Stopping Avonex

by Pam Ball
(Los Angeles, CA)

- What can happen?



I was officially diagnosed with MS when I was 47. I started Avonex one year later. I have been taking it regularly ever since. I have a mild form of relapsing-remitting MS.

Only two exacerbations in 18 years. None recently. I am turning 65. My new health plan will be charging me over $800/mo for Avonex. Being on a fixed income and only working part-time, obviously cannot afford it. No help from the State of CA as I am not broke enough!? So will stop taking it.

Question: Has anyone in my age range stopped taking it and has done OK?



Reply:

Hi Pam,

I don't have MS and haven't heard of your specific situation before, but I have heard of MSers whose MS has leveled out by the time they reach your age. This is whether or not they are taking medication or not.

Alternately, if you are not comfortable discontinuing all multiple sclerosis medicines, try contacting the company's financial department. They can sometimes help when patients can no longer afford their medicine.

Here is the page with information on their financial assistance services - (this will open in a new window).

I'd also be interested to know if any others are in a similar situation or were and what happened. If this has happened to you, please be sure and leave a comment.

Another suggestion - there are several alternative multiple sclerosis treatments that have proven successful for MSers. One that my husband takes is LDN (low-dose-naltrexone).

You need a doctors prescription and it can only be filled at a compounding pharmacy, but it's very inexpensive. (At least when compared to your present medicine costs.)

It is currently being studied for people with this condition, so eventually it may be covered by your insurance. In the meanwhile, it only costs a little over $30 dollars a month.

Some have had difficulty getting the prescription from their doctors, but this has gotten a little better since the studies. There are a few places online where you can get the medicine as well.

If you haven't researched this option before, here are a couple websites. (They will all open in a new window.)

LDN and MS


LDN Science

Hope this helps,

Akrista




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Jun 13, 2012
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Yes, Avonex Does Have Financial Assistance
by: Susan

Hi there,

I do know that Avonex, as well as the other injectible medications for MS, all have financial assistance. If you contact the company, Biogen Idec I believe it is for Avonex, they can mail you out the forms to file.

Akrista is right also that most people in your age group have leveled off and are not taking the shots anymore. I am a support group leader and out of the many people who are over 60 in my group, only one is still taking medication, which in her case, is Copaxone.

You should probably ask your doctor what they think also if you aren't comfortable going without.

Good Luck:)

Jul 11, 2012
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Thank you Jesus!
by: Anonymous

I was taken Avonex for about a year with terrible side effects! So I told my doctor NO MORE!!!!! Been off it for about 2 years now - no meds. Just trusting God!! And feeling great!!!!!!!!!!Thank you Jesus!

Jul 22, 2012
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Help paying for meds.
by: Tina

I have MS. I was diagnosed in 1998. I was on Avonex also, but exacerbations continued. I am now on Gilenya (pill). Avonex is expensive. You can go to the MS website and I believe it tells you there, But I got my meds for $25.00 a month through Biogen. Check that out and see if it helps you. God Bless and Keep you.

Tina





Apr 17, 2016
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same boat.4-2016
by: Theresa

Hey Pam, not sure of the date you posted this, but I am in a similar boat. I've been on Avonex for almost 19 yrs. I've had zero relapses, to my knowledge, but I did get a mild case of shingles last August. (They say not related.)

I'm a new triathlete who just completed her 1st full ironman, so you know I'm active and already watch the diet.

United Health Care and the so called affordable care act is anything but. I went to order my medication last Saturday and I was informed that Avonex is now a tier III medication and I'm to pay 20%. They wanted $1325.00 a month.

I tried to apply for assistance but since I work full time, I make too much money. So I'm on week one of no Avonex. I work with a great and supportive DO, who had changed up my supplements, changed up my diet. There is financial assistance for people out there in your shoes, just not mine.

I'm still on the fence on options - fear says stay on it and faith says you will be fine just supplementing. I've had this conversation many times about wanting to get off this poison. Now is the time with a little help from my government. Hey, let me know how it goes for you.

Theresa, soon to be 50

Jun 18, 2016
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Me too
by: Pam

Hi, Pam -- I just went on Medicare and also found out the price for Avonex was going to increase by 6 times. So I am so glad to read that people my age, 65, are feeling their MS is feeling off. I will have to try and test it since I can no longer afford it. I look forward to reading others responses. Thanks

Nov 03, 2016
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Avonex
by: Mike

I have been on interferons for 22 years. Beta Seron for about five years then Avonex for about 17 years. Avonex is definitely an easier life choice.

I too will turn 65 this January. My neurologist suggested I reduce my Avonex injections from once a week to every other week. Obviously I am nervous.

Not sure if Medicare covers Avonex. I have been researching it for a couple of weeks. The latest advice I got is that it does. How much is the copay that I do not know yet.

Feb 14, 2017
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Discontinuing Avonex
by: Anonymous

I'm 71 years old and have had RRMS since 1969.....a very long time!!! My neurologist has given me the option of quitting the Avonex injections, stating that I most likely have been in the secondary progressive stage because of my age and number of years diagnosed. I was not having any new symptoms, just more cognitive issues, not physical.

I was still frightened about stopping the injections, afraid of more lesions and possible disability. After a second opinion, I stopped taking the drug just before Christmas. I was getting the entire cost covered by Medicare and Bluecross Medigap because I would receive the injection at the hospital in the IV clinic. I had been doing this for several years.

To give it to myself at home would have cost me an unaffordable copay. So, I will just have to continue feeling scared about being off of it, and hope for no relapses or slow progression of symptoms. I would probably not be able to get back on it, and have it covered by Medicare again.

Hope this decision of mine will be helpful to those of you hoping to do the same. God Bless all of you living with this disease.......

Jul 27, 2017
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I stopped avonex after 19 years use.
by: Chuck

I am now 67 and stopped Avonex at 66. Medicare was not a good program for coverage. The VA said to stop because I had no serious relapses for 19 years, so the treatment must have been successful, but how to gauge when to stop?

Civilian doctor said stay on it but medicare made it difficult so I quit. Since I stopped they now say I have secondary progressive MS. Now I do not feel any better not taking Avonex than I did when I was taking it. After stopping it took me about 3 months to feel somewhat normal again.

During the 3 months I had less endurance and was feeling like a minor exacerbation was just around the corner, felt very off and somewhat anxious about the decision to stop. Now life is OK but I am older with less energy due to age & MS, but no significant disability.

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