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temporal arteritis

Posted , 9 users are following.

maureen63465
maureen63465

Diagnosed with temporal arteritis by emergency GP saturday 7pm .Started on prednisalone. Advised to see Gp today. Gp said I had been misdiagnosed yet I have had all the classic symptoms. He took some blood samples but said I had an ordinary headache. I have been treated for Temporal arteritis about 3 years previously and I would not go with an ordinary headache . I didn't have a biopsy then because I recovered fairly quickly. I am confused. Any advice will be greatly appreciated.

Maureen Smith

2 likes, 13 replies

13 Replies

  • snapperblue
    snapperblue maureen63465

    Posted

    I hope you have read some of the olders threads, especially those in reply to Pam of about a week ago.  There has been an epidemic of dueling doctors lately.

    It would help if you'd describe exactly what symptoms you had.  Where was the headache, did it hurt more if you touched the area?  What other "classic" symptoms do you mean? 

    What happened 3 years ago?  Were you on prednisone and how long?  I'm confused by your comment that you did not have a biopsy because you recovered so quickly- usually the biopsy is done at the very beginning.  

    Is this the same GP who treated you then?

    I was in a similar position in January- one doctor saying it was TA, the other saying it was not.  I was happy to take prednisone (60 mg) for a short time until the situation was clearer.  Not treating possible TA is a high stakes gamble, but treating it unnecessarily is really bad too.  

    • maureen63465
      maureen63465 snapperblue

      Posted

      Hi Snapperblue, thank you for your reply. I had severe pain in left temporal area and a very tender spot on right top of head 3 years ago so opposite side  of Saturdays episode. The GP from the same practice, at first was annoyed with me because I left it over the weekend without seeing anyone but started me on a high dose of Prednisalone and I think I took it for about 2 months but can't be sure and then gradually reducing the dose. She debated whether to arrange a biopsy and decided against it. I didn't know much about this condition initially and accepted her word. With hind sight I suppose I should have had one.

      This time I felt more severe pain in the right temporal area very tender to touch and jaw pain and felt more ill. prior to this happening  I had had a muzzy headachy feeling for a couple of days and my eyes were blurry and felt sore. I used more gel tears than normal to help ease this. On reflection I had illness problems in 2014 and recurring ear pain but on being examined there was nothing in my ear to see.

      I know this wasn't  a normal headache and I probably only have 1 or 2 migraines a year. I am 78 years and am intelligent enough to know the difference between normal and abnormal.

      The emergency GP did say I should go to A &E if symptoms recur and I am to blame for not doing as he said. A&E is not the best place to be on a saturday afternoon when the pubs turn out and it is always a 4 hour wait.

      I can't think of anything else at the moment but will let you know if I remember anything

    • snapperblue
      snapperblue maureen63465

      Posted

      What are you doing now for medication?  I hope you have not stopped the prednisone.

As Eileen often says, there is no blood test that will exclude temporal arteritis, so I don't know what your GP is talking about.  

      As you know, the pain on touching the temple is a classic sign.  So is jaw pain, especially pain that comes on while using the muscle, like chewing.  The description of "headache" in TA is often too vague to distinguish between a "significant" headache indicating TA and any other headache.

      When I was unsure about whether I had TA (having been diagnosed a few weeks before with PMR), I had my doctors spell out exactly what symptoms to look for and what to do for each.  Loss of vision, race to emergency care.  Jaw pain, temple pain, scalp pain, double vision- call him right away, or go to emergency care.  

      You have two of these, and they are not random, everyday sorts of pain.   

      There has been a rash of cases on this forum recently in which someone is diagnosed with TA and the next doctor says “Nah” without giving any clear reason.  How did he know it was an “ordinary” headache? (Maybe he is right about the headache, but the pain on touching and jaw pain have me alarmed!)   The blood tests for inflammation may have been normal because you were already on prednisone.

       TA is too dangerous to mess around coddling some doctor’s ego.  (Tact is not my long suit!)  Ask for a referral to a rheumatologist, go back to the ER, or find a new GP! 

       

       

    • snapperblue
      snapperblue maureen63465

      Posted

      I might add that your doctor does not seem to crediting you with the intelligence to recognize a new type of headache and to have learned from your past experience with TA.  You may know more about it than he does, not a possibility that crosses some doctors' minds, ever.  

      I have a great, reasonable GP who listens and treats his patients with respect, but there are timew when I think he is the exception.  

    • maureen63465
      maureen63465 snapperblue

      Posted

      Hi, I am still on the Predisalone 40mgms daily and the emergency Doctor actually gave me a script for 56 tablets, so a weeks supply.  My Gp was supposed to ring me tonight with the blood results but I have heard nothing so I will ring Surgery tomorrow. I forgot to mention that for some time I have had very painful hands and shoulders and difficulty gripping things and balance problems, also I found my old diary from 3 years ago and found I had recorded the same symptoms. I had also forgotten the  Gp I saw then said because the blood results came back negative I must have had cluster headaches and that was the reason for non biopsy.

      I have quite painful arthritic problems but I am a very optimistic person and always tend to look on the bright side because there are so many people worse off than me.I got an immediate eye appointment at Spec Savers this morning and they were very thorough. Thankfully the optic nerve and surrounding blood vessels were clear but she did say it was possibly due to the Prednisalone. She also commented that my left eye lid was slightly droopy which is a new thing.

      It all seems to be a bit of a grey area for me and full of if's and but's but I am still taking the medication which can only be a good thing

  • EileenH
    EileenH maureen63465

    Posted

    I've replied already on another thread:

    If the pain gets worse or you have any visual symptoms bypass your really very unhelpful doctor and go to the hospital A&E department and ask for their advice, telling them exactly what has happened so far. Unfortunately even if they do a biopsy it is only positive in about half of cases so even that isn't certain and 1 in 5 patients don't have raised blood values. 

    I don't know where you are - but my paramedic daughter has just told me that Yorkshire ambulance service trains their staff what to look for in GCA as they may come across it and "it is a medical emergency". Like a stroke or heart attack. Shame they don't teach doctors the same.

    • elizabeth20640
      elizabeth20640 EileenH

      Posted

      Hi just to fill you in Eileen yesterday I had what I could only described as a fire of lights in my right eye and couldn't see, I had 2 more episodes. I have never been so frightened in all my life,

      i went to hospital this morning they carried out full eye exam they said it Iwas a temporary loss of sight, cause eyes were fine .

      rheumatoligist has up my pred from 60mg to 80mg, the result of biopsy showed inflammation, I still have symptoms headache,jaw pain, and temples inflamed and a it sore, just want to know how long should it take the 80mg to work? they have given me a letter for A and E in case,  I just wish it would settle down as its so frightening thanks

    • EileenH
      EileenH elizabeth20640

      Posted

      "It was a temporary loss of sight, your eyes are fine " - sorry, that just says what happened not WHY! In GCA it is the optic nerve that is at risk, not the eye itself and it is only after some time that the area where the optic nerve joins the back of the eye changes in appearance.

      I can imagine you were frightened - I would have been too! But there have been people who wait for days to see their GP after an episode like that.

      It is difficult to say how long it will take to work, but at least they have increased the dose. Some people find relief very quickly, for others it can take days and for some it never really goes away. Have your symptoms improved at all? All any of us can say now is we hope it does improve now and be ready to head to A&E if anything gets worse.

      All the very best.

    • elizabeth20640
      elizabeth20640 EileenH

      Posted

      Well I got 3 hours sleep last night ( which is all I think you get when on pred) but normally my head would be unbearable when I would wake up and I would sit up for rest of the night, but I thought it wasn't too bad last night ( won't get too excited about it yet), 

      i am on asprin and were concerned about stroke, I'm having a scan of heart and neck and back on Friday for blood, feel like a walking time bomb at this stage, but Eileen thanks for getting back to me so quick, I really appreciate it you take care of yourself  x

    • EileenH
      EileenH elizabeth20640

      Posted

      You sound happier - which is always a good sign.

      Onwards and upwards!

  • lodgerUK_NE
    lodgerUK_NE maureen63465

    Posted

    Go to A&E ask to see the Consultant in charge of A&E tell him what is happening and get it sorted out NOW.

    GCA goes into remission and it is not cured only in remission, there is no cure at present.   Your sight is too precious.

  • misdiagnose
    misdiagnose maureen63465

    Posted

    It sounds to me like you are having a flare as GCA is notorious for producing peaks and troughs in its process.

    Can your GP give his reasoning as to why this is not a flare?

    ESR and CRP are not diagnostic tests.

    Doctors must listen to patients' symptoms and take them into account while making a diagnosis as they do in a huge number of other illnesses. To suggest a headache is dismissive when the consequences of poorly treated GCA are so very serious (it can result in stroke, heart attack, dementia, etc at huge cost to the NHS and at great inconvenience and distress to the patient and their community).

    Put your previous diagnosis and your current symptoms in writing to whoever you see.

    Many chemists offer free blood pressure checks and also diabetes tests. Visit your optometrist for an eye sight and hearing baseline and let your GP know you are doing this. These actions will put the fear of God into your health care providers!

     

  • misdiagnose
    misdiagnose maureen63465

    Posted

    Please support important posts with a 'vote' and help raise awareness for GCA. Maureen, there are several things you can do if you have a flare up in your GCA. Firstly, ask you GP for a print out of your blood test. You are entitled to this and most people using this forum probably all do this. We're you under a hosp consultant previously? You should have been in which case you could ring their secretary and explain the situation. Your gp is placing your health at serious risk if wrong. Too much of a gamble for many GPs to take. Look up the BRS guideline for treating GCA and give your GP the print out. Put it in writing that you have GCA symptoms. Visit your optician for eye and ear test baseline ask explain why you are there. Poorly treated GCA can result in damage to the arteries increasing risk of heart attack, stroke and dementia and incapacity that could have been prevented is a huge burden on the tax payer. Hope you get responsible treatment Maureen 
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