Didn't work for me

A board to discuss the Multiple Sclerosis modifying drug Avonex

Didn't work for me

Postby MM » Tue Jan 06, 2004 9:05 am

I was diagnosed with MS in Feb of '97. I started Avonex then and had Solumedrol steroids due to Optic Neuritis. I got better quickly. One year later, same thing. Three months later, same thing. By Nov '99 I knew that my treatment was getting me nowhere, so I discontinued the Avonex. I have been in a wheelchair since then with many degrading symptoms. I have been on my own as far as treatment goes. You name it, I have tried it (except for chemo/stem cell type of treatments). I knew from the beginning that I had the worst form of MS. I felt it in my gut. I wish had known about Naltrexone at that point. Finally, I feel as if I am holding my own. People, listen to your bodies!! Don't wait until the progression is so far out of control! Take charge of your own health, and spread the word about Naltrexone. It is criminal that this isn't the first line of defense! (At least for PPMS - there is no time to waste)

MM
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Postby maybelater » Thu Jan 08, 2004 2:10 pm

I am taking Avonex, don't have much input as to the effectiveness for I've only had 10 injections.

I do still get PRETTY sick for 2 or 3 days after the injection, hopefully this will end soon.

I like the once weekly injection, I don't like the side effects.
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Postby fightingms » Thu Jan 15, 2004 6:14 am

I have been on Avonex since Aug of 99. After my DX I did not have a major relapse that required steroids or loss of work until Nov. of 2002.

I would say Avonex works for me. I do not get the bad flu like side effects most get with the interferons. I did for the first maybe 2 months......then nothing. After the pre-filled injections came out I sometimes got body aches and fatigue....maybe for about 5 shots. Thankfully now back to no side effects....can take it any time ....any day......forget to take ibuprofen.......and nothing happens.......YEA!

I wish everyone on interferons had my luck. Take care.......Kim
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switched to rebif b/c of study results

Postby VirtuallyFine » Wed Mar 10, 2004 5:40 pm

I was in a controlled study comparing rebif to avonex....the results were released and due to the better performance of Rebif I decided to switch. Keep in mind some things though...Avonex is once a week - Rebif is three times a week - so I we get 3X the dose of the interferon with Rebif...which quiet possibly accounts for the better performance. My first question was "Since I have not had a flare up while on Avonex, do I need to switch?" The answer was, if it is working, no need to switch. I had to consider the silent symptoms that add up over time to be audible symptoms, and decided that I wanted to do as much as I could as soon as I could to prevent disability, and I also believe there will be a cure - so I want as much of my facilities in place as possible! If Avonex was available in 3X dose I would have probably stayed with the product, but it isn't, so I switched to Rebif....
< March 20, 2004 = I want my life back *sigh*
> March 20, 2004 = ...day one on alertec = getting my life back? *grin*
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Postby dawny » Thu Mar 11, 2004 10:37 am

I started on Avonex and switch after year and 4 months. My ms doctor told me to consider Rebif because if I have active lesions he would like for me to switch. Well my husband decided that he could give me the shot with the auto injector and then we wouldn't have to rely on my sister. I didn't like the rebif at first but as time goes on it is not that bad. But, after I went on the Rebif I went into an relapse I'm hoping I'm at the end of it. While on Avonex I did really good. Just a few side effects not bad. It would be nice if everyone could be like that. Rebif I have no side effects. Dawn
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Avonex/Naltrexone

Postby SammyJo » Tue Mar 16, 2004 11:13 am

In response to MM's post, I doing everything I can to spread the word about Naltrexone! Please help by sending this Naltrexone survey link to anyone with MS:

http://www.createsurvey.com/cgi-bin/gra ... 8&m=iOuiQy

Majority are reporting great results, in compact format where the numbers tell the story. There is also a link on the page to the National Institutes of Health - they are accepting public input - tell them to study Naltrexone. I am still taking Avonex & Neurontin (for stiffness) with 4.0mg of LDN, figure throw everything at it I can. But the LDN made immediate improvements in my symptoms, almost like Solumedrol (without the hyper rush then crash). I was looking forward to trying Antegren, but I don’t have any veins left for IV after 1 yr on Novantrone. So I am very glad to have LDN to arrest the progress. Now if we can just get a real trial, to prove we aren’t all having a mass placebo effect hallucination!
Samantha
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Postby fightingms » Fri Mar 19, 2004 7:40 am

Samantha....I thought you could not take Avonex with LDN. That is what everyone told me.......Kim
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Postby SammyJo » Sun Mar 21, 2004 8:00 pm

Kim,
I haven't read any strong warnings about combining LDN w/ ABC's, but have read the theories that LDN regulates the immune system back towards normal, while Avonex et al supress it, and so counteract each other. But w/o trials, this is only theory, and as long as I'm getting the positive LDN results, I'm not willing to take the chance and scrap Avonex.

Has anyone quit an ABC drug because LDN is working well?
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Postby fightingms » Mon Mar 22, 2004 4:22 am

Thanks Sammy Joe.....Nice to know. I did not want to go off Avonex to start LDN.......everyone said you should.......so that is why I never tried it. Now I am getting involved in the Avonex combination trial study....Avonex...Methotrexate...and some get pulse steroids.

Thanks for the info about the Avonex and LDN....it is good to know,.....Kim
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My third Avenox shot.

Postby wilson » Sun Apr 18, 2004 9:32 pm

Tonight was my third Avenox shot. The shot really is not that bad. Side effects are the real worry. It is like having the flu every week. I can't say that I am not concerned about going through these side effects. It is my first time for taking a serious, hard medication. After reading posts about Avenox, I am starting to have some doubts about its effetiveness. If you would take a random sample of 30 responses about Avenox, and throw out five positive responses and five negative responses, you would have a typical sample. Unfortunately for Avenox users, there would only be a few positive responses and the rest negative/or no comment.

For Naltrexone (LDN) users, using the same sample equation, you would have almost all positive responses and one or two negative/non plus responses.

Does that seem possible? Where is the news about LDN? Why is it not part of the options from the neuro? Is this an X file? :?:
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Postby fightingms » Mon Apr 19, 2004 5:47 am

Wilson, I beg to differ with you. Many who are doing very well on Avonex do not bother to go to online groups...why would they. For over three and a half years while I was on Avonex and never had a major relapse....I never bothered to check out the many online groups that are out there.

After a pretty major relapse in Nov. of 2002 I didn't work for 6 months I had all the time in the world to check out the online groups. Now I am back to working two jobs and barely have time to check in with my few groups in the am before work.

Just my two cents. Be well........Kim
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Avenox

Postby hopeless » Sun May 02, 2004 7:06 am

I was recently diagnosed and as per my doctors suggestion I agreed to sign up for Avenox. Unfortunately my health insurance doesn't cover for the medication and I can't afford to pay $1200/month to cover the cost. Any idea what I need to do? Unfortunately with all the debt and mortgage payment I will never be able to pay 15k/yr out of pocket cost for Aveonax. I am only 31 and don't think it is fair to give up in life so soon.

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Postby wilson » Sun May 02, 2004 8:44 am

Dear Hopeless,

I am sorry about your health insurance not covering Avenox. It is a shame what the insurance and drug companies are doing to people. It is all about money. I too was recently diagnosed and I am fortunate to be covered.

I am currently taking Avenox and having some doubts about the drug. The side effects are awful and the gain you get with the current ABCR drugs is very modest. Perhaps you are not missing out much by not taking them.

There is an alternative drug that is very cheap (about $20-$30 month). Some people "rave" about it and think it is the best treatment for MS. It is called Naltrexone or "LDN". You can find additional postings on this site about LDN. Be careful, though. Some postings is very biased towards the drug and they think it is the only alternative. Perhaps there is more.

I hope you take the time to do some research.

Hopefully, we can change your call sign from "Hopeless" to "Hopeful"

Tim
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Postby Shayk » Sun May 02, 2004 10:22 am

Hopeless

Please don't give up yet. While treatment outcomes are far from ideal for those of us with MS, they offer something for some people, it all seems so individualized.

The drug companies have programs to help people with securing these medications. I'd recommend giving MS Active Source (Avonex folks) a call at 1-800-456-2255; your local MS Society a call, and check out the MS Support group postings on Web MD.

Just in the last day or two someone posted a long list of ways to get help with meds.

Good luck to you.

Sharon
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