Temporal Arteritis Update

[anniekins1]

Had a video call today from the Rheumatologist. The temporal biopsy was negative however, due to the delay of three weeks on 60mg Prednisolone he was not surprised.

He was very approachable and thorough with covering past and recent symptoms. His opinion was to treat as TA due to symptoms and blood results. He has arranged for an infusion of Aclasta and an infusion nurse will call me on the 11th May to explain the procedure further.

He wants to see the results if the Field eye test which is being redone on May 4th due to the error in installing the dilating drops prior to the test.He said he will liaise with G.P and was happy with her tapering plan put forward.

I explained that the headache had gone but there was still some slight residual pain on my scalp. He felt that was indicating some permanent nerve damage was present as the headache had resolved. He felt about two years of treatment maybe needed if all went well but said it is unpredictable as to how people respond and it could be longer.

So now waiting to see if there are any changes in the Field test and I hope some of the nerve damage shown may have been due to the drops..... I hope!🤞🏻

[SheffieldJane]

I hope that everything goes your way! He sounds open and a good communicator. I would be happy in his hands. X

[anniekins1 in reply to SheffieldJane]

It was a good start which is always a positive.😀

[123-go]

Approachable, liaising with the GP and recognising the unpredictability of the condition tells me that you are very fortunate to have this particular rheumatologist looking after you. His openness and honesty must give you a lot of confidence. I wish you well.

[anniekins1 in reply to 123-go]

Thank you, I do feel fortunate having a consultant that is approachable. As they say, one step at a time.

[PMRpro Ambassador]

He sounds like a good start - realistic enough at least.

Have you had a dexascan to see if you need Aclasta/zolendronic acid? I wouldn't accept bisphosphonates without knowing if I need it - and I have got through nearly 12 years of pred with little change in bone density, albeit at PMR levels, but only calclium and vit D supplements which you possibly need anyway with the Aclasta.

[anniekins1 in reply to PMRpro]

I did have a bone scan about three years ago which showed osteopenia in one side of my hip( can’t remember which one for sure) so maybe that is the reason for the infusion? He did not mention stopping the calcium and vitamin D so I assume that will still continue.

[PMRpro Ambassador in reply to anniekins1]

See a post I just put up - I suspect there is about to be a push for "bone protection" ...

[anniekins1 in reply to PMRpro]

Interesting and I expect you are correct about the push for bone protection. It was not even mentioned as an option from the Rheumatologist yesterday.

[Carver63]

i have suffered a very similar path as you! been feeling better in April and still dealing with longterm side effects and occasional flare up of GCA. i think the weekly Actemra injections are helping but don't last the full week. hoping that my energy comes back. Sounds like you have a good doc and i also. Since this is my first 10 minutes on this web site i feel better knowing i am not wierd with my symptoms and others are suffering the same. I hope your days become better. i am trying to live better every day!.