There is no cure for CIDP. The various treatments are all trying to affect the attack on the myelin. Some peple are lucky and can be helped by prednisone. (Of course, some people are even luckier and only have one attack and then their myelin grows back in an optimistic 3 years.)

Here are the treatment options that are taught by the University of Washington in St Louis’ school of medicine:
[url]http://www.neuro.wustl.edu/neuromuscular/antibody/pnimdem.html#cidprx[/url]
# Treatment
* Try individual therapies sequentially
* Response to one does not predict efficacy of others
* Therapeutic modalities
o Prednisone: 60 to 100 mg/day p.o., then taper
+ Start taper after: 3 to 6 months; or clinical improvement begins
+ Taper slowly
1. Initially by 5 mg on alternate days q2 to 4 weeks until 80 mg and 10 mg
2. Then by 2.5 mg on alternate days q2 weeks to 80 mg and 0 mg
3. Then taper high day dose by 5 mg q 4 weeks until 40 mg and 0 mg
4. Then by 2.5 mg q4 weeks
5. Minimum dosage is qod if possible
+ Many CIDP patients will relapse if Prednisone is stopped without additional immunosuppression
o Methylprednisolone (IV): 1 gram/day x5
+ Then intermittent (tapering) additional iv or oral doses (1 gram): Weekly to Monthly
o Human Immune Globulin
+ 1g/kg/day x2; repeat q3 to 8 weeks
+ 400 mg/kg 1 to 2 times per week for 8 or more weeks
o Cyclosporine A
+ Initial treatment when prednisone not indicated
+ Dose: 2.5 mg/kg b.i.d., then taper to monimum effective dose
o Plasma Exchange
o Azathioprine:
+ To lower corticosteroid or Cyclosporine dosage
+ Dose: 2.5 to 3 mg/kg
o Methotrexate: 7.5 to 25 mg p.o. on weekends
o Cyclophosphamide: Monthly IV pulse x 6; For refractory patients
o ? Interferon α 2A
………………………………………

All of the treatment options have side effects.

I happen to be one of the lucky people who responded immediately to 60mg of prednisone for just 2 weeks. Unfortunately I also have on going CIDP which means I need to help of the drug to keep the constant attacks in check. Some times my taper schedule has been reduced too much and my symptoms return immediately. It’s a balancing act.

I am not writing to influence people who know that IVIG is the drug that best treats their CIDP. I am just interjecting a consideration for any newbies that might check this thread that properly tapered prednisone does not necessarily give you diabetes, glaucoma, caratacts or osteoporosis. I have my blood sugar, eyes and bones checked regularly. I do take Actonel and vitamin supplements. I take the best care of my self that I can since I am forewarned of the risks of prednisone.

And when prednisone stops working I can go down the list of other treatment options.

Because CIDP is a rare disease we all owe it to ourselves to be actively informed and involved in our treatment decisions.
Flossie

Here is a web site about how doctors sort through possible peripheral neuropathies. Look through the list and see if there are more tests you want to ask your doctor about.

An Algorithm for the Evaluation of Peripheral Neuropathy
Ann Noelle Poncelet, M. D.
February 15, 1998 – American Family Physician
[url]http://www.aafp.org/afp/980215ap/poncelet.html[/url]

I am sorry to hear about your frustration and pain. I am another patient who is helped tremendously by Neurontin – generic gabapentin.
Flossie

Have you seen this web site?

[url]http://www.lowdosenaltrexone.org/[/url]

Low Dose Naltrexone (LDN) has been around quite a while. I visit multiple sclerosis boards where patients report good outcomes with it.

Flossie

Hi Mary Ann,

When I was first diagnosed my doctor did say that CIDP could go away. But there was no way to know ahead of time if I would be one of the lucky ones. (Turns out I am not.)

Technically the “chronic” part of CIDP means that it took a “long” time to happen – as opposed to “acute” which means it happened suddenly. Unfortunately the majority of CIDP patients have progressive or relapsing forms of the condition so it seems as if the “chronic” stands for forever.

Please don’t exercise to the point of pain. You have an illness which demands you listen to your body. You need to carefully balance the need to keep muscle tone versus exhaustion. Find an excercise routine that does not hurt your feet. Are your shoes and socks fitting properly?

Prednisone can cause damage to bones and joints. Have you had an orthopedist take x rays of your shoulders? Do you get routine bone density tests? I take prednisone and am very faithful about taking my calcium supplements.

I agree that damp heat makes me weak. I never take a bath unless I am sure someone will be home to help me out of the tub if necessary.

Take care,
Flossie

Ninus – Thanks for the American Autoimmune Related Diseases Association web site. There are some excellent articles there.
…………………………………..

Taryn,

I have a bunch of CIDP web sites that might entertain you while you wait for your next neurologist appointment. If you want to PM me I can send them to your email address. Then you can direct click on them instead of having to enter them by hand. There’s even an electron microscope photo of the myelin being stripped.

I was told that rest and time could heal the effects of CIDP – once the attacks on the myelin have been stopped. It takes about three years to replace the miles of myelin in your body. Unfortunately for some of us we cannot stop the attack completely so the best we can get is a stalemate between losing and repairing myelin.

Naturally you are frightened of the various chemicals used to stop the myelin attacks. But you do need something to get back your quality of life. Remember that not everybody gets any or all of the side effects of the drugs. Do your research, ask your neurologist questions, come to the forums for support.

I had gradual symptoms for about 5 years before I mentioned them to my doctor – I thought I was getting old, or I just caught the flu more often than anybody else. My family doctor immediately used the word demyelinating and sent me to a neurologist. Within a week of starting the prednisone my CIDP symptoms began to subside – I haven’t had foot drop since. Of course I was also mean as a snake on high dose prednisone. Things are much better on the low doses – although I still see a mental health clinician on an irregular basis. It’s better my family learn to deal with stress issues rather than have the untreated CIDP put me in a wheel chair.

My CIDP symptoms are always amplified with any illness. I hope you are being very careful about your cold.

Flossie

This sounds like the perfect prescription to ask my doctor for. And I am lucky enough to know where there is a compounding pharmacy.

Unfortunately I could not google any info on “amitryp-bacio”. Is there any other information on the box? Brand name of the ingredients in the compound?

I like to take my doctor a print out of what I am asking for so that I am sure the two of us are discussing the same thing. Somethimes my “patient English” is not his “doctor English”.

Thanks for bringing this to my attention,
Flossie