perm-cath, CIDP, Plasma Exchange
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May 10, 2008 at 3:52 pm
Well, here’s a big update on my CIDP. So, went to get the perm-cath in on Monday am and wasn’t feeling all that great – thought it was due to meds, but they said BP was really low.. so DOC suggested I get the cath put in at the Hospital as an outpatient instead. So, go over there and they had me all set up, give me some sedative, etc. and get the cath installed and then they put me in a room to recover.. well, the alarm started going off watching BP dropping and dropping and finally it showed something like 58 over 29 … they all started to freak and moved me to another room and there were people all over the place. My cardiologist was there doing rounds and he was there and said to me something about needing to get shocked.. next I knew it was a few hours later and I was in a room all wired up…. seems I really did bottom out and they had to zap me to get my heart back in rhythm. So, spent the night in intensive care and then the next 2 days in regular care to make sure all was ok. Ready to leave and neurological assoc stops in and says no, they want me to get the first Plasma exchange there at the hospital in case my BP would drop, so I was suck there for another day…… anyway, finally seemed to have recovered but it was a close call. I went for 2nd treatment yesterday and have 3 more scheduled for next week. Can anyone offer any insight as to how to live with these tubes sticking out of me? Those that have had P/E – how long was it before and if you saw any improvement? It seems like I am getting weaker – fell today trying to get into the house. Looks like we’re going to pout in a temporary ramp that should make it easier to walk up and get in the house….
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May 10, 2008 at 5:26 pm
Hello Kenneth,
I wrote Linda Cala a long description of my plasmapheresis experiences. Rather than clog up the forum and repeat it here, the link to the thread is: [URL/]http://www.gbs-cidp.org/forums/showthread.php?t=3717[/URL].
When I was trying to use just PP to treat the disease, I had to have a set of four or five treatments spaced over 8 to 10 days. I would then have 15 days before the next round. I often had no improvement until just before the fourth treatment of five. The improvement then continued to for about to about 8 to 12 days after the last session, and then I would start to decline.
From your description of your blood pressure problems, I would be really careful. Typical signs of a blood pressure drop are nausea or a queasy feeling; ringing in the ears or an increase if you already have tinnitus; visual difficulties such as blurry vision, a graying of vision (less signal received the cones in the eyes), a loss of peripheral vision (tunnel vision); light-headedness; or sweating or clamminess. At the first sign of a problem, ask the nurse to check your BP immediately. If your BP has dropped, the nurse can help deal with problem by slowing the exchange rate or putting you in a different position. If the symptoms continue to get worse, alert the nurse again. You might have to stop a session, but that’s OK; passing out or crashing is not something you want to do. Also, make sure that the nurse is aware that you are prone to very low blood pressure. Let the nurse know that you have crashed in the past, although not from PP.
Godspeed with your treatments next week and tyr not to worry too much if you don’t see immediate improvement.
MarkEns
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May 10, 2008 at 5:58 pm
Hi Kenneth,
I went through the P/E for over a year, and it did not help me. I would go for an all-day treatment, for one full week each month, to no avail. I am on Chemotherapy now, in my doctor’s team trying to put the CIDP into remission, though not having much progress so far.
I used to HATE the venal catheter–they would put one in each month, taking it out at the end of each week. You cannot take a good shower due to the difficulty in keeping the area dry.
I also had a problem bottoming out or crashing with very low blood pressure. The P/E process itself can lower your B/P, which is why during the process, the nurses take constant vital signs. They adjust the machine if they see it starting to drop. That is also why there is a crash cart in the PP room.
I also had constant anemia from the PP, to the point that I would have to get a couple of units of blood every so often.
Good luck with your P/E, I do hope it works for you, as I know it has worked for others.
KEDASO -
May 12, 2008 at 12:23 am
I had 5 PE treatments when I was first dx with GBS (later cahnged to CIDP.) That was in April 2002 & they did not help me at all. Then that Oct-Dec I had them once weekly for 12 weeks, also had IVIG & solumedrol on the same day each week. None of these treatments helped me at all. But about the blood pressure, I have always had normal BP readings, except when I first came down with CIDP, then it was high for a few months. But when I would have PE my BP would drop dramatically toward the end of the treatments, which I think is common during this procedure. So because of what has already happened, I think they should watch you even more carefully.
I think with this procedure a person should know within a week or so if it is working. I consider it a very invasive procedure, so if you think it is making you weaker, I would disconue it, too many things can go wrong…
Pam -
May 16, 2008 at 11:06 pm
Ken,
How are you feeling now?I had the perma-cath inserted before I started P/E. I dragged ass from the procedure for a few days after I had the cath put in. I was wondering if you had improved after a few days?? I had it removed after about 2 months. They determined that my veins were healthy enough to do the treatments through. The perma-cath is convienent during the treatments but a pain living with.
I would also suggest that you talk to your Doc about getting on an immune suppressant like Cellcept (There are others. That is the one I am on.) My Doc recommened multiple therapies. Medicine like Cellcept can take 6-8 months to kick in. You will need to get something else going on so that you can eventually stop/push back the P/E treatments eventually.
Damon
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May 17, 2008 at 10:12 am
Damon, i t seem like it’s getting worse. My legs are definitely weaker. Yesterday my left arm is killing me – just touching my forearm causes extreme pain. I now finished 5 treatment of P/E… so let’s see if that will bring about any improvement. Today is my last Prednisone.
[QUOTE=Damon]Ken,
How are you feeling now?I had the perma-cath inserted before I started P/E. I dragged ass from the procedure for a few days after I had the cath put in. I was wondering if you had improved after a few days?? I had it removed after about 2 months. They determined that my veins were healthy enough to do the treatments through. The perma-cath is convienent during the treatments but a pain living with.
I would also suggest that you talk to your Doc about getting on an immune suppressant like Cellcept (There are others. That is the one I am on.) My Doc recommened multiple therapies. Medicine like Cellcept can take 6-8 months to kick in. You will need to get something else going on so that you can eventually stop/push back the P/E treatments eventually.
Damon[/QUOTE]
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