Plasmapheresis treatment

[salva76]

I heard that there is a treatment that looks to kill aps antibodies, called plasmapheresis treatment, that cleans the blood with adding donants plasma.it looks work, is anybody had treated with plasmapheresis? Any private hospital where does thia treatment?

[MaryF Administrator]

Hi there some papers for your perusal. MaryF

ncbi.nlm.nih.gov/pmc/articl...

ard.bmj.com/content/51/3/399

MaryF

[GinaD]

An alternative med doc once offerered this to me. My responce was that if he could show me info that plasmophoresis actually resulted in a patient testing negative for at least 18 months after treatment that I would then consider it. OR if my disease should progress to a point where it could not be easily controlled. He never mentioned it again.

[Zaney3622]

Hi salva76- I'm from the US, so I can't give advice about private hospitals, but I can comment on plasmapheresis. As we know with this disease, everyone is affected differently so different procedures and drugs are used on all of us.

I have successfully been treated with plasmapheresis. Everytime I had a MAJOR flare-up plasmapheresis saved my life. Keep in mind I had 5-8 plasmapheresis over 3 years, each plasmapheresis was followed by 8 weeks of chemo. Eventually this worked and I have been in remission for 3 years. Hopefully I will continue to be remission, but the plasmapheresis was a wonder "drug" procedure for me.

I do know that this did not some of my doctor's other patients. This is a "unique" diseases which calls for some "unique" medications.

Good luck.

[salva76 in reply to Zaney3622]

Hi zaney.

thank you for your answer.

i am desperated. I got several symptoms i cant do s normal life ( lost memories, migrains, spams, scramps,,,,, and my antibodies each tome they are higher...)

Afortunately my scans proof say that i dont have another trombotic event like o i had I am fed up. I am looking for a hospital anywhere in the world.

Could you tell me where you did your plasmaferesis?

Besides you said that they put you a chemo after the treatment..wich chemo .was it Rituximab?

Thank you for ypur answer we are desperated and we are discussing about treatment like a chance for improving .

Please i would be so glad if you answer me.

Many Thanks

[Frannyzaney in reply to salva76]

Hi Mary. My plasmapheresis was done at The Ohio State University James Cancer Center in Columbus, ohio - USA

Dr. Eric Kraut- my hematologist coordinated the plasmapheresis. I was the first he tried this protocol with and have been in remission since 2011

Yes it was rituxan- which was hard to get insurance to approve. After the pheresis I had 8 weeks @once a week of chemo (which lasted 5-7 hours). Then 3 months of cytosine via IV. Since then on 2000 mg day of Cellcept.

I only had one clot, but the APS attacked my lungs

Good luck

[salva76]

So you are better after this treatment? All your symptomos disapear?

Which problems did you have before the treatment? Lost memory, migrains, nerology problems,...have they dissapeared after the plasmaferesis?

Have you got your aps levels low or even disappear? Are you still having warfarina?

[LadyViolet]

A hematologist, trained at St Thomas' London, practicing here in Maryland offered this to me. He said it might give me relief with a severe flare, but was not a cure. I looked into it, it is procedurely. A variant of kidney dialysis, your plasma is extracted and donated "healthy" plasma is infused. It is an intense procedure that takes 3-4 inpatient hospital days. Nephrologists at least at my hospital, are in charge. I have Medicare and a private supplement plan so luckily for me, insurance coverage not an issue. Plasmaphoresis has/is used for a very wide range of situations and is expensive and effectiveness controversial. Private insurers and Medicaid HMOs probably require prior approval. Anyway, I have not done it, but will consider. Had 4 ER visits and 2 hospitalizations for APS in 2013. Hydroychloroquine giving me some relief, I think. Does this help? Best wishes.