so..I am on to plasma exchange….

    • December 16, 2011 at 7:40 pm

      after 2 1/2 years of ivig I’m giving up on it working for me and attempting PE. Not too nervous, I have an excellent neuro-muscular Dr @ Lahey and know she will set it all up fine. Just not too thrilled with 10 days in the hospital!!! What to do to pass time for 10 days?? I was really hoping to get in done outpatient closer to home–but i guess, especially for the first time it would be best to be where my dr is.
      How soon did you that have had the PE know that it was working for you—should i be able to tell in that 5 PE’s in 10 days whether its working or not? I hope its not like the ivig where it was really hard to determine if it was doing anything or not.
      Do they take the catheters out of your neck after the 10 days–then put it back in if you need to go back for another round–or leave it in? I really cant imagine working, etc with two lines hanging from my neck.
      Any advice, info,or PE experiences (especially success stories) would be great 🙂 having it done after the holidays, in January.

    • Anonymous
      December 16, 2011 at 11:25 pm

      I would get the lines removed to decrease the chance of infection.

    • Anonymous
      December 17, 2011 at 6:16 pm

      Hello Lori,

      I trust things will go well with the PE. I have one quick question, though, why do you need to be hospitalized? My first round of PE of was done on an outpatient basis, using a jugular catheter. I was careful not to pull on it (or let it be pulled) and kept it dry, and I had no problems. I would think that, barring other problems, you could do so as well.

      If the PE works well, you might be able to tell in a week or so. In my case, it took 3 sessions before I noticed any improvement. I was very much improved by a few days after the fifth (final) session (Note: one round of PE is typically 1 to 5 sessions, spaced every other day or so).

      The jugular catheter is not a permanent solution. If you elect to continue with PE, then you have a few options. One is to just have venipuncture done each round or session, depending on the hospital’s protocol. The negative is that big needles, typically 17 gauge, a size that a nurse of mine characterized as “medieval”, are needed. This is an option only if you have big veins. Another is to have an arteriovenous fistula made in your arm. Another is to have a shunt installed, serving a similar function to the fistula. The goal in both of these is to swell the vein so that the large needles can be used. Both of these have the disadvantage that they take 8 to 12 weeks to heal enough to provide useful access. The last is some sort of permanent catheter. There are several different names for them, but I think they are all effectively a “tunnel” catheter.

      A tunnel catheter is called that because the catheter tunnels through the skin for a distance between the exit site and the penetration into the vein. The point is to reduce the chance of infection. Having one put in is mildly painful and full recovery can be a bit long. It can be used for PE immediately, though. It is a nuisance to put up with, but only that, a nuisance.

      I could go into more detail, but let’s see how you do with PE first and then discuss options further then.

      Godspeed with your treatment and Merry Christmas,

    • December 18, 2011 at 8:27 am

      Thank you very much for the info—if the PE works I will definitely check into those options. I don’t have big enough veins to have it done in the arm.
      I was encouraged that you you said you felt improvement in three treatments—by that did you mean the third day in your 5 day session?
      Do you have to have it done 5 days every time or is it less after the first time?
      I had done all my research and found a place within driving distance from my home that The Red Cross had the machine used for PE and was hoping I could do it outpatient there.
      I brought the info to my Dr appt Friday with me–but my dr wants me to have it done in the hospital where she is. Part of it is because I wouldnt have a dr at the closer place, my Dr is 3 hours away in Mass and i live in rural Maine.
      I figured to get it done, see if it’s going to work etc, I will just go to where my dr is and try it. If it’s going to work for me then I will see what can be done to get it closer to home.
      thanks again for the info—-this site is so great for obtaining information. I’m thankful that people continue to post even after they have found what works for them. Lori

    • Anonymous
      December 19, 2011 at 4:39 am

      When do you go? I will be praying for success!!!

    • December 19, 2011 at 8:02 am

      thanks Linda 🙂 i should be gettting the dates soon, my dr is setting it up for some time in early January (after the Holidays). Lori

    • Anonymous
      December 21, 2011 at 1:48 am

      I have had PE several times and found it helped right away. Mayo actually recommended this treatment for me but because local facilities were not used to doing this it was difficult. I found a group of pharmacy students observing each time! My first set of central lines stayed in but after my first round I could tell right away something was wrong and reported this and was told I was not used to them. But soon I could (sorry for the graphic it) smell something was wrong. I went in and sure enough they were infected and would removed that day. They said they thought it was nothing serious would run tests on the infections which did come back for staph. So I had to have a pic line put in my arm and went in for daily antibiotics for a month. A second set of central lines were put in and that went fine but after the last round they were removed.

      We decide I was just to susceptible to infection to keep them in. I moved on to get a port for home infusions which worked really well with no infections.

      I wish PE was a regular option but just wasn’t willing to risk the infection. It was also hard for me to maintain the lines – I tended to react to tape and coverings to protect the lines. I was lucky that my family was willing to help take care of the lines while they were in. This was hard for me to do on my own.

    • Anonymous
      December 21, 2011 at 2:16 pm

      Does anyone have Kaiser insurance and is receiving IVIG for CIDP? I am considering in obtaining Kaiser insurance next year. Due to the fact they are HMO and try to keep medical costs down, I wanted to know if will treat me with IVIG and not try to treat me with something cheaper like steroids, which I absolutely do not want.

    • Anonymous
      December 21, 2011 at 3:17 pm

      [B]Plasmapheresis – My recent experience[/B]

      It’s been a surreal week for me – spent it in the hospital getting all my blood cells separated from the blood plasma. First, a Dr. Lion (no, really), placed a six inch fang shaped catheter in my jugular vein. As an added favor, he slipped a 20″ needle – well, maybe 6″, into my spine and removed 15cc of spinal fluid which he said was ‘clear as vodka.” Those doctors – what fun we have! Next it was off to the plasmaphorisis machine in my room at Sharps – room 513 on the fifth floor. The machine, which I named Dracula, manned (or womaned) by the Blood Countess because of her Balkan accent, removes whole blood from the jugular vein, sends it into a centrifuge which makes the red cells so dizzy they stagger away from the plasma and throw up. The plasma, which looks rather like fermented apple juice that recently experienced a very bad night on the town, wanders off on its own, following a ragged, snakelike path through complicated plastic hoses designed by Tim Burton for the mad scientist in Corpse Bride. Once through the labyrinthine hoses, the extracted plasma sulks in a two gallon bag, and waits to be recycled into the next patient. New plasma, looking exactly like the old plasma, dribbles back into the shunt marked IN. The OUT shunt is a festive red, but the IN shunt is a more delicate muted hue – much like mixing blood with apple juice. To think, I once liked apple juice. The red blood cells, sick and thoroughly chastened, stagger back into a tube where a mechanical version of Captain Hook prods them back into the raging sea of blood that sloshes around in my body.

      The centrifuge in the machine sounds rather like a jet engine warming up and I requested clearance from the tower before I was asked to not move and be quiet once again. The irritable beeping caused when the machine’s directions are not precisely followed upsets the Blood Countess who is forced to frantically twiddle this and that, adjust hoses and say strange incantations in what I believe to be Transylvanian.

      So I silently reflected on the direction of spin taken by my red blood cells in relation to the rest of the universe and speculated that my plasma acted remarkably like dark matter. Relativity jumps on board as well. The red blood cells, having spun so much faster than they would have moved in my body, are now younger than they would have been and begin to party. I cannot fathom the directions they moved while in the centrifuge – The earth spins, the moon makes everything wobble, the earth circles the sun which circles the Milky way which is going hell bent for leather in some unspecified direction and it’s all moving very, very fast.

      Four hours later, we came in for a landing, the last red cell staggered back into my waiting jugular and someone offered me strong medicine. I took it. Dreams happened. A woman named Meali – in charge of food delivery – (really – Meali) placed me on a delightful, salt free, heart healthy diet where everything tastes exactly like oatmeal mush. Saltless oatmeal mush. Their motto seems to be “soft food, solid stools.” Not that it helped. My intestinal tract followed Egypt’s lead, began a revolution and backed up like the Nile before Moses led his people to a place where they would be surrounded by other people who really didn’t like them very much.

      The next four daze followed the same pattern – blood out, blood in, blood out, blood in – until I realized that it was a Zen koan and I finally asked the right question. The answer, of course, was 42.

      Patti (my wife) appeared intermittently with a strange device intended to weave rope from ribbons encased in plastic. She kept losing count of the pattern. The pattern ruled and eventually won. She charged what needed to be charged – kindle, ipod, cell phone – and brought in contraband. Salt tucked in the back of a drawer, Citrucel in with the underwear, yogurt in the nurse fridge, cereal hidden in plain sight on the counter, clean undies and the odd back rub/ointment ritual. And, of course, she kept the nurses honest and on task.

      And on the fifth day I was released, went home, blood purified, ready to spin a few tales and turn a few bowls. Katz all happy to say hi. Little One dragged my shoes down the stairs, Rosie emitted piteous howls, a sign of her urban angst, and Fetch enjoyed a good brushing.

      I put on my dyslexic T-shirt with the picture of a cat lying across a book. The caption reads “Life is Doog.”

      The treatment is almost immediately effective – or was, for me. I felt a difference is strewng5h returning by the third day and was in my shop turning bowls a day after I returned home. If I do it again, I want to do it as outpatient. I am currently taking 20mg daily of prednisone – which is not working all that well . . . but the Dr says to give it a few more weeks. We’ll see.

    • December 21, 2011 at 4:25 pm

      wow Took !!!! after that graphic explanation— I CAN”T WAIT !!!! LOL—no really you gave me a good laugh !! im glad the PE worked right away for you—Im very optimistic that it will for me too ( i just have that feeling—intuition, i guess)
      yes i agree on the lumbar puncture needle–it does look 20″–but i already had that done–got a horrible spinal headache, and have already told my Dr that is not an option—i will NEVER have it done again, not because of the procedure , but the headache for 2 weeks after!! you were probably off the hook for that because it is most common is menstruating women….. way too much info–I know—lol….Hope you and your family have a wonderful Christmas. Lori

    • Anonymous
      December 21, 2011 at 6:16 pm

      Hi Lori – 10 days seems like a long time. Unlike ivIG, plasmapheresis didn’t have any effect other than lowering my blood pressure a bit. I did it 5 times in as many days. No side effects at all. Just felt good. So maybe you could talk to your doctor and see if it could be done more quickly. A bad time of year to be hanging out in the hospital tho. Good luck and the best to you. Keep us posted. Watch out for Dr. Acula:D

    • December 22, 2011 at 6:39 pm

      I wont be going in to have the PE until after the Holidays—my dr is setting it up for January, im still waiting for the dates. I did plan to ask her to do it in a quicker time, she said to come in thurs for the cath. then start the first exchange, fri,another sun, then i considered asking her to do the last 3 mon, tue and wed if all goes well and she agrees.
      I wonder how the bolod pressure thing will be, I naturally have low BP, and have to be careful sometimes if i go from sitting to standing too quickly (can be a little lightheaded).
      I see some people get the IVIG and PE, which confuses me. the ivig is adding all kinds of antibodies to our own and the PE is taking antibodies out. It seems to me it would be pointless to do both because wouldnt the PE just remove the antibodies that the ivig is adding???
      This stuff is so confusing??? Lori

    • Anonymous
      December 23, 2011 at 9:30 pm


      For me, the improvement started after the third treatment in the first round. I had to have rounds of PE repeated frequently, spaced at about 2 week intervals. That was until we tried a combination therapy of PE, steroids, and Imuran, later dropping the steroids. Eventually, I was able to go to three treatments every six weeks. I had a change in work schedule that made it easily for me to do one treatment every other week. Overall, it is the same number of treatments, just spaced differently. The combination therapy keeps me stable and functioning well, if not ideally.

      However, that is my own experience. Yours will likely be different. It is possible that PE will work very well, with nearly instant improvement. It is possible that after the first round, you never need another treatment. I hope that is your experience. One the other hand, it is unfortunately possible that it will do nothing for you or that you will only get at most a few days of good relief before you need the next round.

      By the way, Took’s description is mostly accurate in a very funny way, but it has one aspect that is just not true. The plasma does not wait to be recycled into the next patient. It is discarded as medical waste. I suspect why Took could not move much during his PE was that the catheter ended up against the vein wall, rather than precisely in the middle. Movement then presses the vein wall and catheter together, restricting the flow. I don’t know why Took needed the strong medicine, but I have never needed to take any medicine after a PE, and I suspect you won’t need to either.

      The blood pressure issue could be a bit of a problem for you because you already experience orthostatic hypertension. One solution is to eat a salty snack or drink some broth at the start of the last bottle of plasma. The salt will help kick up the blood pressure. Another option is to have the nurse infuse some extra saline. That will raise the blood pressure.

      Godspeed with the treatment,

    • December 24, 2011 at 8:38 am

      Thank you MarkEns, your info has been very helpful. I am very optimistic about the plasma exchange and very excited to get my dates for it. I was a little disappointed at first when my dr wouldnt agree to my idea of doing it outpatient locally—but Im over that and just ready to try it now.
      PE was one of the first things i searched when finding this site,and have always had that gut feeling that it was what i needed to get better—I dont know why because im not a very intuitive person, normally.
      i have followed a lot of peoples experiences with it, and felt it was what i SHOULD have been doing the whole time i was getting ivig. But, anyway, Im at that point now and will be trying it soon.
      I just hope it isnt too late and the nerves will be able to regenerate if the pe works —-its been 2 1/2 years since my diagnosis. The damage is in my feet and ankles, which I read is the longest to recover .
      Im glad that it it’s working for you 🙂 If I need to add something else to the pe, we are thinking of adding rituxin.
      Hope you and your family have a wonderful Christmas . Lori

    • Anonymous
      December 24, 2011 at 5:52 pm

      Took ~ Awesome and precise description of the ‘PE experience’! I think I had the same nurse ~ or a clone thereof ~ and certainly the dieticians all went to the same school together. Alas, PE didn’t work for me because after the 12th treatment I was considering converting and old refrigerator in my garage and doing it myself – how hard could it be.

      I’m now on the IVIG drip and can do amazing math calculations based on drip rate technology. They told me in school that someday I would actually need to understand math and physics. Each drop is mesmerizing and eventually produces a trance-like state with a side dose of astral travel. Done right it exceeds anything Hubble has done. I look forward to my next treatment.

      Best to all – life is not a gas; its a fluid.

    • Anonymous
      December 26, 2011 at 2:00 pm

      I know it is not recycled. Just a bit of hyperbole to help make a difficult situation a bit easier. Sorry for any confusion. 🙂

    • December 26, 2011 at 10:33 pm

      Took –yes, i got it, no need to apologize, I appreciate the humor and will remember your description during the procedure 🙂