Hi Minabeena

sorry to hear the troubles you going thru, i will try to make as easy as possible for you to understand.

plasmapheris is like dialisis treatment, it suppose to clean your blood from the dead neuro transmittors, and bad antibodys,

it is suppose to be given only one time, them complimented with ivg infusion
which is replenishment of the dead neuro transminters, as neuros transmitters cannot rejuvenet themselfs.

generaly speaking a pic line today is no tbeing used for that purpose as pic linesin the neck have the tendency to become infectious.

the neuros generally prefer to do a line int the legg by th growing, this has less propecities to get infectious.

my was done in the growing and i had never got any problems,

also plasmapheris is supose to be one time deal, then couple with ivg to restore your dead neuros with fresh ones( human donated) as dead neuros cannot rejuvenated themselfs.

I seriously would have a extented coversation with your neuro in regard of the care and neds to be used, this is our disease and you can not let the doctorts tell you what you can and cannot feel

you have to tell them what you feel, the way your feeling with ,your treatment ect.

best of luck (fighter)

Hi Minabeena,
I am going to respectfully disagree with some of what fighter posted to you. I have generalized MG and have never had a crisis where I had to go to the hospital. I began taking Cellcept 2000mg/day in December 2017, and when it didn't seem to be having much of an effect by July, my dosage was increased to 2500mgs per day. At that time, it was decided to start me on plasmapheresis (PLEX). I have had 11 PLEX treatments since late July. Although for the first couple weeks, it was 2x per week, the past 7 treatments have been 1x per week. In October we hope to stretch my treatments to once every 10 days, then once every 2 weeks. Insurance pays for the plasmapheresis treatments.

I go to an outpatient unit at a local hospital, and the whole process takes me under two hours, and then I go home. I am usually tired afterwards, but it doesn't affect everyone this way. I do not have a port -- my blood is drawn from a vein in my right arm, and the return blood comes in though a vein in my left wrist. It has all become routine for me.

For me the results have been astonishing. After the first few treatments my swallowing improved tremendously. My eyes opened wide, and the Mestinon (I take lots) started to be more effective. The couple flares I had during this hot summer lasted fewer days than usual. My horizontal double vision has mostly disappeared, and the little bit left responds to Mestinon now.

There are no plans to start me on IVIG. Rather, PLEX will be used until the Cellcept or another immunosuppressant does its job. Unfortunately I am not a suitable candidate for Prednisone.

Calling Russ. So much has been said in these last two posts, especially the claims made by (fighter) that, I for one, would appreciate some clarity. I have already demonstrated my ignorance in earlier posts of the life-span and rejuvenation of muscle junctions. I would really appreciate some clarity here if at all possible?

Thanks

Thank you all for replying, I’m on my actually in my third session of plasmapheresis as we speak.

I don’t really notice a huge difference but my symptoms weren’t really that bad so it’s kinda hard to gauge the effectiveness. Hopefully by the next two treatments I’ll fee like how I felt with the first treatment.

I did talk to my doctors about what Fighter said about replenishing with ivig and the told me they plan on putting in a permanent line in my neck that is not exposed and under the skin, so I can come in monthly for more plasmapheresis.

They said the type of myasthenia I have doesn’t react to Ivig.. which is true because each time it was done before I was intubated I didn’t notice much of a difference.

I’m really crossing my fingers that plasmapheresis is the answer. I just want to go back to the old me.

Minabeena, as of a month or two ago, tmarevans (Martha) who posts on this site was also undergoing regular PLEX treatments. She said it was like a miracle for her. I think she also said that she has a port in her neck, and she liked it because her hands were free during treatment. Maybe Martha will weigh in here.
- Nan

Hi, I have had PLEX early on with my MG. I never felt better than I did after these treatments. Unfortunately I am allergic to both FFP and Albumen so it nearly killed me and I could not complete the treatments but as I said I never felt better. Now after 2 years I am being taken off Imuran(thank god) and started on Cellcept today. If PLEX works for you you are better off than taking one of the poisons(as my Nuero calls the immunosuppresants).

Can you tell me what issues are with Imuran? Why is cellcept better. Thanks for the information. I’m pretty new to this.

Hi amyliz, the main problem for me was the problems it caused with my liver. It is my understanding that the liver is a kind of useful organ. I was marginal with the dosage of 2 pills a day but then my Nuero switched me to 3 and after a couple of months of this my liver numbers escalated to the danger zone and my primary care Dr. let me stop. Then my Neuro put me back on a single pill for 3 months and finally let me quit when my antibodies went back up anyway.
Personally I detested Imuran with all the other problems but with Dr.'s they pretty much cling to their numbers until the numbers fail them.
I can't say if Cellcept will be any better, I was told it would probably take 12 weeks to show a benefit.
For me the effects of the PLEX were great, for a month. Then I started to deteriorate and got on Prednisone, this really helped me but some people can't take it. Then I was placed on Imuran.

Hey amyliz, check out this link.
https://www.askapatient.com/viewrating.asp?drug=16324&name=imuran

The first post isn't from me, the pain and cramps are some of the annoying things and yes I too am now on crutches which I don't like very much.

Oh gosh I’m learning a lot of these treatments have such bad side effects. But I guess you have to weigh the good and the bad when you have this disease.

i have to refer to blinkgone blog, as well to others, which have the tendency to take all pills doctors recomend, i can assure every body that most of the doctors cannot give a total explanation of the side effects and the damages that they can cause,

druggs work for everybody totaly differently and with mg. it becomes a laberinth to search thru what is right. what i explain goes against what lots of people are subject,
i do not have the intent to say dont take it, as a patient with mg, and classified with generalize, bulbar b2-4 (extreme)
i feel that evrybody should be aware of the drugs they take, it is why i am so persistent that when a doctor gives a precription you should check with the following site, it is the most reliable and thruthfull site it will give you the total side effects and overview of any prescription, it is worth the effort.

the site is DRUGS.COM

you look, you become accointed with each drugg given, most of them are for organ transplant inmune systems, and not for mg per manufacturer,

then you are the only one whom will take the decition to take or not, my only worry is seeing to many people with mg, complaining of side effects.

mg. require lots of logic and commun sence, this is the only way to truly fight the ins and out of this desease and be in control of it

and ias i always said you need to be in sinc with your neuro
best of luck (fighter)

Plasmapherisis should alleviate symptoms dramatically but that's not always the case. I usually receive plasmapherisis when I am in a critical state it's been helpful whenever I have undergone the procedure sometimes more effective than other times. Like with all conventional treatment it has its side effects.