Follow up to Eye Story

[Carol]

I've just had headaches for 2 days and then eye problems again but the Eye Hospital this time couldn't find any swelling so there has been no need to go on stronger medication. Last time the trigger was dropping my Prednisolone by 5 mg. This time I think that it was the stress caused by becoming overheated. We were camping in the Mallee region of Victoria and had a very hot day where there was no way of escaping the heat. It seems very important to me to not let my body get "stressed" in any way or else it LETS ME KNOW! I guess I'm gradually learning what I can take - if not I start to shake. After a while my coordination goes too and I feel wonky! I have found out that Prednisolone also comes in 1mg tabs so I am going to suggest to the Doc that I go down by just 1mg a week and not the 5mg which was obviously too much.
I have found that with this disease - or is it the medication? I feel hotter than I would normally feel. In fact I feel better if I am slightly cold both in bed and during the day. Even in winter I wear a singlet top under my clothes so that I can strip down if I'm hot. Do others find this too?
How much Prednislone do others take and how did you get your dose down????????

[andrew]

I can't comment on temperature changes as I haven't noticed them. I seem to remember when coming of Pred I was going down 5mg-10mg per month until I hit (I think) 10mg at which point it was 1mg per week. I don' remember any issues coming off it.

I can definitely relate to the stress issue though. I need to keep myself in check. Whether I actually DO keep myself in check though is another thing altogether

I'm the same with co-ordination. If I get stressed, I lose co-ordination completely. I drop things, fumble and generally make a mess. I also swear at inanimate objects but I'm not sure if that's related to the WG

Your 1mg per week taper plan sounds like a good one.

[Terry]

I definitely feel flushed on Prednisone.

Andrew, your fumbling comment reminds me of what I did a few days ago. I was getting my meds ready to take, fumbled my bottle of blood pressure medication, and a whole month's supply went flying all over the bathroom floor. That fumble came out of nowhere. I was holding the open bottle, and suddenly my hands trembled. Weird.

[andrew]

Precisely what happens to me: nothing/fumble/nothing. It's like the invisible man steps up and bumps your elbow then runs away laughing.

[Terry]

LOL, Andrew I am sure the invisible man had a great laugh watching me pick up my pills. Thankfully, the floor was freshly cleaned.

[andrew]

I assume you haven't heard of the seven second rule? If you pick something (e.g. a pill or a bit of food) up off the floor within seven seconds of it falling then it's still good for eating :-)

[Terry]

Oh geez, where I live it's a five second rule. I guess people here are more impatient or something.