HI Annie!
I get plasmapheresis every 4-5 wks and my usual is 2 treatments separated by at least a day. I get fairly weak at the end of the month and call and schedule my next set. I should just have regularly scheduled appts - but I always swear I am going to get better and not need it the next month.

I tried to have IVIG but other than a wicked headache - it didn't do much for me. Just from hearing what other MGers do - it seems that some people just respond better to one or the other treatment.

I had looked up the vortex port and am thinking about getting one. Can you feel it/see it? My kids get very upset when they see things. However, after almost 2 years of monthly plex - my veins are starting to give out on me! I think the steroids don't help much either!

I would say if the plex is working for you - stick with it for now! It's sooo comforting for me to know I have a go to therapy that will help me!
Nicole

Hi Annie,
Plasmapheresis saved my life, back around New Years. (Many treatments, over several weeks. It is a very commonly-used therapy, among many Snowflakes here.)

It remains my very favorite therapy. period. When receiving Plasmapheresis? I felt like I was getting a big, warm hug - from Mother Nature herself.

I was switched to Rituxan and IVIG, after Imuran and Plasmapheresis did not work for me, in the long run.
- Ross

I had plasmapheresis in june 2010 with my last crises and it worked.
Chuck

Hi Annie. I get plasmapheresis weekly too. Glad you got your vortex port. For some reason, they are reluctant to let me have them. Wish they would because I am a hard stick especially after almost 2 years.
They is another woman who has the vortex power ports.

So glad they are helping. What other drugs are you on?
I first had IVIG for over a year and then moved to plasmapheresis.
It works great in keeping me safe with symptoms.

I know you are young, hang in there. You are such a warrior. Hope you kick MG to to curb soon!
Hugs,
Sherry

Hi Annie,
I got plasmepheresis several times last year. While I was hospitalized with crisis, I had 5 treatments spaced every other day, which pretty quickly brought me from not being able to swallow or breathe on my own, to being able to eat and sit up and be released from the hospital. Then after I was released I came back for outpatient treatments, at first twice a week then once a week as I got better. I had a tunneled catheter. After about a month of this I switched to IVIG for insurance reasons, and it's hard for me to compare which one worked better because I don't know what amount of IVIG is comparable to a plasmapheresis treatment. It seems like plex kicks in faster and also wears off faster. When I was in crisis it took 2 or 3 treatments to notice an effect, but once I was already feeling okay and was getting them once a week, I'd feel better as soon as they unhooked me from the machine, which was very satisfying. I joked that I was taking weekly trips to the plasma spa. And IVIG makes me feel a bit woozy after i get it, plus I get IV steroids with it and that makes me speedy and bloated. But after a couple of days of feeling weird, the IVIG knocks out my symptoms for several weeks. I agree, either of the plasma treatments are an amazing thing to have when you need them!

Nicole, I thin the votex port is a great thing to look into. Mine is placed right below my bra line on my left side which is an unusual place for a port but my surgeon was very understanding about my cosmetic concerns about having a port so he put it in a place where it is never seen unless I'm in a bathing suit! And it does bulge out like a lump under your skin but it is such a subtle lump all my friends and family say they never would've noticed it if I didn't point it out.
I wouldn't suggest bringing you kids to the treatments however. The first couple of treatments I had with my port were a bit unsettling to me because of the whole concept of having a device implanted under you skin, but now I am use to it and am so grateful to have it! I was a hard stick too and was always covered in heating blankets, given iv fluid, and forced to drink large amounts of water to keep my flow at a steady rate. Now my treatments go smoothly and faster!

Hey sherry! Thanks for the support I recently got a thymectomy which I truly believe will help me. On to pod plasmapheresis I am also on mestinon 50mg five times a day, 60mg of prednisone and I just started cellcept last month.

Thanks for all the comments I appreciate it
Annie

I was stunned by the price tag of the IVIG - 10K per treatment about. It is outpatient. I wonder how that compares to Plasma?

I got relief from the IVIG. I know the insurance won't cover it forever, so I am curious to see what they would do with the plasmapheresis.

Good luck with your treatments Annie. I always like to hear when something works.

QUESTION:

I had some side effects from the IVIG and am also curious as to the side effects from plasmapheresis?

dan, I get plasmapheresis as an outpatient and its about 2 thousand dollars a treatment.
as for side effects, I think some people experience symptoms similar to ivig (headache, nausea, etc) however I have never experienced any of these. the only side effect I have from plasma exchange is a bit of anemia so I take an iron supplement and eat red meat when I can.
-Annie

I have plasmapheresis, and it makes me able to function. Ivig gave me meningitis and I was sick for about ten days. On day fourteen, I had an excellent day.
I have been having plex twice a week, but it only lasts for two days then I am prone to a severe crisis. I am currently trying to get it three times a week while I push to get something that can help with the antibody production. I start feeling better about half way through the treatment, then feel better and better after they unhook me.
I have a tunneled catheter in the internal jugular. I may need to get something more permanent as I have had this for almost six months now.
Does the vortex catheter hurt when they hook you up?

Plasmapharesis saved me in crisis as well. The only time I've had it. I had it 3x and it was heavenly. I felt great, except being post surgical.

The first couple of treatments with a vortex port will hurt when they access you because the area will be tender still. An hour before my pheresis appointments I put a cream on the site of my vortex port to numb it. This helps a lot and makes each treatment painless. However if you have to get treatments more than twice a week you can have some pain when they put the needles in just because you are never given sufficient time for the holes from the needles to heal.