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Frustrated of Devon!

Posted , 10 users are following.

debbie27473
debbie27473

Hi everyone. I am going to be greedy and ask two things in one post! Firstly I have been getting a very bad pain in my right upper arm which I assumed was due to the PMR. Then, a few weeks ago I noticed that if I stroke my lower forearm the pain becomes excruciating. So this sounds more like nerve damage to me which is confusing. Anyone else had anything like this? Secondly, I have now developed a very painful left  ankle/heel. It feels like a bad sprain although I can assure you I have done nothing energetic enough to cause injury! Any ideas? Now for the technical bit. I am now down to 10mgs of pred a day from 15mgs over five months. I was on 15mgs for 10 months. Since reducing, I have noticed (I know this is three things. Sorry. lol) that some pred side effects are getting worse, not better e.g palpitations, veiny legs, those tiny little blood blister thingys to name a few. Is this normal? Every time I think things are starting to improve, I get something new. Help! To finish on a positive note, it is a beautiful, sunny day here in Devon, so I can hobble to the shop and get some fresh air. That ought to cheer me up! Wishing you all one of the 'good' days. Debbie

1 like, 20 replies

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  • tina-uk_cwall
    tina-uk_cwall debbie27473

    Posted

    Hello debbie, greetings from cornwall! Again another sunny day here! I am not medically qualified so cannot help you with the arm or and ankle only to say this sometimes we can damage parts of our bodies weeks, months, years ago and the problems just appear now, purely coincidence, but if you are very worried I'd pop along to the drs and see if they have any answers. I have a pain to the left of my sternum, just where my breast bone is. It appeared about a week prior to my diagnosis. I think it has something to do with a sore in my stomach that was picked up  when I had an endoscopy. Obviously i'm worried about it but my Dr says not to worry, but with PMR I'm afraid that any slightest little niggle or new pain or rash etc we definately do worry!

    niw for the palpitations. I'm on 9.5 mgs of pred at the moment and I went to my Dr complaining of palpitations, she told me to cut right back on coffee and tea (with caffeine), I did and the palpitations have calmed right down! That's one thought. Can't help you with the veins, but I also have a blood blister behind my left knee, had it for years. Since prednisolone I've not developed any more. But honestly, if there's no logical suggestions forthcoming from any of us I'd defin pop along to the Dr. Have a great day. Regards, christina 

    • debbie27473
      debbie27473 tina-uk_cwall

      Posted

      Hi Christina. Thank you. Now this is going to sound silly but it is somehow comforting to know that someone who lives relatively nearby is a fellow sufferer! I mean that in the nicest way, not that I would wish this horrid disease on anyone (apart from maybe a few rheumies! No, only joking......I think)! Which part of Cornwall do you live? Are you a local or, like me a long term incomer? 
    • tina-uk_cwall
      tina-uk_cwall debbie27473

      Posted

      Hi debbie, it doesn't sound silly at all. It is very comforting to know that someone nearby also suffers from PMR. I live in a little hamlet called stennack which is just outside troon, which is just outside camborne. We have lived here for 4 years and moved from Canterbury in Kent where we lived for over 20 years, but I originaly come from London. We run a holiday cottage business and when I first developed PMR symptoms cried when I had to clean the cottages on change over, that's how much pain I was in. Phew! I was only 53 when symptoms started in September 2013 but I wasn't diagnosed until the December. My rheumatologist and my now gp are fantastic and my medication has been pretty much as per the Bristol PMR plan. I had a flare up reducing from 9 to 8 in October last year that now looking back and reading more info on it probably wasn't a flare up but steriod withdrawal. I put myself back up to 10 and now I'm back down to 9.5 and hopefully will reduce to 9 at the beginning of March. On the whole I've been very lucky, haven't suffered any side effects of the prednisolone but like everyone worry endlessly about what damage it's doing that presently can't be seen. So what's your story, I hope like me on the whole this condition hasn't effected you like some of the terrible stories we read about on this forum, but I perso believe many of the dreadful effects that some of the members talk about are nothing more than very, very poor healthcare management from gps and rheumatologists that either don't know what they're doing or simply don't care and I cons that outrageous, and that's why I count myself as very lucky as both my GP and rheumatologist are very good. Hope to hear from you soon, regards, christina 
    • tricia11872
      tricia11872 debbie27473

      Posted

      Hi Debbie I live in Bournemouth but we go to Bude a lot. It really is good to hear from fellow sufferers nearer home. My back has been bad again but I am now down to 5mg Pred and have been reducing very slowly. B....nuisance!

      Tricia

      x

  • MrsO-UK_Surrey
    MrsO-UK_Surrey debbie27473

    Posted

    Hi Debbie, the symptoms you describe with your arm could be related to a problem with your shoulder, ie rotator cuff syndrome.  This can be caused by the long-term steroids softening and weakening the tendons and ligaments around the joint.

    One of the members of my support group has recently had a very similar experience and a very trusted rheumatologist has diagnosed adhesive capsulitis (frozen shoulder/rotator cuff injury), given her an injection, commenting that the pain would immediately worsen but should eventually help to resolve things.

    The fact that you mention once being on 15gs for as long as10 months really makes the above highly likely.  Have you got a good rheumy?  If so he should be able to advise and treat you.  Good luck. 

    • debbie27473
      debbie27473 MrsO-UK_Surrey

      Posted

      Thanks Mrs O. Hadn't thought of that. No, unfortunately, I have no faith whatsoever in my rheumy but I will discuss it with doc when I see her. Won't be long as Iv'e got to have extra blood test tomorrow because my crp has shot up from 13 to 48. I think this is down to a recent chest infection but I'm glad they are on the ball and checking my results!
    • EileenH
      EileenH debbie27473

      Posted

      If they are panicking about the CRP do remind them that a chest infection can send a CRP up to 60 and no, they shouldn't be upping the pred yet if there are no signs of PMR!
    • MrsO-UK_Surrey
      MrsO-UK_Surrey debbie27473

      Posted

      Aah, Debbie, re your heel pain:  now that you mention having had a recent chest infection, were you by any chance treated with antibiotics?  If so, a certain type of antibiotic (those containing quinolone) has been known to cause problems with the achilles tendon. 

      I hope the CRP blood test tomorrow shows an improvement after recovering from the chest infection, and that flaring PMR inflammation doesn't turn out to be the cause - good luck!

    • debbie27473
      debbie27473 MrsO-UK_Surrey

      Posted

      Hi Mrs O. Yes, I was treated with Amoxacillin 1500mgs per day. Any idea if this is one of the culprits? If so, will it just go away on it's own? Yes fingers crossed for the CRP test. Thank you.
    • EileenH
      EileenH debbie27473

      Posted

      No, it's the quinolones, their names all end with -oxacin. 

      But pred alone can affect the achilles so do get it checked.

  • EileenH
    EileenH debbie27473

    Posted

    I suspect the pred bits appearing as you reduce is less to do with the reduction than the time span of being on pred. The shoulder is probably something not entirely PMR-related and needs investigating - there are a few shoulder problems it could be,

    Where is the pain in your ankle? If it is at the back, at the bottom of your calf do ask your doctor. Pred can cause achilles tendon problems and that needs identifying because once the achilles is inflamed it is very easy to do real damage as it is very delicate and just tripping is enough to cause a tear.

    This isn't a UK GP surgery you know - we don't count the questions! I mention the UK simply because my GP also works through the list a patient has and even looks for more! She doesn't care how long it takes - I'm usually with her for at least half an hour! And you see her the same day, and she does house visits!!!!

    It was a lovely sunny day at home when I left to come over here to Innsbruck, on the north side of the Alps - and here it is thick low cloud/high fog so cold and damp. I wouldn't have come but my husband has had hand surgery and would find changing gear uncomfortable and he's working here this morning. Plus our daughter and the grandkids arrive by plane this afternoon. Hope the sun comes out before then!

    • debbie27473
      debbie27473 EileenH

      Posted

      Hi Eileen. Thankyou for your reply. The ankle pain is at the back of the heel, spreading around the sides when i walk on it. I will also mention this to doc. Can I come and see yours?! Sounds marvellous. I have to book my appointment three weeks in advance if I want any continuity. She is very good but if I am there more than the alloted ten mins she definitely drifts away and I sense 'time is up'. Hope your husband is on the road to recovery and that your weather improves. Enjoy your family visit. Debbie
    • EileenH
      EileenH MrsO-UK_Surrey

      Posted

      They are asleep at Gatwick at the moment! We're just keeping all appendages crossed that Naomi's asthma behaves - she developed a cold on Monday and a cold always makes her wheeze. So she's on max meds to get her here! So the pred and inhalers are making her as high as a kite - plus being up at 3am to get the fllight from Edinburgh makes for a LONG day and she's already knackered.

      So can everybody send positive vibes and cross their fingers please ;-)

    • debbie27473
      debbie27473 EileenH

      Posted

      Most definitely will do Eileen. Hate hearing about children suffering. It's bad enough that adulthood is so yuccy. Childhood should be happy and carefree! I wish her all the best. x
    • MrsO-UK_Surrey
      MrsO-UK_Surrey EileenH

      Posted

      Oh the very best of luck to Naomi - at least she will be with a Grandma who understands so much about what she is dealing with.  Hopefully the clear mountain air will work its magic for her, so that you can all enjoy this rare and special get-together. 
    • Mrs.Mac-Canada
      Mrs.Mac-Canada EileenH

      Posted

      Positive thoughts and crossing everything for Naomi. Hope you have a wonderful time with the family.  Being with family is the best💕💕
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