Jump to content

Plasmapheresis (PLEX) - Advice/Experiences?


Arez2row

Recommended Posts

I have been diagnosed with AAG, and was previously receiving IVIG every 3-4 weeks (1g/kg). In August, I switched to SubQ Immunoglobulin, and have not had a good response to this treatment.. and have experienced a resurgence of symptoms (orthostatic intolerance, GI dysmotility... typical AAG stuff) despite increasing other medications (ie. midodrine, florenif, etc.). 

My doctors are say keeping this disorder in balance will be a lifelong challenge.. which can be disheartening at times. They are suggesting the next step, to be decided soon, is plasmapheresis (PLEX). I was wondering if anyone could share their experiences with this treatment. How has it worked for you? How often do you receive treatments? Do you have a permanent line, etc.? 

Anything is greatly appreciated!! Thanks in advance

Link to post
Share on other sites
  • 3 months later...
On 11/12/2016 at 6:31 PM, ares22 said:

I have been diagnosed with AAG, and was previously receiving IVIG every 3-4 weeks (1g/kg). In August, I switched to SubQ Immunoglobulin, and have not had a good response to this treatment.. and have experienced a resurgence of symptoms (orthostatic intolerance, GI dysmotility... typical AAG stuff) despite increasing other medications (ie. midodrine, florenif, etc.). 

My doctors are say keeping this disorder in balance will be a lifelong challenge.. which can be disheartening at times. They are suggesting the next step, to be decided soon, is plasmapheresis (PLEX). I was wondering if anyone could share their experiences with this treatment. How has it worked for you? How often do you receive treatments? Do you have a permanent line, etc.? 

Anything is greatly appreciated!! Thanks in advance

Did you ever start PlEX? Mayo published cases studies for AAG and said they think IVIG are basically equal, but that the key was a combo therapy of either of those with a powerful immunosuppressive drug.  Because I know roughly 400+ patients who get IVIG, PLEX and Rituximab, I can tell you CIDP patients are the most comparable to AAG and they actually do well on SCIG, but if they don't do well on IVIG or SCIG they do best where they alternated between IVIG and PLEX all in the same week

Link to post
Share on other sites
On 2/22/2017 at 8:06 PM, RichGotsPots said:

Did you ever start PlEX? Mayo published cases studies for AAG and said they think IVIG are basically equal, but that the key was a combo therapy of either of those with a powerful immunosuppressive drug.  Because I know roughly 400+ patients who get IVIG, PLEX and Rituximab, I can tell you CIDP patients are the most comparable to AAG and they actually do well on SCIG, but if they don't do well on IVIG or SCIG they do best where they alternated between IVIG and PLEX all in the same week

Hi RichGotPots,

I ended up going back to IVIG (intravenous route) as I had failed experiences with Sub-Q Ig. Since I had frequent bouts of aseptic meningitis with IVIG previously, we switched brands.. and divided my dose (60g) over 2 days instead of one, every three weeks. I've done 2 cycles of this so far, and it's definetley helping- but from experience, I know it takes time. 

Still having trouble getting POTS/OI under control again, but have started IV saline, and increased meds.. so hopefully that, and more time on IVIG will help.

I am seeing specialists again in the coming weeks, and will see about combining therapies, etc. It has been brought up before, but we have been hesitant due to increased risks, etc.

Thanks for all of your information, and help. I appreciate it.

Best wishes. 

Link to post
Share on other sites
  • 2 months later...

I saw a document from one of the Mitochondrial foundation pages where a doc said that patients with mito who had Dysautonomia tolerated sub q better. To my knowledge that is the first time I ever heard that. CIDP doctors don't even pay attention to that.  But you are the second person I know with Autoimmune Dysautonomia who failed Sub q

Link to post
Share on other sites

Archived

This topic is now archived and is closed to further replies.

×
×
  • Create New...