Biopsy results

[Menno1525]

As I suspected given the delay the biopsy results came back negative. Most recent blood tests now show ESR and CRP completely normal, having been very raised at initial presentation three weeks ago , and the initial ultrasound showed no signs. So was it /is it GCA or not? Who knows.? Some initial symptoms , headache, burning scalp - were consistent, others including a mammoth allergic reaction were not and I’ve not had any jaw pain. Fast response to steroids and antibiotics does indicate some inflammation/infection but not sure what. Have agreed with Rheumatologist to continue on treatment for time being rather than coming straight off, but to reduce steroids at a steady but slightly faster pace than they would have if GCA definitively confirmed and see how it goes - can always slow right down or bump back up if symptoms start to re-emerge. Seems safer than playing Russian roulette with my sight. Will get more blood tests in a fortnight with extra to check on vitD/calcium levels and be seen again in a month to reassess. Meantime a Dexascan will be arranged to set baseline for bone density and check for needs for bone protective meds - no bad thing at my age. And obviously will have to watch weight, diet etc. and monitor for side effects ( at present just occasional runs, poor sleep and a late afternoon slump.).

All seems a bit unsatisfactory, although I’m thankful that our Rheumatology team seem on the ball despite the frustrations of some NHS processes, just seems odd to be committing to a serious course of treatment for a condition I might not actually have! Anyone else still in this group in a similar position? If so how quickly were you tapered off ?

[DorsetLady PMRGCAuk volunteer]

All seems a bit unsatisfactory, 

Well no it’s not actually, if they thought it could be GCA they did the correct things. We hear so many times that people struggle to get taken seriously and get necessary tests etc, so sounds as you were. As it should be.

Obviously you don’t want to be on a higher dose than necessary- no one does - and what tapering regime have you be given? Or haven’t you as yet?

[Menno1525 in reply to DorsetLady]

Oh quite I've much to be thankful for. It just feels a bit unsatisfactory to be caught in this Catch 22 situation of not really knowing, but not wanting to take risks. I'm happy to continue in treatment and suck it and see. The current proposal is that I cut down from my current 40mg to 30 for the next fortnight. Have another set of bloods and then, all being well, cut down to 20 for the next fortnight and have another appointment 2 weeks after that to reassess. Obviously any recurrence of symptoms or bad reactions to be reported promptly and taper can be slowed or reversed. Rheumy was still thinking at least a year to be fully off and would obviously be longer if needed. At present I have a cold picked up from my son and am still healing from the biopsy and have some outstanding dental work to get done so I'm not feeling particularly chipper and the steroid honeymoon is over but I do feel generally that I am in good hands and this forum helps.

[DorsetLady PMRGCAuk volunteer in reply to Menno1525]

Yes can appreciate you WANT to know exactly what’s wrong, but unfortunately it’s not always as easy as that….

Good luck with the way forward -hoping it’s not GCA… and you can get off the Pred easily.