I was diagnosed in late 2015 with achr positive refractive myasthenia. I know that lab results are not definitive and the teaching hospital I was in did a test ( don’t remember what it was called) where they used electrical shocks ( for lack of a better word) that finally confirmed diagnosis.I had a rough go of it for about six months but am stable now living my new normal. I get plasmapheresis every eight weeks and IVIG every four weeks. I have been crisis free since mid 2016.
A member of my MG support group was on plasmapheresis. He found a neuorologist who knew MG and with proper medication, he no longer needs the very expensive, and difficult to get to a facility that provides this treatment. He has been stable since he started the recommended medication and is back to a 'normal' life. When he was getting frequent plasmapheresis, his symptoms were such that he could not drive, just stayed dependent on that treatment but never improved to a 'normal'. The medication he now takes eliminated the need for Plasmapheresis, IVig, and stabilized his MG. He is much happier not being dependent on plasmapheresis. This is the first case of MG that I have heard of being on such treatments as you are receiving for so long.
@harley22 Good morning! I put a link to May Clinic’s site on MG. https://www.mayoclinic.org/diseases-conditions/myasthenia-gravis/symptoms-causes/syc-20352036
It doesn’t explain the mechanisms of plasmapheresis, but. I actually had the process several years ago when I was donating plasma. Simple but boring. An IV is placed in your arm and you are hooked up to a machine (looks similar to dialysis. The plasma is separated from your blood and thrown away. Then the blood is returned to you.
Why did the doctor suggest a central line (line in your chest)?
Interventional radiology called me to set up an appt for the catheter to be placed in my chest above my breast area.
They said I need a large bore needle to take blood out and put albumin in.
If my veins are good,it could be placed in my arm, but I’m a hard stick as I learned when I was getting g IVIG infusions.
I’m not a fan of that line being placed in my chest, can’t swim or get it wet either .
I’m so afraid of it getting infected.
@harley22 Good morning! I put a link to May Clinic’s site on MG. https://www.mayoclinic.org/diseases-conditions/myasthenia-gravis/symptoms-causes/syc-20352036
It doesn’t explain the mechanisms of plasmapheresis, but. I actually had the process several years ago when I was donating plasma. Simple but boring. An IV is placed in your arm and you are hooked up to a machine (looks similar to dialysis. The plasma is separated from your blood and thrown away. Then the blood is returned to you.
Why did the doctor suggest a central line (line in your chest)?
The hospitals dept of interventional radiology called to schedule the insertion and it was explained to me.
The needles to extract the blood and to replace with albumin needs to have a large lumen, and I am a hard stick, so it needs to be done in my chest.
I’m not keen on having this type of line inserted due to infection chance at site of catheter.
Last Nov I was septic and almost died when I had a small tear in my small intestine and I don’t want to chance getting an infection again.
I have been confirmed since December 2015 after three exacerbations in two months time. I am receiving excellent care from University of Alabama at Birmingham teaching hospital. I get plasmapheresis every eight weeks and ivig every four weeks. I am stable with this.
A member of my MG support group was on plasmapheresis. He found a neuorologist who knew MG and with proper medication, he no longer needs the very expensive, and difficult to get to a facility that provides this treatment. He has been stable since he started the recommended medication and is back to a 'normal' life. When he was getting frequent plasmapheresis, his symptoms were such that he could not drive, just stayed dependent on that treatment but never improved to a 'normal'. The medication he now takes eliminated the need for Plasmapheresis, IVig, and stabilized his MG. He is much happier not being dependent on plasmapheresis. This is the first case of MG that I have heard of being on such treatments as you are receiving for so long.
My case is refractive and a very difficult one to treat. There are drawbacks to every med for this so far and we’ve tried several. Plasmapheresis doesn’t leave me in bad shape and my only ill effect is compromised immune system which also comes from the autoimmune issue.
@harley22 Good morning! I put a link to May Clinic’s site on MG. https://www.mayoclinic.org/diseases-conditions/myasthenia-gravis/symptoms-causes/syc-20352036
It doesn’t explain the mechanisms of plasmapheresis, but. I actually had the process several years ago when I was donating plasma. Simple but boring. An IV is placed in your arm and you are hooked up to a machine (looks similar to dialysis. The plasma is separated from your blood and thrown away. Then the blood is returned to you.
Why did the doctor suggest a central line (line in your chest)?
I had a central line in my chest for a few months also for plasmapheresis before getting ports specifically for that. The chest central line was called something I can’t remember but two lines with little caps were outside my chest and it really wasn’t bad. It was limited due to not getting it wet and had to be vigilant about infection. After this all worked so well for me they removed that and placed two implanted Bard power ports in my chest on the other side and they have been great.
Interventional radiology called me to set up an appt for the catheter to be placed in my chest above my breast area.
They said I need a large bore needle to take blood out and put albumin in.
If my veins are good,it could be placed in my arm, but I’m a hard stick as I learned when I was getting g IVIG infusions.
I’m not a fan of that line being placed in my chest, can’t swim or get it wet either .
I’m so afraid of it getting infected.
@harley22 I certainly understand your worry about getting an infection. The nurses/techs who do the plasmapheresis will teach you how to care for the implant site. I was an oncology nurse and we dealt with central lines and no one got infections. We were forever careful about cleaning the site and making sure the patient was also.
When is your appointment for radiology?
@harley22 I certainly understand your worry about getting an infection. The nurses/techs who do the plasmapheresis will teach you how to care for the implant site. I was an oncology nurse and we dealt with central lines and no one got infections. We were forever careful about cleaning the site and making sure the patient was also.
When is your appointment for radiology?
I’ve decided I’m not doing it.
I’m not willing to risk it because from what I’ve read and heard, the plasma exchange may not work for me, or the symptoms get better, but no for long and more treatments are needed.
I’ve been thru a lot and am afraid to even try this, when I would much rather take a drug which has success rate.
I’ve decided I’m not doing it.
I’m not willing to risk it because from what I’ve read and heard, the plasma exchange may not work for me, or the symptoms get better, but no for long and more treatments are needed.
I’ve been thru a lot and am afraid to even try this, when I would much rather take a drug which has success rate.
Last Nov I perforated my small intestine and had emergency surgery, and became septic.
For 6 mos my incision didn’t heal, I had a wound vac, and was on antibiotics around the clock for weeks, IV.
I am really afraid to have this line inserted, and a risk of infection happening to me again, hence my decision to not go through with it.
Unfortunately my insurance co won’t approve the drug Retuximab until I meet the protocol which plasma exchange is one of them.
The other two, IVIG and steroids have been done in the past, and they did not work for me.
Only thing left is the plasma exchange, that’s why my neurologist suggested it.
The MG support group I started in August 2018 is named MG RGV Support Group.
The support group information is on the MGFA website (myastheina.org) under support groups. Email or call me using that information. This support group is located in the Rio Grande Valley, deep south Texas! We meet once a month. Best group of people ever!! Every bit of MG educational material I find from CREDIBLE sites is emailed to the whole group when I receive it. EDUCATION is your defense for ANY autoimmune disease. KNOW YOUR DISEASE!! I have SO MUCH information from credible sites that I email to anyone who wants to learn MG.
I am an MG newby (very recently diagnosed although I’ve had symptoms for years) and would love to learn of reputable resources for information. My neurologist is not good at providing education about this disease. I have so many questions and feel like I’m on my own. Information found online is sometimes conflicting, especially regarding medications I should avoid. Any direction you can provide will be greatly appreciated!
Connect
Connect
Like
Helpful
Hug
A member of my MG support group was on plasmapheresis. He found a neuorologist who knew MG and with proper medication, he no longer needs the very expensive, and difficult to get to a facility that provides this treatment. He has been stable since he started the recommended medication and is back to a 'normal' life. When he was getting frequent plasmapheresis, his symptoms were such that he could not drive, just stayed dependent on that treatment but never improved to a 'normal'. The medication he now takes eliminated the need for Plasmapheresis, IVig, and stabilized his MG. He is much happier not being dependent on plasmapheresis. This is the first case of MG that I have heard of being on such treatments as you are receiving for so long.
-
Like -
Helpful -
Hug
1 ReactionInterventional radiology called me to set up an appt for the catheter to be placed in my chest above my breast area.
They said I need a large bore needle to take blood out and put albumin in.
If my veins are good,it could be placed in my arm, but I’m a hard stick as I learned when I was getting g IVIG infusions.
I’m not a fan of that line being placed in my chest, can’t swim or get it wet either .
I’m so afraid of it getting infected.
-
Like -
Helpful -
Hug
1 ReactionThe hospitals dept of interventional radiology called to schedule the insertion and it was explained to me.
The needles to extract the blood and to replace with albumin needs to have a large lumen, and I am a hard stick, so it needs to be done in my chest.
I’m not keen on having this type of line inserted due to infection chance at site of catheter.
Last Nov I was septic and almost died when I had a small tear in my small intestine and I don’t want to chance getting an infection again.
-
Like -
Helpful -
Hug
1 ReactionI have been confirmed since December 2015 after three exacerbations in two months time. I am receiving excellent care from University of Alabama at Birmingham teaching hospital. I get plasmapheresis every eight weeks and ivig every four weeks. I am stable with this.
-
Like -
Helpful -
Hug
2 ReactionsMy case is refractive and a very difficult one to treat. There are drawbacks to every med for this so far and we’ve tried several. Plasmapheresis doesn’t leave me in bad shape and my only ill effect is compromised immune system which also comes from the autoimmune issue.
-
Like -
Helpful -
Hug
1 ReactionI had a central line in my chest for a few months also for plasmapheresis before getting ports specifically for that. The chest central line was called something I can’t remember but two lines with little caps were outside my chest and it really wasn’t bad. It was limited due to not getting it wet and had to be vigilant about infection. After this all worked so well for me they removed that and placed two implanted Bard power ports in my chest on the other side and they have been great.
-
Like -
Helpful -
Hug
2 Reactions@harley22 I certainly understand your worry about getting an infection. The nurses/techs who do the plasmapheresis will teach you how to care for the implant site. I was an oncology nurse and we dealt with central lines and no one got infections. We were forever careful about cleaning the site and making sure the patient was also.
When is your appointment for radiology?
I’ve decided I’m not doing it.
I’m not willing to risk it because from what I’ve read and heard, the plasma exchange may not work for me, or the symptoms get better, but no for long and more treatments are needed.
I’ve been thru a lot and am afraid to even try this, when I would much rather take a drug which has success rate.
Last Nov I perforated my small intestine and had emergency surgery, and became septic.
For 6 mos my incision didn’t heal, I had a wound vac, and was on antibiotics around the clock for weeks, IV.
I am really afraid to have this line inserted, and a risk of infection happening to me again, hence my decision to not go through with it.
Unfortunately my insurance co won’t approve the drug Retuximab until I meet the protocol which plasma exchange is one of them.
The other two, IVIG and steroids have been done in the past, and they did not work for me.
Only thing left is the plasma exchange, that’s why my neurologist suggested it.
-
Like -
Helpful -
Hug
1 ReactionI am an MG newby (very recently diagnosed although I’ve had symptoms for years) and would love to learn of reputable resources for information. My neurologist is not good at providing education about this disease. I have so many questions and feel like I’m on my own. Information found online is sometimes conflicting, especially regarding medications I should avoid. Any direction you can provide will be greatly appreciated!
-
Like -
Helpful -
Hug
1 Reaction