I can ask my PP Tech Friday when I go for my treatment. What other questions do you want me to ask?

I will ask. If you think of anythng else let me know.
MJ

I’ve been havig PLEX done regularly since November. I have a permanent port in mychest through which they do it. The procedure itself is not uncomfortble though sometimes it makes you tired the rest of the day. You’ll probably start noticing results after the 3rd exchange. it has definitely helped me but I keep having relapses so I’m getting ready to go on immunesuppressant therapy as well.

Carla,
I had five plasma exchange treatments in 8 days back in April of 2002 while inpatient at St. Marys Hospital in Duluth. I had been dx with GBS, them telling me at that time that I had the mildest case they had ever seen. I could still walk normally at that time & just had some numbness of the hands & feet. A temporary catheter was placed in my groin area & I was brought to a special room for the treatments. I was then sent home with no treatments & would continue to decline daily for the rest of the month, until by April 27th I woke up unable to walk, raise my arms & had lost most of the use of my hands.

Then in October after I had been rediagnosed with CIDP in May, when IVIG & solumedrol weren’t helping me much, my neuro decided to put me on 12 weeks of all three treatments, all on the same day. I had to go in & have an ash split catheter placed in my chest first. Then I would go in outpatient every Friday for 12 weeks to have the PE & rush home for my home health nurse to come to give me IVIG & solumedrol infusions. It was a grueling regime, but I was overall so sick then that I don’t even remember most of it. I tolerated the PE fairly well, although my blood pressure would drop near the end of the treatment.

Have you tried IVIG first, as that is a much easier treatment that can be given in the home. Either can work as well, but I would pick IVIG first, as it does not require a specail port to be put in first & can easily be administered at home…
Pam

I was dx with a severe case of GBS in Oct. 07. They started my first treatment of PP within 3 hours of being in the hospital. I was given 5 treatments in 7 days. They never had to put a port in. The doctors said I had good strong veins so they decided to try my arms instead and they were successful. I couldn’t move the 1 arm for the entire treatment since it had a needle in it as opposed to a flexible catheter. They had to slow down the process slightly since the pressure in my vein was a little too low. This just caused it to last an extra 10-20 minutes. PP removes the plasma in the blood therefore wiping out all of the antibodies, the doctors gave me a donors’ plasma the second treatment since it was the day after my 1st treatment and my body didn’t have time to produce enough.

I hope this helped!
Brie

I had a total of 17 PP treatments over 2 different courses. They put in a temporary catheter as my veins were bad by this time. Problems or side effects I had were: I got extremely cold during the treatment. The solution was room temp and it was bringing my core temp down. It would take about 5 warm blankets and an hour or two after the treatment to warm back up. I also felt tired after the treatment but at that time I was always tired anyway! :p I also had some problems with it lowering my blood pressure during the treatments. They just increased the albumin replacement percentage and it helped. Over time my hemoglobin dropped as well. This was explained to me that since I was getting the treatments so close together my body didn’t have time to replace the blood loss in the tubing with each exchange. I ended up with a blood transfusion and iron replacement IVs. The last side effect that was dealt with was calcium replacement. I was told that it stripped off calcium so before each treatment I would chew 5-6 tums and then was told to report any tingling around the mouth which was a sign of calcium deficiency. At that point I would get more tums for my snacking pleasure. The PP treatments did help me tremendously at the time. I went from a wheelchair to “clumsy” walking with a walker in about 5 days! This was done at that early part of my adventure only to decrease again to not being able to weight bear. I must say IVIG is easier to administer than the PP treatments. I appreciate being able to get the IVIG at home verses a hospital visit. I know you have tried many things and this just might be the answer for you! Good Luck. Keep us posted.

Linda,

Sorry you are having a struggle right now. I’ve been so busy and not able to reply or even vent for that matter. Things are pretty tough right now.
I’ll fill in soon.

stay strong and my very best wishes to you.

Stacey

I got the PP back in June and July of 2006. They stopped them as they started me on steroids and sent me to a nursing home where they didn’t have the service. They didn’t feel that the PP was helping me at the end when they quit. At first the steroids did give me a boost but then I relasped again about a month after starting them and then they went back to IVIG for me. Both treatments had worked for me but they just didn’t last so I chose the IVIG and another boost of steroids. I am still trying to wean off those steroids.

Currently I am doing well. I got a compliment from my therapist the other day. She said I walked “normal” for the first time! I have been “toddling” for a couple months now. I still use a cane to go outside but in the house I am free and clear to walk unassisted! I still tire easily so naps are still a daily occurrence. I am having my mastectomy surgery on Monday so say a prayer for me. I finished my chemo on Dec. 20th.

I saw my neurologist last Mon and he said he didn’t know if they had me in remission yet as he felt I was just finally “controlled” on the drugs. We won’t know till they can increase the intervals between the IVIG’s and wean off the rest of the steroids. I still get IVIG every 3 weeks. The plan is to increase it after my surgery. So time will tell. I just hope the surgery doesn’t put me backwards but he said it shouldn’t; so I am trusting!

So that is my story…..probabably more than you wanted but you asked! 😀
Take Care, I hope the PP goes well for you.

[COLOR=black]Hello Linda,[/COLOR]
[COLOR=black] [/COLOR]
[COLOR=black]This is a very long post, but I have a fair bit of experience with plasmapheresis to pass along. I have been using plasmapheresis to deal with my CIDP for two years. At first, I resisted the idea, but things got bad enough that I had no real choice (this was at a time when getting IVIg was very difficult). After seeing how well the process worked, we decided to keep using it. At this point, after about 100 treatments, I see no reason not to continue with it, so I would say PP is viable for long-term use.[/COLOR]
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[COLOR=black]However, there are some serious considerations involved. First, is what type of veins you have. If you have large, shallow veins, do not scar easily, and don’t need PP too often, then you probably do not need a catheter. If not, then plan on either a catheter and/or an ateriovenous fistula. Second, if you are prone to low blood pressure, be aware that PP can cause a blood pressure drop. Third, if you end up with a catheter or whenever you have venous access (during treatments), you must be vigilant against infection. If you work in a job that is dirty or likely to get you wet, it will be much harder to protect against infection. Fourth, if you have a catheter, you must commit to weekly maintenance of the device, to avoid clotting.[/COLOR]
[COLOR=black] [/COLOR]
[COLOR=black]Let me provide more details about my experience with a catheter. I have small, deep veins, so my only real option is a catheter. My first catheter, which was intended for temporary use, was one that went into the jugular, more or less as a puncture, just above the collarbone. Once we decided to use PP more permanently, I had a tunnel catheter installed. This type of catheter enters the body at about the top of the breast, runs through a tunnel of skin (made during the insertion process) and then enters the vein near the right jugular. The catheter then continues in the vein until about 1 to 2 cm from the heart valve. The reason for running the catheter through several inches of skin is that devices that help reduce infection can be part of the catheter. In my catheter, there is a porous cuff that is designed to have the skin grow into it. That helps block infection. There is a cuff further up that was impregnated with silver, designed to kill bacteria (silver is an anti-microbial agent) for a short time (about a month). About 4 to 5 inches of the catheter is external to the body. [/COLOR]
[COLOR=black] [/COLOR]
[COLOR=black]I have had the same catheter for two years now, with very few problems. I can’t go swimming or get into a pool or hot tub. I have figured out a way to shower, though. I have to go to the medical center once a week to have them flush the catheter and change the dressing. I developed sensitivity to the normal dressings and disinfectant, so I now use gauze dressings, which we change 3 times a week (including the medical center visit). [/COLOR]
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[COLOR=black]My main reason for resisting PP was that I would not be able to shower. However, with appropriate modifications, I find that I can. My wife tapes a dry washcloth over my catheter, only at the top. She then fastens a beauty shop cape around my neck, quite tightly. I am then able to wash my head with little concern about water getting to the catheter or about water condensing underneath the cape. After doing so, I wash the lower half of my body and my forearms, but with the cape still on. After rinsing, I remove the cape, leaving the washcloth. I then effectively sponge bathe my upper body, but using the shower to help rinse. I am very careful not to let the shower hit the washcloth. After I towel off, I remove the washcloth and check to see if the catheter’s dressing got damp. I do this by pressing a tissue very firmly against the dressing. If it is wet, water will show up in the tissue. While I have never had a problem, if the dressing were wet, we would immediately change the dressing. After that, I then sponge bathe the area covered by the washcloth. Yes, I know it sounds like a nuisance, but it is not that bad, certainly when compared with not walking.[/COLOR]
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[COLOR=black]There will come a time when the catheter fails, from a clot, an infection, or just old age. I may be able to have a new catheter, or I may have an ateriovenous fistula made. An AV fistula is made by attaching an artery to a vein though a small hole (fistula). The reason for doing this is that the arterial pressure increases the size of the vein. Many hemodialysis patients have this done and it works well.[/COLOR]
[COLOR=black] [/COLOR]
[COLOR=black]My only serious complication from the PP itself is low blood pressure and especially orthostatic hypotension (a blood pressure drop when sitting from a lying position or when standing from a sitting or stooped position). Being well hydrated helps, but sometimes I just have to wait for a half an hour or so while my body adjusts. A much more minor complication is that I sometimes feel a little tired after the treatment; well, not really tired, but just sort lethargic. If I take it easy, I am fine by the next morning. That is why I try to make sure that my treatments are in the afternoon. [/COLOR]
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[COLOR=black]My PP itself is done at my medical center. [The machine itself is pretty big, so home use is out of the question.] From check-in to leaving takes 2.5 hours for me. I am a fat guy, so it takes longer for me than it would for a thin woman. I once had my treatment done at the same time as a young woman, and she was in and out in about 1.25 hours. I have three or four treatments, done every other day (skipping weekends) done every 4 to 5 weeks, but you will probably need some other schedule.[/COLOR]
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[COLOR=black]I hope this all helps you in your decision and Godspeed in your treatment,[/COLOR]
[COLOR=black]MarkEns[/COLOR]

[FONT=”Comic Sans MS”][SIZE=”2″]Jan,
How are you weaning off the steroids, with a steroid sparing drug like Cellcept of Imuran, or just gradually reducing the dosage? I’m currently taking Cellcept as I couldn’t tolerate Imuran, and both have frankly scary side effects not least of which is Lymphoma.
Mark,
Thank you for the shower tips. I currently wash my hair at the kitchen sink, then take a sit down bath for the rest, but i sure miss the feel of water running over my head. I’m going to give your method a try.
As to Plasmapherisis, I love how it makes me feel as I’m reclining there in the dialysis center. the solution is warm and they monitor me and add calcium when needed, then I sit there till I’m comfortable enough to stand and walk out. The 45 mile drive back home is tiring but doable, and the benefit for me tremendous, as I went from wobbly walker walking to a cane and now I may be able to go back to work soon, Yeh![/SIZE][/FONT]

hi, i’ve had two courses of PPE over the last 12 months. the first was inpatient and done with a shiley cath. it’s a temp. one inserted into the jugular. i had five treatments in five days, it was effective, but not for very long.
the second time i had a tunneled cath. placed and about 10-12 treatments through the cath before it became infected. i didn’t like a garden hose hanging from my chest, i mean there’s nothing sexier than the garden hose/cpap girl in the bed. (moi)!
each time i would suggest to my neuro about getting an AV fistula for the treatments, he seemed like he didn’t “get it”. PPE needles are usually 17 gauge. dialysis needles start out at 17 gauge and goto 14 gauge. it made sense to me to go for a fistula, hence is being made from your own tissue, the risk of infection is incrediably decreased. even a gortex graft could be used if a fistula was not possible. hmmm, seems like it’s time to discuss this with my doc again.
peace,
flower

Here’s my thinking on having a fistula or catheter. First, let me list the pros and cons of each, as I see them. The pros of catheters are that Easier surgery and Immediate use. The cons are that they have a relatively short lifetime, have a relatively high risk of infection, require maintenance, and have a potential for life threatening complication (thrombosis or physical damage). The pros of fistulas are that they have a longer lifetime, have a low infection risk, and require little maintenance. The cons are that the surgery is more difficult, they take 8 to 12 weeks to heal sufficiently to be used, and they have a potential for life threatening complication (thrombosis or rupture)

[COLOR=black]Why have a catheter ever? Well, if you need PP now, because your symptoms are progressing rapidly, a fistula is not an option. Otherwise, it is a question of managing treatments over the long haul. If one is 50 or younger, then one must manage vascular access for 30 to 40 years. For me, I think that the catheter I have now will probably last 3 to 4 years. It is then possible that I could have a replacement installed. Let’s say it does as well. I could have another two catheters installed in a different location, and let’s say those also last 4 years each. In sum, I could probably have catheters until my mid 60’s. At that point, I should be at the point where the risk of the fistula surgery will be low enough, but the risk of infection just do to age will start to be increasing. Fistulas can last seven years or so. I could then have one in my early 70’s, assuming reasonable health, one in my late 70’s, and one in my mid-80’s.[/COLOR]

[COLOR=black]Why not switch to fistula now? Because there is a limit to the number one can have. If I exhaust those, I would be using catheters in my 70’s and 80’s. I would rather have the lower infection risk then and the problems of a catheter now. Also, because there is some history of dementia in both my wife’s families and mine, I would rather have something easy to take care of later, just in case. [/COLOR]

[COLOR=black]This choice is really a personal one. Fistulas (and the grafts that Flower mentioned) do work very well, and are the preferred alternative for dialysis. It is just that CIDP’ers who might use PP for 30 to 40 years are in uncharted territory. I think DocDavid has been on dialysis for 6 to 10 years. Maybe he or other long-term dialysis users can give us a better perspective on long-term vascular access.[/COLOR]

[COLOR=black]MarkEns[/COLOR]

LInda,

Please look at my post today to steven about PP. I’ve had a bunch and have learned a few helpful things over the years. PP has worked wonders for me. I hope you read my post. Best of luck to you and feel free to e-mail me if you have an more questions about the procedure.
Fred

Hi,
Have you tried another brand of IVIG or slowed the infusion rate? Read some other entries, others with same effect reccomended to try another brand.

Good Luck ,
Cindy

jack,

ivig & pp each work on 70% of us. better late than never to get either. take care. be well.

gene gbs 8-99
in numbers there is strength

Welcome Jack.

I would think you could try a different brand of IVIG and a slower infusion rate. I am surprised they didn’t do that after you had issues before. Seems like Plasma Exchange would be a good 2nd option if changing IVIG and infusion rate don’t do the trick, it is more invasive and hard on the body then IVIG infusions relatively speaking. Better late then never like Gene said is what I have always heard also.

Jerimy