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-   -   imuran stopped (https://www.neurotalk.org/myasthenia-gravis/101418-imuran-stopped.html)

erinhermes 08-28-2009 10:26 PM

Hi Alan!
 

Hey Alan! I'm sorry to hear the Imuran didn't work for you......I was taken off of it as well and am now on Cellcept (2000 mgs).

The weight gain is a pain - trust me, I know - but it will subside as your dose goes down (pred) - I am @ 40/60 alternate days.......and I HATe looking this way!:(

AS for the mestinon, I am able to take it at my discretion, so no problems so far, though I have taken as many as 8 and as few as 2.....

Hang in there, honey! It gets better!

Love,
Erin:D




Quote:

Originally Posted by alan53 (Post 560197)
thank you all for the understanding
saw my Dr today who is pleased with how i'm coping i think that helps if your Dr is on your side of understanding he thinks i will have to wait and will see him in a months time he doesn't want me to reduce my Pred's less than 30mg which will be harlf what i'm taking now so will keep trying to stay happi
hoping my weight will come down as well hate being so big

alan:)


Alan53 08-29-2009 03:47 AM

thanks Erin
the plan is to see how i do with less Preds as for mestinon ive stoped that
as i felt their wasnt a need for it and can always take it on a bad day
so what everyone is saying is that i may of been on to much meds
worse is the worry what if its something else
alan:)

motorhead 08-29-2009 10:54 PM

guys i can so relate to the pred weight thing! last week i told my neuro that my head was ready for halloween, all we need do is stick a candle in my mouth! i've gained back all the weight i'd lost by not being able to chew and had kept off even on the mestinon. (there goes my modeling career) another 4-6 mos. will have me ready for the jabba the hutt lookalike contest.

erinhermes 08-29-2009 11:31 PM

Hi Motorhead!
 
THanks for the laugh! It was great! It made my night!

Take care!
ERin:D

Quote:

Originally Posted by motorhead (Post 560687)
guys i can so relate to the pred weight thing! last week i told my neuro that my head was ready for halloween, all we need do is stick a candle in my mouth! i've gained back all the weight i'd lost by not being able to chew and had kept off even on the mestinon. (there goes my modeling career) another 4-6 mos. will have me ready for the jabba the hutt lookalike contest.


erinhermes 08-29-2009 11:36 PM

Hi Alan!
 
Less pred? That is awesome! Too much pred can make you feel as bad as too little - per my dr!

I know what you mean about the fear thing, but just for now (!) take it one day @ a time! You have a GREAT family and lots of friends who love you and want you to FEEL BETTER - myself included.....

Now, tell me how nice and COOL it is there! It has been over 100 degrees for days on end.....thankfully I'll be in upstate NY soon - enjoying the cool weather -imagine me trying to explain running naked in the front lawn of the b & b - just enjoying the cold! LOL! Just kidding - I would NEVER do that! How is your mum? Your daughter? Wife?

Love,
Erin:hug:




Quote:

Originally Posted by alan53 (Post 560434)
thanks Erin
the plan is to see how i do with less Preds as for mestinon ive stoped that
as i felt their wasnt a need for it and can always take it on a bad day
so what everyone is saying is that i may of been on to much meds
worse is the worry what if its something else
alan:)


Alan53 08-30-2009 07:33 AM

hi Erin
our summer hasn't been to bad we have had some hot days but weeks not really and theirs always a nice breeze can't imagine your temp' just unbelievable ha ha that was funni about the garden and do all of us get that huge swollen face yak still it keeps us able to do things
my mum came and stayed with me which was nice and my daughters still making sure that im ok every day and all doing well
so i may be put on cellcept if i have problems ...
hugs Alan:hug:

redtail 09-01-2009 01:20 AM

Hi Alan,

sorry you are going through all this at the moment!!!
Great that your pred is being reduced
I hope keeps going smoothly
Kate


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