I am new to the disease and trying to learn. This site is so helpful!
At first I read that early treatment means better outcome. However, I have been reading discussions after discussions on this site and it seems to me even with very early treatment, the disease will still progress eventually. The treatment can only slow it down a bit but not able to stop anything. The long term outcome is still the same.
Is my impression correct? What is your experience?
I was diagnosed with CIDP just over a year ago. I was lucky that my ER doctor suspected GBS and I was admitted for treatments quickly. I now receive IVIG monthly and have made very good progress. I still notice some loss of strength a few days to a week prior to my scheduled treatment but overall can function well. I do not know however if I will ever be cured or will continue having periodic relapses. Wish you well.
Its different with every body.I found out in late july of 2013 I had CIDP.With treatment and drugs as of right now I am in TOTAL remission.Its really a miracle I feel so good.I am truly am blessed and very very grateful.
Please tell us what your treatment consisted of, frequency,etc. John. No point in keeping such wonderful news to yourself…we are delighted for you but please share.
After 15 years with this illness, this is the first break through I have heard of relative to CIDP or any related disease,to show total remission. It is miraculous!
Yes John I would be curious what program you used as mine hasn't stopped the progression after 10 months.
Sorry since 2001 actually and tap cod 10 months. But here you are cured after 6 months…how wonderful your doctors are. Where do you go for treatment? This is amazing! Everyone must be so excited on the site…you are a celebrity with your news I am sure.
I agree with the poster that said that CIDP affects everyone differently. I was diagnosed in 2010. My neurologist treated my CIDP very aggressively-lots of IVIG, steroids and immune suppressants. I have not had an IVIG treatment in nearly 2 years and just went off the steroids last fall. My present neuro says that if I continue, we may stop the immune suppressants this year. It is very close to the fourth anniversary of my first (and only) attack and I have regained a lot of what was lost.
Hi Michael, so happy for you:great news. The IVIG we are all familiar with but which immune suppressants and which steroids,because I have had similar treatment to yours and thought I was dying…so specifics are really important. Can you give more information detail? Much obliged.
Michael Williams said:
I agree with the poster that said that CIDP affects everyone differently. I was diagnosed in 2010. My neurologist treated my CIDP very aggressively-lots of IVIG, steroids and immune suppressants. I have not had an IVIG treatment in nearly 2 years and just went off the steroids last fall. My present neuro says that if I continue, we may stop the immune suppressants this year. It is very close to the fourth anniversary of my first (and only) attack and I have regained a lot of what was lost.
Michael Williams said:
I agree with the poster that said that CIDP affects everyone differently. I was diagnosed in 2010. My neurologist treated my CIDP very aggressively-lots of IVIG, steroids and immune suppressants. I have not had an IVIG treatment in nearly 2 years and just went off the steroids last fall. My present neuro says that if I continue, we may stop the immune suppressants this year. It is very close to the fourth anniversary of my first (and only) attack and I have regained a lot of what was lost.
Dear GSLM,
I was diagnosed in 2004 and had 3 treatments of IVIG in the first 2 years. In the UK its given over a five day period each time lasting about six hours a day so quite intensive. My NHS (UK free health provider) ran out of money as it would cost £40,000 for a weeks treatment in 2006. Nothing changed after the treatment and it has been as expected, slow progressive . My consultant sees me once a year and as long as I can walk into his office he tells me to come back next year as there is no new treatment. I do my own treatment; a very healthy diet; yoga to keep the leg muscles stretched; gym exercises to keep muscles going for as long as possible; my own vitamin and mineral programme. If you google Stem Cell Therapy and CIDP you should find a US research programme that completely cured a CIDP sufferer in 2013. The programme completes its research in December 2014 and then it publishes its results. Its worth watching what is going on worldwide through the internet on other research programmes. My consultant was totally unaware of the US programme!! Nothing new there then! During my 9 years I am sure I have had a couple of remissions, feeling comes back to my feet and one or two other changes, but the last 18 months I have been recorded as having no reflex reaction of nerves in both legs below the knees now, means I fall over a lot and cant lift my feet and my hands and forearms are now well into the numbing process. I am positive that somewhere down the road a successful treatment will be found, probably through an MS research programme. Dont rely totally on the medical profession to live as full a life as you can, keep a positive mind and do your own research. Good Luck
Sure thing! I did IVIG 5 times a month for 6 months, then we started tapering off to 4,3, & 2. I decided that was enough and didn't schedule my last IVIG appointment (this was in 2011). Dr. Boughaba started me off wtih 80 mg of Prednisone and I did that for a year. After a year, she started tapering me off, 5 mg a month. When I finished the prednisone, I had a big set back and thought it was a re-occurrence, but I guess it was just my body saying good bye to the steroid. That was in September and I am not back to the activity level I was before I stopped, but the CIDP has not returned.
I am still taking Cellcept, I can't remember the dose. I think it is 500mg, twice a day. Sorry for all the misspelled words.
Thank you for your detailed reply and time involved. My routine is ditto to yours except for the yoga. Doc visit every 6 months and stretching…same old attitude…live old horse…so fed up with the blasé attitude. I think every time “walk a mile in my shoes” but refrain from comment. Also U.K. Interesting the similarity of attitude on your behalf and mine to our little problem.
Happy New Year…who knows what it may bring
P.S
Have noted all information you kindly provided. St Thomas hospital are aware of stem cell therapy but said too harsh for me. Suggested I monitor myself and find hospital care within 24 hours of a drop.
Chester said:
Michael Williams said:I agree with the poster that said that CIDP affects everyone y 6 'monthsdifferently. I was diagnosed in 2010. My neurologist treated my CIDP every aggressively-lots of IVIG, steroids and immune suppressants. I have not had an IVIG treatment in nearly 2 years and just went off the steroids last fall. My present neuro says that if I continue, we may stop the immune suppressants this year. It is very close to the fourth anniversary of my first (and only) attack and I have regained a lot of what was lost.
Dear GSLM,
I was diagnosed in 2004 and had 3 treatments of IVIG in the first 2 years. In the UK its given over a five day period each time lasting about six hours a day so quite intensive. My NHS (UK free health provider) ran out of money as it would cost £40,000 for a weeks treatment in 2006. Nothing changed after the treatment and it has been as expected, slow progressive . My consultant sees me once a year and as long as I can walk into his office he tells me to come back next year as there is no new treatment. I do my own treatment; a very healthy diet; yoga to keep the leg muscles stretched; gym exercises to keep muscles going for as long as possible; my own vitamin and mineral programme. If you google Stem Cell Therapy and CIDP you should find a US research programme that completely cured a CIDP sufferer in 2013. The programme completes its research in December 2014 and then it publishes its results. Its worth watching what is going on worldwide through the internet on other research programmes. My consultant was totally unaware of the US programme!! Nothing new there then! During my 9 years I am sure I have had a couple of remissions, feeling comes back to my feet and one or two other changes, but the last 18 months I have been recorded as having no reflex reaction of nerves in both legs below the knees now, means I fall over a lot and cant lift my feet and my hands and forearms are now well into the numbing process. I am positive that somewhere down the road a successful treatment will be found, probably through an MS research programme. Dont rely totally on the medical profession to live as full a life as you can, keep a positive mind and do your own research. Good Luck
Thank you Michael
All dully noted in detail. Thank you so much for your input. Much appreciated.
Happy
Thank you Michael
All dully noted in detail. Thank you so much for your input. Much appreciated.
Happy
Thank you Michael
All dully noted in detail. Thank you so much for your input. Much appreciated.
Happy
I was diagnosed with CIDP several months ago. I received IVIG infusions for 5 days in a row then once a week ongoing. I had a series of strange illnesses and symptoms on two occasions and the doctor is unsure whether or not this is related...SEVERE Trigeminal Neuralgia for just under 3 weeks...Worst pain I have ever experienced. I am exhausted the day of the infusion and back to my baseline the next day. What I think I am noticing is that on days 3 & 4 I am feeling a bit less symptomatic with a little more energy...Two days prior to my next infusion...My body lets me know I need a treatment.
Thank you everyone so much for your responses. I really appreciate your sharing.
It does look like most people have a progressive disease course no matter how early it gets treated or how aggressive the treatments are.
I rarely see anyone posting who has had the disease for longer than 15 or 20 years. Most here are newbies with only a few months or a couple of years. I wonder why? Is it because long time sufferers are all in wheelchairs or bedridden so they can’t post anymore? Is there any information or statistics about how long time sufferers are doing? From what I read, many if not most become resistant to all treatments after a while. Then what?
I have read of people who have gone into remission without medication. I have also read of a 3 year cidp that goes into remission. Finding the source of the underlying cause and fixing it will also bring about remission. There is stemcell. I don't even want to imagine where I'd be without the treatment that we have right now. The outcome was probably very different for those who had this 20 years ago. I think our future is hopeful because of new discoveries and treatments which may be right around the corner.
Hello everyone! I was dx w CIDP exactly 2 years ago this month. I was walking on frozen feet & legs for six months & my arms & hands were following. I was seeing a neuro who did three EMGs and kept telling me “you have nerve damage but I don’t know why”. I would spent hour after obsessive hour online trying to find an answer. Finally, when I read about CIDP, sadly I knew every detail fit. He said that wasn’t what I had, pat my head & said pretty much said leave the real work to the doctors. I thank my husband for finding a new Dr who within 5 minutes of a repeat EMG, knew I had CIDP. I got 5 day IvIg in a row & went to 2 days every three weeks. I was getting so sick from treatment (vomiting, nausea, shaking, fevers, aches, flu feeling) that Dr dropped it to one day every three weeks. I was never on immunosuppressives. I take prednisone before treatment to reduce side effects. I did ok for a while but now have a lot of numbness in hands and feet and breathing problems. The dr says the breathing issue could be my diaphragm freezing up. Please God, not the diaphragm. I am terrified all the time.
Has anyone else had a bad reaction to ivig? Has anyone had difficulty breathing?
Happy - thank you for being so honest with your feelings. It makes me feel less alone.
Michael - I am incredibly grateful and happy for your great news. I am a little confused though because you did say “one and only attack” and that sounds like Guillain Barre and not CIDP. GB is characterized by a one time event from which you recover. CIDP is characterized by a slow onset of symptoms, usually longer than 8 weeks, and which is at the present time incurable. So is it possible that instead of having a remission from CIDP, you are actually having a recovery from GB? Joann
as the condition is chronic and not acute, the treatment i think is meant to keep it in check, but not cure
Doggymama said:
Hello everyone! I was dx w CIDP exactly 2 years ago this month. I was walking on frozen feet & legs for six months & my arms & hands were following. I was seeing a neuro who did three EMGs and kept telling me "you have nerve damage but I don't know why". I would spent hour after obsessive hour online trying to find an answer. Finally, when I read about CIDP, sadly I knew every detail fit. He said that wasn't what I had, pat my head & said pretty much said leave the real work to the doctors. I thank my husband for finding a new Dr who within 5 minutes of a repeat EMG, knew I had CIDP. I got 5 day IvIg in a row & went to 2 days every three weeks. I was getting so sick from treatment (vomiting, nausea, shaking, fevers, aches, flu feeling) that Dr dropped it to one day every three weeks. I was never on immunosuppressives. I take prednisone before treatment to reduce side effects. I did ok for a while but now have a lot of numbness in hands and feet and breathing problems. The dr says the breathing issue could be my diaphragm freezing up. Please God, not the diaphragm. I am terrified all the time.
Has anyone else had a bad reaction to ivig? Has anyone had difficulty breathing?
Happy - thank you for being so honest with your feelings. It makes me feel less alone.
Michael - I am incredibly grateful and happy for your great news. I am a little confused though because you did say "one and only attack" and that sounds like Guillain Barre and not CIDP. GB is characterized by a one time event from which you recover. CIDP is characterized by a slow onset of symptoms, usually longer than 8 weeks, and which is at the present time incurable. So is it possible that instead of having a remission from CIDP, you are actually having a recovery from GB? JoannDear Doggymama,I had symptoms similar to yours for probably up to two years, although I called them "mannequin legs." Upon walking even minimal lengths my legs would turn to rubber, and I'd have to rest. This was quite unlike me since I had always done up to 5 days of "spinning" which is an indoor form of cycling simulating outdoor cycling. I had pretty good stamina and strength in my legs for most of my life. Once I started to not be able to hold my heavy work bags or open doors in office buildings, I figured the arms were affected too and I knew I had something very weird going on with my nerves and/or muscles. After being examined by three neurologists and having multiple EMGs like yourself, I was finally diagnosed with CIDP this past October after having high protein in my spinal fluid. I had the 5 days loading dose of IVIG and now I'm scheduled to have two doses per month until I have some type of improvement, which I haven't had yet.I really wanted to respond to your feelings about your diaphragm "freezing up", however, because I have felt that all through this time, in addition to the legs and arms being weak. I would have to be conscious of taking deep, abdominal breaths and I'd often feel like my abdomen had a strong binder around it. I did read that this is a common feeling among people who have GBS (also in patients with MS) but not so much in people with CIDP. The feeling gets worse at times, then not so bad...I'm not sure what makes it worse. I just make sure to sit upright and do deep abdominal breathing exercises. When it happens at night when I'm trying to go to sleep, it's especially scary, but thus far it has not progressed beyond the feeling of my abdominal (diaphragmatic) area being constricted. I have always been able to sit and concentrate on taking deep breaths without difficulty. I did speak to a physical therapist who said this might just be a muscle spasm or constriction of the diaphragm, and as such, it can be "stretched" much like we stretch our other muscles due to the tightness and spasms. It's also particularly annoying when I have a seatbelt on in the car! I'm thinking the seatbelt triggers the abdominal reflex muscles which go on overdrive. Hopefully this is what you are feeling and if so, please try and not stress about it being your diaphragm "freezing up" because we all know that stress of any kind (especially the thought of not being able to breath!) can make the symptoms of this condition horribly worse.Best of luck to all.