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Eliz

Posted , 10 users are following.

elizabeth20640
elizabeth20640

Hi in January I started off with neck pain, flu like symtoms like aching all over, shivering, no appetite, I started to get pains in my thighs back and front, and pain in lower back, got so bad I couldn't walk, I eventually went to doctor and she did the bloods, results were c reactive was 83.0, monocytes 1.25 and eosinophils .03, doctor sent me to A and E.

i seeing a Doctor and she suspected polymyaliga rheumatica, but said she would try get a rheumatologist to come see me, which she did and she was lovely,

i was started on 20mg of prednisone and within 24 hrs I could walk and I just cried but my neck still achey but can live with that I'm 63 ,and was back at clinic on following Monday, so I was to stay on 20mg for 2weeks 17.5 for 5 days, 15 mg for 5 days, and 12.5 for 3 days, which today should be my last day on 12.5,

but yesterday I went to eat and couldn't open my mouth, and then last night I had tingling on both sides of my temple and there little bumps, that's the only way I can describe it, I'm just so worried can anyone help, thanks

1 like, 33 replies

33 Replies

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  • EileenH
    EileenH elizabeth20640

    Posted

    As Linda says, you need to call your doctor or go to A&E as soon as possible, today not when it is convenient, as it could be GCA - PMR symptoms can be part of GCA or can be just PMR. If you can't see your GP this morning, go to A&E.

    That reduction is a bit fast - most experts would keep you at 15mg for at least a month after 2 weeks of 20mg (it would be 6 weeks of 15mg otherwise). However - if this is GCA that wouldn't make any difference, it isn't really high enough a dose to control GCA. The speed of reduction isn't the problem after such a short time, it is that it probably wouldn't have been long enough to control the existing inflammation which is important.

    However, for now - straight off to the doctor.

    • elizabeth20640
      elizabeth20640 EileenH

      Posted

      thanks Eileen i went to A and E and was treated immediately, bumps along side of temples is inflammed arteries.so they have kept in so feel lucky, so everyone needs to watch out for this and act quicker than me, many thanks and hope your ok xxx
    • EileenH
      EileenH elizabeth20640

      Posted

      Well done! I think you did react reasonably quickly - it was Saturday it started and you had it sorted by Monday night. We have loads of people who have been messing about with GPs not recognising it for weeks and who haven't listened when we've said go to A&E - and in fairness, not all A&Es would have recognised it. Your description sounded pretty clear though.

      Hope you get lots better very quickly.

    • elizabeth20640
      elizabeth20640 EileenH

      Posted

      just an update Eileen had eye exam today and having biopsy in morning x
  • Mrs.Mac-Canada
    Mrs.Mac-Canada elizabeth20640

    Posted

    Hi Eliz, 

    My GP didn't think I had PMR the first time I went to see her but referred me to a rheumy just in case.  There was a 2  month waiting time and I just kept getting worse so went back to my GP and she prescribed 20mg of prednisone.  It only took about 8 hours and I could get out of bed almost pain free.  I was thrilled to say the least.  Unfortunately, my GP wasn't familiar with PMR and did what yours did and had me reduce too quickly.  By the time I got to my rhuemy I was in a major flare and had to start all over again.  PMR is definitely a lesson in patience.  It is a lousy drug but once you are able to get to the lower doses it doesn't have the side affects as much as the higher doses.

    I hope you find out what is causing your other symptoms but I agree that anything that might resemble GCA would send me straight to the Dr.

    Hugs,  Diana

    • elizabeth20640
      elizabeth20640 Mrs.Mac-Canada

      Posted

      hi Diana thanks for all the help and information, really appreaciate it. ye i think reducing too quickly is a big mistake, and it was the rheumatoligist who reduced my pred, i went to A and E yesterday and they diagnosed GCA, im now on 60mg and they admitted me, so this is where i am, i just think its so scary the headache has eased many thanks and wish you all good health xxxx
    • Mrs.Mac-Canada
      Mrs.Mac-Canada elizabeth20640

      Posted

      Hi Eliz,  glad you were able to get diagnosed with GCA quickly.  Although it's not anything anyone wants to have at least you know what is wrong which is not so scary.

      I hope you're home soon and feeling much better💐

      Hugs,  Diana

  • pat38625
    pat38625 elizabeth20640

    Posted

    Hi Eliz, was just reading your message.  How scary, but Thank God you got the help you needed.  And also you are in the best place (hospital).  Good wishes to you and your journey back to health.    Regards Pat
    • elizabeth20640
      elizabeth20640 pat38625

      Posted

      thanks pat for good wishes hope you are well always interested in learning how it started off with you. had a biopsy this morning just sore. but i was scared you have to act quick a lesson to all of us xx
    • pat38625
      pat38625 elizabeth20640

      Posted

      Hi Elizabeth, glad you are doing a wee bit better.  Well I was diagnosed 14 years ago with ME/CFS and have had fibromyalgia as well, but it went as mysteriously as it came.  So last June/July I started to ache a wee bit all over but put it down to I have done something in my sleep.  Bit it continued and I just went on about my business, I just thought I have lay in bed wrong. But then it started to get worse.  So made appointment with my gp (she was off) and saw a locum, he prescribed 7 days of pred and got bloods done and that was the end of it.  Preds worked a treat 15mg, but then pain came back again, but to cut a long story short I then took this pain one side of my head and put it down to neuralgia.  Headache unbearable at times.  My gp and I were going down the route of ME and Nueralgia, although she wanted me to go to A&E but I refused as I was too ill to sit for hours so I had to go down and see her every week.  She suggested A&E again and I told her no, she was concerned about the headache, but because I was so ill I would ring for pain relief, there was a time when I couldn't open my mouth because my jaws were so sore.  I had very little mobility and I swear I was one step away from a wheelchair.  I have a son who still lives at home, but I wouldn't for the life of me ask him to help with personal things.  

      My gp was off again and I had to see another locum, he mentioned PMR and I had to get bloods done.  He rang me to the house and told me I would be starting on 60mg of preds but when my son went to the chemist it was 20mg.  

      Anyway headache and sore jaws, my very hair was sore to touch went away sometime in September, but I now know looking back it was undiagnosed GCA which I had never heard of.  Elizabeth was I lucky or was I lucky.  I am truly Blessed.  So there's the bones of my story.  I am at present on 15mg pred and will be reducing to 12.5 on 4th April.  I still haven't seen a Rheumy as there is a 6 month waiting list for urgent patients.  So without this site I would be totally lost.  All the advice, support and information I have learned, well I would never have learned from a gp or a rheumy has came from the good people on this site.  So you hang on in there and keep us all informed of your progress.   Regards   Pat

    • snapperblue
      snapperblue pat38625

      Posted

      I am not sure I understand.  You had the classic GCA symptoms in September and have never had high dose prednisone to treat it?  I am not sure, but I would worry that the lose dose of prednisone is suppressing the symptoms but that the GCA is still there.

      If I were you I'd ask Eileen about this.  (In your world apparently "urgent" means "get around to it in 6 months," or I'd tell you to ask a doctor.)

    • EileenH
      EileenH snapperblue

      Posted

      "Urgent" in the UK means "sooner than routine" - it used to be 12 weeks instead of 18 weeks when there were targets, now the targets have been removed by the current government it has spread out. It's all words - a patient who has GCA should be referred as an emergency - lack of awareness of the system on the part of doctor means they think urgent is, well urgent!

      There are some rheumatologists who are confident that 15-20mg of pred is actually enough to manage GCA if there aren't visual symptoms - the very high doses are specifically drastic action to reduce the risk of blindness. 

      As Pat says, she was lucky. I too had jaw and scalp pain that, like Pat's, went away after a few weeks. I never had above 20mg - and that was much much later and because Medrol didn't appear to have the usual effect on me.

      The pred may or may not eliminate the giant cells, it isn't known - I suspect that it probably reduces swelling to improve blood flow and the dose needs to be maintained until the giant cells have been replaced in the normal course of cell renewal and the (probable) underlying autoimmune disorder has burnt out.

    • pat38625
      pat38625 snapperblue

      Posted

      Hi, Yes I had classic GCA symptoms in September as well as PMR symptoms and I wasn't on Pred.  My gp and I were going down the route of ME/CFS and Neuralgia which I would have from time to time.  I was taking Lyrica and then when it didn't work I was taking carbegen 100mg which my gp prescribed.  

      It wasn't until 12th November that I was diagnosed by a locum dr (my gp was off) after speaking with him and getting bloods done.  So it was 12th November when I started 20mg pred.  I still haven't seen a Rheumy, a 6 month waiting list for ugent appointments.  Amen, what more can I say.  It is only with hindsight and this forum and Eileen and others that I have learned as much about PMR/GCA.  I had both that went undiagnosed.  I think with haveing ME it just complicated things, I don't blame anyone.  That is just the way it was.  But am I Blessed or am I Blessed.  I am reading since I was 4 and am now 60, I could not even contemplate the thought of losing my sight.  Someone upstairs was definately fighting my corner.    Regards   Pat

    • pat38625
      pat38625 snapperblue

      Posted

      Hi again, I saw another gp in the practice sometime after pred and he referred me to Endocrinology as I used to attend there but was discharged last June.  I had appt there on 8th January, they in turn referred me to Rheumatology at Musgrave Park Hospital, they have since referred me back to Royal Victoria Hospital where the same Rheuma operates from.  My gp chased it up and that's when dr. receptionist rang me to let me know 6 month waiting list for urgent appointments.  Please feel free to ask me any more questions.  Regards Pat
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