Temporal arteritis

susang
susang Member Posts: 6
edited 23. Aug 2019, 14:07 in Say Hello
I have just been told I might have temporal arteritis. Bit worried as have never heard of it. HELP/INFO

Comments

  • moderator
    moderator Moderator Posts: 4,088
    edited 30. Nov -1, 00:00
    Hi Susan
    Welcome to the forum. We are all friendly and understanding and will try and make you feel part of the forum the most popular forums are Living with Arthritis and Chit Chat. We all have various levels of pain and various forms of Arthritis.
    Hope all goes well Christine
  • moderator
    moderator Moderator Posts: 4,088
    edited 30. Nov -1, 00:00
    Hi SusanG. Just to follow up on our welcome to the forum.

    Firstly, no, I also hadn’t heard of Temporal Arteritis and so did a search on our website for any information. The top result was this page, titled “giant cell arteritis” (GCA) which turns out to be another name for temporal arteritis:

    https://www.versusarthritis.org/about-arthritis/conditions/giant-cell-arteritis-gca/

    Secondly, a couple of important questions to consider:

    Do you have a diagnosis of GCA by a GP or specialist consultant?

    If so, has this been confirmed via blood tests, ultrasound scan and full clinical examination by a specialist?

    Unless this is a genuine medical diagnosis, then the information may just make you more worried... “might have” is not a good basis for any possible treatments!

    If you need to talk to someone in confidence, then please do contact our Helplines on 0800 5200 520. Free call Monday–Friday, 9am–8pm.

    I will be most interested to read any responses from our members if they have direct experience of this form of arteritis. Do keep coming back to let us know how you get on.

    All best wishes
    Brynmor
  • dreamdaisy
    dreamdaisy Member Posts: 31,557
    edited 30. Nov -1, 00:00
    Hello, my neighbour had temporal arteritis which anyone she talked to confused with arthritis. Her joints were (and stayed) completely unaffected by arthritis, she took oral steroids for around year to treat the inflammation in her temporal arteries and is absolutely fine now. I hope this will be the case for you! DD


    Thanks DreamDaisy, that’s genuinely helpful :) Brynmor
  • susang
    susang Member Posts: 6
    edited 30. Nov -1, 00:00
    How do I ask a question to someone who posted?

    Just “reply to topic” as you did for this post and ask away :D
    Brynmor
  • dreamdaisy
    dreamdaisy Member Posts: 31,557
    edited 30. Nov -1, 00:00
    My pleasure, Brynmor, I think it's a very easy confusion to make. Yes, inflammation is involved but not of the type that us arthritics usually have as ours is in body tissue as opposed to arteries. DD
  • susang
    susang Member Posts: 6
    edited 30. Nov -1, 00:00
    DOESIT MAKE ONE DIZZY
  • moderator
    moderator Moderator Posts: 4,088
    edited 30. Nov -1, 00:00
    Checking the page I linked above, dizziness is not one of the symptoms listed.

    Please note, none of us here are medically qualified and you should contact your GP for a clinical diagnosis if you haven’t already done so.

    Best wishes
    Brynmor
  • dreamdaisy
    dreamdaisy Member Posts: 31,557
    edited 30. Nov -1, 00:00
    I have no idea as I am not a doc. This forum is for those with arthritis which is a disease of the joints. Your condition is arteritis which is not the same. Thanks to such similar sounding names they are very easily confused.

    If you are feeling dizzy ensure you are somewhere safe such as in a comfy chair or bed. Do you have someone with you? DD
  • susang
    susang Member Posts: 6
    edited 30. Nov -1, 00:00
    I felt this reply was a bit of a put dowm. I'm just trying to find info. Why is condition mentioned on website?
  • dreamdaisy
    dreamdaisy Member Posts: 31,557
    edited 30. Nov -1, 00:00
    It is mentioned because it can be connected with polymyalgia rheumatica (PmR) which is one of the many forms of arthritis. I did not mean to sound rude, I was tryng to clarify why people confuse the terms (it's like the prostate/prostrate thing) and as you did not mention PmR it sounded to me as if you possibly have this without the complication of arthritis.

    I am unclear as to whether you have been diagnosed with temporal arteritis, is your doctor going to do further tests? Has the dizziness eased? I was genuinely concerned about your situation last night but now not so much. To me as a non-doc it makes sense that extra pressure in the head could lead to dizziness but as far as I know others on here who have PmR (who possibly number fewer than ten) have not been diagnosed with arteritis. It is not listed as a symptom and as you have not meioned any meds cannot be interpreted as a side-effect. DD

    PS As I understand matters, in general forum etiquette capital letters equal shouting which is both un-needed and unwarranted.
  • crinkly1
    crinkly1 Member Posts: 156
    edited 30. Nov -1, 00:00
    Hello susang,

    I'm so sorry to hear about your temporal arteritis and I understand your frustration at the lack of general knowledge of it and your need of support from someone who knows about the condition. It must feel very scary when you have not yet made contact with anyone else who has it. It sounds as though you may not have seen a consultant either.

    I'm afraid I can't help much but I did have a good friend who moved away from my area and was diagnosed with TA as soon as she settled in her new home. I'm afraid I don't know how she is now as I lost touch after a year but I remember that she found it very difficult and extremely disabling until the right medication and the ideal dosage was established. Thankfully she has a very understanding husband and they quickly made friends in their new home town as well as finding a very helpful Rheumatologist.

    As an autoimmune condition TA does fall within the overall heading of Rheumatology but it is quite rare. I do hope you soon find the medical expertise you need and, hopefully, someone who lives with TA will read your post here and respond quickly.
  • stickywicket
    stickywicket Member Posts: 26,360
    edited 30. Nov -1, 00:00
    Hi susang. I'm afraid I know nothing about it but here are some former threads which might be useful. https://arthritiscareforum.org.uk/search.php?keywords=giant+cell+arteritis&terms=all&author=&sc=1&sf=all&sk=t&sd=d&sr=posts&st=0&ch=300&t=0&submit=Search
  • susang
    susang Member Posts: 6
    edited 30. Nov -1, 00:00
    I am right now at hospital being fast tracked for a diagnosis/biopsy. Sorry about use of caps I find it rather petty all this etiquette regarding messaging especially as there is nothing to consult to find out what is / isn't acceptable. Deep apologies for upset caused you.
  • stickywicket
    stickywicket Member Posts: 26,360
    edited 30. Nov -1, 00:00
    That's excellent news. I hope you can get on the meds asap.

    Re caps etiquette - I've always understood this to be any kind of Internet messaging thing not just the VA forum.

    Please let us know how you get on.

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