.

       

    • MrsO-UK_Surrey
      MrsO-UK_Surrey margo25238

      Posted

      Hello margo, yes many PMR/GCA patients have mentioned experiencing a period of severe stress prior to their diagnosis and, in fact, I have just replied to someone on another PMR forum who has said that she was diagnosed following a year of grief.  In the absence of a known cause for these diseases, stress does seem to be very high on the list of possible triggers.

      Feeling "depressed" bout the diagnosis is not at all unusual and, in fact, tboth the inflammation lurking through your body and the steroids themselves can add to that feeling.  I can so understand that carbs and fats can "sooth", but do try and avoid all the refined carbs such as in white bread and white potatotes which just turn to sugar in our bodies and add to the risk of steroid-induced weight gain.  Substitute with sweet potatoes and wholegrain bread, pasta, rice etc.

      I am being treated for glaucoma (my cataracts are stable but being monitored), and my ophthalmologist has never mentioned Pred ever being shown up in an eye examination.  However, it is possible to see if GCA is showing in the optic nerve.  So very worthwhile having eye checks.

      It sounds as though you are doing very well if you have managed to reduce successfully from 40mg down to 10mgs in just 3 months.  A big word of warning here, however:  now that you are down to 10mgs, you will need to really slow the reductions down.  Reductions from this level should be no more than 10% at a time, otherwise you will risk passing/missing the point at where the inflammation may not be controlled by the new dose.  I can elaborate more on that if necessary.

    • margo25238
      margo25238 MrsO-UK_Surrey

      Posted

      Setting out now researching anti-inflammatory foods to help on this journey.  Your seem to have a lot of info about PMG and i welcome any other information you can share with me.  Thanks and have a nice day!

       

    • MrsO-UK_Surrey
      MrsO-UK_Surrey margo25238

      Posted

      Margo, I'm happy to share any information that might help from my experience with PMR/GCA/steroids.  So ask away if you have any specific queries and I'll do my best to help.  Thank you for your good wishes for the day - quite honestly I don't know where the day has gone, except thatI did get up an hour later than usual because of the time change!rolleyes
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