Symptoms persist

[polymy]

Have been recently diagnosed with “probable GCA”. Have reduced from 40mg pred down to 17.5mg over a suitable period of time. Had a rheumatology appointment last Friday and had bloods done a few days previously. CRP <5. No ESR requested. Have been told to continue reducing by 2.5 every 4 weeks. I was still having symptoms in spite of the blood results. Sore jaws, very sore tongue and pain in my left temple from time to time. I made this clear to the rheumatology nurse. Over the weekend the symptoms got so bad that I took an extra 5mg pred which within hours calmed it all down. It’s assumed because the bloods are ok that I can continue reducing. Surely symptoms come into the picture somewhere! The new biological drugs have been mentioned if the GCA proves difficult to control.

[Mmrr]

If it were me I'd be on the phone today explaining your issues, stating quite clearly that you are not happy to continue with the prednisolone taper as suggested. With a what else can you suggest to me , today please ?

If you get nowhere, I usually follow it up with a fine, I'll email my comments to the rheumatologist secretary. Thank you for your time.

It never fails to get a positive response. Be polite, be firm and take no nonsense.

Let us know how you get on ?

[polymy in reply to Mmrr]

Thank you for that. It sounds very positive and reasonable. There is a helpline number which i will ring. I will let you know the outcome.

[oldtimer]

Let us know how you get on. I'm fed up with people who say 'Your blood tests are fine' when I'm NOT. Please listen to the patient.

[polymy in reply to oldtimer]

Me too. It’s quite a dangerous assumption in temporal Arteritis. Losing your sight would be devastating.

[Lizard28]

Hi, I was diagnosed with this a few years ago, after my biopsy though it was a negative result but I was told it is quite common to be negative as they maybe didn’t take the right piece of artery out 🙄. However, I was kept on 40 mg of pred for six months before tapering, my ESR was around 148 at the time, it gradually came down with the pred. After a year the rheumatologist said she didn’t think it was GCA I was not a happy bunny being on steroids all this time, my symptoms were text book, very scary, I couldn’t touch my head or even lie on my pillow. Washing my hair was even worse. Even with the neg biopsy, they can’t take the risk of not treating you in case it is.