Hello from Kazakhstan- Please nice people answer to my question

Leylim Hello CIDP is the chonic version of GBS. You always have it you do get better or maybe relapse. IVIG is good to stop the progression of the disease.

How is CIDP Treated?

Several treatment options are available. Prednisone, similar to protective anti-inflammatory corticosteroids that are normally made by the body, may be used as an initial treatment for several reasons. It often improves strength, can be conveniently taken by mouth and is inexpensive. Side effects can limit its use. Two other approaches have often been found helpful. High dose intravenous immune globulins (IVIG), protective blood proteins obtained from healthy volunteers, can be readily given through an arm vein. In another treatment, called plasma exchange (PE), or plasmapheresis, some of the patient’s blood is removed and the blood cells returned without the liquid plasma portion of the patient’s blood. It may work by removing harmful antibodies contained in the plasma. Treatment of CIDP is somewhat of an art. If a patient shows good improvement with an initial treatment but again evolves weakness it may be repeated or another therapy may be tried.

Also I believe some people have a fever but they don’t know why but figured it has to be because of the CIDP.

Sue

Leylim,

I have been taking prednisone for 5 years. I sometimes have a high temperature for no apparent reason. My neurologist is not concerned.

However, if I actually catch a cold then that virus makes my CIDP symptoms much worse. Then I must temporarily increase my prednisone dosage. I am very careful not to go places where I am likely to be exposed to illness. While taking prednisone exposure to measles or chicken pox or even the polio vaccine is dangerous!

The prednisone does let me live a normal life as long as I get lots and lots of rest. I keep a careful watch for steroid side effects such as osteoporosis, diabetes, glaucoma, and cataracts.

No one can tell if your father will completely recover from CIDP. Make sure he gets lots of rest and a good diet. It takes 3 years for the body to replace all the damaged myelin once the CIDP attacks have stopped. Unfortunately, if the CIDP is not controlled then the myelin continues to be destroyed.

I hope your father will be one of the lucky ones who gets well.
Have patience.
Flossie

Hello Leylim,
Welcome to your new family, where we feel what you feel. Flossie is saying that she does well on just prednisone, but the majority of us (I have CIDP) also need other medications. The treatment most often used is IVIG (infusions). Please talk to your father’s doctor and find out if IVIG’s should be started so you’ll know if he does better. If he starts to improve with the IVIG’s, then the doctor can find out how often your father needs them. CIDP is a syndrome that moves very slow, so we get better very slowly. The medications like the IVIG infusions can bring about an increase in strength, but another very very very important purpose is to CONTROL (not cure) the progression of CIDP. When the progression is controlled, we CAN heal and many of us can become “almost” normal. I am now under control and I am healing, but because I was severe, I will not recover 100%. Exercise and physical therapy can be important and help us, but you must accept two things, if you are still in a progressive stage, you are only MAINTAINING the strength you have and we all suffer chronic fatigue, so your father MUST listen to how tired he is.

You do not die from CIDP, when you hear about someone who died from this, it is from complications like kidney failure, heart, or another ailment they had.
NEVER NEVER NEVER NEVER GIVE UP, we do have hope.

Hello Leylim,
Welcome to the family. First, the good news, CIDP will not kill you. The bad news is that it is a chronic condition. That is, it hangs around for a while. What you have been told about IVig and rest it right on the mark. Since this is a chronic condition, you and your dad will need a lot of patience. Your dad should slowly get better. It seems that each individual responds at their own rate to treatment.

Hang in and never give up hope.

Jim C

Leylim, glad that you found us. I hope you had a great Christmas considering. It sounds like your Dad has either relapse/remitting CIDP or they just haven’t been able to get it under control. When I was hospitalized I also had great fluctuations in my heart rate and also my temperature. Once treatment was started with Prednisone/Steroids and IVIG, all of that stabilized. In my opinion they need to be more aggressive with his treatment if he is still having those issues after one year.

It is hard to know what triggers our CIDP, mine was believed to be caused by a Upper Respiratory Infection just prior. I just passed my 3 year anniversary of having CIDP and am doing pretty well. People do recover to varying degrees once the attack is stopped and physio can be started. It is important that they get his Autonomic issues under control. Have they tried IVIG? Maybe the Prednisolone dosage was too low to start? Will Prednisone work better?? These are all things to ask.

We are all here to help however we can. You are all in my thoughts and prayers, email me anytime if I can be of help [SIZE=1][B]jerimyschilz at hotmail dot com[/B][/SIZE]

Take care.

Jerimy Schilz

[quote=Leylim]Hello Guys! I am writing from Kazakhstan. If you know this country it is located in Asia it was under the USSR!
First of all for all of you Merry Christmas and Happy New Year!
My dad was diagnosed with GBS one year ago then it transfermed to CIDP! CIDP repeated for 2-3 times. About 4 months he is taking prednisolone he is doing ok! But now he has over than a month temperature! He is temperature is not stable. It goes untill 39.7. And doctors can`t find the reason. Is it cause of CIDP? Do you guys know? Has anybody faced this?
And my second question is from CIDP do people recover? If so will it repeat again? Is it life threathing?
I will be really happy and it will be very helpfull if you guys answer! Thank you so much! For all of you I wish long life and strong health![/quote]

Leylim,

It is good that you found this site. There is a wealth of information here… and these folks will help you.

They’ve done a great job of answering your questions so I would like to wish your father and your family the very best.

Have a wonderful Christmas season and a Blessed 2007

Keep your chin up. 🙂

привет ! welcome Leylim, I don’t remember much Russian but I tried to say “Hi”. I also have CIDP since 2001. The only time I have increased temperature is usually after IVIG treatments. Along with the increased temperature I have mild flu (influenca) symptoms. It usually goes away after a few days. When I was on Prednisolon, I did not have an increase in temperature.

Leylim welcome to the family. Five years ago when CIDP was aggressively active I had fever for several months, I posted on the website and found 10 others who experienced the same. I was fully investigated for causes of fever, no cause was found. CIDP is an inflammatory disorder and was the background to all of us so even though the textbooks do not yet accept fever as a sign, CIDP must be the cause. DocDavid

Strazvitye Leylim,

I take IVIG as treatment for my CIDP, monthly. My blood sugar levels rise into the 290+ range, on the IVIG days. Also take 14mg. of prednisone alternate days and solumedrol (sp.), on the IVIG infusion days. All this caused my rise in blood sugars. If your Father is diabetic, keep this in mind and monitor it and have the Dr. adjust it with insulin, if it is a large rise.

Dosvidanya…Paul.