No cure

June 29, 2007 at 7:13 pm

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:
# 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.