Hello everyone ,
I was recently diagnosed with MS , i was on solu medrol for 5 days , and now my doctor gave me 2 options for the next treatment, Tecfidera (dimethyl fumarate) or Avonex pen (injection) , has anyone used either? And what do you recommend?
Thank you
TECFIDERA Pills or AVONEX PEN
Re: TECFIDERA Pills or AVONEX PEN
Hi,
I did take Avonex, a long time ago, for 10 years and it was quite difficult to manage. It may have made a difference but I don't really know. They say it produces mild flu like symptoms but mine were rigors, sweats, thumping heart, chattering teeth and terrible aches the first few times. It then settled down to regular three day post injection aches and booming head aches. I never really got used to it but I did try it. After 10 years I stopped it. It's 11 years years since I have used it now.
Tecfedira was introduced after a bad attack in 2014. I didn't handle it at all well and gave up after a month. It may have been doing nothing useful or it may not have been in my system sufficiently. Two visits by the ambulance was enough for me and I was better when I stopped taking it.
Avonex is interferon. That's a signalling agent to alert the immune system to do something. They used to include a leaflet when it was first released which boasted it had 1m units of antiviral activity. They don't do that anymore.
Tecfedira is a compound based on an old anti-psoriasis drug. I'm not sure they have a good understanding of how it works. It can also cause a serious, fatal activation of a common virus called JCV which causes Progressive multifocal leukoencephalopathy (or PML). You should be tested for JCV before you attempt Tecfedira. Most aren't because they say it's rare. Collecting data is rare too.
I don't take any blockbuster drugs at all these days and doubt I will ever again. Each of us is a little different but there are more choices than just two in this game.
I am also very well again.
Regards,
I did take Avonex, a long time ago, for 10 years and it was quite difficult to manage. It may have made a difference but I don't really know. They say it produces mild flu like symptoms but mine were rigors, sweats, thumping heart, chattering teeth and terrible aches the first few times. It then settled down to regular three day post injection aches and booming head aches. I never really got used to it but I did try it. After 10 years I stopped it. It's 11 years years since I have used it now.
Tecfedira was introduced after a bad attack in 2014. I didn't handle it at all well and gave up after a month. It may have been doing nothing useful or it may not have been in my system sufficiently. Two visits by the ambulance was enough for me and I was better when I stopped taking it.
Avonex is interferon. That's a signalling agent to alert the immune system to do something. They used to include a leaflet when it was first released which boasted it had 1m units of antiviral activity. They don't do that anymore.
Tecfedira is a compound based on an old anti-psoriasis drug. I'm not sure they have a good understanding of how it works. It can also cause a serious, fatal activation of a common virus called JCV which causes Progressive multifocal leukoencephalopathy (or PML). You should be tested for JCV before you attempt Tecfedira. Most aren't because they say it's rare. Collecting data is rare too.
I don't take any blockbuster drugs at all these days and doubt I will ever again. Each of us is a little different but there are more choices than just two in this game.
I am also very well again.
Regards,
Re: TECFIDERA Pills or AVONEX PEN
Thank you scott1 , am a flight attendant, and am consulting my aviation doctor on which is better to use as i'll be flying .
Re: TECFIDERA Pills or AVONEX PEN
Hi,
Remember the JCV issue.
If you really want to make this a choice of these two, Avonex is well known for the so called "mild flu like symptoms". I wouldn't like to fly in the day or two after it.
They are not the only choices. There is also no guarantee they will help. A regular sleeping pattern does help.
Regards,
Remember the JCV issue.
If you really want to make this a choice of these two, Avonex is well known for the so called "mild flu like symptoms". I wouldn't like to fly in the day or two after it.
They are not the only choices. There is also no guarantee they will help. A regular sleeping pattern does help.
Regards,
Re: TECFIDERA Pills or AVONEX PEN
I concur with Scott's experience with Avonex. I too was on it for about 10 years. My initial side effects were quite bad. My first shot left me with a high fever, sweating and watching the color blobs on my bedroom ceiling. I was essentially down for the count for about 24 hours. I called my doctor's nurse and they suggested using ibuprofen to counteract the side effects. This helped a great deal, but even after several years, the side effects would leave me run down for the entire weekend.
Regarding Tecfidera, many people have reported stomach problems with it. I suggest that you read the posts in the Tecfidera forum. http://www.thisisms.com/forum/tecfidera ... marate-f52 Tecfidera, or dimethylfumarate, is a strong oxidizing agent that attacks thiol groups. By doing so, it is believed to activate cellular defense mechanisms via the Nrf2 pathway. Much has been posted on this proposed mechanism. I suggest doing some searches of the forum. Tecfidera also causes depletion of white blood cells, e.g., lymphopenia. It's this activity that exposes patients to the risk of developing PML.
Regarding Tecfidera, many people have reported stomach problems with it. I suggest that you read the posts in the Tecfidera forum. http://www.thisisms.com/forum/tecfidera ... marate-f52 Tecfidera, or dimethylfumarate, is a strong oxidizing agent that attacks thiol groups. By doing so, it is believed to activate cellular defense mechanisms via the Nrf2 pathway. Much has been posted on this proposed mechanism. I suggest doing some searches of the forum. Tecfidera also causes depletion of white blood cells, e.g., lymphopenia. It's this activity that exposes patients to the risk of developing PML.