Hey Kelley,
I am tryng to rememvber for me when I started plex, I think I went at first 3x the first week then 2 x the second then I was going every 2 weeks. It does work, but I get very tired afterwards and I am tired the next day. Everyone is different. I have been pretty sick since the end of April so this summer I was going 3x a week but now go every 10 days.

When are you to start? I have 2 bard power ports that they use when I have treatment.
You can call me any time...
hugs
Annette

Hi Annette,

Thank you. I have to see the Nephrologist first then he will order the treatments. I just saw my neuro yesterday and they were going to fax the referral today.

I will keep you updated as soon as I find out something.

Blessings,
Kelley

Kelley
I start plasmapheresis tomorrow for the first time. I will let you know how it goes. I will have four more over the next 10 days. Should be interesting to see if it helps. My current symptoms are drooping of my right eye, shortness of breath and fautigue. I am hoping it gets better with this treatment.....only time will tell!

Big hugs....hang in there!

Hi Karla,

I hope your treatments go well tomorrow and over the next few days. I would like to hear about your experience if you want to share.

I have the same symptoms but not so much of the droopy eye lid. My vision is a little strange. I do not get a typical eye droop. One eye will appear smaller than the other and the eye brow on the same side is lower than the other. Sometimes it will switch sides. It also feels like I just can't really open my eyes as wide as normal.

The shortness of breath comes on certain days, but not every day. The fatigue is pretty significant right now and I have no endurance. My body feels very heavy, like I am dragging it through quicksand and everything I do is a major effort for me.

I hope you get to feeling better very soon.

Blessings,
Kelley

I heard from the nephrologist today and he said he was going to put in a "Port Pump" to stay in for the duration of my initial PLEX treatments. Has anyone had an indwelling device placed for a course of PLEX and then removed afterward.

Just wondering what type of device this is and where it will be located. I have an appointment on Tuesday and I will ask then, but the doctor was difficult to understand over the phone so I did not really get what he was talking about.

Kelley

Kelley,
I have 2 bard power ports completely under the skin, would not go any other way. they work great for me.
Annette

My Permacath line was placed today and I start PLEX on Monday. It was not as bad as I expected. It is just a little sore, but as long as I don't move my right side it is okay.

I am also having my gallbladder out on November 15. We had to coordinate it to be done within a week of my last PLEX treatment. Has anyone else had surgery with MG other than thymectomy (that will be done next year when my FMLA builds back up again)? What was your experience?

My surgeon said I have to be inpatient for one night or more if I misbehave. I hope this MG behaves. They don't let you rest in the hospital.

Kelley

yes, I have had several surgeries, last year partial kidney removal due to cancer, this summer, ear surgery. I was in the hospital last year 4 days, 2 in icu then this summer over night normally it would have been a day surgery but due to mg they kept me over night.
glad today went okay for you. hugs,
Annette

Kelley, good Luck with your PLEX !!! Sending good thoughts your way!!!

Carole

Thank you Carole.

Annette, that sounds like what they are planning for me. Hopefully, just overnight.

Carole
I just finished my plex treatments. I can definitely feel the change. I have more energy, my eye is hardly drooping and my breathing is better. They made me nauseous for sure, but I would say it is worth it. I am waiting to hear when I will do it again. Good luck girl!

Hi Carole,

I am so glad to hear your plex treatments helped and you are feeling better.

I am just finished #3 and I have two more to go next week. I only had nausea with the second one. It was the worst one of the three. My blood pressure dropped really low as well. They got an order for Zofran from my doctor and I had them give it to me after the third bottle of Albumin went up. I did not have any BP or nausea problems today. It seemed to really make a difference for me. I am still waiting for my energy level to come up, but I am not finished with the treatments yet. I am sure it will help.

I am scheduled to go every six weeks after this round.

I hope you keep on feeling good!
Kelley

Hello to all !! I have not been on in a while, so many of you probably don't know me. I was diagnosed with MG Jan. of 2011 had a thymectomy (full sternum as if open heart) my symptoms improved and I was able to go back to work in May however, by Nov. I could no longer function. I have been dealing with uncontrolled MG since. I finally got in at USF in October and have had two rounds of plasmapheresis 10 days inpatient treatment every other day and scheduled for admission again the first of Dec. I am reading that you all have permanent ports they put a temporary shily catheter every time. My question how do I get the port and outpatient treatment? My Neurologist is telling me that due to the aggressiveness of my disease I will require ongoing plasmapheresis. I want the port and outpatient treatment!!! Any suggestions will be greatly appreciated.

Thanks in advance, God Bless you all !!!
Charlotte

Charlotte,
There are a few on here with permanent ports. Message txkiki53 for her info. You might need to start a new thread to see who has what kind of port/catheter for plex
I've been lucky in that my peripheral veins are good and haven't needed a port. (fingers crossed my veins stay big and strong:)

hugs
sherry