Plasma Floresis

[Skyllark]

Has anyone done Plasma Floresis treatment? If so how was the results of this treatment?

[MaryF Administrator]

Hi I found this paper for you, with it being used in another situation regarding antibodies, with a favourable conclusion: ncbi.nlm.nih.gov/pubmed/120... Let us know how you get on. MaryF

[packerfan]

had it done several times, really did not do much, was on a schedule to have it done every third day but because nothing really happened it was abandoned and blood thinners were used instead. it is difficult to just lie there for about an hour being poked with needles and you are very tired after it is done.

[Frannyzaney]

I have undergone plasmapheresis and it was wonderful for me. I had every 3-4 months for about 3 years, followed each time with chemotherapy using rituxan. Last I had it was in 2010 and I have been in "remission" since. My numbers are low and I am back to being my "normal"self after being ill for 8 years.

The plasmapheresis saved my life. APS affected my lungs, so my lungs would fill with blood, I would get low on oxygen and the only procedure that helped clear my lungs was the plasmapheresis.

I know the disease affects all of us differently, therefore the "cures" are all different too. Best of luck

[Skyllark in reply to Frannyzaney]

Where did u do the treatment?

[Zezes-nan]

I had it for another medical condition before I was diagnosed with Hughes and I found that it helped

[salva76 in reply to Zezes-nan]

Hi zeszesnan ..next monday i ll start with t sessions of plasmapheresys .no rituximab. Because is so expensive i have to pay it by private service.

i a little worry about risk or secundary effects and besidess i hope it works for aps, i got a lot of neurology problems i can t work properly on my own bussiness . I wonder if it worked for you and since that you improved your symptoms.

Thanks you i looking forward your answer.

[Zezes-nan in reply to salva76]

Hi Salva76

I had 5 daily sessions about a month I was diagnosed with a neurological condition (Transverse Myelitis) and I found it did bring back some sensation as I was paralysed from the waist down.

I can't comment on risk or secondary effects with regards to Hughes as I wasn't diagnosed with that until a month or so after I had the Plasmapheresis.

The only thing I found difficult was having the shunt in as they put it the vein by the clavicle so I kept knocking it if I rolled over in the night and despite it being red and visible, nurses would go to grab my shoulder

I would talk to the Doctors about your concerns. Take a good book or something to listen to, as the sessions get very boring if you just lie there staring up at the ceiling.

Wishing you all the best

[Zezes-nan in reply to salva76]

Hi Salva76

Sorry for the later reply haven't been on line so busy playing catch up I hope everything went well for you.

I found my toes got warm after the first session which was weird as I couldn't feel my legs but knew my toes were warmer. Movement gradually improved and with a lot of help from Physio's I went from using a Zimmer frame to crutches, still not 100% but I'm mobile . Wishing you all the best

[Coblondie13]

I had several treatments and it helped save my life.

[salva76 in reply to Coblondie13]

Hi coblondie

I ll start the plasmapheresys next monday, only plasma exchange. Not chemo.

I got many neurology problems, thats is difficult to come back my job. I need to work urgently.

I wonder if that helps to you?

If you improved. .neurology problems. .and how often you have done it? If it works for long time?

Thanks you...