Myasthenia Gravis Support Group

I'm glad that nothing worse happed Cathi. All that IVIG stuff just sounds aweful and I am so sorry you have to go thru that. When I hear what you all have to go through I find myself thinking, "I can't have MG, these guys are sooo much sicker than I am." I am just glad they have these treatments and that they help. I hope you notice and improvement even more than usual. Just nothing scary at all, right? Keep in touch, thinking of you. love,carla

This last IVIG I got solu-medrol also...mine was suppose to be before and after...but due to delivery times (my IVIG is done at my house) I only got the solu-medrol after....I take Benedryl before and am so hydrated.....I get TERRIBLE migraines...this time I landed in ER after 36 hours of sleep and pain....nothing could control the pain!!!!! Finally starting to feel like myself, but now I am off my Imuran as my WBC came back dangerously low.....this is driving me insane....I feel like when things start to be okay...then they go not so good again!!!! I am sorta on house arrest too, cannot get sick as I also am deathly allergic to most antibiotics.....UUUGGGHh

I will hope for a better IVIG for you next time!!!

Cathi, I hope you are doing better!

Marcela

Hi Cathi! I am just wondering if it wasn't the sudden large dose of solumedrol rather than the benedryl that caused your weakness? Certain myasthenics are very sensitive to any sudden increase or decrease in steroid doses and it could be that you are one of those? I know that when i first started on pred we started low and increased the dose by 10mg per day. Does the rescue pack of steroids you usually take ever affect you at all? I agree with you that it seems strange that they think it is the benedryl if you've been having it all along without experiencing such weakness? On the other hand I really battle with antihistamine preparations and weakness too. How could they only mention it to you 21 months and several IVIG's into therapy!! Annoying hey!

I really hope that your weakness has settled and that the dose helps in the long run!

Big hug my friend!
Ange

Ange, I think you are right. I am still having issues today with weakness and my voice goes if I talk much, especially if I have to try to talk louder. The pred I take to avoid AM does affect me especially if I take a larger dose like 20/15/10. I told my neuro this when we started it. I feel weaker and cranky. I have it down to 15/10/5 and seem to do okay at that dose though I do have a teenage acne breakout everytime. I'm too old for that. :-)

Icrad, you sound much like me. I get hideous headaches which we finally decided are a chronic type of aseptic meningitis. I now take the small three day dose of prednisone I described above three days after infusion. It does the trick. I haven't had the mean ivig headache in a couple of months. I also have some very serious allergies to antibiotics. I'm scared to death of them.

Thanks everyone. I really am okay. I don't like change in my treatment, I feel unsure of what will come. I hope this turns out to be a good change.

Cathi

Cathi,

You and I chatted about this today... I hope you are doing better and tomorrow is even better... please take care!
luv and hugs
Annette

Hi Cathi
Shame man I am sorry to hear that you are really battling! Then there is the stress of never knowing if what you are doing is helping or just stirring up problems! Nothing ever seems clear does it. I for one will be praying that in the long run the changes your neuro has made to your regimen will help!

Hang in there!!
Love Ange

Hi Cathi,
Hope today sees you getting better!
Gez

Cathi,
I don't know where you get the strength to go through so much.You are one tough cookie.
Lorraine

Well, you guys are great. My voice was better yesterday, stronger. My breathing is still off but not worse than it's been in the past. I sleep but not like I should. We will see how the week goes.