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Wonderful news!

Wonderful news!

Old Jul 21st 2004, 1:59 am
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Talking Wonderful news!

Well I found out today that Biogen, the manufacturer of one of the MS drugs has accepted me on their program. I had to fill out forms and declare my UK income from last year after tax and have it notarized, and within 24 hours I had acceptance. Normally its $1,220 per month and they are giving it to me for $100 PER YEAR!!!! All I have to pay is that, plus shipping of $25 per quarter. I am just amazed - I thought it was such a long shot and so many people had told me not to hold out any hope - they have been wonderful - are sending a counsellor person out next week and then a nurse every week for the first 6 weeks that I will be injecting, and they offered to train someone else too. A couple of the ladies in my work have offered. It's the only drug that is once weekly, the others are more frequent so from that point of view its great - as normally you get flu for about 24 hours afterwards so it should be less intrusive too. The stats aren't bad etiher, 97% effective at reducing brain inflammation, and a 40% chance of slowing the progression etc. The best part of all - it means I can participate in the North Caroline trial where they monitor you if you are on Avonex and give you an MRI every 3 months for free to see how it is working!

Just a great day all round - I had a half day from work this morning and I went to the kids hopsital downtown which specialises in brain diseases / traume etc - and they have kids from all over and a lot of British doctors working there - they are crying out for volunteers - just a pity it took something like this to happen to me to think about doing stuff like this - just amazing, amazing people and very humbling.

I guess there was a reason for me ending up staying on here eh! My boss is looking at the forms for H1B this week too, I know its going to be a long shot as I am going to have to go down the 12 years work experience route to try and get it but they said they will help all they can. Biogen have approved me until July 2006 meantime.

The only downside I feel, is my friend at home's sister has MS and she cant get the drug there and I sort of feel bad about that - jsut doesnt seem fair somehow, but believe me I know how lucky I am to have a shot at this, especially not being from here etc.

I suddenly feel so settled, love my job and things just seem to be falling into place now, still get lonely at times and sad about how things turned out but I fully intend to make the most of things now! Anyways, just wanted to share the good news!
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Old Jul 21st 2004, 5:28 am
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great news lesley

Anna
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Old Jul 21st 2004, 12:04 pm
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Good news, very glad it has worked out for you.

Now, how are those bugs coming along?
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Old Jul 21st 2004, 12:44 pm
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I've been following your unbelievely awful news...I'm SO glad you're finally getting beter news....I DO hope things work out well for you....CONGRATS on getting on the testing program I REALLY hope it helps get your MS under control....best wishes....Sophia
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Old Jul 21st 2004, 12:49 pm
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It's about time thing too a turn for the better for you. Well done. I hope things are on the up from here on.

... and well done on the volunteering. It's great when you are able to put a little back in too.

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Old Jul 21st 2004, 5:54 pm
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Hi, Lesely,

Glad things are going better for you!

Sara
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Old Jul 22nd 2004, 12:29 am
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Wonderful news.

I believe that sometimes the reason we do something isn't the reason we are really doing something afterall, it's just life's way of setting the stage for something else
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Old Jul 22nd 2004, 4:38 pm
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Wow! I haven't been here very much lately, so it's great to see things have really taken a turn for the better for you.
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Old Jul 22nd 2004, 5:01 pm
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Way to go, Lesley.

Glad things are working out for you now, and congrats on getting on the trial.

Fingers crossed for your H1B!

Joe
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Old Jul 22nd 2004, 5:36 pm
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Default Re: Wonderful news!

Hiya Lesley,

I usually don't frequent this board, but just happened to today. I too have MS, and have been officially diagnosed for about 2 years now. I've been on Betaseron (I think it's Betaferon in the UK) for about 2 years as well. Unfortunately, it's one of the every-other-day injections, but I've dealt with it quite well considering my phobia of needles! bleh! The cost for the drug under my insurance is $25/month, while it would cost full price $1500/month, so you're definitely getting a great deal!

Is the drug you're going to take called Copaxone (sp?)? I think that is the one that is once a week if my memory serves. I sometimes get the flu-like symptoms, but mostly they have disappeared as my body got used to the medication. In the past couple of years, I have found the forums at www.msworld.org to be a wealth of support and information.

Congrats on your acceptance to the program, and I hope this helps to bring your symptoms under control!

Cheers,
Jamie

Originally posted by Lesley1020
Well I found out today that Biogen, the manufacturer of one of the MS drugs has accepted me on their program. I had to fill out forms and declare my UK income from last year after tax and have it notarized, and within 24 hours I had acceptance. Normally its $1,220 per month and they are giving it to me for $100 PER YEAR!!!! All I have to pay is that, plus shipping of $25 per quarter. I am just amazed - I thought it was such a long shot and so many people had told me not to hold out any hope - they have been wonderful - are sending a counsellor person out next week and then a nurse every week for the first 6 weeks that I will be injecting, and they offered to train someone else too. A couple of the ladies in my work have offered. It's the only drug that is once weekly, the others are more frequent so from that point of view its great - as normally you get flu for about 24 hours afterwards so it should be less intrusive too. The stats aren't bad etiher, 97% effective at reducing brain inflammation, and a 40% chance of slowing the progression etc. The best part of all - it means I can participate in the North Caroline trial where they monitor you if you are on Avonex and give you an MRI every 3 months for free to see how it is working!

Just a great day all round - I had a half day from work this morning and I went to the kids hopsital downtown which specialises in brain diseases / traume etc - and they have kids from all over and a lot of British doctors working there - they are crying out for volunteers - just a pity it took something like this to happen to me to think about doing stuff like this - just amazing, amazing people and very humbling.

I guess there was a reason for me ending up staying on here eh! My boss is looking at the forms for H1B this week too, I know its going to be a long shot as I am going to have to go down the 12 years work experience route to try and get it but they said they will help all they can. Biogen have approved me until July 2006 meantime.

The only downside I feel, is my friend at home's sister has MS and she cant get the drug there and I sort of feel bad about that - jsut doesnt seem fair somehow, but believe me I know how lucky I am to have a shot at this, especially not being from here etc.

I suddenly feel so settled, love my job and things just seem to be falling into place now, still get lonely at times and sad about how things turned out but I fully intend to make the most of things now! Anyways, just wanted to share the good news!
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Old Jul 23rd 2004, 1:22 am
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Default Re: Wonderful news!

[QUOTE]Originally posted by sunflwrgrl13
Is the drug you're going to take called Copaxone (sp?)? QUOTE]

Hi there, its actually Avonex and Biogen is the company who have the access program. Copaxone was mentioned also as I think they have a program too but that was the one my doctor prescribed so I just went with it - I suppose its a trade off on the once a week thing as its an intra muscular shot with a pretty large needle, they are delivering it tomorrow so I will soon find out LOL. Two of my friends from work are getting trained on how to do it too, so if I can't do it myself they will be on hand, but I'm sure I will. Do you find that you just get the flu symptoms for a day or so after the injection? I suppose its different with everyone but they told me to do the first time on a Friday so I have 2 days off work as the first time it can be worse - but I suppose everyone is different.

I actually feel absolutely fine right now - the last week or so I have had no tripping incidents (now is that because I haven't been drinking hee hee ) and I can feel my legs again LOL.

Sounds like you are doing pretty good as well - its encouraging to hear, thanks for responding and I will check out that link. Take care
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Old Jul 23rd 2004, 1:25 am
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Originally posted by lairdside
Wonderful news.

I believe that sometimes the reason we do something isn't the reason we are really doing something afterall, it's just life's way of setting the stage for something else
Makes you wonder doesn't it. I have never been big on religion as you know, but all this really got me thinking - in a lot of ways it seems I was meant to be here, who knows. It even turned out that the pharmacy that dispatches the thing is about 5 mins from my apartment!

Hope things are going well with you!
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Old Jul 23rd 2004, 1:32 am
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Originally posted by Lion in Winter

Now, how are those bugs coming along?
Bugs be all dead and gone.

Exterminator man came out and sprayed twice and so far so good! He thinks they were coming in through the AC after the big storm. Hmmm not sure about that but all I know is they be gone - >>>touching wood
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Old Jul 23rd 2004, 4:32 pm
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Default Re: Wonderful news!

Ahh! Avonex! I couldn't remember which drug Biogen manufactured (can never keep 'em straight in my head). Everybody is different in what side effects they have, and how long they last, but I can tell you about mine. I take my shot at night, right before bed. I usually take 2 Aleve, or Tylenol as well. This helps alleviate the flu-like symptoms during the night. If I happen to get them anyways, usually I just have aches and pains in my leg muscles and I either shiver with cold or sweat like I have a fever. If this happens I usually wake up and go take another Tylenol or Aleve to get rid of the symptoms. Then when I wake up in the morning, I'm usually fine with no problems.

I've continued to take the shots myself, even though my first episode was over 3 years ago, and I've been (mostly) symptom free for over 2 years. I'm hoping this stuff will help keep me healthy as long as possible! When I first got sick, I can't remember how many walls I ran into, or how many times I dropped stuff (no motor control in hand). Told my friends I was having all the ugliness of a hangover without any of the fun!

Take care and good luck today!
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