AnonymousJuly 9, 2008 at 8:24 am
I am home from 6 days in the hospital. They did 5 treatments of plasmapheresis. I started feeling stronger after the first treatment. After the second one I was able to walk normal and use both hands and my energy level went up dramatically. The plasmapheresis nurse told me they have had great success with CIDP when they do the 5 treatments in a row. I feel great and almost back to normal. The port was definately the worst part of the treatment! They put it in while I was fully awake which I will never do again. Forcing 12 inches into my chest was definately painful! I had no problem with the plasmapheresis. My blood pressure would go down during the treatment but come back up after it was over. Now it is just waiting to see if my body can take over and fight off the autoantibodies. I am hopeful it will last. I asked why they were doing ppfirst instead of ivig and they said because the pp is so much faster (almost immediate) I have to admit for now I am a believer!!! I just can’t believe how much better I am. I will let you know if it lasts!
One other question have any of you had any issues with dehydration on CIDP? I dehydrate so fast and my skin tergor is awful. They tested me and my saline was very low but yet I have extreme thirst and drink all the time. Unfortunately I excrete more than I intake. The did the diabetes test and I was fine My kidneys are functioning normal. Just wondering if this has affected anyone else?
AnonymousJuly 9, 2008 at 10:45 am
I have GBS but had the pp treatments. Dehydration has been a big problem for me since getting GBS Oct. 07, before pp was started. My mouth and throat would constantly stay dry if I didn’t take sips of water every few minutes. The swallowing was affected also, minced and soft food for the first six weeks and a lot of choking.
I complained several times about it to no avail. It was as if my mouth was not producing saliva and GBS had attacked the saliva glands. I’m convinced that if other internal organs are attacked, (bladder, bowels, lungs, etc.) so are the saliva glands.
As I have slowly gotten better with GBS, the dryness in my mouth has improved. I can go longer without those sips of water. I now have trouble being in air conditioned places too long as it will dry my mouth and throat . Where I go, my water goes!
I know some medicines as a side affect will give you dry mouth but I have never had dry mouth and throat like this with any medicine.
AnonymousJuly 9, 2008 at 11:17 am
Iread with interest your story. My husband Bill has been On prednisone and imuran and got sepsis, now he is on ivig. Has had two sessions of it 6 weeks apart with no improvement.The doc refused to do closer together so Bill is going to see if he will do plasma pheresis as doc suggested it if after 3 treatments of ivig. He has only had two. We also are going to Cleveland Clinic in August (26th) but my fear is that his nerves are being attached in the meantime/
We call Cleveland 2 times a week as we are on a priority list for any opening sooner. I cannot help you right now but I find this very comforting. Suprised that your doc started this so soon however sounds like it is working. Yes my husband did get dehyrated with sepsis and white blood count way down and blood pressure also down but all ok now.
I would like to know what state you live in and who is your doctor. Can you reply to this.
AnonymousJuly 10, 2008 at 12:55 pm
Thank you for all of your replys about dehydration. The nurse who did my pp said she had never seen anyone dehydrate as fast as I had. My saline level is low so you would think I would not be thirsty but I am constantly. They measured my output in the hospital and Iwas putting out 4.5 liters a day and taking in about 3 -3.5 liters. Also my skin turgor is awful It looks like someone has pinched me and it will not go back. It is interesting that this may be a side effect of GBS and CIDP. I will look into the biotene products. Thanks for the suggestion.
I had my pp done at Phoebe Putney Hospital in Albany, GA My doctor is Dr. Alan Little. He said he has had great success with pp and his CIDP patients. For me it was an immediate improvement after the first. His method is you do 5 treatments in a row. I skipped the third day to let my body rest. I had no bad side effects so they were able to do them in 6 days. Some people have side effects and they have to skip every other day. I asked why more doctors don’t do the pp first and the only explanation was that maybe they don’t have the machines to do it so they go the ivig route first. 🙂 🙂
AnonymousJuly 10, 2008 at 10:15 pm
Marilyne, I am glad the PP worked for you. OMG I can not believe you had a port put in while you were awake. You are a very strong and brave person.
When I had my tunnel cather put in they knocked me out.
I have been doing PP since last Aug.
Before I have my treatments I will drink gatoraid or something on that line all day before and after. Hope this helps you.
AnonymousJuly 11, 2008 at 12:21 am
Thanks again for sharing your experience with pp. Just to let you know that we had quick apt with the neuro today. This was as a result of my husband calling to share with him the proplems he is now haveing: Falling daily now, gets these violent tremors in legs and will go down unless he can get to a chair iin time. Neck and upper back hurting just from physical working with his arms like in the shower to hold on while showering. He has to rest immediately upon leaving the shower. Very fatigued and so on .
I was hoping he would still consider doing ivig in less than 6 weeks to see if that would show some improvement. Doc said that he called 3 doctors after talking to my worried daughter who he said was condisending to him. Like he did not know what he was doing. I also feel that way but he did not acknowledge.
Bottom line is that Bill is to get pp next week starting on Thrusday for 5 days.
He can start in hospital and then go in as outpatient the rest of the 5 days. I answered in hospital all 5 days as we have an hour to get there and if something goes wrong or he gets really sick I do not want to have to take him in traveling that far. When he got sepsis I did not go to the docs hospital as I did not know how bad he was and would I make it on time.
Now with your response I see why it was even mentioned. I did not know he might need to rest inbetween without treatment one day. I would think that if he needs a break they would let him go and start again. Any comment.
Truthfully I am very nervous about this . I know it is more dangerous than ivig. He claims no one is farther from him that 20 steps and monitored all the time even a urologist testing his kidneys. He also mentioned we might have to go with one of the cancer drugs along with this. Now we are talking cellcept or Rituxin or another one which also starts with a C. I questioned Rituxin and how he could get it and he said do not worry I can get it.
I am really scared.
AnonymousJuly 11, 2008 at 12:24 am
I am so happy that the PP treatments worked so well for you. When I was first dx with GBS in April of 2002, back when only my hands & feet were numb, but still functional, & I could still walk (just had a little weakness in my knees), I was given five PP treatments in 8 days. The entire time I was on the treatments, I continued to deteriorate. I was then released from the hospital & sent home to keep getting weaker, only to wake up a few weeks later unable to walk, raise my arms, & had lost the use of my hands.
I was then taken by ambulance to Mayo in Rochester, MN where I would be inpatient for 3 months. I was then given daily IVIG for 5 days & then twice a week. With the exception of the little bit I gained back from solumedrol (steroid infusions), I would remain this way for almost 2 1/2 years. I was told it was because I had the progressive form of CIDP, not the relapsing/remitting. I think one thing that I have learned after almost 6 years on this forum, is that both treatments basically do the same thing; try to stop the bad antibodies from attacking the nerves.
Obviously you have the relapsing/remitting form of CIDP, thus the quick recovery. For those with the progressive form, it seems that neither treatment works that well. Personally, after having 17 PP & over 40 IVIG infusions the first 8 months I was ill, I would pick the IVIG any day. It is so much less invasive & thus easier to tolerate. It was finally cytoxan infusions (chemo) that arrested my CIDP. I am not back to normal, never will be, but I am so much better than I was for far too long. I can take walking with AFOs & sometimes a cane any day to where I had been. I have been the same since the summer of 2004 & have not had any treatments since Sept of 2003…
AnonymousJuly 11, 2008 at 12:29 am
I am glad PP worked for you…I also had PP done in 2003 after being treated with ivig(little effect) and prednisone(did not like side effects)diagnosed with CIDP in 1996. So far the PP has kept me very stable since 2003 and I am currently on no other meds. I had my port put in with just a local(don’t like to put under plus I get so sick) and didn’t think it was to bad. I went straight to dialysis instead of recovery.
Hope it keeps working for you
AnonymousJuly 12, 2008 at 10:34 pm
I posted a thread about my 7 year old with CIDP and the doctors have been talking about using Cytoxan as a treatment option and I’ve been looking for anyone with experience with that and I found your post. So have you not relapsed at all since the cytoxan? I would really appreciate any details about that treatment for you.
AnonymousJuly 13, 2008 at 4:42 am
I only had the pp done the one time in 2003. I am lucky my condition has been stable..I am not 100%..my biggest problem is numbness on the bottoms of my feet but at one time I had numbness up to my knees and fingertips really bad with alot of weakenss walking that has gone and the neurologist seems to think that the bottoms of my feet may be permanetly damage. Since the improvement with the pp I have I have taken the wait and see, I still have to really be careful and get my rest, fatigue is my biggest enemy and the hardest thing is my family thinks i am fine because i don’t look sick and i try to explain to them how i feel but i stopped because i felt like i was just compalining an no one was listening that is why i come read this forum.
AnonymousJuly 13, 2008 at 11:25 am
Lynette, Thanks for your reply. That is encouraging news because it seems like every other blog I have read had to have it done over and over. Hopefully mine was diagnosed quickly so that I won’t have any permanant damage. I felt like a million dollars for a week after my first 5 treatment but yesterday i started feeling tired but thank goodness no weakness. I am trying to lay down when I start to feel tired because I agree with you fatigue and stress are my worst enemies. We just have to listen to our bodies and take care of ourselves.
AnonymousJuly 14, 2008 at 1:33 am
Marilyne, Wow your post about the port brought back some bad memories! I too had a port for pp and I couldn’t believe that they leave you awake while they put it in! I did fine until they were done and then had a full on anxiety attack! Never again! My heart goes out to you!
I’m glad the pp worked for you. I had it for 5 days straight and it did very little for me, I was back in the hospital 1 1/2 weeks later! I guess that is the tough thing about CIDP/GBS, everyone is so different!
But again, I’m so glad its working for you! Here’s to sunnier tomorrows!
You must be logged in to reply to this topic.
AnonymousSeptember 8, 2007 at 6:26 pm
I am currently undergoing plasmapheresis and it never dawned on me to ask.
After two previous stays in the hospital (16 treatments of ivig) my doctor had mentioned that he wanted to try pe next. I have had 5 so far and I am seeing improvements. I am stronger and able to walk and stand longer. I also am now able to turn a door knob and I cut my hamburger in half tonight both things I was unable to do earlier this week. I looked up info on plasmapheresis before I started. Here is a web link to MDA website.
You must be logged in to reply to this topic.