Hello everyone - I have a couple of questions, but I'll give you a brief history of my mg first - it might help with the answers. Dx in 2000 at age 50. Some DV, but mainly general overall weakness with prounounced eyelid droop in the right eye. Went on Mestinon and Cellcept pretty quickly and it held me until late 2004 when I started having a lot more overall weakness problems and the DV and breathing got really bad. First IVIG in May 2005 and thymectomy in Aug 2005 where they discovered a Stage II thymoma for which I had 28 rediation treatments. Dx with Sarcoidosis at the same time so went on 60 mg of prednisone/day. Over the next 18 months, tapered off pred and felt pretty good; still on mestinon and cellcept. About 6-8 months ago, started having problems again with overall weakness, breathing, swallowing and DV is back worse than ever. I've upped my IVIG to 2 days every 2 weeks which helped some, but I finally caved and went on temp disability about 3 weeks ago. Right now I'm just approved through the end of the year because the goal is to get this back under control and return to work.

I started on 40 mg pred 3 weeks ago and it has helped the overall weakness, breathing and swallowing, but has done nothing for the DV. Neuro just agreed to up the pred to 60 mg/day effective today and we'll see how that does.

My question (and I know this will be different for everyone, we like to keep things unique!); when did you notice improvement of DV from pred? How much pred did you have to take to get improvement? For how long?

I'm just frustrated I guess, I want it fixed NOW!!! (Don't we all!)

Sorry, I haven't had to take pred yet - so can't answer first hand. There are folks here tho who will be able to.

Hang in there!
Sue

Hey,

I am only on 20mg, and my DV wasn't all that bad to begin with....but I have only had 2 episodes of DV for a few minutes each time since about week 2 of being on 20mg....so since about mid October....I doubt this will help much, but I figured I would give you my input anyway. I hope this finds you feeling better.
<3Jessica

Hi,

I started on 60 mg of Pred daily in Nov of 2007 - I didn't notice a difference in my DV for MONTHS, but now my vision is miraculously cured. I guess it was a gradual process but by Easter 2009 I realised I no longer needed my glasses (which I was only wearing to help me merge the 2 images from my DV). Everyone at work thought I had laser eye surgery over the Easter holidays because I stoped wearing my glasses.

I am now tapering my pred -I'm down to 30 mg alternate days (0mg the other) and as yet I have not had any major re-occurance of symptoms. I feel a bit weak at times, but not enough to make me want to raise my pred levels again. I'm a bit tempted to go down to 25 mgs and see what happens....

Hope your pred kicks in soon! It's great to be free of double vision!
~Kathy

it took nearly two months for the pred to kick in but it continued to do all its dirty work in the meantime,side effects of infections,nails,urinary tract,kidney,chest and now cataraks on both eyes which will eventually require eye laser treatment.
The gain was I was on 120mg mestinon evry three hours for neck muscle disfunction causing pressure to be exerted in compensation by my chest and back muscles trying to keep my head up.Wheating on the what's next.!!!!!!!!!!!!!!!

I guess patience is the answer - I have only been on 40 for 3 weeks and 60 for one week. I just want INSTANT results (Is that too much to ask???)

I know mg is a patience builder, but I thought I was done learning!! Guess not.

Thanks again for the responses.

Juanitad,
I take 40 mg of Pred every other day. It has taken care of most all of my general weakness and other symptoms except for the droopy eyelid. When I am tired I can feel it falling shut on me. Since I've been on the Pred. the Mestinon seems to help alotwith the ptosis. The Mestinon alone did nothing for it either but the combo seems to do the trick. I only take 2 Mestinons a day, 1 around 10:00am and another around 5:00. I can tell when it is time for the 5:00 dose because my eye starts drooping. I have adjust my Mestinon dosage up and down and 2 seems to be the perfect dose for me. Anything more and I start having the generalized weakness in my legs and jaws really bad. I have been on my Pred dosage for almost 6 weeks now and for me it seemed to really kick in around 3 or 4 weeks. Hopefully the increase to 69 mg will start helping soon.
Kendra

So sorry to hear you are going through this - MG SUX!

My DV was cured immediately when I was in the ICU and getting my IV IG and 80 mgs of pred!

I was back to 20/10 within a few days! It was great! I am having problems AGAIN though now @ 20 mgs daily.....

Have you ever had a "boost" of IV IG? For some people (like me) it is nothing short of a miracle!

Hope this post finds you strong and HAPPY!

Love,
Erin

Hi Erin - Yes, I've been doing 2 days of IVIG every 2 weeks for about 3 months and it, along with the mestinon and cellcept has kept me working until 3 weeks ago when the dv got real bad and I started having trouble swallowing and breathing along with general overall weakness. The IVIG, if anything, seemed to sometimes make the weakness worse (go figure???)

I've been out about 3 weeks and I'm due for IVIG again next Thurs and Fri. The prednisone is helping with everything else except the DV. I'll see how I feel later in a couple of days to see if I need the IVIG again so soon. Just had it about 10 days ago.

Hope things get better for you soon - sounds like you've not been having any fun either!