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**byhookorbycrook** · 19-01-2012, 22:25

Hope it goes well for her, Fergal.

Friends · 20-01-2012, 03:06

Hi i wondered how your wife got on I did think funding had been released yet? My mum is on no medication at the moment and really hoping that it will be sorted out soon before she has a relapse as she can feel herself slipping

**fergal.b** · 20-01-2012, 10:05

Hi Shivs85 I don't think the funding is released yet but the company are giving out what I think is called compassionate amounts of the drug to the four people starting on thursday. My wife was having very bad side effects from rebif and then avonex and had to be taken off it so I guess it was just luck "if I can call it that" that she was put forward for it.
I did hear that the funding should be there with in the next few months so hopefully your mum will get sorted soon.

Best wishes.

.

femur61 · 21-01-2012, 07:22

http://health.yahoo.net/news/s/ap/no...fter-11-deaths

This is prob scaremongering but this has been just relised so let them know that you are aware of the latest updates.

I take betaferon and have been on it for 11 years no problems but also follow a very strict diet. There is a huge amount of infomation on the net if you are interested I can email you the websites. One is the Best Bet Diet which a group from the UK who follow a gluten, milk free diet and wheat free diet. Dermot O Connor is an Irish guy who wrote a book last year on alternative strategies for someone with MS

IM0 · 23-01-2012, 17:50

Quote:

Originally Posted by femur61

http://health.yahoo.net/news/s/ap/no...fter-11-deaths

This is prob scaremongering but this has been just relised so let them know that you are aware of the latest updates.

thats about the same number as tysabri, and its brand new! and tysabri has been around on and off for over a decade and is very strictly monitored and controlled now. Id say go with tysabri, its proven and tested and only a TINY TINY % of people develop the PML complications. this is all based on that article you liked to published on friday gone

**fergal.b** · 23-01-2012, 18:04

Well we got the call today that the trial for thursday has now been put off till further notice

**byhookorbycrook** · 23-01-2012, 18:35

Pity, but to be expected, I suppose.

hdunne · 13-02-2012, 20:33

I'm hoping to get the tablet next month on compassionate grounds, is anyone else taking the tablet or have any experience?

**byhookorbycrook** · 13-02-2012, 23:24

Was talking to my neuro, she says that the heart deaths were in people with heart problems to a greater extent and that there should be no reason for it not being made available(bar cost)

**fergal.b** · 13-02-2012, 23:48

We are still waiting on word back.

bizmark · 14-02-2012, 19:34

Is this dead in the water ? i was hopeing to be consider for this as iv had a horrible few months on rebif and i cant imagen avonex being any better for me considering its the same type of medicine have to say though the side effects and news about these pills and my experience with the injections are putting me off trying any of these so called treatments again

**byhookorbycrook** · 14-02-2012, 23:47

Bizmark, have you considered tysabri?

bizmark · 15-02-2012, 09:45

I have seems the only real option i have though once a month at the docs is both convenient and a giant pain in terms of going anywhere for any amount of time (holidays and such)

**byhookorbycrook** · 15-02-2012, 18:56

Biz, I missed one or two last year due to (unrelated) illness, so you could miss if you really had to. Haven't relapsed since I started in 2009 and no changes in my scans either.

bizmark · 15-02-2012, 20:09

you would recommend it then? how do you generally feel after the infusion ?

20-01-2012, 03:06	#17
Shivs85 Guest Posts: n/a Adverts \| Friends	I just wondered.... Hi i wondered how your wife got on I did think funding had been released yet? My mum is on no medication at the moment and really hoping that it will be sorted out soon before she has a relapse as she can feel herself slipping

21-01-2012, 07:22	#19
femur61 Registered User Join Date: Jan 2009 Posts: 1,319 Adverts \| Friends	http://health.yahoo.net/news/s/ap/no...fter-11-deaths This is prob scaremongering but this has been just relised so let them know that you are aware of the latest updates. I take betaferon and have been on it for 11 years no problems but also follow a very strict diet. There is a huge amount of infomation on the net if you are interested I can email you the websites. One is the Best Bet Diet which a group from the UK who follow a gluten, milk free diet and wheat free diet. Dermot O Connor is an Irish guy who wrote a book last year on alternative strategies for someone with MS Last edited by femur61; 21-01-2012 at 07:26.

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19-01-2012, 22:25	#16
byhookorbycrook Moderator Join Date: Aug 2008 Posts: 5,098 Adverts \| Friends Mod: Carlow, Primary & Pre School	Hope it goes well for her, Fergal.

20-01-2012, 10:05	#18
fergal.b Moderator Join Date: Jul 2010 Location: Balrothery,Co Dublin Posts: 2,473 Adverts \| Friends Mod: Sailing & Boating	Hi Shivs85 I don't think the funding is released yet but the company are giving out what I think is called compassionate amounts of the drug to the four people starting on thursday. My wife was having very bad side effects from rebif and then avonex and had to be taken off it so I guess it was just luck "if I can call it that" that she was put forward for it. I did hear that the funding should be there with in the next few months so hopefully your mum will get sorted soon. Best wishes. .

23-01-2012, 18:04	#21
fergal.b Moderator Join Date: Jul 2010 Location: Balrothery,Co Dublin Posts: 2,473 Adverts \| Friends Mod: Sailing & Boating	Well we got the call today that the trial for thursday has now been put off till further notice

23-01-2012, 18:35	#22
byhookorbycrook Moderator Join Date: Aug 2008 Posts: 5,098 Adverts \| Friends Mod: Carlow, Primary & Pre School	Pity, but to be expected, I suppose.

13-02-2012, 20:33	#23
hdunne Registered User Join Date: May 2008 Location: Dublin Posts: 73 Adverts \| Friends	I'm hoping to get the tablet next month on compassionate grounds, is anyone else taking the tablet or have any experience?

13-02-2012, 23:24	#24
byhookorbycrook Moderator Join Date: Aug 2008 Posts: 5,098 Adverts \| Friends Mod: Carlow, Primary & Pre School	Was talking to my neuro, she says that the heart deaths were in people with heart problems to a greater extent and that there should be no reason for it not being made available(bar cost)

13-02-2012, 23:48	#25
fergal.b Moderator Join Date: Jul 2010 Location: Balrothery,Co Dublin Posts: 2,473 Adverts \| Friends Mod: Sailing & Boating	We are still waiting on word back.

14-02-2012, 19:34	#26
bizmark Registered User Join Date: Feb 2003 Location: cork city Posts: 6,526 Adverts \| Friends	Is this dead in the water ? i was hopeing to be consider for this as iv had a horrible few months on rebif and i cant imagen avonex being any better for me considering its the same type of medicine have to say though the side effects and news about these pills and my experience with the injections are putting me off trying any of these so called treatments again

14-02-2012, 23:47	#27
byhookorbycrook Moderator Join Date: Aug 2008 Posts: 5,098 Adverts \| Friends Mod: Carlow, Primary & Pre School	Bizmark, have you considered tysabri?

15-02-2012, 09:45	#28
bizmark Registered User Join Date: Feb 2003 Location: cork city Posts: 6,526 Adverts \| Friends	I have seems the only real option i have though once a month at the docs is both convenient and a giant pain in terms of going anywhere for any amount of time (holidays and such)

15-02-2012, 18:56	#29
byhookorbycrook Moderator Join Date: Aug 2008 Posts: 5,098 Adverts \| Friends Mod: Carlow, Primary & Pre School	Biz, I missed one or two last year due to (unrelated) illness, so you could miss if you really had to. Haven't relapsed since I started in 2009 and no changes in my scans either.

15-02-2012, 20:09	#30
bizmark Registered User Join Date: Feb 2003 Location: cork city Posts: 6,526 Adverts \| Friends	you would recommend it then? how do you generally feel after the infusion ?