alan
44 posts
Jul 01, 2009
12:24 AM
|
I haven't posted for a while and thought it would be good to post some good news.
I was diagnosed in May2007 with ocular MG I'd had serious double vision for 3 months and unable to function without an eye patch. It was a posative diagnosis as my Ach blood test was posative.
Mestinon did very little to help but as soon as I started Prednisolone 5mg every other day and upping the dose 5mg weakly it started to clear up and within a month I was nearly back to normal. At 35mg I was completly back to normal. I stayed on this dose for 3 months and started to reduce at the rate of 5mg per month until i got down to 20.
From 20 I went 17.5 and then 16. From 16 I went down 1mg a month until two weeks ago when I stopped altogether. So far so good no double vision or any other symptoms.
I have a neurologist in the UK who took the driving seat and a backup one who monitors me in Saudi where I am living. The neuro in Saudi thinks I just had what he calls a viral temporary bout of Ocular MG which has now burned out as he puts it.
Anyway Im keeping my fingers crossed that all stays the way it is.
Last Edited on 1-Jul-2009 12:26 AM
|
JennyH
29 posts
Jul 01, 2009
2:24 AM
|
Hi Alan
It's good to hear that you've managed to come off the steroids now and are symptom-free. I've had ocular MG for a bit longer than you (about 5 years) and have had bouts of severe double vision as well as lengthy remissions during that time. Things got really bad last year and I finally started prednisolone therapy last October (when I also finally tested positive). I followed much the same treatment plan as you and my double vision resolved within 7 weeks at 45mg on alternate days. I started reducing at the end of Feb and have got down to 15mg. I see my neuro in about a month when the plan is to carry on the reduction albeit at a slower rate. So far I am virtually symptom-free (I've had very minor eyelid problems from time to time) and I'm hoping that a very low dose of pred may be enough to keep things that way.
Long may your remission continue.
|
RobR
38 posts
Jul 01, 2009
4:42 AM
|
This is all very encouraging!
I was diagnosed by blood test this time last year and was initially on Mestinon only, which did little for the double vision. It's ocular only, with no droopy eyelids, just double vision.
In March this year I started on Prednisolene building from 20mg on alternate days to 40mg. This made things significantly worse, as I now had double vision 24/7 instead of for a couple of hours at the beginning and end of most days, and just occasionally all day.
Increasing the Pred from 40mg started to have an effect once I got above 50mg on alternate days. Yesterday I went on to 70mg which is as far as my Neuro wants me to go for now.
The double vision is all but gone now but my eyes do get very tired if I overdo things which, of course, I tend to do now that I can see so much better!
I still have problems getting a single image close up (nearer than around 2 feet), which can make eating difficult - I don't think I'd be able to tackle a bony fish at present, and doing things with my hands, such as weeding in the garden, quickly brings back the double vision if I do it for too long, although it clears when I rest my eyes.
I don't see my Neuro again until late August - I assume that if things stabilise on this dosage, I'll start coming down again after that visit.
Hopefully 6 or 7 weeks at this level will give things a chance to settle down and I won't have to go any higher on the Pred. I was dubious about starting on it initially, but it does seem to have achieved the desired effect.
I would love to think that I'd be able to reduce the dosage down to nothing over the coming months. Fingers crossed!
Regards,
Rob
|
alan
45 posts
Jul 01, 2009
4:59 AM
|
Jenny H
Thanks for the good wishes
Don't be in a hurry to come down on the preds 45 to 15 in 4 months seems fast. From 15mg to zero took me 15 months and there were times when I was tempted to go a little faster but didn't. I hope that like me you get off medication altogether and into remission it is possible.
Rob R
You seem to have a strain which is more severe than mine although at my worst my double vision was bad. If I looked at oncomming trafic I could see two vehicles side by side and the righ hand one 2 meters higher. The double vision was at all angles near and far. Hang in there once the preds wack it things get better. Don't be in a hurry to reduce the slower the better it worked for me.
|
JennyH
30 posts
Jul 01, 2009
8:46 AM
|
I also thought that the reduction in my pred dosage was quite fast but this was my neuro's advice. My bone density scan has revealed low bone density in both hips (in the osteoporosis range in one) so I was keen to reduce as soon as possible. My neuro told me to get down to 15mg so long as the double vision didn't return but to go no lower until I next saw him. By this time I will have been on 15mg for a month or so. I realise that from now on I may have to be more patient in how quickly I can get the dose down!
|
RobR
39 posts
Jul 01, 2009
10:23 AM
|
Alan,
Your description of oncoming traffic was exactly what I used to see. the second image was rarely on the same plane as the first one, normally above and to the right of the other one.
Now when I get dv (normally in the later evening when my eyes are tired) the images are almost on top of each other, with little separation. I take this as a good thing!
I'll follow the Neuro's advice on decreasing the dosage, hopefully I can reduce it to a minimal level. It has taken a bit of a sledgehammer, in terms of dosage, to get this beast under control!
Regards,
Rob
|
alan
46 posts
Jul 12, 2009
6:07 AM
|
Oh Dear I spoke too soon. 3 weeks with no medication at all and 2 days ago I got slight double vision in the reading area which lasted a few mins and went away. Yesterday the same happened again but lasted an hour or so. It is by no means bad only very slight in fact I could live with it
I am afraid it will get worse so today I went back on 2mg which I will do on alternate days. I was fine on 1mg but zero just tips it. I cant believe 1mg would make any difference but it does.
I plan to stick on 2mg for a month and then come back down to 1mg again where I was fine before. It seems that 1mg must be my maintainance dose. The other thing that may be connected is that here in Saudi, the summer heat came in with a blast last week with afternoon temps reaching 120 degrees f (48 celcius)
Last Edited on 12-Jul-2009 6:08 AM
|