Appointment with Consultant Rheumatologist

[prunus]

I have GCA. Twenty months ago I had a relapse. I saw my Consultant in January this year when I was given another appointment for next January 2019. Imagine my amazement when I received a letter last Friday putting this back to August 2019. I feel this is not on. Any suggestions?

[Primarose]

Hi Prunus, sorry to hear about your relapse. Is your doctor monitoring you for GCA?

After being released from hospital in Jan 2017 diagnosed with GCA I have only ever had one proper appointment with Rheumatology. I did ring the helpline a while back when a relapse occurred but was told by the nurse that they didn't want to see me.

I am managing very well with just my doctor, we work as a team. When I asked him if I should be seeing the consultant after about a year he said that they were busy. So I let it drop.

If it's urgent then perhaps your doctor can make an urgent referral for you.

[prunus in reply to Primarose]

I think that is the basic problem - Rheumatology is overworked.

[Primarose in reply to prunus]

It seems the same in a lot of departments, I was supposed to have an appointment at the eye hospital but they are busy!

I'm lucky I suppose that my doctor has taken over and seems to be on the ball.

In your case, it's just not on.

[DorsetLady PMRGCAuk volunteer]

Hi,

I also had GCA, now in remission, and only saw Rheumy on one occasion, and that was about 6 months after diagnosis (by Ophthalmologist in A&E). I was referred back to GP after he’d “looked at” the plan GP and I agreed!

Must admit the Ophthamologist was more helpful than the Rheumy ever was. If you have a good relationship with your GP and you feel he is capable of managing your GCA, then stick with that!

I know Rheumatology Dept is overload, but GCA is supposed to treated as a serious illness - although you wonder at times!

[prunus in reply to DorsetLady]

Thanks for the advice. I have a good Optometrist so think I will go and see him.

[SnazzyD]

Hello, it depends on whether you feel the need for them or are struggling and nobody else can be of help. I’ve never found them to be much help with my GCA, so rely on my GP, this forum and the Internet.

[prunus in reply to SnazzyD]

Six years ago after 9 days in hospital when noone knew what was the matter with me including having gall stones suggested, and having a CRP of 452, they finally decided on

GCA and gave me predisolone. The Consultant came to see me and she was fine. This time, with my relapse it has been anything but fine. Chris Young has kept me going.

[PMRpro Ambassador in reply to prunus]

How can you confuse gallstones and GCA? Other than that they start with g ...

[PMRpro Ambassador]

If you are only been seen annually - that isn't really much use either. How do you manage anyway?

[prunus in reply to PMRpro]

That is true. I have relied heavily on Chris Young who has been invaluable to me.

[PMRpro Ambassador in reply to prunus]

She's probably more use...

[Mstiles in reply to prunus]

I also don’t have much help from my rheumatologist.

Who is Chris Young? I’m in the US so might not know this person?

[prunus in reply to Mstiles]

Sorry I was forgetting people are all over the world. I belong to a charity here in England which goes by the name PolyMyalgiaRheumatica/GiantCellArteritis -PMRGCA for short and she is a trustee who has been most helpful to me.

[Mstiles in reply to prunus]

Thanks prunus

[Berylholley]

Hi Prunus I have just done a reply to you to my post "Temporal Arteries vasculitis" My rheumatologist phones me if I ring his secretary but as you'll see on my post does not think I have GCA.

[prunus in reply to Berylholley]

You are very lucky to have a rheumatologist who rings you. The secretary of mine even gave me a lecture on queue jumping when I had a relapse of my GCA and was desperately needing some help. That was how I came to join the PMRGCA charity. That was where I got

my help from.