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Help! Plasmapherisis & Ports

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Old 07-25-2018, 11:23 AM   #1
Lin_Z
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Default Help! Plasmapherisis & Ports

Hello all,

I am post-thymectomy (2016) and was asymptomatic for about a year, but this year my symptoms have come back to almost pre-surgery levels.
I would like to be treated with Plasmapherisis (the only thing that's ever really worked for me) as a maintenance tool.
My current MD suggested more drugs with more serious side effects.
No Thanks.

To those who have had PLEX:

Did you have a port placed?
How often did you receive plex?
Were you able to have your treatments on an outpatient basis?

The problem I am running into is that they are not able to get access for plex on either of my arms, so I had to be admitted and have a jugular line placed. My doctor will not recommend it as a maintenance treatment because I would have to get the line put in & taken out after every treatment. I have read that some people have used power ports, but cannot find enough info to bring it to my md.

Thank you in advance for your all your help!!
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Old 07-26-2018, 12:28 AM   #2
ErinBear
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Dear Lin Z,

I'm sorry to hear that you are having more symptoms with your MG, and regular plasmapheresis treatments may be in your future. I would encourage you to have careful discussions with your doctor, and also look thoroughly into your insurance coverage regarding how well they would cover regular PLEX treatments. Unfortunately they are very expensive (if you live in the United States, that is; even with insurance coverage, the co-pay is extremely high). You may want to consider talking with your doctor about trying some changes in medication along with plasmapheresis as needed. That way, you might be able to do plasmapheresis less often. Plasmapheresis is a good treatment, but it, too, is not risk-free. It's good to talk with your doctors and try to weigh the pros and cons of all the available treatments.

I get plasmapheresis on a regular basis. Having a jugular line placed is usually a short-term solution for a few days or week, until a longer-term access line can be placed. Usually the next step is a permacath, which is implanted below the collar bone. It is not permanent, but they can last for perhaps six months or so. If it is determined the patient will continue to need plasmapheresis over the long-term, the medical team will send the patient to a vascular surgeon to talk about creating a fistula. A fistula is usually made in the lower or upper arm. Sometimes the surgeon can make the fistula by combining the patient's blood vessels together to make a bigger blood vessel that can be used for treatment. Other times, they use an artificial graft. I have a fistula, and it is what we use for my treatments.

Yes, it is possible to have plasmapheresis on an outpatient basis. I am unusual, in that my myasthenia gravis symptoms are severe. I have treatment three days a week. We've tried to do treatment less often, but then I have more trouble with walking, breathing, and swallowing, and sometimes end up in the hospital when we do two days per week or less.

I do have a power port also, but we do not use it for plasmapheresis. We use it for IV access when needed during hospitalizations, etc.

I hope this helps to answer some questions. I hope you can get the treatment you need. Please let us know how things go for you.

Take care,
Erin
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Old 07-27-2018, 11:34 AM   #3
6thCranialNerve
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Quote:
Originally Posted by Lin_Z View Post
Hello all,

I am post-thymectomy (2016) and was asymptomatic for about a year, but this year my symptoms have come back to almost pre-surgery levels.
I would like to be treated with Plasmapherisis (the only thing that's ever really worked for me) as a maintenance tool.
My current MD suggested more drugs with more serious side effects.
No Thanks.

To those who have had PLEX:

Did you have a port placed?
How often did you receive plex?
Were you able to have your treatments on an outpatient basis?

The problem I am running into is that they are not able to get access for plex on either of my arms, so I had to be admitted and have a jugular line placed. My doctor will not recommend it as a maintenance treatment because I would have to get the line put in & taken out after every treatment. I have read that some people have used power ports, but cannot find enough info to bring it to my md.

Thank you in advance for your all your help!!
I would ask about Immune Globulin for treatment of MG. It is very expensive; but specialty pharmacies have financial aid for those who cannot afford it. Plasmapheresis is OK; but IVIG is definitive.
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