Has anyone had Plasmapherisis???
AnonymousFebruary 13, 2011 at 4:37 pm
I haven’t posted anything for a while now…but recently my CIDP has been getting worse. I was on Vivaglobin, which I never felt worked very well. So my neuro put me back on IVIG several months ago on double the dose that I used to get, plus I get it two days in a row every three weeks instead of just once every three weeks. Anyways, I went back to see my neuro last week, and he told me that the CIDP is currently active, and it had made me a lot weaker. He told me that he wanted to add something else along with the IVIG.
That’s when he mentioned plasmapherisis. He said that I have to have the bad antibodies in my blood taken out. I have heard of it, and he explained a little bit…but I have to go to a hematologist to get it all started. I’ve researched what I could online…but I would like to know if any of you have had this done? What can I expect…did it help you? I watched a few videos on youtube of people getting plasmapherisis, and it just looks scary!
My neuro said to have it done, I have to be admitted to the hospital, and the first time I will have to stay for five days…they will be doing the plasmapherisis every day. But after that, if it helps me, I’ll have to do it every 2 to 3 months, and only have to be in the hospital for two to three days until I get better than I am now. And then I’ll only have to do it when I feel like I need it.
If anyone has any information about plasmapherisis, or has had it done, I would really like to hear from you.
AnonymousFebruary 14, 2011 at 12:19 am
I have not had that procedure. But if you get it done, I’d like to hear about it. I have had the IViG, but developed blood clots from it. I was given SoluMedrol infusions (high doses), and put on high doses of Cellcept. It has been over a year on this treatment. I am seeing some drastic improvements just recently. It’s amazing how slowly this cidp improves. Have you tried the Solu Medrol infusions? Or Cellcept? I was wheelchair bound and I am finally taking steps (with my afo’s on). I have to use a cane but it is amazing to me.
AnonymousFebruary 14, 2011 at 1:57 am
Many years ago when I was first diagnosed with CIDP, I had 17 plasmaphersis (PPh) treatments. They didn’t work for me – and I eventually got onto IVIG and that ‘worked’ – still does, kinda.
I knew nothing about CIDP or PPh and found myself in a room with the dialysis folks, a set of tubes (in/out for venous access) in my neck. It was overwhelming for me because I didn’t know enough then to ask the right questions. All new to me and no one really ‘explained’ anything before hand. For me, knowing ‘whut up doc?’ is biggie. Nurses are an excellent source of knowledge, a little visit and discussion with them before hand would have been great. I did learn that the dialysis folks were way ‘sicker’ than me and while I wish them all well, I’d rather have been in a different room. I believe the PPh theory is to remove the bad guys and your body will replace them with the good guys. I’ve read where PPh works for some and not for others.
Except for the tubes, install & remove – I just laid there and let the nurse and machine do the work ~ no problem. I don’t think the PPh did me any harm and was worth a try, although later I found out that IVIG should have been tried first. It sounds like you are no stranger to medical procedures and are doing your homework. With this weird disease its very hard to really know what’s best. Today, I would not be as intimidated. My best wishes to you.
February 14, 2011 at 11:53 am
My first treatment for CIDP was PP. It really worked well. Only problem was access. After PP (5x each session) twice and thus in hosp 6 days each we switched to IVIG. 10 years latter we switched (big reaction) back to PP and again it worked well for 4 years (now back on IVIG) with some access problems but all in all – other than the 5 times a month at hospital – it worked well for me.
AnonymousFebruary 14, 2011 at 11:31 pm
[QUOTE=Bill]My first treatment for CIDP was PP. It really worked well. Only problem was access. After PP (5x each session) twice and thus in hosp 6 days each we switched to IVIG. 10 years latter we switched (big reaction) back to PP and again it worked well for 4 years (now back on IVIG) with some access problems but all in all – other than the 5 times a month at hospital – it worked well for me.[/QUOTE]
I have had cidp for 11 years and during a bad set back in 2005 I had a out a dozen pp treatments. I actually liked them and felt like a new person. But my first set of central lines got a staph. Infection which required a pic line and daily antibiotics for 1 month. Mayo clinic really wanted me to have these treatments more often but living in a small rural area made that hard. Although a was a great patient to observe since my disease were both rare. I wish you the best and remember to stay positive that always helps.
AnonymousFebruary 15, 2011 at 12:10 am
[COLOR=black]Yes, I have been using plasmapheresis, also known as therapeutic plasma exchange or TPE, for five years.[/COLOR]
[COLOR=black]There are two considerations to start: do you have large, easily accessed veins? If so, then at least the initial treatments will be relatively straightforward. If not, then you will need some sort of vascular access device. For a trial run of TPE like the one your doctor is proposing, you will most likely get a catheter inserted into your jugular vein. It is mildly uncomfortable, and disturbing to look at, but it is not really all that bad. If you are going to be in a hospital, the procedure will be done while you are in bed. Just look away from the machine and go to sleep.[/COLOR]
[COLOR=black]If it does help, you might need a more permanent catheter. If you do, you must make a commitment to maintain it well. Otherwise, it can clot up or become infected, both potentially very serious effects.[/COLOR]
[COLOR=black]Your doctor is likely wrong about the how often it will have to be done if it helps you. I don’t know anybody using TPE as his or her main treatment who can go two or three months (although I would be happy to be wrong). Every two to three weeks would be more like it, especially at the beginning. You might get to 6 weeks and maybe even two months, but I would not count on longer. Depending on where you live, you might not need to be admitted to hospital to have it done. Mine, for example, is done by my medical provider’s outpatient infusion center.[/COLOR]
[COLOR=black]If TPE works for you, you should figure out the schedule of when you start to feel worse and start the treatment a couple of days before. You could get a longer interval between treatments if you combine TPE with an immunosuppressant. However, you have to weigh the risk of negative effects from the immunosuppressants against the advantage of a longer interval.[/COLOR]
[COLOR=black]By the way, nobody really knows how TPE works. Not just bad antibodies are removed, but cytokines (molecules that cause inflammation) and other portions of the immune system. [/COLOR]
[COLOR=black]Godspeed in getting an appropriate treatment.[/COLOR]
AnonymousFebruary 15, 2011 at 11:30 am
I looked up several PE reference sites. I liked this from the Muscular Dystrophy Association. Well, we do have MDA don’t we?
“[I]…What is plasmapheresis?
Plasmapheresis is a process in which the fluid part of the blood, called plasma, is removed from blood cells by a device known as a cell separator. The separator works either by spinning the blood at high speed to separate the cells from the fluid or by passing the blood through a membrane with pores so small that only the fluid part of the blood can pass through. The cells are returned to the person undergoing treatment, while the plasma, which contains the antibodies, is discarded and replaced with other fluids. Medication to keep the blood from clotting (an anticoagulant) is given through a vein during the procedure…[/I]”
I took note of the part about, or close enough to, all plasma is removed and replaced by ‘other fluids.’ All plasma? See the next paragraph.
Refer to this part of the same article, “[I]…Excessive suppression of the immune system can temporarily occur with plasmapheresis, since the procedure isn’t selective about which antibodies it removes. In time, the body can replenish its supply of needed antibodies, but some physicians give these intravenously after each plasmapheresis treatment. Outpatients may have to take special precautions against infection….[/I]”
The whole deal is here, and last updated 12/2010. Hope you’ll read it all:
Question- What is the plasma they give back to you?
AnonymousFebruary 15, 2011 at 12:10 pm
I had thirteen plasmapheresis (or plasma exchange) treatments in 2010 and they saved my life. I’ve also had a number of IVIG treatments and they didn’t work nearly as well for me.
Everyone is different. Some people have better results with PE and some have better results with IVIG.
I went from near death in Feb 2010 to a full recovery from CIDP in roughly 5 months because of PE (and a helluva lot of determination busting my ass in rehab).
Hope you have as much luck with them as I did.
AnonymousFebruary 15, 2011 at 4:50 pm
🙂 Hi, I’ve been on Plamapherisis for the last 8 months and it’s helped me a great deal. I’ve never been on IVig, although my original Neuro wanted to start me on that treatment. Unfortuantely my heart rate was too slow, 48,52 beat per min. He had given orders that the infusion would have to stop if my heart rate dropped below 50bpm. In short, infusion was going to take 10hrs or longer. I had a pacemaker implanted and went for the 2hr Plasmapherisis as an out patient.
The original idea was to stay in-hospital for five days while IVig was taking place. Let me add what I feel is most important: approach that treatment in the most positive way possible. Never think that it’s not going to work. My experience is one of feeling very tired after treatment and others I’v spoken to say the same. After all they are pulling blood out of one arm and passing into another. Although there is never very much blood out of the body at one time, it is tiring. A few days later it kicks in and you feel much stronger all around. Let me add, if it helps, that I’m an old man, really old, so the affect of the treatment may be different for me. But I’ve spoken to younger people and they all say the same: they feel tired after treatment. Talk to the nurses. I’ve found them very knowledgeable and willing to explain the process. Doctors are only around if needed and then they say little.
All the best, I’m sure you’re going to be fine.
February 16, 2011 at 5:13 pm
I have been taking plasma exchanges off and since 1996. Have had over 400 exchanges without problems. The procedure takes approximately 90-120 minutes depending on how many liters of albumin the exchange involves. Most doctors suggest a central line be used, however I was unable to have any long term success with them as all five of mine became infected despite the steril maintanance steps, heprin flushes, etc. The past two years plus, I have have my exchanges using vein punctures with 18 guage needles. Had them every three weeks, and veins are still in great shape. The Red Cross did all of my pp’s in a hospital out patient setting. As a side note, while the access line has to be in the annicubical (sp?), the return line can be a 22 gauge angio cath which can be put pretty much in any other vein which allows the access line to alternate arms. Nurses don’t like to do it, but it works fine.
Not everyone is as fortunate as I have been with their veins and have no choice but to go to to a central line. The Red Cross nurses have been telling me about a newer port the is placed under the skin and is accessed with a special needle. Being under the skin, the risk of infection is virtually eliminated. I do try to care for my veins to minimize scar tissue by putting ice packs on the puncture sites for 20-30 minutes at least 3-4 times before bed the day of the procedure. After that, I rub the puncture sites with either vitamin E cream or coco butter every day. My doctor is amazed that they can still use my veins and at the small amount of scar tissue. The Red Cross nurses are also surprised at the lack of scar tissue.
As far as the procedure itself, there is no pain (other than the needle sticks-I hate needles), but this can be eliminated by spraying the puncture site with Lidocaine spray just before the stick, or putting Lidocain cream on the puncture site about an hour prior to the procedure. The only side effect I had was during my very first exchange. My B/P dropped and I fainted. Since then no problems. I also take bata blockers to slow heart rate for cardio problems (seven stints) but the PP has no effects on heart or B/P, only the first time.
I have been on over a dozen treatment protocals over the years, and found plasma exchange to always be the most effective in stopping the progression. Frequency of the exchanges was based on the severity of the flare and ranged from daily to weekly, monthly, etc. The past two years I had been taking 100 grams of Gamunex (a glycine based ivig vs others which are glucose based) followed the next day by a 3 liter plasma exchange, then an iv infusion of 500 mg solumedrol. This combination worked very well for me. In December, my doctor and I decided to stop the plasma exchanges and Gamunex for a while to give my veins a rest, and switch to steriods. Currently getting 500 mg solumedrol iv 3 days in a row monthly. Mid month I take 4 days oral prednisone, 20 mg,and seem to be holding my own past three months.
Everyone responds differently to the various medications and treatment protocols, so you have to be your own patient advocate and work with your doctor to find the treatment that works best for you. Many of the treatments members posting have had success with, have not worked for me, so be persistent until you find what works for you. Keep up your spirits and stay after it.
AnonymousFebruary 18, 2011 at 12:47 pm
I had PP treatments wnen I was first diagnosed 11 years ago, they did not work well and I had to have a port put in which was contaminated with E-Coli during a carless flushing. I would suggest that you try IVIG over a 3 day period about once or twice month if you can get your Doctor to go along with it. That seems to be working for me, although I am having problems getting Obama care to pay for them as the are very expensive.
AnonymousFebruary 18, 2011 at 7:36 pm
Thank you to everyone who responded. I saw my hematologist today, and she wants to start the plasmapherisis next week. I’m having it done on Tuesday, Wednesday, and Friday. Thursday I’m having a minor surgery to take out a neurostimulator that I have in my back. But the doctor said for me to be at the hospital early Tuesday morning so they can admit me, and the treatment would take about three hours…after that I can go home…yay!!! No hospital stay!!! I just have to go back on Wesdnesday and Friday. I am nervous…and hopefully it works! I’m so tired of being so weak, and hurting all of the time…I’ll post back after the plasmapherisis, and let ya’ll know how it went. Cross your fingers!!!:D
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