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Joined: Feb 02, 2004 Posts: 864 Location: California, USA
Posted: Thu Nov 16, 2006 4:09 pm Post subject:
amelia-- what a saga, but I'm very hopeful for Gary that now (or soon!) that he can get the right medicine for the condition, he will be doing much better. _________________ Disclaimer: Any information you find on this site should not be considered medical advice. All decisions should be made with the consent of your doctor, otherwise you are at your own risk.
Joined: Aug 10, 2006 Posts: 39 Location: Hyde Park, NY
Posted: Tue Nov 21, 2006 11:33 am Post subject:
I can't find what I did.
Anyway, here it is:
1st infusion lot # P68013
exp. 5/08
2nd lot # P68013
exp. 5/08
Same for both.
Infusion was uneventful, no problems. Talked with infusion RN and she has 8 patients on Ty with no reactions. There is a music teacher on her 4th and is now back to playing the violin. She is doing better than I am.
Hope is out there, grab it if you dare. Trying and failing is better than not trying at all. Hey, but what do I know.
Joined: Feb 10, 2005 Posts: 309 Location: grenada, ms
Posted: Tue Nov 21, 2006 12:43 pm Post subject:
thanks Aaron. Gary is now taking Cellcept to knock his immune system down. He is also taking a 10mg shot of decadron twice monthly until the cellcept kicks in. According to research, with Devic's, they must put you into remission and it can only be done, for now, with chemo type drugs. He seems to feel better, but we know he isn't on much. Probably a lot of psuedo effects.
Joined: Nov 24, 2004 Posts: 15 Location: British Columbia, Canada
Posted: Wed Nov 22, 2006 2:29 pm Post subject:
Pete,
I am enjoying reading the updates of your progress with Tysabri.
I am in British Columbia, Canada and Tysabri is now approved here as well. I phoned our extended health company and they said they will cover me with a $3000 annual deductible.
I am however RRMS going into SPMS (will be 47 in January/diagnosed in March 2004/tried Rebif for 9 months with poor results) so am hoping that Tysabri may work for me. It will be in the new year before any infusion centers are open so I will go from there.
Anyways, I appreciate your great attitude towards your recovery. If you get discouraged remember the child's story of the tortosie and the hare...slow and steady wins the race. :)
Happy Thanksgiving (In Canada we celebrate Thanksgiving the second Monday in October FYI).
Gary is now taking Cellcept to knock his immune system down. He is also taking a 10mg shot of decadron twice monthly until the cellcept kicks in. According to research, with Devic's, they must put you into remission and it can only be done, for now, with chemo type drugs. He seems to feel better, but we know he isn't on much. Probably a lot of psuedo effects.
Ask your doctor about lifetime max limits on Cellcept. At 4 tablets a day (2 morning, 2 evening), I think it works out to less than 2 years it should be taken. Also ask about eventually switching to something else, such as methotrexate.
Joined: Aug 14, 2006 Posts: 103 Location: So. Calif.
Posted: Thu Nov 23, 2006 9:26 pm Post subject:
((((((Amelia, Pete, Erin, everyone)))))),
I can't stay long as I ate too much tonight (my caregiver's wife went insane and cooked enough food for an army, literally: turkey w/stuffing, ham baked w/pineapple slices and cherries on top, cranberry compote, cornbread, potato salad, pineapple upsidedown cake topped with cherries, lemon meringue pie, triple layered chocolate cake, and cherry pie) I think I am going to explode!
Thank you Pete for the Lot#'s and Exp. Dates of the Tysabri vials, and for improvement updates, large, small or just status quo....our website www.mspatientsforchoice.org will soon be posting many Tysabri experiences, and if anyone is interested in participating by sending a comment, please do so by sending same to: [url]admin@mspatientsforchoice.org[/url]
From the website: "Comments may be chosen to be placed on our web site. If we choose your comments for our web site, only your first name will be used to protect privacy, unless directed otherwise".
Many, many blessings, prayers and hugs to you all. G'night.
Lauren _________________ Feel free to visit my Blog and leave me a comment, I'd love to hear from you!
Joined: Feb 10, 2005 Posts: 309 Location: grenada, ms
Posted: Fri Nov 24, 2006 9:37 am Post subject:
Quote:
Also ask about eventually switching to something else, such as methotrexate.
We had the option between methotrexate and cellcept. As for the research, cellcept looked to be the least toxic. And it doesn't interact with everything under the sun as metho does. I have never read the life time dose of it. I'll keep that in mind. At the moment, he is only taking 2 250mg capsules, 1 in morning 1 at night. The usual dosage is more in the 2-4 grams a day. With Devic's, for whatever reason, they want to put you on some type of immunosurpressive therapy until you go into remission and then 5 years after that. MS drugs do not work as well with Devic's; CRABs. Rituxan looks good, but is too experimental right now for his DR to give him. She says he is doing too good for IV therapies at the moment.
Joined: Aug 10, 2006 Posts: 39 Location: Hyde Park, NY
Posted: Tue Nov 28, 2006 9:26 am Post subject:
Not all good,
If Friday's workout was "easy," then Monday was "hard." I got through it, but it was difficult. I feel better today, but Monday was VERY difficult. It's funny how now I'm anticipating Wednesday. Emotionally, a wall still seems to be there, just not as strong as after the 1st infusion.
Posted: Tue Nov 28, 2006 9:33 pm Post subject: Tysabri infusion
Update:
I've had (1) infusion on Nov 15. Just for the record, the lot number and exp date were the same at Pete's P68013 and exp 5/08 and I am in Georgia. No reactions except for a mild headache for a few hours. I have not noticed any improvements, but no regression either. Next infusion date set for 12/12/06. I was pre medicated with tylenol and benadryl.
Joined: Aug 10, 2006 Posts: 39 Location: Hyde Park, NY
Posted: Wed Nov 29, 2006 10:09 am Post subject:
update:
Finished my Wednesday workout. Seems like Monday shouldn't count. Increased to 13 min. on treadmill and the rest the same. My goal is 15 min. on treadmill and 10 on bike, then increasing speed one tenth at a time. I have settled on Wednesday to be my day to increase.
Feel good. Whole, MS people know, in control. Tired, but not fatiqued(SP)
Joined: Jan 28, 2005 Posts: 735 Location: Northern Ontario, Canada
Posted: Wed Nov 29, 2006 10:28 am Post subject:
sounds like it's really helping i guess there is hope for SPMS, this sounds like it would be for u beyond ms, what do u think of this. glad your doing well retired.
Joined: Aug 10, 2006 Posts: 39 Location: Hyde Park, NY
Posted: Wed Nov 29, 2006 11:25 am Post subject:
Again, I post hoping it helps to read how Ty has affected me after trying all FDA approved med's for at least 2 years on each except Novantrone, had max dosage there.
This is the only drug that I have improved with. After admitting that I would only get worse, and not knowing how I would wake each day, this has been some ride so far. It's different getting better. Your family doesn't know how to act. They have gotten used to me being dependent. It has taken a long time to take me down, and it will take a long time to get better. Slow progress is still progress.
A coach told me and I believe it. "Each day, you get better or worse."
I will not stay the same. Each day I will do something better or at least try. Evan if it's taking one less Advil.
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