Flare with double vision.

[mickt]

Hi ive had double vision for 3 minutes yesterday while on 20mg pred and on 2nd course of 6 infusions of cyclo.Im been treated for gca pmr ,and sticky blood ,hughes syndrome ,ive phoned specialist nurse who wanted inr for warfarin,ive been today was 2.1 which is in range,Im fearful that consultant may want steroid ramped up.I thought was making progress,but there you go.Had no more episode today. nurse says chemo needs 3 infusions for it to kick in.

[Hidden]

Hi Mickt,

A quick thought, do the Dr's think your vision problems are due to the GCA or Hughes syndrome ( or a mixture of both? ). I know that a lot of people with Hughes keep their INR between 3 and 4 as they are less symptomatic that way. It's a difficult condition to treat and there are very few " true " specialists in it ( a bit like GCA really ). You have had such an atypical response to the prednisolone in respect of your eyes that is it possible it's not GCA related? There is a very good Hughes syndrome page on health unlocked. Good luck.

[mickt in reply to Hidden]

Ive been told that they are covering all bases with treatments both Gca and hughes.At the moment been told inr should be between 2 and 3 today was 2-1.Dont think they can pinpoint which one is causing eye probs.My fatigue level has been worse this last week.My rheumatologist has phoned me and said if any more episodes he would send me to opthamologist,who saw nothing to be concerned last time in eyes,told me to stick on 20 pred which is the amount I seem to get flares at,Happened 4 times.Ill see him on day unit when in for cyclo.He is a man I very much trust he has great from the onset.The 15th aug next session 3 of 6 ,these are my second lot had 6 last year.Thanks for reply.

[Hidden in reply to mickt]

Good luck Mick. I know your clinical picture has been really complicated and you are desperate to reduce the pred because of your diabetes etc. I know they like an INR between 2 and 3 for most conditions treated by warfarin but I have read that many people with Hughes are less symptomatic when their INR is between 3 and 4.

It's obvious that you very much trust your Rheumy but has he discussed your case with anyone else as you seem to be very atypical ( it's very unusual to have cyclo for GCA )? Would it be worthwhile for him to get the input of someone like Dr David Jayne, 2 minds better than one etc!

I hope you can get some relief from your symptoms soon.

Best wishes

Keyes

[mickt in reply to Hidden]

Thanks Keyes ,it would be useful another view.I thought gca was a vasculitis ,and getting cyclo for that?

[mickt in reply to mickt]

hi .ive been to rvi eye clinic which revealed after tests galore my eyes were ok.Im walking to car park got a lift there,another 4 min double vision I had to stop walking incase I bumped into the 2 people and objects.Been on phone to rheumys sec to tell him ,he is phoning back after clinic this evening.In past when had flares hes upped my steroid dose don't see what else they can do for me to be honest.He is very reluctant to increase with me being type 1 diabetic he has said.Ill find out soon enough.I trust the guy and have faith in him,im sure he has my best interests at heart.

[mickt in reply to mickt]

steroid upped to 30 few days then 25 few days then 20 on day I get cyclo .Happy days !!!