MY neuro feels I may have run the course with Avonex and now want me to consider this drug. I've had all th blood work and all has checked out well to pursue but I'm on the fence. Just need more people to discuss this with me. I'm 56 years old male and feel unsure. Is their people with phone numbers to call and discuss this drug with?
I've had MS for 15 years. I've neen taking Avonex for the past12 years, thinking about Tysabri?
- Posted:
- 6 Nov 2011 by paulgolfnut
- Topics:
- avonex, tysabri, multiple sclerosis
Responses (4)
6 Nov 2011
Hello Paul.
I was diagnosed 16 years ago. Avonex was the first DMT that was prescribed. The drug was performing well until 2008 (about 13 years after 1st IM injection). Started having problems with mobility (drop foot and left side spasticity). After review of different DMT's with neurologist, we decided to go with Tysabri. One regret I have is the length of time it took to reach the conclusion that my body had developed a natural resistance to the interferon. So whatever symptoms I had prior to Tysabri, continue to date.
The other regret? No cure!!
I am not sure what the DMT is that your doctor is considering. If Avonex is not working as it should for you, then seriously consider a switch.
Sarina
6 Nov 2011
Hi I'm I've been n the avonex for 2months is that one the med they want to put you on? Cause they do have a 24 hr nurse to call and a support website you can go on. Its nice to meet you I have had ms for over 8 years just finally got diagnosed 2 years ago. I hope it works out well for you. Jaime
Hi paul srry about that maybe I should take more time reading before answering. I just sot out of the hosp last month I had a really bad attack 5 day steroid drip. I'm a 35 year old female fighting bad symptoms of ms for 8yrs I already have the foot drop alsoo the whole time, problems with vision,bowls,urine lots more. My dr at first said he was gonna start me on tybari then started me on avonex. D you think the avnex worked for you? I hate taking avonex so far I have aweful side effects fr 2 days. I take pain meds now and my pain increases like 10 times more with the shts for 2 days. Id like to talk to you all more about how your symptoms are and what you do for them. Your friend jaime}litlmommag
6 Nov 2011
Hi, I am on tysabri in my 8th IV Therapy. I was diagnosed in 2005 after years of symptoms. I also first started on Avonex and it helped with the flare-ups but after a few years I developed an antibody to the avonex. I started tysabri in May after enrolling in the tysabri Touch Program. My neurologist suggested I use this protocol because of the added safety. I do not regret it one bit even though my fatigue and pain are still there, I am able now to do more of my daily living without restrictions. Do some investigating on your own under Tysabri Touch Program and it will direct you to a site in your area.
I have not had a flare-up since May where as before I would have a few each year that were so debilitating. One good piece of advise I could give you is each flare-up even though treated still leaves more damage than before. I hope I helped and I am willing to answer more of your questions. I live in the pocono region of NE Pa. so I travel to the univ of penn touch program.
7 Nov 2011
Hi this is probably not the response your looking for but I was in your position a little while back, about going on Tysabri and the one thing I couldn't get my head around was the possibility of getting the brain infection. But because my blood work came back positive the decision was taken out of my hands, which now I am so glad. But because of this we tried the only other medication for me which was Gilenya. Which I ended up being admitted into the hospital because of a bad reaction 2hrs into taking the first tablet. So i am not sure what is going to happen when I see the doctor this Wednesday because it is clear I need to be on something but what we shall see. I feel for you having to make this decision it is a tough one to make, but you have to make that final decision yourself, but I am sure you will make the right one. Good luck!!
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Thanks Sarina! I appreciate your response. Tysabri is the drug they are recommending. I have had several attacks over the years. Each time I loose a little something. Each time I take the 3 day prednisone drip and get the attack to relax to some degree, but not all. Just have some heavy consideration and appreciate your comments! Thanks you!!