Newly diagnosed cidp

New to the site, and relatively new to the condition. I am very scared of what’s to come in the future, especially since all I get is ‘it’s one of those things, we don’t know what’s going to happen’. I’ve tried steroids and IVIG, no improvement. Is there anyone who could suggest anything I could try next-my doctor seems to be at a loss of what else to suggest…

Hi Vicoria! I know all too well that feeling of being scared! It’s been almost 10 years for me of being diagnosed with CIDP. I do IVIG every 3 weeks. This morning will be one of those treatments. How many treatments have you had? Normally in the beginning doctors prescribed several doses of IVIG in succession, then most go to every 3 weeks routinely. Some people respond immediately and are also given an auto immune suppressant. They seem to be doing better than others. I only get the IVIG. This isn’t much info…hopefully others will chime in and
give you better advice…take care…Pat

What is the name of the auto suppressant drugs?

Hello and welcome, I am fairly new on this site too. I'm sorry I can't give you advice you on what to expect or to try other med's. My Neuro has told me there is nothing they can do for me. I hope one of the other members can help you. I wish you all the best. Shirl


I just wanted to let you know that you are not alone in your frustration and fear. I didn't have any improvement with steroids and I can't do IVIG because it causes Hemolytic anemia..... so I'm in the same boat as you. I have decided that it may be best for me to get a second opinion. That may give you something to think about. I was told in my last conversation (with my Neuro) that he wants me to fight this drug free with diet and exercise. Although I'm sure diet and exercise will benefit me I'm not sure it will be the cure.

I myself was just diagnosed this past March although I suffered with CIDP for the past seven years. In my research I’ve found that the cause is still unknown and there is no “cure”. Exercise and diet can help towards remission, and that’s what I’m working towards, but there is no guarentee. Gary

Hi Victoria,

I was finally diagnosed in 1993 after more than 5 years of symptoms. Tried IV steroids, IVIg, and no real improvement. About 3 years ago, I saw a new neurologist who wanted to try again. So, started the IVIg monthly and took for about 1-1/2 years. Temporary improvement, but nothing long-lasting. In January, I had a reaction to the Gammagard with swelling of the tongue and lips...pretty scary. Primary care doc and neurologist both said "no more," at that point. I went to Chicago in June for a second evaluation for stem cell transplant. They felt that the disease had progressed too far in the legs to consider me a good candidate. Back to the neurologist at home. He has been corresponding with a former classmate who has been researching long-term, low-dose doxycycline. At this point, that is what I am doing...doxycycline 100 mg daily. I've only been on it about 6 weeks and can't say I see any difference yet. It may take 3-6 months before there are any changes, if it is going to help. It is cheap and with few side effects. If I don't get any improvement with it, the next step is to try CellCept. I know there are others within the CIDP community who are on CellCept and have had good results.

It is SOOOO important to keep listening to your body, researching, and communicating with your doctors. On a positive note, I would say my disease has not progressed much over the last 10 years. I think I have learned to handle my body in a way that has helped me have fewer falls, and remain independent. Mine is mostly sensory, so I need a hand control to drive, use a cane or forearm crutches to walk, wear ankle-foot orthotics, and use all kinds of bags and backpacks to carry things. This is such a frustrating disease as it is nearly impossible to describe loss of sensation accompanied by weird and painful sensations, and the loss of strength in my legs. Keep searching, asking questions, and sharing on these sites. Julie

Where did you go in Chicago?

Hi Victoria,

Welcome. I am new to this site as well. I also am treated with IVIG. Together with a drug named Rituxan. Between the two treatments I am quite stable.The IVIG I receive every other week and the Rituxan a series of 4 treatment every 1 1/2 years or so. I don't think there are many Doctors that will suggest this drug since it is not approved for this diagnosis.



Hi Victoria:
Sorry you are here but glad you found us. I can’t help you much because I’m kind of in the same boat as you where my doctor is running out of options. I’m just trying to take one day at a time, one step at a time. It’s hard to be patient with a chronic disease, and patience is most certainly NOT one of my virtues.
Good luck and listen to the people on this site. They have a lot more experience than i do. I was just diagnosed in February of this year.
Lisa in Michigan

Northwestern in Chicago. check out the following page on will give you all kinds of information. This is an autologous transplant (one's own cells harvested, treated, and replaced back into the body all via peripheral blood).

CIDP and Stem Cell Transplant

Hi Victoria,

You know you have a lot of people here who are in the same situation as you are. I have been a member here for only a few months and I have received a lot of support from people on this site. Sometimes I think having emotional support is more important to get you through this.

I am currently on Azathioprine (Imuran) it is an immuno-suppressant. I have only been on it for 2 weeks so I have not felt any improvements yet. They say it can take up to a few months before you feel the effects if it is working. If not there are other options out there such as chemo drugs that work on CIDP also.

Don't get to scared yet there are other options out there. Research the treatments for CIDP and then give them to your Doc. CIDP is not really well know disease yet and there are plenty of Docs out there that do not have a clue as to what CIDP is and what the treatments are. So help your Doc I am sure he will be grateful.

Good luck to you Victoria. You will be in my prayers and keep us informed about your situation.

God Bless,


Hi sweetheart,

Im glad you found us but sorry its on such bad terms. I was diagnosed on Aug.9th with mine. I am also taking immuran. My doctor started me off on 150 mg but we had to decrease it as i vommited and had dirreah for 2 weeks. So i went down to 50 mg for about a week and now im back up to 100mg. I found if i take it at night it doesnt just completely zap me and i dont get as sick to my stomach. I have also been diagnosed with another rare disease called hypercholestrolanemia its where my body overproduces cholestrol causing my tricyerides to go to dangerous levels in whicha can cause a heart attack so i cant take the predisone or steriods as it will run my blood sugar up then it will affect my tricylerides leading to a ripple effect. Its very frustrating!! I have extreme amounts of pain. It feels as tho a cheese grater has been drug down my hurts to touch things ..hell it hurts to even sit in front of a fan and let the wind blow on my skin. Im hopefully going to start IvIg treatments within the next week and im praying it will help. My doctor has suggested maybe switching up to the cell cept so we shall see. Just know your not alone!I am scared as well but we have each other. Big hugs...Amy

I am reasonably new to CIDP and IVIg as well. Lessons learned - IVIg will probably not cure the condition but the GOOD NEWS is that you should not get worse. My neurologist says to live for what you have (and points to his badly arthritic hands!) Celebrate what you can do and make the best of it.

It hurts me to take. Shower.

I am also new to the world of CIDP, but have been fortunate that IVIg treatments have worked for me. My first relapse was 2 1/2 months after my initial diagnosis (they thought I had guillian barre), so I started IVIg again. Gammunex worked for me within a day or two, so I'm sorry if you're not seeing the same result. I know the doctor mentioned steriods being a possible long term fix or there is also mention of blood transfusion? Not as familiar with those options.

Also, for those of you on Gammunex - I believe the drug company is now offering a drug assistance program to help with cost (for those of you on commercial insurance), so I encourage anyone taking it to contact their provider/Gammunex rep about this new program. It subsidizes $2,500 a year in cost.

I was diagnosed with CIDP in October of 2008. Three weeks before that I had my tetanus shot (cocktail). That night I came down with a high fever and continued to feel very weak for 3 weeks after that. I also had cramps in my feet and legs. I was walking 5 miles a day before the tetanus shot then after the fever I couldn't do more than half a mile. I thought I was getting lazy but I knew something was wrong with my body. After I was admitted in October of '08, my doctor immediately knew what I had. They did a spinal tap but by that time I had already lost my ability to walk. For four and a half months I was either in the hospital or in rehab. When I finally came home in Feb. '09 I was paralyzed from the waist down and my hands and feet were numb. During this time, I also developed a severe tremor in my hands. I feel that this, more that anything other symptoms of the CIDP worsened my quality of life. I was unable to eat by myself, bathe or dress myself. I have done IVIG, plasmapheresis, prednisone, and chemo. But the one thing that I feel helped me the most was accupuncture.
It has now been 4 years and with the help of weekly physical therapy and stopping all medication I am finally able to walk with the assistance of a cane and/or walker. My tremor has also gotten much better, but it's not gone. Has anyone else experienced this? Have you done anything to make it better?

Lately, the balls of my feet feel swollen and painful in the morning and I am unable to step on them for about an hour or so. I told my neurologist about 3 days ago and he said that it's my nerves trying to regenerate. Anyone out there feeling the same thing?

I want to ask one more thing...
Anyone have a painful itching sensation? My foot will itch and when I go to scratch it I get a shooting pain.

Has anyone had symptoms like these and have gotten better? I feel very frustrated and would love some words of encouragement.

Victoria, I would suggest you talk to your neurologist about acupuncture.

great post!

Victoria, it may be IVIG hasn’t had a chance to work or dosage may have to be changed. Plasmaphoresis is used by some. Immunosuppressants such as Imuran, Cellcept, an Rituxan can be used. I am in the middle of a Stem Cell Transplant at Northwestern to cure this disease. You have to have CiDP and have failed Steroids and 2 others.

IvIG and another such as Cellcept. Hope this helps. I have had weakness , pain, burning, pins and needles, etc…in the 8 years of relapsing and remitting CIDP I have. Mary B

Thanks for the reply. It’s good to know I’m not alone, no-one here has heard of anything like this, it’s hard to explain to them each time. It’s embarassing not being able to walk without feeling like I’m going to fall over. I know what you eman about sensations, anything comes near my feet is agony-if I feel an itch on my foot I try to scratch gently but even that hurts.
Seeing neurologist in 2 weeks and I’m not going to leave that room until he suggests something else! Hope you’re ok x