Any experience Plasmapheresis

[401dave]

If anyone knows anything about the success of Plasmapheresis ? I am in a extremely bad flare and I can't get out of it . Antibiotics won't work anymore and ivig made all my symtoms way worse. It's pretty much the only shot I have left of a treatment.

[Rachel]

IVIG made my son's symptoms worse also. After the 3rd treatment, his doctor realized that he needed Plasma Exchange. I know to get it approved with insurance, he used medical research articles. My son was 14 when he started treatment. The plan was to do 3 weeks of 3 a week treatments and then go down to 2 treatments 2 a week for 6 weeks, and then one treatment a week for 6 weeks and then 1 treatment every other week for 6 weeks. However,after my son dropped down to 2 a week treatments, about 2 weeks later his worse symptoms returned and he had to go back up to 3 treatments a week for awhile. I suspect the amount of treatment needed depends on the number of antibodies in the body and the body systems that are being affected. Before starting treatment, he had the surgery for a port. Treatment is much easier with a port. If you go this route< i would suggest that after you finish the treatment, you start on Low Dose Naltrexone. It helps regulate the immune system. My son started on it after the last treatment he had and he has not been sick or had any symptoms return.

[401dave]

Thank you that definently gives me some hope. Usually antibiotics take me out of a flare even if there is no infection. Some medicines like prednisone or clonazapam if I'm on them for to long will put me in a bad flare but antibiotics always seems to take me out of them for some reason but I've used so many there starting to lose effect. I was so sick a month ago and when I did Ivig I thought it was gonna be a huge turn around for me but I ended up twice as bad an now I'm desperate being stuck in this flare. I just didn't know Plasmapheresis would require so many treatments. Of course I'm still willing to do it but does everyone have that many?

[Rachel]

I don't know the answer about the number of treatments. It will depend on how quickly your body responds and if your body will stop making the antibodies. My son's body could not fight off any infections, so his body kept making them until the treatment finally wiped them out. His immune system was suppressed with this treatment. Have you been checked for other autoimmune antibodies? My son's doctor always suspected he had others like AAG which is very hard to diagnose in children. Gillian Barra was always a concerned because all my son's neurological symptoms got worse after having a double round of flu. My son's case was complicated.

[401dave]

Well my situation I think is pretty crazy. Long story short I had inflammation is my nose from a neti pot that I herd would be good to prevent infections so I started using it and I was putting all kinds of thing like a lot of salt and tea tree oil and it burned my nose an flared my symtoms , so I had to take prednisone for the swelling so the antibodies could start to come down in which flared my symtoms even worse so now I'm stuck . So I don't even have an infection going on. So I'm confused as to why the antibodies aren't coming down on there own. So I pray that treatment works for me.

[Rachel]

From what I understand about these antibodies, they will keep reproducing as long as they are in the body. Once the body accepts them, the body no longer fights them off. So when you get any new infections, you add fuel to the fire. Once the antibodies take over, it gets harder for the body to fight off any infections. If antibiotics will not fight off the infection, then you are in another losing battle. My son tried 6 months of antibiotics before doing IVIG and his symptoms kept getting worse. Once you get the antibodies out of your system, your immune system should reset itself and antibiotics should fight off infections.

[401dave]

I hope so. The thing is I can fight infections, I didn't have any infection when I took prednisone and the prednisone flared me up bad then I decided to do ivig and it made me so much worse. I think I dug myself into a deep hole with the ivig. But I'm a mass general in Boston now , I had to be admitted my symtoms are so extreme. So hopefully they give me the Plasmapharesis and it works. It's pretty much my last chance at this because antibiotics don't seem to be working.