Hi. I was diagnostic with cidp February 11, I got 3 ivig treatments and I was getting worse and worse, my doctor change my treatment, and yesterday i started with my first plasma exchange,I am doing 5 every other day. Can some one tell how does the pe works?
Glad you are getting treatments. Hope you respond to the PE. I had 5 PE treatments and they were very beneficial. My doctor then switched me to IVIG which I currently have on a monthly basis.
ive had cidp for almost 4 years. ive taken prednisone, ivig. my veins wont support plasma exchange.
has your dr tried prednisone just to get you "under control"?
it worked for me when my spinal fluid showed elevated protein....7 days on steroids and I was walking again...with a walker, but I eventually got stronger and HEAVIER!! but id gladly take the weight over being paralyzed.
are you being treated by a neuro? Where state do you live in?
Good luck to you
GonnaGetBetter said:
ive had cidp for almost 4 years. ive taken prednisone, ivig. my veins wont support plasma exchange.
has your dr tried prednisone just to get you "under control"?
it worked for me when my spinal fluid showed elevated protein....7 days on steroids and I was walking again...with a walker, but I eventually got stronger and HEAVIER!! but id gladly take the weight over being paralyzed.
are you being treated by a neuro? Where state do you live in?
Good luck to you
I did the IVIG twice, once in hospital and one with home health care at home. Both times I got a chemically induced meningitis headache. It was awful. However, it worked by putting my weakness in remission for a few months after. The next time I started getting weak again they did plasma exchange in hospital. I got 5 treatments over a 9 day period. I have gone through this twice and it has been very effective. Just before my last exchange, I started taking prednisone and imuran and I have not had any relapses since Nov 2013. PE works by taking your blood and removing it and separating the plasma from the red part and replacing with Albumin which is the new plasma taken from donors. The disease is carried in the plasma so that is why they give you new. However, since the disease is still in your body, it eventually seeps back into your plasma, so that if the meds are not effective you will have to continually have your plasma exchanged. Some have once a year, some once a month, some bi-weekly, etc. Depends on the person. Hopefully if this treatment is effective you will not have to have very often. One option may be (which they have discussed with me) is having a permanent port put in under your skin so that you can go and have it regularly on an out-patient basis. Right now my meds appear to be working in place of having plasma exchanged, so I am hopeful that I won't have to have PE in the future. But if I do, I am hoping it is on an outpatient basis because 9 days in hospital gets old fast.
Hope this helps.
Thank you very much, I don’t know what my doctor is giving me after. He told me also medicine, let’s see how it works for me. Thanks again
Rfisher7381 said:
Glad you are getting treatments. Hope you respond to the PE. I had 5 PE treatments and they were very beneficial. My doctor then switched me to IVIG which I currently have on a monthly basis.
I live in Mexico City, but now I’m in Houston, my neurologist is from here. Pic haven’t trie prednisone yet. Thank a lor. I hope pe works
Adela said:
GonnaGetBetter said:ive had cidp for almost 4 years. ive taken prednisone, ivig. my veins wont support plasma exchange.
has your dr tried prednisone just to get you “under control”?
it worked for me when my spinal fluid showed elevated protein…7 days on steroids and I was walking again…with a walker, but I eventually got stronger and HEAVIER!! but id gladly take the weight over being paralyzed.
are you being treated by a neuro? Where state do you live in?
Good luck to you
Yes, My husband had this helpful treatment. GBS and CIDP are two similar auto immune disorders where the body mistakenly attacks itself. It attacks the myelin sheaths around the muscles, starting in the distal regions such as feet and hands, causing one to lose balance by not being able to feel one's own feet, possibly also leg involvement. In severe cases the paralysis extends further and may even effect the lungs. GBS lasts up to two months, whereas CIDP lasts beyond two months. There are sometimes incorrect diagnoses as the doctors can't be sure in the early stages what they are dealing with. (That is another story.)
To answer your question, plasma exchange filters the blood by removing the excessive damaging antibodies that are attacking one's own body. The machine returns the filtered blood. One become tired after the treatment so they are usually staggered to every other day for 5 days of treatment over a 10 day period in the hospital. My hubby was in intensive care to keep infection down while undergoing this treatment. This treatment helped him. Everyone is different. Hope PE helps you.
Best,
GDH
Thanks a lot, I hop it will works also for me.
Gwen said:
Yes, My husband had this helpful treatment. GBS and CIDP are two similar auto immune disorders where the body mistakenly attacks itself. It attacks the myelin sheaths around the muscles, starting in the distal regions such as feet and hands, causing one to lose balance by not being able to feel one’s own feet, possibly also leg involvement. GBS last up to two months, whereas CIDP last beyond two months. There are sometimes incorrect diagnoses as the doctors can’t be sure in the early stages what they are dealing with. (That is another story.)
To answer your question, plasma exchange filters the blood by removing the excessive damaging antibodies that are attacking one’s own body. The machine returns the filtered blood. One become tired after the treatment so they are usually staggered to every other days for 5 days of treatment over a 10 day period in the hospital. My hubby was in intensive care to keep infection down while undergoing this treatment. This treatment helped him. Everyone is different. Hope PE helps you.
Best,
GDH
It’s different for everyone. The 1st time u did pe I started to feel relief after the 2nd treatment. It only kept me in remission for 2 weeks. After a few 5 series treatments I wouldn’t get relief until after the 3 rd treatment. Now I do pe 1x a week. But I will not be doing it for to much longer. I have been accepted to Dr Burt’s Hematopioetic stem cell transplant program & should be starting treatment with him in about 2 weeks. Just waiting in the insurance approval. I know what ur goin through is rough. I have been there. This disease is VERY frustrating. Try to keep ur head up & stay positive. Sending my positive vibes to you. Good luck! Heather
Thanks Heather, I hope it will works for you too.
Heather R said:
It’s different for everyone. The 1st time u did pe I started to feel relief after the 2nd treatment. It only kept me in remission for 2 weeks. After a few 5 series treatments I wouldn’t get relief until after the 3 rd treatment. Now I do pe 1x a week. But I will not be doing it for to much longer. I have been accepted to Dr Burt’s Hematopioetic stem cell transplant program & should be starting treatment with him in about 2 weeks. Just waiting in the insurance approval. I know what ur goin through is rough. I have been there. This disease is VERY frustrating. Try to keep ur head up & stay positive. Sending my positive vibes to you. Good luck! Heather
Hi Heather, I know we chat on the other support group. when were you accepted by Dr Burt?
Do you have a date to start tx....lastly, do you know what made you qualify the @ the first eval?
I leave in 6 days for them to hopefully say yes this time and accept me!!!!
thanks
Debbie (cidp iga)
Heather R said:
It's different for everyone. The 1st time u did pe I started to feel relief after the 2nd treatment. It only kept me in remission for 2 weeks. After a few 5 series treatments I wouldn't get relief until after the 3 rd treatment. Now I do pe 1x a week. But I will not be doing it for to much longer. I have been accepted to Dr Burt's Hematopioetic stem cell transplant program & should be starting treatment with him in about 2 weeks. Just waiting in the insurance approval. I know what ur goin through is rough. I have been there. This disease is VERY frustrating. Try to keep ur head up & stay positive. Sending my positive vibes to you. Good luck! Heather
The IVIG fortunately suits me and got me up and walking about.I keep going on 40mgs every 4 weeks,for over 6 years now so never needed the plasma exchange.
I hope all goes well for you.
I became immune to ivig and only lasted 12 days. so I too was given prednison - a high dose of 50 mg./daily but then taper each month by 5 mg. and also PLASMA.
Its more invasive, but CIDP patients do respond to this treatment and it worked beautfully for me, in fact, i'm in remission currently. I had 3 treatments of PE during the week for 2 weeks, then went down to 2 treatments and so on, once down to once a month for three months, I was taken off, in total had about 100 treatments. By treatment # 5, I was no longer requiring a cane. I hope PE helps you as much as it did me. CIDP patients have to realize and be aware that PE does work and I'm proof of this. It's not fun being on prednisone hense me gaining over 30 lbs, but the two go hand in hand.
Good luck to you.
Hi GonnaGetBetter, the criteria is… High level of protein in your spin, EMG that shows you have CIDP, & current treatment lasts less than 3 months. I have completed all testing already. As soon as my insurance approves the second part of this then I start treatment. It shouldn’t take more than 2 weeks. Also with my insurance (Aetna Open Access) they refund me some of my travel expenses (50% of mine & my care taker’s plane ticket & $50 for my hotel stay & $50 for my care takers hotel stay) my best advise is to stay positive & every time u think about it… Picture & hear Dr Burt saying that you are accepted to his program. A positive mind takes you a long way. Good luck! I will keep you in my prayers. Please keep us updated.
Heather
GonnaGetBetter said:
Hi Heather, I know we chat on the other support group. when were you accepted by Dr Burt?
Do you have a date to start tx…lastly, do you know what made you qualify the @ the first eval?
I leave in 6 days for them to hopefully say yes this time and accept me!!!
thanks
Debbie (cidp iga)
Heather R said:It’s different for everyone. The 1st time u did pe I started to feel relief after the 2nd treatment. It only kept me in remission for 2 weeks. After a few 5 series treatments I wouldn’t get relief until after the 3 rd treatment. Now I do pe 1x a week. But I will not be doing it for to much longer. I have been accepted to Dr Burt’s Hematopioetic stem cell transplant program & should be starting treatment with him in about 2 weeks. Just waiting in the insurance approval. I know what ur goin through is rough. I have been there. This disease is VERY frustrating. Try to keep ur head up & stay positive. Sending my positive vibes to you. Good luck! Heather
Hi Adela, I've managed my CIDP for the past 20 years with Plasma Exchange PE being the most effective theraphy. Plasma exchange is a filtering of the blood to remove, some not all, of the antibodies which attack the immune system in CIDP patients. Referencing to PE for CIDP in the manner dialysis is used for kidney patients is often done to simplify the procedure.
Typical protocal is have several treatments over a short period of time initially. For me, twice weekly followed by weekly PE's was the initial program utilized. Doing PE every other day will put a stress on your body. It takes a good 24 hours following the procedure to be "normal" again. Fatigue is the major side effect noticed.
If you have any questions don't hesitate to ask. Having had hundreds of these procedures the process and benefit is well understood!
Hi Randy, iam in my 2nd pe session out of 5. When should I expected to see some results according to your own experience? I haven’t seen any improvement yet. Thanks a lot!
Adela said:
Hi Randy, iam in my 2nd pe session out of 5. When should I expected to see some results according to your own experience? I haven't seen any improvement yet. Thanks a lot!
I did not feel any improvement until the day after my third treatment but then I rapidly gained strength. I had 5 PE treatments with a rest day between each. Hope you start seeing results soon!
Has any had PE treatments who is type 1 diabetic. I am worried that it will be to hard on my kidneys and veins. I have had diabetes for 40 years
Hi Adela, I noticed improvement around two - three weeks after my first treatment. Keep in mind that the CIDP causes periphial nerve damage due to the inflamation. It will take some time for the nerves to regenerate. Best analolgy is think as if a burn on a hand had occurred. Would you expect the burn to stop hurting right away? Probably not. PE removes the antibodies CIDP brings into our blood. Without the bad antibodies, our periphial nerves start to repair themselves. Here's to hoping you feel small signs of improvement in the next few days!
Adela said:
Hi Randy, iam in my 2nd pe session out of 5. When should I expected to see some results according to your own experience? I haven't seen any improvement yet. Thanks a lot!