Five month update, shamless self promotion, and a question?

A board to discuss the soon-to-be released drug Campath as a treatment for Multiple Sclerosis

Five month update, shamless self promotion, and a question?

Postby sugarmomma » Wed Aug 13, 2008 10:41 am

Well yesterday marked the five month date of my first Campath infusion. I wish I had more to report about how I feel, but it changes from day to day. I definitely feel the long term effects of the treatment. My hair has not recovered from the infusion. It used to be very healthy and shiny where as now it is dry and dull. My skin was never quiet the same. I am always dehydrated, no matter how much I drink. And I gained a tricky seven pounds that has been impossible to lose.

However, I am still elated at the relief of having a life without those horrible interferons. It is amazing how my quality of life has improved since I stopped taking those. If I had to say whether or not the Campath helped my MS yet, I would lean towards yes. But again it is hard to judge whether I feel better in general because I am not injecting that poison into my body 3-5 times a week. In general I would say my symptoms are better as well. My eyesight seems stable. My numbness seems better. I haven’t had as many leg cramps or as much spasticity. My cognitive problems don’t seem all that better though and my memory continues to gets worse with each day. I still get exhausted, dizzy and nauseas a lot but that seems more related to me pushing myself too hard or over heating myself.

The monthly blood draws have gotten way more convenient, as they send a nurse to my home every month and I hear from my doctor less and less each month. I do send an email each month asking if I can get my nose re-pierced again (it closed up right before the infusion) and every month they ask me to wait another month. My doctor is going to be really unhappy when I tell him I want a tattoo as well. Last month my doctor said that my labs are back in the normal range, so it looks good.

I am still trying to decide if I am going to do the second infusion next year. I am pretty sure I will but I have some doubts after the whole experience. I have a question for the people who tried Campath years ago is. What are you on now? Do you still do it every year or did you go back on the interferons?

Also in unrelated news I started my own blog. It is really just unexciting observations about my life, but since I do have MS, I will talk about MS from time to time. I mean it is part of my identity now. If you are horribly bored and dying to read about my life here is link.

http://hystericalblindnessebysassypants.blogspot.com/

I hope everyone else in the phase III trial is feeling well. Let’s hope I have more to report at month six.
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Postby freiguy » Thu Aug 14, 2008 5:02 am

Sugarmomma,
I completed the campath infusions last month and just went for my first blood work. My white count came back extremely low. I am not sure what the doctor was expecting the values to be but I guess it was lower than that and she wants to see me in the office tomorrow. I am not sure if she is worried about anything other than infections...Iwill find out Friday. If you don't mind me asking, do you remember what your counts looked like after the first blood draw?
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Postby sugarmomma » Thu Aug 14, 2008 6:52 am

Hi Freiguy,
I am not sure of my exact white blood count, my doctor focuses more on my platelet count ( wait, are they the same thing? I get confused) Anyway I do know that on my first month visit my platelets were 247,000. I know my friend's count was much lower though. Hers was closer to 180,000. We think she got the larger dose. I guess the main thing to watch out for is any unusual bleeding or bruising. How are you feeling? I hope this helped some. Also what part of the country do you live in?

Take care
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Postby freiguy » Thu Aug 14, 2008 1:05 pm

Sugarmomma,
I live in Tennessee. Right now I have been feeling really worn out by 2 or 3 in the afternoon. Some days are better than others. The first few days after the infusions was tough...I had no energy to do much at all. I sort of bounced back after a couple of days and felt pretty good and started to do things that were in my normal routine. I haven't felt like I have been sick so I really didn't have any concerns about the monthly blood draw. I am not sure what results I was expecting to get but it sure wasn't a call from the doctor telling me my white count was lower than expected. My doctor requested that I come into the office to take a look at me. That's set for tomorrow morning. I will know more then.
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Postby NHE » Tue Aug 19, 2008 5:34 am

sugarmomma wrote:My doctor is going to be really unhappy when I tell him I want a tattoo as well.

Regarding tattoos, here's something you might want to look at...

http://www.nationalmssociety.org/download.aspx?id=1378

NHE
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Postby queenie » Sun Sep 27, 2009 8:09 pm

I am five months post Campath.
My counts dropped to expected levels, and have been rising slowly and consistantly.
I have not been sick once with any illness.
I have not caught my DD's bad, bad cold.

I feel better than I have in 20 years!

I am ready and willing to sign up for year Two!
O do not miss the nightly ionjections at all!
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