GCA update 3

[Marlenec]

I had call from consultant rheumy yesterday to say my MRA brain scan showed no vasculitis, no brain problem, just wear and tear. He has discussed me with Sarah Mackie, Kate who did the US, Dr. Chakrabarty and an ophthalmologist. He said that they all say I may or may not have GCA but it cannot be ruled out, if definately not GCA then he'd stop steroids straight away.

So he's "being cautious " and reducing my Prednisolone to 15mg on Monday, at next appointment. I asked if this wasn't too big a drop too soon, but he said my markers were fine and need to reduce. I wish I knew what Sarah Mackie had said and whether my actual symptoms, or the consultant's versions were discussed.

I would greatly appreciate your thoughts on this please.

[jinasc]

Email Sarah Mackie it is on the web.

[Marlenec in reply to jinasc]

Thank you jinasc, I will do that.

[PMRpro Ambassador]

Have your markers EVER been raised?

[Marlenec in reply to PMRpro]

Yes they were raised at Pmr onset, and again when suspected GCA at st James on 20/1/20 , also sed rate up .

Thank you.

[PMRpro Ambassador in reply to Marlenec]

Then it is fair to try to reduce - though I think 2 weeks at 20mg would be preferable and only try to 17.5mg first. He is in far too much of a hurry.

[Marlenec in reply to PMRpro]

Thank you, I will ask to do that on Monday. I wish I had had a positive yes or no, it feels as if I'm in limbo.

[PMRpro Ambassador in reply to Marlenec]

Not an option most of the time - you do learn to live with that. And to stand up for yourself or be a tad economical with facts ...

[Marlenec in reply to PMRpro]

Yes I will, thank you for your help.

[HeronNS]

What's your dose at the moment? I looked at your previous post and I'm not sure if you're now at 40 or 20 or somewhere in between. Whatever, if the drop is 5 mg or more it's too much. Try 2.5 for half the time, then another 2.5. What seems to be happening is you are being set up for a yo-yo situation where it will be harder to get symptoms under control, so if you can do a much smoother taper, even if it isn't slower, that should help prevent at least withdrawal symptoms. If it's the disease flaring at least you shouldn't need as big a jump up again to deal with the flare. From your earlier experience I'd have thought the doctors would like you to have a smooth transition down to lower doses as the last thing you need is to have to go back to the dosage which made you feel so bad.

[Marlenec in reply to HeronNS]

Thank you for your reply. I've been on 20mg for 6 days. I have enteric coated, was told to take mornings but didn't really function till nearly lunch so been splitting half night,half mornings and now ok around 10/11ish. All symptoms are much better than they were.

[HeronNS in reply to Marlenec]

Glad your symptoms are better. However 5 mg drop is 25% so 2.5, although still a bit more than we recommend, would be easier on your body, less likely to allow a return of the symptoms. Can you split a 5 mg tablet or are they enteric coated?

[Marlenec in reply to HeronNS]

Enteric coated but I also have 2.5mg.

[Rugger]

If you contact Sarah Mackie, as jinasc suggests, since she has already become involved with your case, you could ask if she would provide a 'second opinion' . Perhaps you wouldn't have to wait long for that.....? Her waiting list is long for new and follow-up appointments, but it's worth a try.

Try to be reassured that the MRI shows no vasculitis, which is good and try not to worry too much - easier said than done, I know. x

[PMRpro Ambassador in reply to Rugger]

She said during the video meeting last night that she is also very very busy - all doctors are making contingency plans for Covid19.