dmcheney

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  • dmcheney
    July 10, 2012 at 10:22 pm

    Hi Lori:
    Glad to hear your are doing well and that you are tolerating the rituxin. Today I just had my third bi-monthly rituxin infusion. Everything for me went well. I started my infusions in Dec 2011. I am still pretty active but my function with my hands has not improved and my energy level is still low. I asked the nurse today how much rituxin was going into me and she said 855 Mg. On an earlier post I commented on the amount of your treatment. I guess I must have been thinking grams and not miligrams. Best of Luck, Dave

    dmcheney
    May 18, 2012 at 5:32 pm

    Lori
    The infusion rate starts at a reduced pace and then as you tolerate the Rituxan then they speed it up in increments. I reveiwed my billing and it had indicated 100mg of Rituxan and 50mg of Benadryl. I do believe they mix the Rituxan in solution so in total they give you more. 1000mg seems like a lot. In addition to web research you should try and review posts by Allaug and Norb. They have a lot of good info. They have discussed anti-Mag vs MGUS. There is a difference. It’s technical and confusing. I am an accountant and I believe researching neurology issues is like reading the tax code. It seems that the standard protocol is a loading dosage (for me once a week for 4 weeks) and then maintenance (for me that is – wait 5 months for the next infusion and then one every two months thereafter). So I had another infusion just last week. I would plan not to go to work. I have had only IVIG and the Rituxan. I was premedicated with claritin and tylenol. I had no headaches.
    good luck again. Dave

    dmcheney
    May 18, 2012 at 12:25 am

    Hi Lori:
    I have CIDP (Lewis Summner Variant). I have Monoclonal Gammopathy (MGUS). Blood produces an excessive amount of the IgM anitbody. I have been through IVIG treatment (in 2010) with little change. The Nero ended treatment mostly all though 2011 except when I saw him in Oct 2011 and complained that I felt I was getting worst. He updated my NCS & EMG which indicated I was losing Axon. The oncology/Hematologist I then met with suggested Rituxan therapy. (He had already ruled out blood cancer). I had 4 infusions in Jan 2012 – one per week. The most significant thing I can tell you is that your body’s first reaction to or experience with Rituxan is key. The Dr told me if I didn’t react adversely to the medication right away I would be home free. However, my first infusion I had no problem during the 4 hour infusion, but when I got home I felt I had a reaction to the stuff. I got a fever and felt flu like symptoms and my skin was on fire. I called the Dr and he said “your ok”. I took some tylenlol and went to bed. Woke the next morning feeling ok. Now, the next 3 infusions went without a hitch – absolutely no negative reaction . The only reaction seemed to be with the Benedryl. Makes you feel pretty woosy. At this point I can not say it has done anything for me. What I have heard is that if it is going to help it may take 6 months. So I am being patient. I wish you great success. Dave
    I hope this is helpful. Good luck

    dmcheney
    May 15, 2012 at 1:07 am

    Hi bny806,
    As I noted the other time I posted – I don’t post very often. But your symptom is very curious. I was diag’d 10 years ago with CIDP Lewis Summner variant. There have been many times that I have experienced the same sensation. Most always on my upper legs. Usually when its hot and I have exerted myself . Its a strange feeling but you describe it pretty well. For me its a kinda cold sharp prickly feeling. I never told my nero because I was afraid he would send me to a shrink. LOL
    Two rounds of IVIG now on Rituxan.

    dmcheney
    December 21, 2011 at 10:28 pm

    Hi Billt
    Thanks for the welcome mat. Most of 2009 I saw Dr Shea at UCLA. He is a partner with Dr. Graves. I did not feel particularly good with Dr Shea. I know that they are good but they seem to focus more on teaching interns than treating patients. There is a Dr with Encino Nureo Group in the San Fernando Valley who I have heard is very good. I tried to see him but the staff would not let me because I had already seen another nureo in the group. I’m currently seeing a oncology/hematologist in Valencia Ca. who I think is great. He ordered Rituxan for me and in 2 weeks it was approved. If you need some specific info let me know.
    Happy Holidays

    dmcheney
    December 15, 2011 at 9:45 pm

    I am 61 years old. Diagnosed with CIDP about 10 years ago. Have been suffering basically as silent as possible. I am an accountant and my ability to work is closing in on me. I have to admit that I have been reading info from this club for years and never posted. Certain long time members have had great smart things to say in this forum. I have benefited from and have appreciated all the great info. I like a lot of us have been thur many neuros, many NC studies, spinal tap, two sets of IVIG in 2002 & 2010 (not much help). I have monoclonal gammopathy (MGUS). I have also been diagnosed with Lewis Summner variant (from a UCLA Nero in 2009). One reason I have not posted before is that I have been able to function pretty well. I am sadden my those in the club who have suffered more than I. I will try to post more substantive info in the future but I just wanted to get started (probably the two glasses of wine). Next week I start an infusion of Rituxan. Will talk soon. Thanks