Beginners Help!

[Hw123]

I was diagnosed with GCA last December after a shaker start I am now on steriods and on reducing dose. But on getting down to 15mg I feel awful! Who do I go to for advise my GP or hospital consultant? My G P diagnosed me but my hospital consultant thought something else was going on in my body and my next scheduled appointment with him is not until June! Reading Kate Gilbert's book has helped more than the consultant!

[DorsetLady PMRGCAuk volunteer]

Hi Hw123,

What dose did you start on? Guess it was around 40mg, if so, and if you mean Dec 2016, then would say you've reduced to quickly to be at 15mg in 3 months - which is why you are having problems.

Why does your consultant think you have something else? Did he tell you to reduce quickly so he can prove otherwise? If he did, then it's him you need to speak to. Even though you don't have an appointment until June you should be able to speak to his department.

However if the GP diagnosed GCA and gave you the reduction plan, then you should really speak to him.

If there is some query about the diagnosis then we can really can't advise you to do anything about your dose, sorry.

Do hope you get an answer from someone soon!

[PMRpro Ambassador]

If you were diagnosed with GCA last December, whatever dose you started at, providing it was the normal sort of range, it is pretty fast to be at 15mg by now and I'm not entirely surprised you have signs of a possible flare, flares being common in the first 18 months after diagnosis of GCA. There is evidence from a study done in London/Southend with Dasgupta that signs of inflammation can still be found even after 6 months on high dose steroids (defined as above 20mg) - and you aren't at 6 months by any means.

It sounds as if your GP is taking charge by default - so I would discuss it with him. If he is that "up" on diagnosing GCA then he may be interested in the reduction for GCA suggested in this paper aimed at GPS to help them achieve better care of patients:

rcpe.ac.uk/sites/default/fi...