Just a quick recap.... My wife lost her sight in march this year to GCA. She left hospital on 60mg of pred.
The rheumy she saw about a month after leaving hospital put her on a program of reducing to 30mg then by 2.5 mg every 4 weeks, currently she is on10 mg.
The problem is I have noticed that she is getting worse with every reduction, not her sight which I guess will never improve but in her general health. Currently she can barely raise the energy to get out of bed and if we have to go out just getting washed and dressed she needs to rest for a period. She spends most of the time asleep. In fact she is as ill now as before she lost her sight.
Looking at the RNIB website on GCA it says that steroids can be needed for two years. we are seeing our GP on Wednesday, do you think we should ask to increase the pred dose Also should we ask to see an opthalmologist as well as the rheumy as she hasn't seen anyone about her eyes since she left hospital.
We only get to see the GP every couple of months and when we do we often leave feeling we've been fobbed off.
Do you think we should be more assertive?. I have printed off the RNIB stuff and highlighted the relevant bits. which I hope will help get our point across. We are of a generation that was brought up to respect doctors etc. and find it quite hard to more forceful or question what they tell us.
Thank for listening. Barry