plasmapherisis
 

hi i have been in the hospital for 3 weeks now. after having asperation phemonia which led to a crisis. lungs collapsing. they have tried the ivig but only little response so now im on my 3rd plasma exhange due for my 4th wed. after the 3rd i feel a bit weaker its been 12 hours since my 3rd. i was wondering is it normal? i have bad bulbar symptoms cant swallow or talk good. how long does it take to feel the plasma? i really want out of the hospital but till i can swallow there not letting me go. what are your responses to the plasma exchange?

Wow. Sorry you are having such a hard time. I am not nearly as bad off as you are and I have never needed a plasma exchange. I did talk to a student of mine who's dad had severe myesthenia gravis. He also had several plasma exchanges. He was terribly sick in the hospital for a month; however, he got better and is doing very well now. Hang in there. I hope you feel better soon.

Sorry to hear you are having such a bad time. Plasmapheresis usually starts working by about the third or fourth treatment I was told. I started feeling better on the third day. Ivig did not do much for me either. Are you on anything else like prednisone?
I found that the prednisone made me worse, but that is me and we are all different. I started back on plasmapheresis yesterday and can tell the difference. It is what keeps me swallowing enough to stay out of the hospital.
Hope something starts working for you soon.

hi, yes the doctors just started me on predisone i think the day after i was admitted here. 60 mg, it was 2 weeks ago i began predisone. today i have my 4th plasmaphersis. friday is my 5th. i can feel the difference but not so much in my speech and swallowing. throughout this whole year i have had trouble with speaking and swallowing. it was the asperation phemonia that brought me here. litterly killed me 2 times. i was on the incubator for 1 1/2 weeks. an ngo tube in my nose, out for 4 days that i do not remember. my breathing is 100% on my own now. they tried to put a feeding tube in but my stomach is in the wrong spot so if i go that way i need invasive surgury. its been now 4 weeks that i have not eaten on my own. what i need is a good speech therapyst to help me. start off small. they are feeding me through a nose tube still. my throat is swollen slightly they say. for a while they took away mestinon, it helps me swallow and talk and see good. back on it finally, o u need it. lol...i feel like a lab rat here. in bed because they dont want me up on my own. i can walk, wash my hair. only issues left swallowing and speaking. so im praying the 5th plasma will make me whole again. how long before anyone notices a difference?

I am so sorry you are having such a rough time. I have not had plasmapharesis yet but I expect to start it soon. How long do they expect to keep you in the hospital? Please keep us updated with your improvement.

I will keep you in my prayers
kathie

goodness. soo sorry to hear all youve been going through!!! I don't have experience with that, just IVIG.. but sending positive thoughts your way that the next treatment fixes your swallowing and speech!

I too am sorry for your experience. It is amazing how each of us have difference reactions to treatments. I have MG and SPS so I'm dealing with one very rare autoimmune illness (SPS). I was given mestinon when my first symptoms of SPS materialized. That put me in CCICU for a week where I was intubated and almost experienced congestive heart failure.

I have had 5 IVIG treatments with every little results, mostly with spasms. I had 12 plasma exchange treatments (all out patient) with no result what so ever and no adverse reaction.

I hope you can find something that will help you feel better. I have found that everything seems to be trial and error and we are all guinea pigs.

Southern Bell
:grouphug:

wow, everyone is different here. i finished on friday my 5th plasmapheresis, im feeling much stronger today. I can actually smile, talk, chew and most importantly swallow my foods. I finally passed my speech and swallow test here in the hospital. I am on mechanically altered solids and thin liquids. finally after almost a month i can eat real food and not that stuff they stick through your nose. I still have that tube in my nose just in case but I believe I will be released Monday. yay...Thank God, praise to only Him. I am on 60 mg, predsone, 3 8 hour mestinon. soon the doctor was talking immuran to get me off the steriods. its been a long, long journey but i am making it through. I pray for all those out there with this hard disease that there will someday soon be a cure.

So glad to hear your good news. I can say I know what you have been going through. The most recent time I was in the hospital, they were going bypass the nasal tube and start me on TPN if I didn't start being able to swallow. Thankfully the plasmapheresis saved me and I got to go home. The real food tastes so good when you haven't had any for a while!

Awesome news that you are feeling so much better. i hope you continue to improve so you can leave the hospital soon.


kathie