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GCA

Posted , 9 users are following.

hilary_76724
hilary_76724

i have had Polymyalgia for a year and due to stomach problems I am having steroids by injection rather than taking Prednisilone. On Friday evening I started with a severe headache, tenderness on my scalp, down the side of my face and in my Jaw. By morning the symptoms were worse. Knowing the risks of GCA I rang 111 who directed me to A and E. I had blood tests and everything was normal and was sent home with painkillers. Today the symptoms are still as Bad. Is it possible to have GCA without bloods showing anything abnormal. What do you suggest I do?

0 likes, 16 replies

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  • ptolemy
    ptolemy hilary_76724

    Posted

    About twenty per cent of people do not show raised blood markers. You should go back and tell them you are having GCA symptoms. I am surprised the doctors are not aware that we do not all show raised blood results. 
  • EileenH
    EileenH hilary_76724

    Posted

    Go back and explain and ask to see the A&E consultant at least. I assume you took your husband with you?

    As ptolemy says, 1 in 5 never have raised results and even if you did at the start the fact you are still having pred injections can stop them rising again. The dose you are on at present is almost certainly not enough to prevent a progression to GCA if it is going to happen.

    Does your A&E hospital have a rheumatology or eye department? Where is the nearest that does? I can't even suggest taking an emergency dose of pred which is what good rheumies tell us to do - if it helps then it is more suggestive of GCA than just a "headache" and keeps you going a bit longer until you see a decent doctor.

    Ptolemy - even some rheumies don't know you can have GCA and no raised blood markers, some refuse to accept the idea at all saying it can't be GCA/PMR. 

    • hilary_76724
      hilary_76724 EileenH

      Posted

      The hospital is a big one with both Rhemy and eye departments. The problem was it being the weekend. 
    • EileenH
      EileenH hilary_76724

      Posted

      Don't be misled by JHunt's lies - the consultants are also available at the weekend. Even if they are not in the department they are at the end of a phone so at least a senior registrar can be consulted. I do realise that the first bit to get past is triage - but be insistent. 

      Can't remember where you are. If 111 said to go to A&E you could ring them again and tell them you need to speak to an on-call doctor urgently and tell them what has happened and that the symptoms are worsening. Emphasise the risk of visual loss to the call handler. They got it right the first time - maybe a OOH doctor referral might help.

       

    • hilary_76724
      hilary_76724 EileenH

      Posted

      Decided to go to the A and E where my Rheumatologist is based. This is a larger hospital further from where we live. Got there at 1pm and just back. Saw an excellent doctor who was so thorough. He agreed it was GCA and has sent a message to my Rheumatologist asking if he can see me in clinic tomorrow afternoon. Meanwhile he has given me a top up injection of Depo medrone. Result!! Back home all sorted by 4pm

       

    • EileenH
      EileenH hilary_76724

      Posted

      Result!!!!!!  Are you feeling better? Now I can stop worrying! But what a shame - so sorry this is happening.

      It ALWAYS happens at the weekend - I've lost count of the number of posts like yours I've seen at weekends. I know it is tempting to go to the nearest A&E - but if you are already "on the books" at a hospital it is worth going there with a flare.

      Now have a nice relaxing evening - or do the injections make you hyper?

    • hilary_76724
      hilary_76724 EileenH

      Posted

      I don't feel any different yet but he said it would take a few hours for the injection to kick in. I do think that any hospital should have a doctor able to diagnose this. Also one shouldn't have to kick up a stink when they are feeling ill, in order to be listened to. Luckily the Doc I saw this afternoon had experience of this condition. I suspect the one yesterday had to read up about it!!! Thanks for your help and concern x
    • EileenH
      EileenH hilary_76724

      Posted

      The trouble is it is a very rare disease and that is where most of the problems arise. The average GP will never have met it and the symptoms are so variable - some people have nothing before losing vision. Others never have a headache - but the vision that is created of the "typical patient" is one with an awful headache, jaw pain and visual symptoms, each of which appears in maybe 20-30% of patients. Once they have seen it it is a different matter - especially when they've met the patient who has lost some sight.

      Last week a patient was told it definitely wasn't GCA because the biopsy was negative - and that was the "gold standard". Yes, if it is positive it is 100% certain - that's all, it isn't a reliable negative test.  And an eye specialist said it couldn't be GCA as it was transient visual loss - which is typical in the week before permanent visual loss. 

      Heaven knows how we can spread the word - other than what we did this afternoon! Good luck tomorrow and do tell us what the man says in clinic.

    • hilary_76724
      hilary_76724 EileenH

      Posted

      Just to update you. I feel a lot better now but still tenderness in jaw and head but nothing like before. The Rheumatologust said I had done the right thing in not taking the first doctor's diagnosis and he was annoyed that I had been palmed off. I am now on two weekly injections for a while rather than 4 weekly. I am seeing again in a month and am to phone his secretary if things deteriorate. Thank you so much.
    • EileenH
      EileenH hilary_76724

      Posted

      Good - but you wouldn't have gone back if I hadn't told you to would you? How many other people believe JHunt's weasel words? 

      HOSPITALS ARE OPEN 27/7. THEY HAVE BEEN FOR YEARS AND WILL CONTINUE TO BE UNLESS THIS GOVERNMENT CHANGES IT.

      They are misquoting the study about weekend admissions and death rates - the authors say so and I think we can believe THEM.

      Wonder what my BP is... rolleyes

      Sorry for shouting and ranting...

  • bri21
    bri21 hilary_76724

    Posted

    after 5 years and crp esr being both in the 60 and 70 i have been given naproxen ,that has reduced levels and inflammation but only can be used as a stop gap .now after a pet scan has pick up sero negative arthritis in shoulders chest nothing in hips but stoll have pain taken mycophenolate ,been treated 5 years and possibly never had pmr or gca nnow have more problems .on iron tab and waiting for B12 inj just feel angry and disillusioned no faith in medical practitioners only the latest has done anything 
    • EileenH
      EileenH bri21

      Posted

      As soon as I read that naproxen had helped my immediate reaction was "bet it isn't GCA". A persistent raised ESR/CRP like that should have triggered suspicions long before. 

      I'll just keep pluggin on...

  • bri21
    bri21 hilary_76724

    Posted

    as i was being treated for PMA had bad head for weeks ,was refered to  Neurologist

    was set to hospitail and started on 60 mg pred for GCA .I had tenderness to scalp and temple .no problems with jaw .test to prove condiction did not come true as hid by pred .

    after 5 years have lots of problems and posibley never had neither , You have to got advise as GCA can be dangerous .But ask Question  you are not a number .this site give good advise and support .They are people no better then us just a diffrent 

    profession

  • maureen63465
    maureen63465 hilary_76724

    Posted

    I agree with Ptolemy,

     

    you have been treated very badly and they should have erred on the side of caution. A similar thing happened to me nearly 3 weeks ago but thankfully my GP  made sure I was treated.

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