He was diagnosed in 2005 with cidp. They tried him on several different things including ivig, nerontin, lyrica, and others. He either reacted to the treatments or the treatments didn't help. The only thing he is on now is pain meds, b12 shots, and cellcept, 500mg. He has not had any relief from the cellept and the pain medicine is getting to where it doesn't help much with the pain anymore. His pain is 24/7 and he is wasting away to nothing. His neurologist says that some of his patients have to take at least 1000mg of cellcept(mycophenilate) before they get any help. Does anyone have any suggestions for treatment options for him? Steroids make his pain 100x worse. He is definitely not getting any help from the pain meds, and he is so sensitive to everything.
I take 2000 mg of celcept and my doctor said it can 3 to 8 months to kick in. You may want to experiment with diet. When I eliminated gluten my symptoms improved drastically. I very seldom ever take pain meds any more. You may want to look at diet if you haven't tried that already. I now follow the paleo diet and it has worked wonders. The paleo is basically no grains or dairy. It is a bit drastic and it may not work for any one else they way it works for me.
Unfortunately, pain is part of the diseAse it’s trying to find the right combination of meds that takes a lot on his and his neuro to find it. I take gabapentin, baclofen. It used to be lyrica, cymbalta and baclofen.
Try lyrica, gabapentin, cymbalta and baclafan and Retuxanab.
He also needs to be active! If not the depression will take over.
There is also HSTC, it’s a trial in Chicago given by Dr Burt.
The only thing that works for me is the ivig treatments every three weeks. The pain meds made me very lethargic and to only want to sleep or just sit around and do nothing. Could not handle that, so I am only on ivig. It took a little over two months for the ivig to work, but now I am doing okay. Ivig may cause reactions, but there are simple meds for that. Reactions usually go away after several treatments. Good luck. I will pray for him.
Call Dr Richard Burt’s office in Chicago, IL… He is doing a clinical trial for Stem cell transplants. I have had the disease for 12 years & in the last year I stopped responding to treatment except plasma pharesis every 7 days. I went to see Dr Burt in the beginning of February & was accepted to the clinical trial. All patients that he has done that have proven CIDP have been in remission since it was done. If you want to check it out first… The web site is www.stemcell-immunotherapy.com I wish you the best if luck. CIDP is a devisyating disease & your husband is lucky to have you.
Remission? What is remission? It has been 2 years since I was laying flat on my back in the hospital diagnosed with GBS (AIDP). I had IVIG 5 nights in a row before leaving the hospital.
I had 6 weeks in hospital with therapy 2 times per day. I had 6 weeks of home therapy 3 times a week. I had 6 weeks of out-patient therapy 2 times per week. Then I was told to go it on my own.
Neuro says I now have CIDP wihich is chronic and will not go away.
I take my gabapentin 4 times a day and keep moving as fast as I can. Now use a cane when outside my house. I work full time, drive, go on vacation, go shopping and enjoy life in my own peculiar way - slower than before but steady with the help of my walking stick. I see myself outrunning this disease - one step ahead until my final step into eternity.
That image makes me smile. I see the gates of heaven open and me running through. Saint Peter is there to mind the door - he rises with his sign - it says - CIDP not allowed to enter.
It’s different for everyone, but I will share what has worked for me. My pain is well managed with tramadol 50mg 3x a day (6am, noon, 6pm) and Gabapentin 600mg x2 3x a day (9am, 3pm, 9pm). I used to wait for the pain to get bad before I’d take my meds, but it was horrible. Now that I keep to a schedule I can wear socks, shoes, and my braces with little to no discomfort and can get through IVIG and Solumedrol infusions every two weeks.
I’ve also gone through physical therapy, to help with strength and balance, and I have AFO braces that allow me to be mobile. They’re a miracle and have changed my whole outlook on life. I feel human again. Even though I may not be improving, physically, I’m not getting worse (knock wood) and I’m able to manage.
The most important thing is a positive attitude. It’s NOT easy though. There are things we haven’t tried yet and life goes on. Don’t let this thing beat you. We can do this!
Hi, I am so sorry for your terrible journey with this disease. The things that I tried that are not on your list would be heavy duty doses of solu-medrol, for me 1000 mg, three days in row by iv. If that were done, and it helped, it is a potent form of prednisone and my recommendation, from my exper., would be do not let them do it fast, they did mine, and get step down doses of oral prednisone for the ensuing days after the last iv. They did none of that and it was a nightmare for me and did not help. Ivig put me into remission since 2011, i had at least ten treatments. I am coming out of remission now, slowly, Unfortunately. My next treatment option shall be chemo with plasmapheresis. At the same time. I cannot have ivig any more. It made me very sick and the longer i took it the worse it became. I don’t know if either of those have been considered? I am one of the lucky ones in regard to pain, very little. I lose feeling, and the ability to lift my legs, all reflects in my body. When i start to fall, i cannot stop it. God bless.
I don,t do this my self but it might help medical marijuana,
I don't know if this will help you but I started on a Paleo diet written specifically to address autoimmune disease plus I got my Neurologist to order physical therapy to increase lower extremity strength. I get IVIG weekly since Sept 2013 and that didn't seem to be doing anything so on my own I added those other two interventions and I feel like it is helping. The book I read is "The Paleo Approach: Reverse autoimmune disease and heal your body" by Sarah Ballantyne.
I take Gabapentin, Imuran, and prednisone. I hope to get off the prednison soon as it caused significant weight gain and swelling in face, etc. However, I have had IVIG and Plasmapheresis and plasmapheresis helped me without side effects. I got severe headaches with IVIG. Based on what others have mentioned, I would either consider going to another drug like Imuran or try the clinical trial. I am doing pretty well right now, so I am thinking that the clinical trial will be a last resort thing. I have relatively little pain. I truly hope your husband gets this under control. Anti-depressants can help as well if he is depressed which I know he probably is if he can't do anything. Hope this helps and will say a prayer right now for you.
I just recently went off IVIG treatments. They didn't do any good. All I did was sleep. When I saw my dr. he also cut my Gabapentin in half to 600mg 3 x day. Since that day, I have had nothing but excruciating pain. I asked him if the pain would return if he cut the Gabapentin in half and he said NO. Well, he was either wrong or it's stopping the IVIG. I also take Cymbalta, klonopin and tizainadine to help with the pain. Right now I am living on two 325-5 hydrocodone to take the edge off the pain and make me sleep thru it. My neuro will not discuss anything else for the pain.
Thank you for all of your responses. To answer some of your questions and remarks. He has taken Gabapentin, that is generic for neurontin. He actually got up to 4000mg. of that when he was tying to work. He's actually tried to take it 5 different times. It makes him so sick he throws up. Now only 100mg of it will make him sick. He has tried lyrica, that made him break out in little bloody places so his neuro. took him off that immediately. He's been on zoloft, cymbalta, and keppra. None of these helped. Steroids, like prednison, make him hurt a lot worse He's never tried plasmapheresis. His neuro. does not think that is the route to go. Like I said now he is tying him on celcelpt, but he is only up to 500mg of it. He does go to a pain clinic where they have him on some high powered pain meds, plus in 2011 they implanted a spinal cord stimulator in his back which helps tremendously with his back pain. He also takes klonopin. I will probably check into the paleo diet and I have contacted Dr. Burt's office and actually spoken to his nurse, but my husband is reluctant to do this because he has seen his brother and sister go through chemotherapy and believes it made them worse in which they both eventually died. I'm trying to follow what the Lord would have us to do and I'm not pushing him to do this study, but I would be in Chicago tomorrow if he would. Again thanks for all your responses and prayers.
It is time for a second opinion. A good doctor never objects to a second opinion. You need to make sure that this diagnosis is correct. We have had other people on this site who actually were misdiagnosed.
Find yourself an expert just to be sure. IVIG is the treatment that most people get help from.
Has he been checked for any other disease? I know he’s scared, but it sounds like Chicago is his only real choice. The chemo is scary, but it’s only so they can give him his new immune system. He will be in quarantine and if everything is done to the letter he will be disease free!
Just like here, he will have a tremendous support system from those who has been through it and others waiting. There are two groups that are tied to this procedure, if you would like the sites let me know.
I know you may not push and he doesn’t want to go, but weigh the pros and cons, he may live in this pain indefinitely to being disease free with the moderate pain of nerve regenerating.
I have tried every known medicine and therapy for CIDP and unfortunately they did not work. I have been lucky and was put in ouch with a Psychologist who taught me a concept called Mindfulness which, after much practice, took me to place
in my mind where I controlled the pain and not allowing it to control me. I was also given a pill called Tramacet to take
2x 25mg each night and in my case does help me sleep. The one constant with CIDP is that what is good for one does not mean it is good for everyone. Wishing us all a pain free day.
I am curius: Has he had a complete thyroid and heavy metals work up, and has he ever taken mega doess of B6 or been exposed to mold?
Aks his Docs if it's OK he take Epson Salt baths with Asprin. I use a coffee grinder to grind non coated apsrin into powder for baths..Seems to help my neuropathy along with Devils Claw
I too have been waiting for a remission since 2005. I've also lost 35 lbs and don't have any answers. I know my wife is afraid for me but I tell her this may be chronic but it's not life threatening. Has he tried Gabapentin or Carbamazepine, or these together? Gary
I changed PCP and neurologist. A fresh pair of eyes solved the my old neurologist's blurry vision of me.
Thanks again to everyone who has responded and for the suggestion you have given us. We are checking into a few different things.God bless everyone.