I came down with a very severe case of CIDP back in 2002 & was inpatient at Mayo when it was decided to finally try steroids on me. I didn’t do the oral, instead they started me out with 1,000 mg of solumedrol for 5 days straight, whic is prednisolone, but still steroids. Before they even began, they sent a shrink to talk to me about what I would be feeling on the steroids. He warned me about feeling very agitated, extremely talkative, nervous, difficulty sleeping, even suicidal thoughts. 40 mg a day is a high dose to be given without these warnings. At this point, I believe your biggest problem is the steroids. If you get a diagnosis of CIDP I do hope your neuro will try IVIG instead of steroids, or at least put you on steroid infusions (solumedrol.)

Lori,

Here is the best explanation of prednisone that I have seen. There is a good section on the possible side effects and how to avoid them.
[url]http://www.gihealth.com/html/education/drugs/prednisone.html[/url]

I have been taking various amounts of prednisone for ten years and have had 2 IVIG courses in the last 2 years. (I have another IVIG arranged for next week.) After much trial and error my neurologist and I found the the low dose (15mg) every other day prednisone keeps my CIDP symptoms “reasonably” in check – the IVIG is a boost for when the tremors or numbness start creeping up my limbs.

Unfortunately it takes time (and good communication with your neurologist) to experiment with the various treatment options you will need to deal with your CIDP. But remember that your life continues even while you are “sick” – save your energy for the fun stuff.

Flossie

I was on solumedrol infusions of 1,000 mg at least once a week. Solumedrol is another name for methylprednisolone, but it does have the terrible side effects of all types of steroids, maybe just a little easier on the stomach? I tried taking 500 mg of prednisone orally one time to substitute & got very sick. Solumerol is given via infusion, mine was usually in was looked like a “party ball” & took about a half hour to infuse. Hope this helps a little…

I agree with you. Even though my husband was misdiagnosed as haveing cidp He would never take prednisone again. The side effects are very dangerous plus who likes to be crabby all the time, hungry all the time, nervous, fatigued,gain weight,feel hyper, cannot sleep, etc. The worst is that it can cause cancer with long term treatment or cause you to be diabetic, etc…. Put prednisone with immuran as both bring down your immune system and he got a blood infection. Very life threatening. Only took about 3 weeks and nearly killed him.

If you take it stay with low dose or just do the immuran only.
Good luck

My initial treatment was Prednisone given by IV. I used that treatment for 3 years and then the treatment stopped working for some reason. I was then started on IVIG. I have had 4 treatments in the past year and I have had only 1 relapse. Before I started the IVIG I was using a forearm crutch or walker. Now I can walk unassisted. I highly recommend IVIG. It changed my life.

Hello,
I just wanted to add that I was on prednisone for three years. For me, it caused severe heartburn, which led to the ulcers I now have. If you come off of prednisone, it must be done VERY VERY VERY slowly. It took me almost a year to finally get off them.

Hi Kelly,

I know you are frightened of letting your daughter take prednisone – but from my personal experience no natural anti inflammatory will give her the relief that comes from an immunosuppressant. After all, CIDP is not simply an inflammatory process; it is an auto immune disease.

Yes, prednisone has a scary reputation but not every patient gets every side effect. And you might be lucky enough to have this simple pill stop the CIDP from constantly stripping the myelin from the nerves. Even though the high dose required at first had its “icky” moments, I can honestly say I was amazed at the pain releif. Once the auto immune attack has been subdued the healing can begin. With proper attention, low dose prednisone relief can be maintained for years if necessary.

There is more prednisone info in the thread about “CIDP reference pages”. Here is my favorite page about using prednisone:
[url]http://www.classkids.org/library/pred.htm[/url]

You will still want to investigate how a healthy diet and possible nutritional supplements will promote the best possible outcome. Do not just start using herbals and high potency vitamins without doing proper research. You could harm your daughter. Try to find a licensed natural pharmacist to help you.

I have spent years looking for a “natural” magic bullet to vanquish my CIDP . Unfortunately I have not found it yet.
Flossie