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-   -   *Knock On Wood* (https://www.neurotalk.org/myasthenia-gravis/118633-knock-wood.html)

rezmommy 04-06-2010 12:37 PM

*Knock On Wood*
 


Hi All

I really don't like to say this without knocking on some sort of wood but I FEEL GOOD.

I am not running marathons or lifting weights or anything like that but I am feeling so good and I haven't for quite some time.

I had been on prednisone, imuran and mestinon since Nov. 08. Well I asked my dr to consider tapering the pred because I was not happy with the side effects. I tapered down and took my last pred pill in mid January. Around the same time I got a cold. The muscle weakness got much worse and my breathing started to be affected. The other neuros wanted to start pred again but I asked to hold off until I could see my neuro. My neuro agreed to hold off and agreed to start a monthly IVIG treatment plan.

I am currently on my third monthly treatment and I can't believe how well I am doing. Actually able to walk and not look like I have been drinking. My eyelids are also in a ggod place. I just wanted to tell you because I know that there are a lot of you are struggling with pred as I was for a year. The side effects are not fun.

Thanks for listening and have a happy day. :) Melanie

suev 04-06-2010 01:58 PM

Melanie,

What terrific news!! So glad you are feeling better!

Sue

Kathie Glenn 04-06-2010 02:37 PM

Quote:

Originally Posted by rezmommy (Post 641119)

Hi All

I really don't like to say this without knocking on some sort of wood but I FEEL GOOD.

I am not running marathons or lifting weights or anything like that but I am feeling so good and I haven't for quite some time.

I had been on prednisone, imuran and mestinon since Nov. 08. Well I asked my dr to consider tapering the pred because I was not happy with the side effects. I tapered down and took my last pred pill in mid January. Around the same time I got a cold. The muscle weakness got much worse and my breathing started to be affected. The other neuros wanted to start pred again but I asked to hold off until I could see my neuro. My neuro agreed to hold off and agreed to start a monthly IVIG treatment plan.

I am currently on my third monthly treatment and I can't believe how well I am doing. Actually able to walk and not look like I have been drinking. My eyelids are also in a ggod place. I just wanted to tell you because I know that there are a lot of you are struggling with pred as I was for a year. The side effects are not fun.

Thanks for listening and have a happy day. :) Melanie

Melanie, That is just awesome! I will pray it keeps improving. If only to get off Prednisone, or at least a maintenance dose. I am on 20 daily now and feel like a blimp. Of course, that is better than the 60 I was on!:hug:

AnnieB3 04-06-2010 03:25 PM

Melanie, That's fantastic. I'm glad the IVIG is working for you. I hope things continue this way for you.

Annie

rezmommy 04-06-2010 06:04 PM

Thanks so much Sue, Kathie Glenn & Annie.

Kathie, I know what you mean about feeling like a blimp. I was on varying doses of pred ( from 100 to 10 mg daily) over the year. During that time I put on 40 LBS. I have been through 4 pregnancies so I kind of thought I would take off the weight like I had after I had the babies. WRONG! This weight is so hard to come off. I have taken 10 LBS off since January but have a long way to go. I have noticed that the insomnia and moodiness have improved greatly. I will keep pushing along while I feel good and hopefully I can get a little more weight off before the summer.

Shari_W 04-06-2010 09:53 PM

That is great news Melanie! I too am feeling much better than I have in a long time so I know how you feel. It's wonderful isn't it? Enjoy each and every minute of your new found health and I pray it will continue for you!

Blessings,
Shari

DesertFlower 04-07-2010 10:19 AM

Hooray! I am happy for you. :hug:

rezmommy 04-07-2010 08:44 PM

Thank you ladies! Shari, I am enjoying it. :)


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