I had thirteen plasmapheresis (or plasma exchange) treatments in 2010 and they saved my life. I’ve also had a number of IVIG treatments and they didn’t work nearly as well for me.
Everyone is different. Some people have better results with PE and some have better results with IVIG.
I went from near death in Feb 2010 to a full recovery from CIDP in roughly 5 months because of PE (and a helluva lot of determination busting my ass in rehab).
Hope you have as much luck with them as I did.
I’ve had just 8 doses of IVIG during my experience so I wasn’t on it long enough to build any kind of tolerance.
However, if you are indeed building up a tolerance to IVIG perhaps your doctor should consider plasmapheresis treatments.
They’re not exactly a ton of fun but there’s no question my body responded much better with plasmapheresis treatments than it did with IVIG.
I am sorry that your mother has developed CIDP.
It is difficult to say what the administration schedule of IVIg should be, as it depends completely on the individual’s response. Still, when first fighting this disease, people usually get 2 gram of IVIg per kilogram of body weight over five days, then 1 g/kg at least monthly for several months. By that light, your mother is overdue. However, did she have significant improvement in at least one area (strength in her legs or hands, or a reduction in sensory issues)? If she did, has she declined since then? If yes to both of those, I would suggest that the usual dosing and schedule be followed. It might be worthwhile to try a more aggressive approach, though, if no to either question.
The Peripheral Nerve Society has published guidelines on dealing with CIDP ([URL=”http://www.pnsociety.com/Guidelines_CIDP.pdf”]http://www.pnsociety.com/Guidelines_CIDP.pdf[/URL]). Note, though, that these are only guidelines and that you and your mother should push the neurologist if what s/he is doing does not seem to work. However, you will need patience, as effects can a few months to see.
As to plasmapheresis, that is part of my treatment plan. It works, but it carries some risk as well. If your mother does not have good venous access, she would need a catheter. The care and maintenance of one is a chore, and you need to carefully evaluate if her support team will do the necessary work. The actual process of plasmapheresis carries risk for fainting during and for a couple of hours after the procedure. Before starting plasmapheresis, I would discuss it with each of her specialists.
Another issue with plasmapheresis is that it often does not work without other therapies as well. In my case, I take prednisone (large dose once per week) and Imuran (typical dose). Others do well with just plasmapheresis and a low dose of prednisone. You would need to evaluate her likely response to the other drugs she would most likely need to take.
Godspeed in finding an appropriate treatment,
Lynette, Thanks for your reply. That is encouraging news because it seems like every other blog I have read had to have it done over and over. Hopefully mine was diagnosed quickly so that I won’t have any permanant damage. I felt like a million dollars for a week after my first 5 treatment but yesterday i started feeling tired but thank goodness no weakness. I am trying to lay down when I start to feel tired because I agree with you fatigue and stress are my worst enemies. We just have to listen to our bodies and take care of ourselves.
I wrote a long reply about plasmapheresis a while back. Please follow this link and look for my handle (MarkEns): [URL/]http://www.gbs-cidp.org/forums/showthread.php?t=3717[/URL].
To answer the questions you posed: plasmapheresis can be done as an outpatient, even the first time. Usually, it is done every other day, but sometimes it is done every day. As the thread above indicates, yes it does work. In my case, it keeps me living a nearly normal life. While I cannot predict your response, in my case, yes, I will have to do plasmapheresis over and over.
As to how we contracted this disease, nobody knows. As Dawn said, CIDP is not usually associated with a disease, unlike GBS, which often (perhaps about half the time) is.
Feel free to PM me if you have more questions about plasmapheresis.
I had plasmapheresis for nine weeks, 3 times a week. I was in a pretty bad state by the time we tried it, depsite having been on gabapentin and morphine for pain, with semi-regular IVIg (every 5-6 weeks at that point). I had so much discomfort that I could not wear shoes at all, and clothes were causing quite significant allodynia.
I found that it took about two-three weeks before I felt any sort of real improvement. Just make sure that you are getting the calcium top up regularly, as I found that this was the worst side effect and the potential downstream problems with osteoperosis, etc. are significant.
It was a slow but sure improvement, so don’t give up yet. Take care – it is invasive, but it certainly changed my situation hugely. 🙂