Temporal Arteritis

[SonyaMac]

I had a blood test that showed I may have Temporal Arteritis, I am waiting for an appointment for a biopsy. My doctors said not to start any steroids until the results come back. I am worried about losing my sight as I already get blurred vision which I though was because of the headaches.

[SonyaMac]

Whoops forgot the question, how soon after the biopsy did people get their results? I am also only 47 so would that make it a lot less likely to be Temporal Arteritis?

[Hidden]

Hi my doctor thought I had GCA and I was put on steroids but they told me I had to have the biopsy very quickly because being on the steroids would have upset the results of the biopsy I had it within 3 days and had the results back a week later I hope this helps you .

[Polywotsit PMRGCAuk team member]

If you have any kind of visual disturbance, the recommendations are that you should be given steroids immediately. The biopsy should be done quickly, within a few days, so that the evidence of the illness will still be present in the sample of artery removed. Please phone the PMRGCAuk helpline if you are in the UK - the number is 0300 111 5090. Don't delay!

[SonyaMac in reply to Polywotsit]

I am in New Zealand, I am going to book an appointment with my optometrist to check my eyes just to be safe as my doctor won't put me on any steroids.

[DorsetLady PMRGCAuk volunteer in reply to SonyaMac]

As you're ahead of us time-wise guess you may have already got appointment, if not, please emphasise it needs to be done ASAP!

[SonyaMac in reply to DorsetLady]

I haven't got an appointment yet, I have heard nothing since I went to the doctor on Tuesday (it is Friday here now).

[DorsetLady PMRGCAuk volunteer in reply to SonyaMac]

Hi again,

Yes know that, my daughter lives in NZ, lovely country!

How bad is your blurriness? Is is intermittent, or all rhe time, has it increased over the last few days, is it over all or part of eye?

Sorry to ask so many questions, and I don't wish to scare you, but I lost the sight in one eye, and I wouldn't want you to be affected in the same way.

Is there any way you can get to local hospital emergency Dept for them to give you a second opinion, and maybe start the drugs? Time really can be of the essence.

I wish you well, please keep in touch.

[PMRpro Ambassador]

I can't echo Kate's post loudly enough. And as far as I remember the usual expert opinion is that there is no reason to delay giving pred while waiting for a biopsy to be done because of the potential risk to vision. In fact - you should be referred to a rheumatologist immediately as a medical emergency, the same way a GP would refer someone with a suspected stroke or heart attack.

If the visual symptoms change, if there is any, even fleeting, loss of vision please don't waste any time but get someone to take you to A&E immediately and be firm about being seen.

47 is young - but there are documented cases of people in their 30s having GCA, proven by the histology, and several warnings in the medical literature that doctors should not miss GCA diagnoses on the grounds of age.

[SonyaMac in reply to PMRpro]

I was already waiting on an appointment with a rheumatologist for other issues and just got a date on Monday (9th February)

[DorsetLady PMRGCAuk volunteer]

Bit late to the discussion, but totally agree with others, having been there, got the Tshirt etc. You cannot afford the doctors to dither about if your sight is in danger.

Your GP may not realise the implications of waiting to start Pred, but as PMRpro says GCA should be regarded as an emergency and therefore treatment should be started immediately. If things deteriorate in any way please present yourself at local A&E.

Please let us know how you get on.