Questions Re: IVIG vs. Plasmapheresis
AnonymousApril 8, 2010 at 1:19 pm
As I read through the posts I see that almost everyone has IVIG rather than Plasmapheresis. I had 5 treatments of PE (Plasmapheresis) over 10 days when first diagnosed in Dec, and it worked wonders! It was very wierd to watch them throw 3.5 liters of my blood in the trash (just the plasma that had been removed) but each treatment resulted in more body parts moving. But this does not seem to be a common treatment. The IVIG (which I think stands for IV Immunlogloublin) seems to be used more frequently. Can anyone explain the difference between the 2, and why one process would be used over the other? Are they sometimes used together? Is PE used in the begining and IVIG used later? Or is IVIG used for CIPD and PE for GBS? (gosh, that’s a lot of alphabet soup!) I am just looking for some thoughts and clarification – especially from other PE folks – how long does it last, and do I have to anticipate future treatments? Thanks for any thought, ideas, clarification, or discussion.
April 8, 2010 at 2:11 pm
With a gbs dx you to not have to anticipate future treatments, only if you saw an increase of symptoms and it was switched to cidp. There are rare instances when people get gbs more than once in a life time. The PP cleanses the blood of the autoantibodies, or the bad guys. At that crisis time your body over produced the autoantibodies and your t-cell regulators did not properly destroy them. In turn your body started attacking itself (self cells) With ivig, they give you an abundance of antibodies, some literature suggests upwards of 20K different peoples antibodies. The abundance of the antibodies that is put into the blood kind of chokes out the auto antibodies therefore overproducing the autoantibodies as well. It is also teorized that the ivig kind of binds to the top of the myelin sheath acting as a barrier for the attack of the autoantibodies. IVIG modulates the immune system, it is changed by the addition of the antibodies, where as the pp is just cleansing the autoantibodies out.
Some people do get both, first pp them ivig. Some just pp, I think Gary o Houston gets just pp now, you would have to check with him. Not sure why docs pick one over the other. In my small mind, for the first time at least, I say pp would cleanse things and the ivig would have a better chance of doing its job, so I think both should be done. Some people who have a tougher time with things do get both. We don’t do pp so I only know what I have researched, others who do it regularly will be along.
Regarding how long it lasts, everyone is different for ivig and pp. It depends on how fast your body produces those autoantibodies. The life of ivig itself is 6 weeks w/a 2-3 week half life. but if you have a tougher case, the autoantibodies will overproduce at a quicker rate therefore increasing the frequency that you need the ivig. If you have not had any increased symptoms and your dx is solid, you won’t have to worry, as most only get gbs once (small acception can get it again)
AnonymousApril 9, 2010 at 1:18 am
When I saw that I was getting my GBS again..20 years later..(so much for RARE instance)..I called the local hospital and talked to the Director of the Hematology Dept and he told me they did not do Plasmapharesis….he lead me to believe that the PP is more expensive than IVIG … they did not do it at that hospital… I would have to go to a larger city. So it was my impression that it had more to do with money…and the hospital…the luck of the draw…..I was looking for plasmaparesis….but the ER doctor said they would not do it if I could still hold a cup….as I said in a previous email….so I realized they did not know what they were talking about..it is supposed to STOP the progression of the GBS….now why would they want to wait til I got worse…wasn’t the inability to walk enough?? So in that instance, having had it before, I had 20 years to study it and know what was ahead and what was needed.
April 9, 2010 at 7:58 am
I don’t know how much pp costs, but 30g with home health nurse hours and supplies costs us about $7400. It was over $30K at 100 grams. It would be interesting to know how much pp costs. I wounder if they choose the ivig because they make more money on the drug? Someone who gets pp will be along soon to let us know how much it costs.
AnonymousApril 9, 2010 at 2:36 pm
One reason, and probably the most common reason, is because not all hospitals are equipped for plasmapheresis treatments. There have been published articles that the outcome of either are equally effective. However, if there were a possibility of both treatments being done on a patient, the plasmapheresis should be done first because the blood system and plasma would be cleansed before receiving the new antibodies from the IVIg. This would give the patient the benefit of both treatments.
The most relevent immuno-modulatory actions of IVIg, operating alone or in combination, are inhibition of complement deposition, neutralization of cytokines, modulation of Fc-receptor-mediated phagocytosis, and down regulation of autoantibody production. Cytokines are proteins (usually GlycoProteins) of relatively low molecular mass and often consisting of just a single chain. They are signaling chemicals secreted by various Leukocytes (white blood cells that fight infections), to activate other cells, which regulate all important biological processes: Cell Growth, Cell Activation, Inflammation, Immunity, Tissue Repair, Fibrosis and MorphoGenesis. FcR (Fiber cell Receptor) controls the catabolism of IgG in the adult body, allowing IgG to be recycled to the cell surface and back into the bloodstream. IVIg consist of approx 90% IgG (Gama) immunoglobulin antibodies. IVIg can also reduce autoantibody levels through neutralization mechanisms such as down-regulation of antibody production — slow/stop demyelination processes.
Plasmapheresis requires the blood to be centrifuged to separate the blood cells from the plasma. This is required because the bad autoantibodies that attack the myelin are located in the plasma. After plasma separation, the blood cells are returned to the patient, while the plasma, which contain the bad autoantibodies, is discarded and the patient receives, albumin with added proteins. Medication to keep the blood from clotting (an anticoagulant) is generally given to the patient during the procedure. The body will reproduce new plasma within 24 hours. Plasmapheresis is usually given to GBS patients every other day, or every 3 days.
I get IVIg treatments but wanted to try Plasmapheresis just to see if I would do better with it. I was amazed that there was one gallon of plasma removed with each treatment. However, I could not feel any relief and had to stick with the IVIg treatments.
AnonymousApril 9, 2010 at 10:52 pm
My daughter did not respond to IVIG. She had a series of 5, after the 5th IVIG infusion she became remarkably worse. Her diaphragm nearly stopped working and her breathing became labored, she was put in ICU and for a while was in between being ventilated and a bi-pap. By this time she could not sit up, could not do anything with her hands, not to mention she had not been able to walk since Feb of that year. Bottom line the IVIG was not effective at all, no one can say why. That was 2 years ago. Her dx CIDP.
Medical team asked me to agree to PE (fortunately I had red about it and knew what it was). After first series of 5 PE there was visible improvement in her hands and she could sit up, although by then her hands had lost any fine motor skills. Now, 2 years later, she receives PE 1 x every 3 wk, and once in a while she gets a series of 5 (I won’t even go into how that happens). By the end of the 3 wks. some of her symptoms are starting to return. Given her insurance situation, we are lucky she is getting PE 1 x 3 wk and are worried about losing that.
Pain and other problems I won’t go into here are ongoing. Lots of pain. We may have found a new pain mgmt doc that we have to pay, but if it’s helpful I’ll dig up the $$ somewhere.
So, bottom line is PE is effective for her CIDP IVIG was not and no one can even speculate as to why.
AnonymousApril 10, 2010 at 1:50 am
Thank you all for the discussion regarding the difference between IVIG and PE. Dawn, I checked my Explanation of Benefits from the insurance company and among all the charges located $1,050. in anesthesia charges for the insertion of the 2 catheters in my juglar vein for the PE treatment. One cath took the blood out – the other returned it after the plasma had been centrifuged off and replaced with donor plasma and albumin. The dual cath remained in my neck for 10 days, since they did a PE treatment every other day for 10 days (5 treatments) The PE treatments were administered by the American Red Cross, and I can find no charge for them. Tucson Medical Center (where I was hospitalized) is in a major metro area, and has a lot of very highly specialized programs – especially in the neuro area. I am just very lucky my husband took me to that particular hospital. My neuro discussed the 2 processes with us – rather quickly – and recommended the PE. Not knowing anything about GBS or treatments we followed his lead and elected the PE. My response was rapid and encouraging, and I think the quick intervention kept me from going on a vent, and reversed the downward sprial I was in. I am grateful and pleased with the treatment – and my neuro.
PE seems to be a treatment requiring a longer period of time to complete (10 days), surgery to install, and very close monitoring. Each treatment was between 2 to 3 hours long, and as Jethro said the plasma was removed from my blood and thrown away – right before my eyes! Wierd.
I was just curious – I pray for no relapse, and would probably go the PE route again, if offered. My insurance covers it and it does seem to work – at least for me.
AnonymousApril 11, 2010 at 8:30 am
I would like to take a moment to speak on the issue of Plasmapheresis vs. IVIG. There seems to be regional differences, perhaps financial and facility considerations as to why one treatment is chosen over the other. In my situation, I would add that it was my neuro’s preferred treatment option. He simply had success with PE in his previous experience. I had 5 initial PE treatments and continued to worsen. My neuro added 3 more and I still didn’t hit a plateau. Even the technicians who administered the PE were surprised that I wasn’t getting better. You could tell that my doctor expected the outcome to be different. We knew of the IVIG method from reading up on GBS and asked him to try that treatment. It was only after consulting with an expert in Pittsburgh that he relented and tried 5 IVIG treatments. Good thing he did, b/c it was then that I started to come out of my tailspin.
Why one type of treatment works for one and not the other is as unique as our individuality. In my case, my neuro was receptive and it proved to be the difference. He has since admitted that he may have to rethink his “philosophy”.
Wishing all of you who are recovering from this big speed bump in life’s road the best. Continue to be patient and stay positive and may good things happen in your lives.
AnonymousApril 12, 2010 at 8:33 pm
Before I decided, I researched all I could find about all three. Steroids were the least option due to other medical issues. The PP wasn’t always covered by my insurance plan in my region, yet–The IVIG truly seemed the least invasive of the three choices w/the least long term s/e’s overall. Tho it still had to be carefully done? The risks were far less overall for ME in the long term. And, that has been the correct choice for ME as a result.
First options considerations? Safety Side Effects Costs vs. results -then insurance?
Second options considerations? Same as above
Third? Same as the first two.
For some, IVIG is a ‘temporary’ treatment.. I knew from the get go that for me it could mean a life time treatment. As long as any treatment is done safely with all sterile procedures in place? It can work a long time. Once you hit 64? Tho? Who knows… especially since ins. cos. are changing future policies daily.
I know that IF I DON’T get the IG? I’m not gonna walk! Walking is very useful? Not to mention other uses.. Rite now my fingers are dead so I’m gonna sign off. Till later folks – Hope always
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