AnonymousApril 9, 2011 at 1:21 pm
I have a question for anyone who knows about Solumedrol. I got CIDP in the fall of 2004 never got treatment and I improved. In the spring of 2005 the local Neurologist sent me to Ottawa to see another Neurologist because he felt I was getting worse. I was diagnosed with CIDP but I didn’t need treatment.
I got a relapse in 2007 and I had 5 days of IVIG which during those 5 days I didn’t feel any sudden improvements. Also at that time I had sudden hearing lost in both ears and I saw a hearing specialist in Ottawa while I was getting my IVIG treatment. She recommended 50mg of Prednisone for 2 weeks but as she didn’t know me wanted somebody else to give it to me.
Both my family Dr and hearing Dr were on holidays at the time. The other Dr working at the medical clinic let me have 2 weeks of 50 mg Prednisone till I could see my local hearing Dr. When my hearing Dr found out I was on Prednisone he did not like it and would not give me anymore except when I told him I need a week to wean off the Prednisone.
On the Prednisone I notice that I was going into remission of my CIDP and regaining some of my hearing lost but that I had no more improvements after I was cut off of Prednisone.
I received 5 days of IVIG in January 2008 to see if it would give more improvements and I didn’t improve anymore but was still in remission. I felt it was the combination of the Prednisone and IVIG that helped me.
In 2009 I had another relapse and was offered IVIG but I refused it I wanted Prednisone. I was on it for about 5 months when I went into remission but during that time I became a diabetic. Now that we are in 2011 I feel I am having another relapse but I don’t want 5 months of Prednisone because I am still diabetic but I also don’t want 5 days of IVIG by itself if it is not going to help me. In 2007 I had about 3 weeks of Prednisone after the IVIG to get me into remission and in 2009 5 months of Prednisone I would rather 3 weeks anytime. But I read up a bit on Solumedrol and wondered how that could help me at this time?
I go see my new family DR on Wednesday to ask him to do a check up on me and also that I can tell him that I feel I am having a relapse and then he could call my Ottawa Neurologist to set up an appointment for me. I saw her last fall and my next visit with her is only schedule for this October which I can’t wait that long. I want to be able to have a plan on what kind of treatment I would like to have and ask her opinion on this and I want to have concrete data to show her like proof that what I want is also a treatment for CIDP.
Any advice from anybody would very much be appreciated.
April 10, 2011 at 10:14 am
I have been given weekly infusions of Solu-Medrol before the Gamunex infusion. As usual with CIDP, there is no way of knowing if what improvement there is was a result of the treatment or would have happened anyway. My worse problem right now is pain around the hips that keeps me from trying for further gains. I have been on Prednisone also. It is the first choice for some neurologists others don’t like the side effects. Who knows?
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