Starting Plasmapheresis on Monday. Have questions
September 14, 2017 at 1:46 pm
I was first dx with CIDP in Nov 2015 and had 1 round of IVIG (3days) in Dec 2015. All my symptoms went away in Feb 2016 and I had my life back. I was a runner and started running again and exercising. My neurologist never did any follow up or additional treatment in the meantime and in Feb 2017 the symptoms came back. He said he thought I was getting better and the newest protocols is to not over treat CIDP. I went back to see him about 3 times between Feb 17 – Jul 17, each time my symptoms were getting worse, but he kept saying that I was doing better. Finally, I went to his office in Aug without an appointment, and pretty much insisted that a nerve conduction test be done. I needed him to believe me when I said I was getting worse. I had to stop running in May and stopped bootcamp in Jul. Anyway, the nerve test proved what I had been saying and he decided to treat me again. I’m getting admitted to the hospital on Monday for the plasmapheresis, but I have a few questions.
1. Where do they put the IV? Arms, neck, groin and what determines the placement?
2. Has anyone suffered any SERIOUS side effects? My Dr. is reluctant to do the treatment because he keeps saying I may die (yes, he is really saying this), and he doesn’t want people to question him as to why he did the procedure even though I can still walk (is this a protocol for CIDP treatment with plasmapheresis (I have to not be able to walk?)). He is the one that initially recommended the treatment. I wanted the IVIG again, but my blood levels dropped with the first treatment so he didn’t want to repeat.
3. Were there any side effects that are ongoing after the treatment?
Thanks for any and all info.
September 14, 2017 at 4:52 pm
My daughter just went through Plasmapheresis with GBS. Placement was the neck (doctors said its the cleanest place and prevents from infection and nobody said she may die from this! ) Mostly she suffered from being cold inside because the new incoming blood is cold. A warm Bottle and good blankets helped her. The treatment was successfull and speeded up healing a lot. No side effects after.
September 14, 2017 at 6:20 pm
My PE questions thread is here https://forum.gbs-cidp.org/topic/please-educate-me-on-plasmapheresis
September 15, 2017 at 9:39 pm
I had plasma exchange through a Quinton catheter in my groin. This restricts movement, but I was already immobile. I had nine exchanges over a three-week period and had no side effects.
I think the doctor installed the catheter just did what seemed easiest in my case. He told me he had no preference for either location. This was not the same doctor who oversaw the plasma exchange and neither one was my neurologist. This is the age of specialization.
There is a risk to any invasive procedure, but I don’t think the risk is great provided that it is done by experts.
I have residuals but these are not side effects of any procedure.
September 20, 2017 at 2:24 pm
I have been on and off plasma exchanges since 1996. The only problem I have had was a drop in blood pressure and fainting during the very first exchange. I have had needles in the arm, perma-caths, and currently vortex ports implanted in my upper chest. IVIG was not effective for me and plasma exchanges have kept me active. I also get an infusion of 1000 mg of metholpredisone at the end of each exchange. My exchanges are done by the Red Cross and they use a blood warmer for the return line which keeps the body temp up. You may want to ask about that. Some times I am tired for a day or so after the exchanges, but that is infrequent. Hope the PE helps you.
October 19, 2017 at 2:05 pm
Hi guys Im nervous.. I have been diagnosed with cidp..I start ivg treatment on monday..Ive had this for 8 months in addition to breathing problens which i been seeing a pulmo for.My question is i have to go for 5 days next week..Is it painful will i be out of it.My job knows ill be out sick so at least thats good. But I know there could be side effects such as cold like symptoms..and yes breathing problems..Can anyone fill me in with info.. i have been walking with a cane and can barely stand up for few mins..This been worst experience in my life ..This all happened out of nowhere..Any advice is helpul thk u And godbless u all and speedy recovery!!!
October 20, 2017 at 5:42 pm
The only side effects I have from IVIg is that I’m worn out the next day.
I had breathing problems when I first got CIDP. Hopefully the IVIg will help you. If it does, you will see improvements over the next couple weeks. Good luck.
October 23, 2017 at 3:57 pm
IVIG was my first treatment after my CIDP dx. 3 days of treatment. The evening after day 3, I started getting a headache that can only be described as feeling like someone was stabbing my temple with an ice pick. It was excruciating! Then the “flu-like” symptoms started; high fever, chills, body aches, and still the headaches. My blood levels also starting dropping, so had to have consults with hematology, and infectious disease (ruled out).
But with all that, within 1 month after treatments I was completely back to my old self. I could do EVERYTHING again, including run (I’m a half-marathon runner)!!
The doc never did any followup which was probably a mistake because exactly 1 year later, the symptoms returned.
October 19, 2017 at 7:59 pm
As i understood from my daughter that went through it recently its not painful only putting the tubes is with pain depending on how you react to local anesthetization, the treatment itself is painless and only thing is the cold feeling from inside, warm socks and a warm water bottle and good blankets help. The treatment really helped her out and improved a lot her condition. Good luck and wish you soon full recovery!
October 19, 2017 at 8:33 pm
How did your experience go? Very interested to hear about the process and if you had improvement?
October 23, 2017 at 3:47 pm
Well, it’s been almost a month since I finished my treatment. I did 5 treatments. On, On, off, On, off, On, off, on. Prior to starting the treatments, I was walking with a limp, no muscle strength in hands, could not open cans with manual can opener, my calves were constantly tight.
2 weeks after the treatment, I’m no longer limping, but overall I would say the treatment was not successful. Feet and hands still burn, tingle and feel numb. I still can’t run, I still can’t open cans, I still can’t …….
The treatment itself wasn’t bad. The most trauma was the placement of the catherer, and the constant pain from that placement. First 3 days after the placement I had to take pain pills. I did have an allergic reaction (hives) the 1st treatment, so I received IV benedrayl (horrible), and then a pill of Benedrayl each time before my treatments. The lowest my BP ever dropped from 90/45.
I have a followup appt with neurologist on Fri, and I guess I will start on the Prednisone (which is something I NEVER wanted to do but I feel like I have no choice. Neuro won’t do the IVIG because I had bad side effects after day 3. I want my life back. I want to feel well again, and be able to do all the things I use to. So will try a very low dose of Prednisone (maybe 10mg).
October 19, 2017 at 8:36 pm
Heres a couple of brochures on Plasma Exchange from the company that makes the exuipment. I found them informative.
Info for providers and patients
October 19, 2017 at 8:45 pm
Ugh, ran out of edit time when fixing:
exuipment = equipment
Also wanted to add they can do periheral vein access and a central line is not necessarily required.
Info for providers and patients
October 23, 2017 at 2:45 pm
hey guys.. uggg been in treatment for the cidp.. all morn/day ivg.. definitely not pleasent its painful.Im tired.People that had it after first day how did u feel? I can barely walk.. And I know it takes time but wow very painful..
October 23, 2017 at 3:56 pm
oh ok well i had been on prednisone til about a week ago but that was for my lungs..Ive had ground glass on lungs.. May need chest biopsy around corner soon..The ivg another 45 mins left its rough..But good to know the info u gave.I have some weakness in hands and arms lately.Been walking with cane 7 months.I hear u in wanting your life back the lil things we take for granted like walkinv.While the ivg in me pain through out whole body diff parts at times..Like right now my whole left leg and hand on fire!!
October 23, 2017 at 8:15 pm
hey guys.. uggg been in treatment for the cidp.. all morn/day ivg.. definitely not pleasent its painful.Im tired.People that had it after first day how did u feel?
Guess everyone is different. I had no issues with IVIG and felt fine…just a little tired and took a nap. I could not describe it as painful.
Best wishes to you in your TX.
October 23, 2017 at 8:20 pm
The most trauma was the placement of the catherer, and the constant pain from that placement
Sorry to hear your first set was not successful. My neuro has suggested PE, but havent made a decision yet.
Where did they do placement…a central line? Ive read some places do peripheral vein access now.
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