plasma pheresis cathater (Perma-Cath)

[COLOR=black]Hello Rhonda and Ryan,[/COLOR]
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[COLOR=black]Based on what my medical center does, anyone with a catheter must have it flushed at least once a week, by which I mean about every 7 days (about 20% of the time, I will go 8 days, but only once was allowed to stretch it to 9). Based on Ryan’s schedule, he should get it flushed once between treatments.[/COLOR]
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[COLOR=black]The blood center (probably a hemodialysis unit) almost certainly treats mostly people with kidney disease. Dialysis patients typically receive dialysis 2 or 3 times a week, but there might be the occasional patient who receives dialysis 6 times a month. Therefore, they would not have patients who go longer than 5 days between treatments. [/COLOR]
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[COLOR=black]I understand having plasmapheresis (PP) every other day over 10 days (I take it that was six PPs); that is roughly what I did when I first started. However, I don’t know why Ryan would be scheduled for a single PP every other week. I am not saying that it is wrong or bad, just that it is outside the protocols I have seen. [/COLOR]
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[COLOR=black]A typical PP is what is called a “1 volume exchange.” That means a volume of plasma equal to the (calculated) amount of plasma in your body is removed during the treatment. However, because the PP is a continuous process, only something slightly over 50% of your original plasma is actually removed. The rest is the human albumin solution that has been circulated into your body. [/COLOR]
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[COLOR=black]By doing so, you have removed slightly more than the half of the bad stuff that leads to the CIDP symptoms. However, with the second PP, you remove about 50% of the remaining 50%, so at the end of the second PP, you have removed about 75%. At the end of 6 treatments, you would have removed about 98% of all of the bad stuff. It actually doesn’t work that well (you start to make the bad stuff again after each PP), but you get the idea. [/COLOR]
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[COLOR=black]When I was experimenting with my treatment regimen, we tried just PP for a while. After each round of 5 PPs, I did fine for about 12 days, and then started to decline. I could last about 15 to 17 days, but then needed another round of 5. My point is to monitor Ryan’s condition closely for several weeks. If he declines at all, ask the neurologist to schedule more than a single PP every other week. Keep increasing the number of PPs each round until there is no decline, up to 5. Keep that number of PPs and then try to increase the amount of time between rounds. Once you have reached something like 6 to 10 weeks between rounds, then try reducing the number of PPs in each round. [/COLOR]
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[COLOR=black]There are diminishing returns to each treatment so there is almost no value in going beyond 5 treatments. At a GBS-CIDP Foundation symposium (the one in 2006 in Phoenix), one of the doctors said that there was evidence (I think it was for GBS, but it should apply to CIDP as well) that 4 PPs were better than 3, but 5 PPs did not seem to be better than 4.[/COLOR]
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[COLOR=black]I hope this helps.[/COLOR]
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[COLOR=black]Godspeed in your treatment, Ryan.[/COLOR]
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[COLOR=black]MarkEns[/COLOR]
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Hello Rhonda and Ryan,

I just assumed that the PP every other week was a single treatment. But now that I reread your posts, I am not sure about that. Dr. Lewis is definitely an expert, and a very caring person as well, so you are in very good hands.

MarkEns

Rhonda – I am so happy to hear that Ryan continues to progress. You both remain in my prayers.

Hello Rhonda and Ryan,

I am so glad to hear that Ryan walked even a little bit; that he walked with only minor assistance is wonderful. If the treatment works well, we can hope that he will be walking on his own in another month or two.

I am glad to see the protocol was changed. While one treatment every other week [I]might[/I] have worked, the current protocol has the best chance of success.

MarkEns

Hi There,

Glad to hear that Ryan is doing well!

I was wondering if anyone can help with my mother. She has been in the hospital since July 3rd and she is completely paralyzed except for her eyes and tongue movements. The doctors did not test her for GBS or CIDP until I asked them to after a month of her being parlayed. They tested with an LP which confirmed high protein levels in the CSF and started a round of 5 PE treatments over 10 day period. She nodded her head for the first time in over a month and was able to open her eyes all the way. I was so excited! Then they said that treatment was over and she quickly started to decline and within a few days was back to no movement and barely any ability to open her eyes. I begged for another treatment and they said that if she has GBS another treatment should not be necessary. I had to beg to get another round and after awhile the nephrologist said OK to one more only. She got an additional treatments over 10 days and not only nodded, but moved her thumb and one other finger. The doctor’s then said that is all that they would do for her, cleared her from their care, and moved her from ORMC hosptial in Orlando to an acute care facility where she is not seen by a neurologist and has slowly gotten much weaker since her last PE treatment about 2 weeks ago. The doctors told me that nobody gets multiple PE treatments, but after reading your posts I can see that many people rely on these treatments and if they work for my mom then why can’t I find a doctor to give her a chance with multiple treatments. Does anybody know a good neurologist in Central FL? Can anyone help my mother? Please???

Hello Concerned,

Without treatment, has your mother ever stopped getting worse? I ask because the clinical definition of GBS says effectively that you get to your worst point 4 to 8 weeks after onset. If she is still getting worse, then it is at least possible that her doctors should consider a CIDP diagnosis.

Your mother has demonstrated two of the diagnostic criteria for CIDP: elevated protein in the CSF (from the lumbar puncture) and demonstrated weakness. She should have a nerve conduction velocity test performed. Her doctor will have to refer her to a neurologist. If the results of that test indicate demyelination, then a diagnosis of CIDP is something that he should consider. Unfortunately, because it sounds like an NCV test was done not earlier on, distinguishing between the two could be difficult.

Your doctors are largely right that multiple plasmapheresis treatments are not administered for GBS. One or more rarely two rounds of treatment, if they work at all, are usually very effective in GBS. However, in CIDP, because it is a continual attack, multiple plasmapheresis treatments is common. I speak from experience, having done plasmapheresis for over 4.5 years now.

Because she might have CIDP and because she improved with treatment and then regressed without, I would ask the doctors to consider a CIDP diagnosis, which would validate the need for additional treatment. As you probably have noted by now, there would then be three immediate treatments to try: plasmapheresis, IVIg, and corticosteroids. It is too involved to go into details about the treatments here; suffice it to say that, if she has CIDP, she should get something.

As to your question about a neurologist in Florida, I am of no particular help. Call the Foundation office on Monday and ask them for a list of doctors in the area and for the liaison near you. You might also try the medical schools in Florida.

Godspeed in finding help for your mother,
MarkEns

I have had my cath since May, they did a boost of 5 treatments to get me at my best and now I get it every 3 weeks. A nurse came to flush every 3-4 days between treatments. I now flush my own lines and my mom does my dressing. I’m still on pred as well 30 one day and 0 the next. They always flush my line when I get my treatments. Hope all works out well for u

My daughter has had a perma cath for just 2 years now, she receives PE 1 x 3 weeks for ‘maintenance’ and the county hospital is reluctant to do that. Last November 09, she received the once every 2 days of 5 treatments. This is for CIDP dx’d in July 08. She did not respond to IVig. We see some decline in her condition just at the end of the 3 weeks, just before the PE.

To the lady whose mother was dx’d GBS, you were great to insist on a dx, to me she sounds more like CIDP. Any chance you can change docs? I know with some health systems that is difficult. Once again, there are diagnostic tools other than an EMG, a sural nerve biopsy and a muscle biopsy, both require short surgeries but seem to be essential in a proper diagnosis.
I don’t feel your mother is getting proper attention, KEEP AN EYE ON HER BREATHING!! CIDP will attack the nerves of the diaphragm (sp?), you will see a significant change in breathing. She may also begin to hallucinate due to inability to exhale properly and blood gases will build up. Unfortunately you are the one who will need to take action in order to have this recognized!!

To the woman whose son has the perma cath, my daughter’s is only flushed once a week with heparin, and we were lucky to get that. Home health is discharging her. It is impossible to find anyone who knows how to do it, the nurse who comes out learned the procedure from the Hema Care people over the phone. We may have to go to county hospital (in Los Angeles I can’t even begin to convey how difficult that is) once a week instead of once every 3 weeks if I can’t come up with an alternative.

To Mark Ens – I am still going to call you! I feel buried every day and have to pick and chose priorities on a daily, sometimes hourly, basis.

We are off to PE today.

Concerned, what part of central florida are you located ? I would recommend you my neurologist, but Im all the way in daytona beach.

Hope you can find someone to help your mom soon.

Rossana

Dear Rhomcc, looks like you got some good info from Mark Ens, but yes to reinforce what he said, the cath needs to be flushed every 7 days at most. You are fortunate to have home health come and take care of that, hopefully that will last. We are currently struggling to retain the home health just for that, we go in for everything else or I take care of it at home myself. I am thinking I will need to learn how to flush the cath myself, getting to the county hospital just for that is very difficult and would take 1/2 day!

to Concerned: Please post a new thread asking for someone to help you find a new neuro in your geographic location – your mother needs better medical care (not your fault at all) remember most docs never have heard of CIDP, and very few of GBS. She is not getting a good diagnosis and it could be something else entirely. We went to 3 different hospitals and several doctors before getting the dx.

By an odd quirk, I was in New Smyrna Beach on vacation when I had a very bad setback, and wound up in the emergency room at Bert Fish Medical Center. I saw a neurologist there named Kolori (not totally sure of the spelling) who was very good. He immediately scheduled plasmapheresis for me, and after three treatments in five days, I was good enough to return home. I’m sure that if you would call Bert Fish, they could put you in contact. Just be sure it is the Bert Fish in New Smyrna. Believe it or not, there are two Bert Fish Hospitals.