October 14, 2010 at 8:10 pm #9264
I have been doing ivig. I asked my dr. about p.e she said it is not that much different from the ivig. My cidp is caused from a paraneoplastic disorder–potassium antibodies. Makes sense to me that pe would filter out these bad antibodies quicker than ivig??–but i am not a dr. wondering about others experiences–have you responded better to one than the other?? has pe worked when ivig hasnt?? or can pe give a boost to ivig treatments??? Please share any info or personal experiences…thank you LoriOctober 15, 2010 at 10:54 am #95787
I have been on IVIG/PE for 16 years. Did PE for 6 months then shifted to IVIG for 8 years then back to PE for 3 years and now back on IVIG.
I cannot tell any difference in result. However, IVIG is much simpler, less invasive and takes one-fifth of the time. Also, if you have small veins then you will have to have a catheter for each time on PE and/or a fistula.
I hope this helps you decide. Good luck and good health.October 15, 2010 at 2:42 pm #95789
you just said everything my dr said yesterday–so yes it helped : ) she basically said all of the hassle of the pe verses ivig—and she isnt finding the pe to work any better. appreciate the response–thanksOctober 15, 2010 at 4:34 pm #95793
This summer’s GBS-CIDP Annual Special Medical Issue has an article on page 4 entitled “CIDP Treatment Update” by Gareth J. Perry, M.D.
Regarding Plasma Exchange, he summed up with this statement: “The cost is comparable to IVIg but because of the inconvenience we regard PLEX as third line treatment and rarely use it.”
Oh, by the way- the first line treatment in this article? Corticosteroid treatment.October 15, 2010 at 6:57 pm #95797
[COLOR=black]Plasmapheresis takes about the same amount of time as IVIg for me. I am currently getting plasmapheresis (as known as therapeutic plasma exchange, or TPE) once every other week. It takes about 3.5 hours. If I had to do IVIg every other week, and experience with it suggests that I would, the treatment would take about 4 hours.[/COLOR][COLOR=black][/COLOR]
[COLOR=black]I have a permanent catheter because of small, deep veins. It is a nuisance, but it is not really all that bad. In my case, I take good care of it (weekly maintenance and avoiding water near the entry site) and it works fine. It is definitely easier access than when I was having infusions, where three or four tries to get venous access were common.[/COLOR][COLOR=black][/COLOR]
[COLOR=black]TPE many not work better than IVIg, but it certainly works differently. If the response to IVIg is not ideal, TPE is certainly an option to try. As is always true, side effects vary for each patient. For me, the only side effect of TPE is minor orthostatic hypotension, which lasts only a few minutes. IVIg, on the other hand, left me with a severe headache for a day or so each time.[/COLOR][COLOR=black][/COLOR]
[COLOR=black]By the way, typical protocols for treating CIDP would use IVIg every four weeks or more frequently. Is your paraneoplastic syndrome why your doctor is not using IVIg more frequently? I take it your reference to antibodies to potassium is shorthand for antibodies to voltage-gated potassium channels (which are a class of proteins partially responsible for controlling the electrical potential of the cell wall).[/COLOR][COLOR=black][/COLOR]
[COLOR=black]Just another point of view, but I am very glad to use TPE.[/COLOR][COLOR=black][/COLOR]
[COLOR=black]Godspeed in finding the right treatment for you.[/COLOR][COLOR=black][/COLOR]
[COLOR=black]MarkEns[/COLOR]October 15, 2010 at 10:18 pm #95800
yes to the paraneoplastic disorder—vgkc antibodies. wasnt sure if anyone would know what vgkc was– so simplified it—lol–you must be a google addict like myself. immune related which is why the ivig. The ivig is easier for me because i can do the 5 day coarse in 2 days. I’m not sure why its not going to be more than every 6 weeks–i asked, but my dr said she felt that 6 would be best–i just started this, prior to this i’ve been doing it every 12 weeks–i have had 5 treatments total at the loading dose of 2 kg per lb. Im not at all against the pe and would definitely try it if i could be a little more sure it would work faster or better than ivig. I havent found a lot of info on the web specific to what i have– the cidp in my feet, ankles and calves are the only symptoms i have experienced, the websites mainly focus on it being a prelude to cancer which we cannot find anywhere, i have no damage to nerves in brain or spinal–just periphel–not morvans, not isaacs?? guess that’s the joy of this stuff no two people experience it the same. How was having the port in the neck–hard to shower, is it visible in everyday attire–like when going to work? my dr said it would be about 9-10 days of hospitalization for the pe. her plan would be for me to stay there to do it. 🙁 long time away from kids , work etc???October 18, 2010 at 11:28 am #95824
I’ve been on both over the years, approaching 500 plasma exchanges now, and nearly two years into the latest efforts with IVIG.
As I am sure you have read on this site, everyone tends to respond differently to each of the various treatments, so you have to find the one that work best for you.
When diagnosed in ’96, I was immediately put on IVIG with no success. Then shifted to PE and I responded right away, so for me, there was a big difference. Over the years I have been on everything talked about on the site, plus three of the MS drugs. My treatment always seems to come back to PE and Prednisone, which, over the years has been my silver ‘bullet”. When things get really bad, I get 500 mg solumedrol IV 3 days in a row and that stops any progression. Currently I get get PE every three weeks, followed by 500 mg IV solumedrol, then the following day I take 100 grams of Gamunex (brand specific). Doing this for the past 20 months and things have been pretty good. I am fortunate to have good veins, so I don’t have a cath. Takes about 3 hours for the PE.
Again, everyone responds differently to these treatments, but for me, PE has definitely produced better results than IVIG. From a cost standpoint, PE runs about $1,800 and the Gamunex is about $18,000 each time. Good luck to you and I hope you can find what works best for you.October 19, 2010 at 1:20 am #95853
I have had 10 years of having CIDP and have had both treatments. If possible I would have PE over IVIG – for me it is the only form of treatment that had immediate and long term impact. But my body rejects the central lines required to administer the PE treatment. The first time I got a staff infection and replacement lines ended up never stop feeling tender. Mayo Clinic rochester said this was partially due to the regional hospitals in my area not performing a large number of these procedures that would be considered routine in larger areas. I have a port/cath now for IVIG – I wish they could find a similar solution to administer PE without having external tubes. Best wishes to you!October 19, 2010 at 8:53 pm #95871
thanks for the info–definitely helping me make up my mind. I’m still going with the plan of ivig every 6 weeks until february (my next Dr visit) that is when i need to make the decision regarding pe. IVIG is pretty simple for me,good veins–no side effects—so hopefully the pe wont be too bad if its needed..LoriOctober 19, 2010 at 11:16 pm #95881
I think that more than a personal choice is what really works for you. My personal experience….I took ivig every 2 weeks for 14 yrs, incresed dosage during relapses, plus prednisone and cellcept but since 2004, that wasnt enough during relapses. so I had to have plasmapheresis every 10 months or at least once a year.
Pros and cons…. like anything else. IVIG just a few side effects but can do it in a few hours at home. Pheresis, I had to be in the hospital at least 2 weeks for 7 cycles, few side effects. Cost, about the same per dose plus hospital.
It did worked and put my CIDP on remission for at least a year. I kept taking my other meds . It was not the only treatment but it would help a lot.
Another con. is that after so many pheresis and 3 infuse ports i was told in january I didnt have any more veins left to do another one. That’s when SCT was my only option . Im so happy I went for it. I would recommended to anyone.
I hope you feel better soon and get the best treatment possible.
Thank you.October 20, 2010 at 9:18 pm #95899
i havent done much research on sct—i figured it was last resort after everything else had been tried and failed. So is that a major thing to go through? is is definite to rid one of cidp symptoms? guess i’ll need to do a little research on it. thanks for sharing your experiences : ) i am feeling better since my ivig—but am waiting patiently for it to help with strength in my feet.
LoriOctober 22, 2010 at 11:25 pm #95952
Depending on where you are, there might not be a need for hospitalization. When I did my first round of PE, I had a temporary catheter installed through the neck and into the jugular vein. It was visible, but I was in bad enough shape I did not care. I did five treatments every other day. I went to work every day and just took the afternoon off on treatment days. I did not show significant improvement until after the third treatment and was at about 85% of normal at the end of the treatments.
Once we knew it worked, I had a tunnel catheter installed. It is installed on my left side. It penetrates my chest about 3″ down from the collarbone and travels through a tunnel to the subclavian vein, penetrating the vein near the junction with the jugular. The portion of the catheter that is exterior is of moderate size, so the bulge in my shirt is noticeable, but not objectionable. I cannot just jump in the shower; I have to take precautions to keep the site dry. The precautions are not onerous, though. The catheter requires weekly maintenance, but that is not a big deal either.
MarkEnsOctober 23, 2010 at 1:59 pm #95964
the pe procedure doesn’t sound as bad as i envisioned it—winter is coming guess i could get lots of turtlenecks to wear to work for a little while for the port–even though i hate turtlenecks–lol. I think i will definitely give it a try if the ivig doesnt improve my strength in the next few infusions. I appreciate you sharing your experience with it–most helpful. It does appear the pe works for some better than ivig. take care–its nice to hear the success stories of people finding what works for them 🙂 Lori
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