First shots for Loobie this morning

A board to discuss future MS therapies in early stage (Phase I or II) trials.

First shots for Loobie this morning

Postby Loobie » Tue Nov 28, 2006 11:06 am

I had my first shots this morning and to tell you the truth it was a little uneventful. The nurse made me turn around and close my eyes as he was instructed not to let me see the syringe (I'm sure that's normal protocol in a double-blind) and gave me one shot in each tricep area. The injections are sub-q, but it took about 15 seconds to get each syringe emptied into me, so I bet they were pretty full.

They kept me for an hour and I had no reaction at all. I don't know what that means in terms of indicating whether or not I'm getting placebo, but if I did get the drug, it acts very benign because there wasn't even swelling. Every body cross your fingers that I get the real thing!

I get my next "dose" on 12/28 and I'll report back then as well.

Lew
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Postby ewizabeth » Tue Nov 28, 2006 1:48 pm

Hi Lew,

So you had to close your eyes... that's interesting. I suppose it's good you didn't have a reaction. Maybe there is not typically a reaction on the vaccine or the placebo?

I hope you have the real thing, thanks for giving us an update. :)
Take care, Ewizabeth Previously Avonex, Rebif & Copaxone RRMS ~Tysabri, 31 infusions, ended 9/09. Starting Copaxone 12/09, waiting for Cladribine to be approved in 2010.
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Re: First shots for Loobie this morning

Postby Lyon » Tue Nov 28, 2006 2:51 pm

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Postby Lyon » Tue Nov 28, 2006 3:22 pm

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Postby Loobie » Tue Nov 28, 2006 5:23 pm

I bet that's possible. Verbatim he actually asked me to "turn around and close my eyes". They even had to shut the door. He was reading from a 3 ring binder that had my study name on it, so I am pretty sure he was following explicit protocol instructions. My neuro's office has an infusion clinic in it and this guy does the Tysabri infusions as well.

He was raving about how good the packaging was because he said that Tysabri's packaging was awful. He said they didn't seperate anything and the hose got wet and the instructions get wet. I told him I thought about 50% of Biogen's budget was probably marketing and not packaging and we both had a laugh.

I wanted to answer a question that sh8un had asked me concerning why certain people can't make the MRTC's but I can't remember the thread it was posted on so here goes:

They told me that the reasons have to do with recently being on interferons or steroids, or having been on them for a long time even if not recently. He also included monoclonal antibodies in that as well. He then told me that there was one woman who didn't fit any of that and still couldn't make them and they were going to keep testing her. They also explained that she was an extremely difficult diagnosis and they had to wait until she really presented a lot of clinical symptoms since she didn't present a positive spinal tap and her MRI was unremarkable. To sum it up, I don't think they have a clue why some people can't make them.

I have developed an ass busting headache (and I mean bad since I am one who can take a headache since I'm so prone to them) today since my injection that 800mg of Ibuprofen didn't touch. I don't think that it's a side effect since I have had those untouchable headaches before, but not since early on in my disease. Other than that, nothing abnormal at all after a full day of work after my injection. I'm just hopin' and prayin' that this is the one that gets the ball rolling. Someone had to be the first when the new drugs they use to put off AIDS were being trialed, and damnit, it might as well be me (us)!!!

Lew
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Postby Lyon » Tue Nov 28, 2006 8:03 pm

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Postby CureOrBust » Wed Nov 29, 2006 12:08 am

thanks for posting. we will all read your word with anticipation and hope that you got the real thing. good luck.

I would also be guesing they may have learnt some things from any previous trials to minimise any site reactions, if any.
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Postby sh8un » Wed Nov 29, 2006 7:01 am

Hi Lew,
Thanx for the update. I could not find where I that post was either. :? Hope your headache is better.
Take care,
NN
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Postby flipflopper » Wed Nov 29, 2006 10:30 am

I just wanted to thank you for your posts Lew. I love reading them. Hopefully you are getting the real thing and the real thing will be very effective! :)
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Postby pvns2005 » Wed Nov 29, 2006 1:00 pm

Congrats loobie. I should be getting my first injection of Tovaxin in a couple weeks.
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Postby Loobie » Sat Dec 02, 2006 3:53 pm

Thank you guys for all your support. I hope I'm getting it too. This is going to be the longest year because I won't be hardly able to stand the anticipation of finding out! I think one thing we MS'ers don't fall prey to is hoping too much. One of the first things I ever read about how to manage this disease is still my mantra:

Hope for the best, but prepare for the worst.

I really don't think finding out much of anything else (except something happenning to my loved ones) could ever be as big of a let down as finding out you have MS in the first place, so I think I'm safe to hope just a little smidge extra.
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Postby Lyon » Sat Dec 02, 2006 4:16 pm

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Postby Loobie » Sun Dec 24, 2006 10:08 am

UPDATE time!

I get my next shots this Thursday, but I wanted everyone to hear what's been going on. This could all be placebo effect, so bear with me. Also, this gets a little personal, but I guess that's what this place is about, sharing the REAL deal.

I have noticed a change in how I feel. It is slight, and may be that I was having a relapse and am just coming out of it, but it's different, so hear goes.

Over the last month, I decided I needed to start exercising again since I had quit running since I was feeling so out of balance and dizzy and instead of gaining stamina I was running less distance and feeling worse. I knew it was MS since I have been running for about 5 years and I know how I feel when I run and I was getting weaker, not stronger. Anyway, I went my FULL distance and did not stumble or weaken. Just yesterday I ran and I felt really good physically. I ran hard and pushed it (endorphins make me do that even though I know I shouldn't) and I didn't regret it. This is all new stuff as of late.

I just feel more solid and stable. Like I said, I may just be recovering from a relapse, but I thought it was significant enough to note.

Hopefully lots more to come,

Lew
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Postby Loobie » Sun Dec 24, 2006 10:18 am

I decided not to share the extra personal stuff until I see if it sticks!
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Postby carolew » Sun Dec 24, 2006 11:37 am

Thanks for all your posts Loobie, It WOULD BE SO NICE IF THIS WORKED!!!!!!wow, keeps us posted , Carolew
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