Hi everyone I am new here. My husband has cidp affecting his lower extremities. Unfortunately what began in his left leg as "drop foot" is now affecting his right leg ad well. We are working with Dr. Bridget Carey at NY Presbyterian hospital who is an expert on cidp. We found her after having seen roughly 14 different doctors on long island ranging from orthos to neurologists to spine surgeons. The only course of treatment Tom did at this point was ivig for 5 months with no results. He has just complete 5 plasma transfers with no benefits as well. We were informed by Dr. Carey that the next step would be drugs. She said she had doubts the nerve/muscle damage could ever be reversed but is confident that with the bright meds would be prevent end from spreading. We are so uninformed from 'real' people copying with this and would welcome any input offered. I push tom all the time not to give up that we will do the best we can however I feel alone in uncharted waters since I only have a doctor to provide us with information and answers. I have research end myself and came across info in the u.k. where studies show cidp as being reversable in 80 percent of cases which contradicts what I've been told. Thank you for any input :-)
Hey neverfarbehind, I hope you find some answers and support here. I'm kind of new too, but find it good to hear of other people's experiences, and the people are great. Until I found this place, I was the only person I had ever known or heard of that had it.
Cellcept,2000mg/day and prednisone,now at 20mg/day seem to be working for me.
As far as "repair" goes, I have been told that as long as the immune system is kept in check, repair will happen. It's just really really slow. The nerve axons regrow at the rate of 2 mm per month.
I like your attitude.
"I push tom all the time not to give up that we will do the best we can"
Tom is lucky to have you.
Thanks Jeff as a matter of face cellcept is the drug that the doctor discussed with us. Your words give us hope, thank you!
Jeff said:
Hey neverfarbehind, I hope you find some answers and support here. I'm kind of new too, but find it good to hear of other people's experiences, and the people are great. Until I found this place, I was the only person I had ever known or heard of that had it.
Cellcept,2000mg/day and prednisone,now at 20mg/day seem to be working for me.
As far as "repair" goes, I have been told that as long as the immune system is kept in check, repair will happen. It's just really really slow. The nerve axons regrow at the rate of 2 mm per month.
I like your attitude.
"I push tom all the time not to give up that we will do the best we can"
Tom is lucky to have you.
Hey neverfarbehind I’m currently in the hospital as I type this to let you know I’ve tried the Ivig about 8 months ago . I’ve been sick from the treatment so what I’m trying now is the ivnp. (Steroids ) which is giving through an iv … Without many of the side effects . It’s pretty effective the study shows a 76 recovery rate . I will keep you updated with my process & how everything goes … Good luck to you guys I’m sure you guys will find the best procedure that works for you guys ( I try to look at it as trial & error .
Hi there,
In my case, I have acute onset CIDP, which basically means that it hit me like a ton of bricks; from 100% normal to couldn’t stand or even sit up in 5 days flat. EMG confirmed severe myelin damage and possible axon damage. I was treated with IVIG which worked well for a few days each time, but I would soon weaken again. The diagnosis started as GBS but was rediagnosed to CIDP after the 3rd relapse.
About a month ago I was put on 20 mg Prednisone per day and what a difference! I can actually walk around now with 2 canes. I also have monthly IVIG maintenance treatments. I hope the doctors find the right combination for your husband. The nerve myelin regenerates around 2 millimetres per day.
Wishing you the best,
TC
Hi N.F.B
What is being done reference treatment in U.K to reverse CIDP? 80% is a huge result...please tell us more. As I live in U.K I can research your info and confirm source etc.
Regards
Happy
I would like to know about the treatment to reverse CIDP too!
Nana_P
Are you anywhere near Buffalo, NY - University of Buffalo School of Medicine and Biomedical Sciences? It is a Center of Excellence for people with GBS/CIDP.
All Those With Chronic Inflammatory Demyelinating Polyneuropathy
Recently, one of the physicians on the GBS/CIDP Foundation Medical Advisory Board saw a man who carried the diagnosis of CIDP for 2 years. During that time, he received IVIg monthly for 18 months then plasmapheresis monthly for five months without any clinical improvement. He went to a GBS/CIDP Foundation Center of Excellence where it was determined that he did not have CIDP, as the diagnosis was made on incorrectly interpreted nerve conduction studies in the wrong clinical context. The patient calculated that the cost of his treatments was over $400,000. Unfortunately, this is not uncommon.
Members of the Medical Advisory Board have been giving direct-to-patient talks on CIDP to Foundation patient support groups around the country. The main message is that the diagnosis and treatment of CIDP can and must be improved.
We want those with CIDP to:
- Get the correct diagnosis,
- Get the right treatment, and then
- Get off treatment if treatment is no longer necessary.
It is important to know what CIDP is. Typical CIDP is a spectrum of polyneuropathies characterized by:
- Development and progression for at least 2 months,
- Sensory and motor symptoms,
- Distal sensory loss, distal and proximal limb weakness, and areflexia on neurologic examination,
- Demyelination on nerve conduction studies,
- Elevated CSF protein without increase in cell count,
- Normal routine blood studies including protein studies,
- Nerve biopsy, if done, demonstrating T cell infiltration and macrophage-associated demyelination, and
- Clear response to treatment(s) that have been demonstrated to be effective in CIDP.
There are 3 proven first line treatments for CIDP: IVIg, plasmapheresis and corticosteroids. The majority of people with true CIDP improve with one of these treatments. A clear response to any of these treatments is almost always seen within 2-3 months; no response after several months suggests rethinking the diagnosis and not continuing with that particular therapy.
Depending on the response to the first line treatments, other treatments may not be needed, but if other drugs are needed, a large number have been used successfully. Once on a successful treatment, it should be discontinued slowly to determine if it is still needed, because clinical trials have shown that 40% or more of those on treatments for CIDP do not require long-term therapy.
We recommend that you obtain another opinion for your CIDP from a Center of Excellence if:
- You do not have the typical features of CIDP described above but are receiving treatment(s) for CIDP.
- CIDP was diagnosed mainly based on nerve conduction studies.
- CIDP was diagnosed mainly based on elevated spinal fluid protein.
- You are not clearly improving on your current treatment(s).
- You have been on treatments for a long time and are stable.
We hope these recommendations improve the care and treatment of those with CIDP. Questions can be directed to the Foundation.
David R. Cornblath, MD
Member, Medical Advisory Board
Member, Board of Directors
Kenneth C. Gorson, MD
Member, Medical Advisory Board