CIDP or not CIDP

Just a mom here, so take things with a grain of salt. first thing, some people have bad reactions even worsening with steroids. You mention you recently started treatments, how much and how often did you get the ivig? Also, how long did you take the rituxan for, at a recent symposium it was suggested a minimum of 6 months is necessary. Lastly, I don’t know much about it, but you brought up “amloid” have you explored aloidosis? (spelling) It is also possible that you have the progressive form of cidp. If possible could you answer back tommorrow?
Dawn Kevies mom

[QUOTE=brianh]In 2002 I was diagnosed with CIDP. In the beginning I had just tingling fingers and toes, and degeneration was slow.
It was not until 2007 when walking and balance were really becoming a problem that I started to receive treatment.
Steroids then IVig proved ineffective, and I was given a course of rituximab in July 2008. I have been tested for anti-MAG antibodies which was negative.
A biopsy in 2008 showed deterioration to the nerve axons rather than the myelin, and there was no deposition of a protein called amyloid. My Neurologist concludes that immunosuppressant treatments are unlikely to improve my condition

My question is, is there anyone with a similar story. If so, are you receiving any treatment and does it do any good ?

Brianh in England[/QUOTE]

Brianh: Oh my! Not to scare you but my husband was treated for cidp after being diagnosed for it. He did however go all the way thru treatments with prednisone + imuran, then ivig, then plasma phersis . He was misdiagnosed
He did get a spinal tap which did not show protein, he did get the sural nerve bioposy which did not show the onion bulb. We then went to Cleveland Clinic and they did a dna which showed Amyloidosis. It took 3 years to get this far.
The neurologist was his 3rd one and he knew that Amyloidosis was in the family background. The biopsy may not have shown amyloidosis if it was not checked correctly. The clev. Dr. told him to send it back and have it sliced and diced. We took it to Mayo and they said it did show Amyloidosis. Yours may not be it but it would pay to have it checked. What did they do to check for that for you?

The problem, as I see it, is that you went for so long without treatment essentially allowing the disease to continue to attack & damage your peripheral nervous system.

I feel that it may take quite some time for your body to respond to any kind of treatment & to heal. You may be beyond the point of getting better but treatment may halt any further damage being done.

Of course this is if you truly do have CIDP. I would ask for further testing to be done. There are quite a few other illnesses which can mimic CIDP.

Here is a link to a glossary for peripheral neuropathies:

[url]http://www.wrongdiagnosis.com/p/peripheral_neuropathy/glossary.htm[/url]

You could read through the list & write down any that mimic what you are experiencing & take the list to your dr. Make sure to research what tests need to be done so you will be able to convince the dr if needed.

Good luck.
Kelly

Brianh, I do not want to depress you as cidp does it anyway. Your experience almost follows mine. However, I may be much older. This can make considerable difference. After I was identified as having cidp, I went through the usual treatments. Nothing worked. I finally quit my neurologist, number 6 and the best. I went into pt for 9 weeks almost 5 hours daily. But kept getting worse. Now I’m in a wheelchair as I have no use of my legs. I have a pubic catheter. I use a hospital bed since I need to use a transfer board. I have found some great help via local agencies. I spend my days reading, computing and television, so life is not all bad. Sleeping pills get me to sleep which overrides the pain. A pain pill helps a little. If you are young,I’m now 84your chances of relief are much greater. If multiple treatments of IVIG did anything, they slowed my progression down. Hopeful for you.

Hi Brian…I have very aggressive CIDP. It took several years for the docs to figure out what would work. I tried steroids, PT, cellcept, rituxin, imuran, etc., plasmapheresis by itself, IVIG by itself, ect. When they finally figured out a combination that worked, I had been in the hospital for nearly 9 mos out of that particular year, paralyzed from the throat down. My neurologist feared that there was permanent damage & I might not recover any function. However, she came up with a treament schedule of plasmapheresis on thursdays & ivig on fridays. It took nearly a year, but I have regained much of my functioning. We have tried to cut my treatment schedule back to every two weeks, but paralysis occurred within 10 days of skipping the treatment. So for now, I just continue on with my weekly treatments. Even though your doctor may think he is out of options, there may still be things that he can try. If he isn’t willing, then maybe it is time to look elsewhere.

I hate to be redundant but I still think you should check on amyloidosis. There are 4 types and they are not all the same. Just like cidp everybody is different.
It has now been 4 years since my husbands symptoms started but it took 3 neurologists and a misdiagnosis for my husband to agree to another opinion. He has the slow progressive neuropathy which goes along with his type of Amyloidosis.
You mention rituxan. I was under the impression that you could only get that if you had cancer also. Maybe it is different in England though.

One year ago my husband was playing golf now he cannot as his balance is so bad. If we go to any theaters or basketball games he either leaves early or waits until most people have exited as he would fall if too many people are around him. He is numb from the knees down and he walks with a cane. To bend down he has to hold onto something. Once he fell outside in the grass and had to crawl onto the driveway. I found him sitting there just waiting for me to help him get up. This falling and getting dizzy involves the autonomic symptoms but not for everyone. He is presently on a clinical trial in hopes of stabilizing. Please ask them to check for amyloidosis or keep treatments closer together. You just cannot do nothing.

[QUOTE=brianh]Once again, thanks for your replies. When I see my consultant in 3 weeks I have several things to discuss with him.
He is the Reader in Clinical Neurology, at Oxford University, so he should know most of the answers.
Anyway as one of you said, doing nothing is not an option.
regards
Brianh[/QUOTE]

If there is any way to move up that appt. I would try, unless you do not see anything going backwards. You have to be aggressive. I have found out the hard way that you have to advocate for yourself. Let me know once you see your doctor, what he has to say. You can private message me if you want. Although my husband does not have cidp now he has gone thru alot. This disease has hit his axons. So the emg’s did not prove cidp like the neurologist said it did. That is how we found out that it was not cidp. However your case may be different. Your doc has to try something . Ours could not look outside the box. Everyone is different and sometimes the docs ego’s get in the way. At least with our experience. Do not take no for an answer. If he does not know what to do tell him to refer you to Boston Univ, or John Hopkins if that is possible. or someone where you are. Look up websites for hospitals who excell in cidp you England.

Joanf

Hi Brianh,
I have progessive CIDP, diagnosed in 1996. Since then I have been on various treatments starting with IVIG, then oral steroids, cellcept, imuran, cyclorsporn(sp?), Rituxan, cytoxin, five different MS drugs and PP with IV metheylprednisone. Have also been on high pulse doses of IV prednisone.

Single medication treatment protocals never worked for me. PP and IV solumedro combination worked best for me the past several years and slowed the progression to a crawl, but about six months ago I again begain to decline in mobility, strength, balance, etc. so I needed a change. Fortunately, in September 2008 our FDA approved a new IVIG product specifically for CIDP, GAMUNEX. The mfg process differs from other IVIG products in that it uses Glycene, a natural imino acid in the processing rather than sucrose, a sugar.
Early studies are showing Gamunex to have better and longer response than other IVIG products.

I switched to a new combination of treatments in December and am, for the first time in eight months, seeing improvement in strength, mobility, endurance and dexterity. I am doing PP and IV soplumedrol on Thursday, then Gamunex on Friday, every third week. I began seeing improvement after the third treatment. The doctor had to specify brand specific for the Gamunex. It is my understanding that Gamunex is the only IVIG product speciffically approved for treating CIDP here in the US. My Gamunex loading dose was 200 grams and the maintenance doses are 100 grams. My PP is a three liter albumin exchange followed immediately with 500 mg IV Solumedrol. I am beginning to get some nerve regeneration in my legs after almost 12 years, which the neuro said is possible. Reflexes that I haven’t seen in years. New medication, new hope.

As many have posted, we all respond differently to the various medications or combinations, so what works for one may not work for another. For me, it has always been a combination that has produced positive results and treatment has been ongoing for over 12 years. Without it I would not be functional. If a case is progressive CIDP, ongoing therapy appears to be a must if the disease is to be slowed or arrested. Response to a treatment may take weeks or months, so don’t give up on anything too quickly.

Regarding your question does treatment do any good, I was told that I would be chair bound within weeks six years ago. With the persistant and ongoing treatments, I am again able to work on my hobby of restoring antique cars, can now walk on level surfaces without a cane, my balance is much improved and I can walk longer distances without fatigue. So don’t give up and stay persistant with your doctors about the various treatments available until you find the combination that works for you. Hang in there and stay positive.
Fred