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Living with Polyneuropathy CIDP, GBS, & CMT

CIDP survivors in Birmingham AL

#1

Just thought I would reach out to anyone in the local area who may have CIDP. I was diagnosed in 2012 and since 2015 have had very little trouble. Went through a series of treatments for about a year until they got me on cellcept that has put my symptoms in remission. If anyone in the area would like any advice, recommendations, or just to talk to someone that can relate, let me know.

#2

Jon, thanks for your post. I was diagnosed w CIDP March 2017. I started Cellcept in June 2017. I was wondering if you are still on Cellcept and how long you plan to take it?
Also, do you deal with fatigue and/or weakness?

#3

Does this drug help in controlling pain. Are you using cellcept or its generic? Glad you are seeing improvement. JDU

#4

Cellcept generic is mycophenolate. It does not help with pain it lowers the immune system so amtibodies don’t attack. It is used by transplant patients so the transplant is not attacked by antibodies.
I take gabapentin for numbness and pain especially so I can sleep at night.

#5

Thankyou for your quick reply, I too use gab. for pain control. I pray your remission continues. JDU

#6

Amen! Thank you.

#7

After unpleasant derm allergies to IVIG and no improvement on prednisone IV and plasma exchange, I’ve been on Cellcept & gabapentin for 11 months for my distal CIDP.
I experience some dizziness, especially in the mornings, when I’m unable drive an automobile. But deterioration in my feet has ben slowed.

#8

Sorry for so late to reply. Yes, I am taking the generic Mycophenolate. But it is cellcept. I no longer deal with fatigue or weakness and haven’t had a treatment (I had to do plasma exchange) since January 2015. This drug does not do anything for pain as Apyper65 mentions. I take Gabapentin for that. I have recently started to have more pain in my feet which is basically just neuropathy pains. Not too big of a deal, but can be annoying. But I can live with this. I found a great doctor at UAB - Dr. Ubogu who is heavily involved in CIDP research in addition to treating his patients. I would highly recommend him no matter where you are.

#9

On another note, i took prednisone for a while and it was awful. Weight gain, didn’t really help too much, etc. Just a nasty drug in my opinion. But if it helped me, I could live with the side effects. But it didn’t. I was also allergic to IVIG and that is why they switched me to plasma exchange. It was a real pain having to be in hospital for 8 days at a time, but during all of these treatments they were working on finding a drug that works for me. And that is when they started me on cellcept. It is crazy how some drugs work for some and not others and vice versa. God made us all different for a reason (i.e. DNA). For that reason alone, no one will ever convince me that we all just “happened”. Definitely an intelligent designer. But one thing is for sure, God never said we would not face difficulty, it is what we do with the difficulty that He is looking at. So keep the faith. What doesn’t kill you…

#10

I from Elmira New York I would loved to know more about your story. I have had CIDP since 2015 I am on CELLCEPT along with weekly infusions. I continue to have pain. However have come a long ways from being paralyzed ,wheelchair, walker and now a cane only for safety. I just would like to know if you can relate to all this and if you get severe neuropathy pain.

#11

Jutty1957, thanks for your reply. I went through all of that except I was never in a wheelchair, so not sure if mine was as severe. However, I had no strength in my hands, legs, etc. Just had to walk slowly. I went through two rounds of IVIG and it caused chemical meningitis that was brutal. So they had to switch me to plasma exchange. I think I got around 4 rounds of this, all while they were trying different drugs on me. When I finally got on cellcept, my condition went into remission. I do still have neuropathy pain, but it is bearable. Not sure about your age, etc (I am 53), but I do everything I can to stay in shape by running and exercising. I think this helps a lot. I know that sounds difficult right now, but my doctor said it would be important to try and eat the best I could, exercise, etc. As I said, I have been in remission since January of 2015, but do still have some side effects. Primarily the neuropathy pain and hand tremors. Do you have a port? I can’t imagine having the infusions weekly, but it beats the alternative. Maybe ask your doctor about plasma exchange? If you want to see another doctor, I could maybe get you in touch with mine here in Birmingham. God Bless and keep on fighting! There are some cutting edge stuff going on out there for CIDP. Keep yourself informed.

#12

Jon1, I was wondering what it was like from 2■■■■? I (also 53) am in my 19th month of this crazy thing. I also had Plasma exchange over 7months and it helped immediately with each attack. I now take just the Cellcept but still deal with extreme fatigue, numbness and my pain is similar to yours. I ran marathons and worked out before onset, but can’t seem to gain any stamina with either walking or working out. Was wondering when you started to see some improvement in that area?
Thanks.

#13

That should read from 2012 to 2015

#14

How long do you plan to take Cellcept?

#15

I think I’m doing well I’m basically doing the same post CIDP treatment as can be expected. My doctor would not let me have a port because of infection factors. My immune system is compromised with prednisones CellCept and I VIG. I am 61 I got this when I was 58. I am peddling my bike as I speak. Starting a good diet and have dropped 23 pounds since August 10 so I went from 260 to 288 back down to 275 now currently at 249. I have a great doctor and he’s done everything right for me and my family for the past three years. To think I could not walk to now I am pedaling a bike walking around the house driving my car. I have increased my Independence greatly. This is a nasty condition very chronic and very unpredictable when pain and sadness will come but I have a strong faith many friends and family who support me during difficult times . Keep in touch may God bless you you’re always in my prayers as is anyone with CIDP. If you ever want to talk please don’t hesitate to call 607-■■■■. Just send a text if you do call so I know it’s you not some telemarketer. I am going to a CIDP/Gilian beret chapter meeting on Saturday, October 27 with a man around your age in remission. I met him getting my infusions. The meeting is in Syracuse New York around two hours north of our home town Elmira New York.
Friend for life JUTTY

Sent from my iPhone

#16

Jon that last reply was back to you thanks
Jutty

#17

Jutty, I had a port and got an infection in the port and during my Plasma exchange it sent the infection through my blood and was fortunate to be in the hospital having my treatment as my organs were just beginning to shut down from sepsis.
Glad to hear you are heading to a local meeting. My wife and I are flying from Michigan to San Diego for the GBS/CIDP symposium Nov 1-3.
My recovery is similar to yours, my most recent issue is a weird stimulation in my lips. It’s great to share in this blog, thanks all for posting and keep up the good work.

#18

Apyper65, sorry for late reply. I plan to take cellcept as long as it keeps my condition in remission. I go once a year to see my doctor and they test my liver, kidney, etc to make sure all are ok. Otherwise, he said I would most likely take forever as long as it is effective and not causing any side effects. As I mentioned, the only issues I have now is the sharp sticking and prickly shooting pains in my feet and legs. But it is manageable. Good luck to everyone and don’t hesitate to reach out.

#19

Hi Jon1, I was Dx in September of this year after 18 months of not knowing what was going on, it has at this point been determined that I test very slightly positive for Sjorgrens syndrome as well, however the rheumatologist says the symptoms add up as well. Therefore I was put on Cellecept three weeks ago and as of right now I am still on 500 mg per day, I was told we were going to ramp it up but I don’t even have an appointment yet. That said, do you know about how long it took to start working at about what dose is considered therapeutic? I appreciate your response, am 61 yo male and have been like many I suppose, getting kind of down about the progress, I am also on IVIG every three weeks and still on 10mg per day of prednisone. The funny thing is when I was on 20mg, I seem to have had a response where I was feeling pretty darn good there for a while and when I began to taper, most of my symptoms are returning, hoping the Cellcept will “kick in,” thank you again.

Brad

#20

Brad, sorry for the late reply as I have been in hospital getting plasma exchange (PE) for the last 9 days. This was my first treatment since Jan of 2015, so almost 4 years. Was only having some minor issues and they thought a good idea to get an exchange that will hopefully last another 4. I began taking cellcept right after my last treatment in 2015 and I am unsure as to when it kicked in. Since the PE gets me back up to normal after treatments, it was sometime after that that the cellcept apparently kept it going. Before getting on cellcept, I had to go in for treatments about 4 times between 2014 and 2015, so the PE alone was not lasting very long as I was on Imuran after each treatment. But when I took the cellcept after my last treatment, it has gotten me to this far. So I really cant answer your question definitively, but I would guess around 3 to 4 weeks. I really hope it helps you as it has me. I see you are doing IVIG, which I wish I could do, but I had bad allergic reactions.

One thing you have to do is stay strong and know that there is light at the end of the tunnel, and I don’t mean death. :-). You will get stronger at some point, but they just have to figure out what works for each person. It took about 8 months for them to DX me and then another year or so for me to get on a final treatment plan that was working. Keep the faith and having a good attitude I think helps.

Hope this helps, and don’t hesitate to reach out again.

Sincerely,

Jon