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GCA symptoms

Posted , 10 users are following.

pat38625
pat38625

Hi everyone,  I was diagnosed November '14 with PMR although the symptoms started June/July also had undiagnosed GCA August/September.  At present I have a slight earache from last night, not anything that I would need a painkiller for, also have an ache (for the want of a better word) which comes and goes in my right collar bone.  Any comments welcom and thanks in advance.

2 likes, 22 replies

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  • MrsO-UK_Surrey
    MrsO-UK_Surrey pat38625

    Posted

    Pat, what dose of steroids are you taking at present, and have you recently reduced the dose?  Have you done anything a little strenuous that may have caused the ache in your collar bone?  And have you been out in these gale force winds in the last couple of days - I used to avoid wind like the plague as it used to set off pain in my face, head and eyes, a sort of neuralgia-type pain, whilst suffering GCA.  Perhaps if you can tell us more we may be able to help further.
    • pat38625
      pat38625 MrsO-UK_Surrey

      Posted

      Thank you Mrs. O, I am at present on 12.5mg, I reduced from 15mg down to 12.5 on 13th April.  I haven't been out in the wind, I am only coming round from a very bad episode of fatigue from the weekend before last, as I went out two days in a row, shopping for about 3hours, but I was shopping dead stop and slow.  

      I remember from the undiagnosed GCA I had, the weirdest sensation from (the only way I can liken it too,) was a pulling sensation from my head to my collar bone but on the opposite side of the GCA.  I sometimes would suffer from neuralgia and take Lyrica for it but when this was going on in August/September last year I put it down to Neuralgia even though my gp on two different occasions to go to A&E but I was too ill.  Lyrica didn't help nor did carbegen (I think) didn't help either.  I had the jaw pain, both jaws sore when trying to open my mouth but this happened between dr. visits.  I now know it was GCA.  There is quite a bit I don't remember as I felt so ill, and couldn't even celebrate my 60th birthday .

      I am going to give this another day and if its still there then I will make appt and see gp.  Thanks again.

    • pat38625
      pat38625 MrsO-UK_Surrey

      Posted

      I don't know what way I have written my message lol  My gp wanted me to go to A&E on two different occasions, that's what I meant to say.
    • MrsO-UK_Surrey
      MrsO-UK_Surrey pat38625

      Posted

      Pat, if you were ok before reducing to 12.5mg 3 weeks ago, then I suspect the drop was a little too large for you at the moment.  Also it sounds as though your weekend out shopping two days in a row pretty much coincided with the dose reduction.  We always recommend taking things very easy around the time of any reduction in dose, sort of clearing the decks, to give our bodies a chance to adapt to the new dose.  If I ever had time out shopping on one day, I would rest up the following day.  One of my PMR friends used to have duvet days around the days when she used to care for her granddaughter.  You are just 6 months into treatment, and flares in the inflammation can be quite common in the first 12-18 months.

      If you still have the same symptoms tomorrow, if it was me I would increase the steroids back up for a few days, even perhaps to 15mg.  If the symptoms disappear you will have your answer, and once the inflammation has really stabilised again, perhaps you could just try reducing by 1mg next time around.  But do REST.

    • pat38625
      pat38625 MrsO-UK_Surrey

      Posted

      Thanks Mrs. O, I have been resting all last week, this past weekend and the ear ache just came on last night.  Normally I am quite sensible when reducing pred, I rest before reducing and after reducing.  I don't do any strenous work, I have a cleaner.  I have lots and lots of duvet days.  Thank you anyway.  At present am reluctant to up the pred as I have been doing ok so far until this ear ache thing last night.  I may have to up them but we shall see.  Thanks again.   Pat
    • jean05221
      jean05221 pat38625

      Posted

      Pat - I have GCA and am on 60mg Pred for the umpteenth time. I suffer from deep ear pain in my left ear from time to time. The episodes last 3/4days at a time then gradually disappear. My hearing is affected and I feel my ears need to pop big time.

      Rheumy says it's nothing to do with GCA. ENT consultant says ears are fine & the pain is too close to all the arteritis symptoms NOT to be part of the GCA!!

      So I'm left with it and the steroids have helped this time as the ear pain co-incided with a reurn to 60 from 50mgs Pred.

      I hope that you get some relief soon. Nearly everyone has mentioned rest and it works, Even dead slow shopping 2 days running sounds like too much for you while you're reducing. 

      I'm still learning to limit activity & rest more - it's not easy to get the balance right. 

      All the very best to you. Take care of yourself. Jean

       

    • erika59785
      erika59785 pat38625

      Posted

      Pat, I agree with MrsO --- when I reduced in the past with 2 1/2 --- sure enough I would have a flare of sort.  I now really only reduce with 1 mg a month, because I have suffered so much with a monthly flare -- and these were bad ones.....like the one I could not get out of bed.  It is worth waiting and being patient.  I don't like it myself, but I simply came to this conclusion.  I DO HOPE YOU DON'T HAVE GCA, and it is only a cold which is causing the symptoms.

      Hugs..... I will email shortly. Erika

    • pat38625
      pat38625 jean05221

      Posted

      Jean thank you so much, I am so sorry to hear about your GCA journey, I did go down that journey last year and it went undiagnosed.  I hadn't a clue abourt PMR and GCA although I had ME/CFS since 2001.  I thought that  ME/Fybromyalgia and PMR were all connected.  Was told in no uncertain terms that PMR is more serious than the other two, by consultant rheumy.  

      I really have learned to my cost about PMR.  I thought having ME was bad but it doesn't have a patch on PMR.  Having said that I was more or less bedridden in the early days of ME/CFS and as time went on had good remissions.  You're right, it's getting the balance right.  My balance at the moment is doing nothing only resting and making a bite to eat for myself.  So thank you again Jean and good luck on your journey.  Pat

    • pat38625
      pat38625 erika59785

      Posted

      Thank you Erika, I hope you are feeling a wee bit better.  At present this ear ache is tolerable without pain killers.  If it gets worse I will see my gp but am hoping for the best and am just resting.  You take care now.  Hugs to you and hope you are not in pain.  Hugs to you too.  Pat
  • tina-uk_cwall
    tina-uk_cwall pat38625

    Posted

    Hello pat, I'm so sorry to hear you are not feeling too good. I have not experienced any ear ache so cannot offer any answers other than perhaps you need your ears syringed? I say that because my husband suffers from wax build up and we always know when they need clearing out with otex because he experiences a mild ear ache, anyway it's just a thought.

    i have just started this years gardening chores and my shoulders, neck and upper arms have really pained on occasions. I am secure in the knowledge that it's not a flare as the pain is not PMR pain but typical pain you experience when you've overdone things, which I know on occasions I have. Could you have done something similar? Sometimes just carrying in the shopping bags can have the same effect, so try and think back, even if it was trivial because of our condition it does make a difference. Anyway pat, I hope this blip improves soon. Regards, christina 

    • pat38625
      pat38625 tina-uk_cwall

      Posted

      Thank you Christina, sorry to hear you are feeling your aches and pains but thankfully not PMR pain.  I cannot shop by myself as it is too much for me, I cannot put things in and out of shopping trolley and then boot of the car.  My son does all that.  I haven't done much at all.  Thanks again.  Pat
  • misdiagnose
    misdiagnose pat38625

    Posted

    Dear Pat38625, jaw pain and ear ache are symptoms of active GCA. I had earache and ringining in my ears which was around the time when I lost some of my hearing. You need a consultation definitely because the discomfort around your collar bone might be related to the artery in this area. I had pain in my carotid and am hoping there is no permanent damage because my prednisolone was being rapidly reduced. My doctor was so worried about osteoporosis but my DEXA scans have been normal. I had to tell them, I'm not worried about my bones in 10 years time (I'm a similar age to you) just my major arteries now!
    • pat38625
      pat38625 misdiagnose

      Posted

      I just typed a message to you but it must have gone to message heaven lol.  I will get a gp appt. if this keeps up (the ear ache).  The only way I can describe the sensation from my head to my collar bone was that there was an invisible string being pulled very very slowly from head to collar bone but that was when I suffering from GCA (undiagnosed) way back in August/September.  I sas consultant rheumy in March and he prescribed AA. which I am not taking, l asked about a dexa scan and he said further down the line.  Got a letter from drs. practice to see a locum dr about new medication so made the appt. and went to see her last week.  The new medication was not new it was AA but the wording in the letter suggested a totallly new medication, not a review of the new medication re: AA.  Like yourself am more concerned about major arteries than possibility of osteo.  I will take my chances with that one.  Thanks anyway.  Pat
  • Guest
    Guest pat38625

    Posted

    Misdiagnose... I only have GCA. I agree with Pat that your symptoms could be serious. My ears rang a little but turned numb with total jaw clarification as my sed rate was climbing to 95. Maybe a gp checkup is really in order. If I had waited and not mentioned all symptoms, hmm, could have been much worse. I agree with Pat....arteries!! Ann11195
    • pat38625
      pat38625 Guest

      Posted

      Thank you Ann, I will not be taking any chances this time.  I now know what GCA felt like, at it's worst.  In November my ESR was 124 and CRP was 46.7.  I cried and cried with the pain and at times was just too ill to go to see gp or have gp come to me.  I was going down the route of neuralgia and having ME/CFS was going that route which eventually turned out to be PMR.  Thanks again.  Pat
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