Guest guest Posted October 31, 2001 Report Share Posted October 31, 2001 vicki...i'm not on methotrexate...i used to be...right now im on cyclosporine...cytoxan and IVIG...and about the campath..i think it seems to be doing something because my B<T doc said i have a couple of new t-cells now..and thats about it so far...gotta see how the next set of labs come out...but my rheumy was very excited today when she came to see me...i've never really had a cpk of less than 2,000 before except for last time when i got to 900 something for the first time...but right now i'm at 670!!! yay! =] it seems to be doing something! lots of hugs and BIG BIG smiles, susan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 2001 Report Share Posted November 1, 2001 That's great news, ! Do you feel stronger? I sometimes feel strong and end up having a high cpk and then other times I think I am feeling weaker and my cpk is low. How has yours worked? Zanna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 2001 Report Share Posted November 1, 2001 Good Morning ..... Now that's exciting to hear you've reach the 670 mark. It must be working. I'll be even more excited to see how it will work later on. Will you get another infusion of Campath? I'm keeping my fingers crossed for not only you but if this works, it would help others. Do you feel any better? Hope you have a great day... Take care, Vicki Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 2001 Report Share Posted November 1, 2001 vicki..i'm very very excited i've reached the 3 digit mark..=] hehe...i do feel a little different..i'm still a bit tired but i have gotten just a little bit stronger.....and no i will not be receiving another infusion of campath...it was just that one time and thats it because that one time killed all my lymphocytes and that was all they needed. susan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 2001 Report Share Posted November 1, 2001 zanna i actually do feel a little bit stronger....some things i've noticed arent as difficult as they usually are..but im still kind of tired.. susan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 2001 Report Share Posted November 1, 2001 I am always tired. I have just come to terms with the fact that I will be tired every day of my life!!! But on my good days, it is easier to do other things. Like brushing my hair or getting out of a chair. The thing I miss the most is being able to sit on the floor and play with the kids. If I dare get down there, I am not getting up any time soon! Zanna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 2001 Report Share Posted November 1, 2001 oh i miss sitting on the floor too......i do sometimes but its usually with christian there to pick me up.....if i'm alone though...i can manage to get up by using a chair or bed or something...but it takes a while... susan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 2001 Report Share Posted November 1, 2001 Zanna... I know what you mean. I used to love getting down on the floor to play games with the grandchildren (like jacks, marbles, Lincoln logs, etc.) and I really miss that. The worst is when my little two-year-old puts her arms out to me to be picked up and I can't do it. She's getting to realize that her Nana can't pick her up, but I know she doesn't understand why. Annette -----Original Message-----From: wischic68@... Sent: Thursday, November 01, 2001 4:41 PMTo: OurMyositis Subject: Re: - DrugsI am always tired. I have just come to terms with the fact that I will be tired every day of my life!!! But on my good days, it is easier to do other things. Like brushing my hair or getting out of a chair. The thing I miss the most is being able to sit on the floor and play with the kids. If I dare get down there, I am not getting up any time soon!Zanna Quote Link to comment Share on other sites More sharing options...
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