GCA Article Daily Mail

[Estellemac]

In the Heath Section of the Daily Mail Tuesday 10th July is a really good article on a new treatment and raising awareness of GCA. It explains what happens if undiagnosed. You can access this online at dailymail.co.uk.

[DorsetLady PMRGCAuk volunteer]

Hi Estellemac,

mamaci1 highlighted this in her post Hmmm along with another article on Actemra - this was my reply

“This may go against the grain for some, and I apologise for that, but in my personal opinion, (having been there, done it, got the T-shirt) I feel the DM article, and maybe Prof Dasgupta are unrealistically optimistic about Actemra.

No matter how good any drug is, the most important thing still is the recognition and early diagnosis of GCA. Yes I know there have been great strides under the auspices of said Prof, but it’s not filtered down nation-wide sufficiently.

I know I’m biased, but in my opinion that’s where the money should be spent, not on another medication that is not quite the wonder drug everybody seems to think it is.

If you have a late diagnosis, Actemra is still going to do nothing to restore any sight you might have already lost.

Once you are treated with the correct level of Pred the possibility of sight loss is greatly minimised, but the emphasis is on the correct level which obviously includes tapering in a sensible and timely manner to avoid relapses. Unfortunately the powers to be still don’t seem to have got that worked out yet. There is not enough consideration of individuals circumstances, and as we all know “one size does not fit all”!

Whilst we all know the side effects of steroids - they are widely documented and can be very unpleasant - they rarely are life threatening. It appears from the second link that the same cannot be said for Actemra.”

Her post is here-

healthunlocked.com/pmrgcauk...

[Estellemac in reply to DorsetLady]

Hi DL

I don’t have GCA just PMR but because of your posts I am much more aware of the possibly of getting it and the life changing effects it can have if gone undiagnosed. I haven’t been on here for a while as I was away so I missed the post. I will check it out. Thanks xx

[DorsetLady PMRGCAuk volunteer in reply to Estellemac]

She only posted yesterday.

[Primarose in reply to DorsetLady]

I do so wholeheartedly agree with your post DorsetLady. IMHO there is still not enough information for the medics in diagnosing GCA.

My condition was certainly not caused by grinding my teeth.

[Angiejnz in reply to DorsetLady]

You have such a dignified way of putting things, if I'd written this it would be a full blown rant. A very articulate response xx

[SheffieldJane]

It’s overly optimistic I fear. PMRPro has talked about the suppression, of the inclusion of information about very significant side effects,in the publicising of the drug

[Grants148]

I read the article you mentioned,it was interesting but l agree with Dorset Lady,it is vital that GCA is diagnosed and treated very quickly,it is important that doctors are made aware of the symptoms,a friend of mine was fortunate that her GP was aware of GCA ,she would have lost her sight had he not been,she was treated urgently with 60mgs of prednisolone which prevented this.