Starting Avonex within a month

A board to discuss the Multiple Sclerosis modifying drug Avonex

Starting Avonex within a month

Postby Tbone » Mon Jul 02, 2007 1:36 pm

Hello everyone, I will be starting Avonex pre-filled injections very soon. I've read every single post in the forums about avonex, but I have a few questions...

I wonder mostly about what is going on between the 24/48 hr side effects and the next shot. I have had 2 relapses since my first symptoms began 5 months ago, but I still have quite a bit of mobility. My body went numb from my left foot upwards, jumped legs and then spread up my hips to my upper body below my pectorals (this was in January to february 2007). 95% of the numbing had left after 8 weeks... Then on April 20th my left hand and forearm have gone numb and I still experience this till today (July 02, 2007).

Will I be able to maintain a 5 day work schedule? Will I be able to go for walks with my girlfriend? Can I play tennis (with the arm that isn't numb)...

Tell you the truth, I dont even know what Im expecting as replies. Honestly anything will be good. Im just hoping that people taking this drug will tell me how Avonex has allowed them to maintain, or better yet, improve their lives.

Anything is welcomed, even if Avonex has done the opposite, any personal stories are appreciated.

Thank you all,
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Re: Starting Avonex within a month

Postby NHE » Tue Jul 03, 2007 4:18 am

Tbone wrote:Will I be able to maintain a 5 day work schedule?

I've been on Avonex for nearly 7 years. Even in the beginning when the side effects were at their worst, I found that by injecting on Friday I was usually OK by Sunday and ready to start my week again on Monday. As you may have read in my earlier posts, the first injection was the worst and I found ibuprofen to be much more effective than tylenol at blocking the side effects. More recently, I've found that I can take much less ibuprofen and I usually don't feel the side effects for about 4 -5 hours after the shot and I'm a little run down and tired the next day.
Will I be able to go for walks with my girlfriend?

By all means, please do... :wink:
Can I play tennis (with the arm that isn't numb)...

I believe in doing as much as you can. Exercise has been shown to be neuroprotective. Here are a couple of links to some of my prior posts on this topic. The effect of exercise on hippocampal integrity and Fred H. Gage's research at the Salk Institute.
Tell you the truth, I dont even know what Im expecting as replies. Honestly anything will be good. Im just hoping that people taking this drug will tell me how Avonex has allowed them to maintain, or better yet, improve their lives.

I believe that it would be difficult for any one person to really know what difference Avonex has made for them. I make this statement based on the relapse remitting nature of the disease. It is difficult to know if one is in a naturally occurring remitting phase or if some treatment is having an effect. For example, I had my first symptoms 8 years before I was diagnosed. During that time I was completely symptom free. However, had I been diagnosed and had I taken some treatment then it might have been reasonable for me to believe that the treatment was really helping me. This is why phase 3 studies for candidate treatments need to include many patients in the trial. Hopefully, by examining a large number of people it will be possible to weed out the real effects of a treatment as opposed to the natural remission of the disease.

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Postby syckbastid » Tue Jul 03, 2007 6:23 am

I took Avonex for a year, but stopped because I it gave me headaches, killed my weekend, and made a little depressed. I was 26 at the time, and regardless of the side-effects, I was able to lead a relatively normal life. I excercised, hung out with my girlfriend (now my wife), and worked 5 days a week (most of the time).

There is a multitude of information regarding vitamins/supplements, which help improve overall health, and thus help you tolerate the shot better.

Expect the worst the first shot, but it will get easier. I'm don't know your position on marijuauna, but it works way better than anything else for side-effect management.
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Thanks

Postby Tbone » Fri Jul 06, 2007 3:35 pm

Hey,

I really appreciate the replies... I guess its a "wait and see" situation im facing.

I wish you all the best,

Ted
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Postby jackD » Thu Jul 12, 2007 1:59 pm

It is my understanding this Avonex could initally make things worse.

There is an initial reaction to the Iterferon Beta that could trigger a relapse.

Also Avonex is not very effective when you are having a relapse. This is because of the high levels of MMP-9s during these times.

After about 6 months the real positive effects of the Avonex will be produced and could then expect some long term befefit.

I use some EMLA cream to numb the injection area.

Good luck and read my posting on "How to MAXIMIZE Interferon Beta".

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Going into 4th month

Postby Tbone » Tue Nov 06, 2007 9:02 pm

Well, so far so good. The past few months have been an experience. I haven't had the worst course of side-effects. Other than 2 injection nights where I temporarily got the chills/shaking/chattering I have been I think pretty fortunate. I get pretty tired for about 24 hours and I could sleep all day following the shot. Headaches and arthritis like feelings in all my joints are there every shot.

Im curious to see how the airline authorities are going to respond when I pack my needles to take on board with me over the holidays when I go visit my brother and his family in Dubai... Actually, anyone have any suggestions on the best way to pack this stuff up for a 21 hour travel?

Thanks,
Ted
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Re: Starting Avonex within a month

Postby NHE » Tue Nov 06, 2007 9:53 pm

Tbone wrote:Actually, anyone have any suggestions on the best way to pack this stuff up for a 21 hour travel?

Are these the prefilled syringes or the dry powdered form?

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Postby Tbone » Tue Nov 06, 2007 9:57 pm

They are the prefilled... I actually discovered a product called a FRIO cooler that is recommended for insulin. Im thinking this is what i may go with unless you or anyone has any other suggestions.

I also ordered through e-bay a battery packed cooler, but im not so sure i will use it. The frio cooler seems really good (no battery, ice packs...)

Thanks
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Re: Starting Avonex within a month

Postby NHE » Tue Nov 06, 2007 11:00 pm

Yes, you'll need some way of keeping the Avonex cool especially with the prefilled syringes. The Prescribing Information states that they need to be used within 12 hours after being removed from refrigeration. I use the powdered form so I haven't had to deal with this problem. However, the medication is shipped to me with some gel packs which stay frozen for about 18-24 hours if kept in an insulated container. These are labeled "Koolit Gel Packs" brand or "Moisture-Guard Polar Pack" brand. In general, I've found that it helps to put my cooler in the freezer to precool it before I use it so that it stays cold longer (just don't put your Avonex in the freezer of course).

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Postby Tbone » Wed Nov 07, 2007 4:49 pm

I just ordered from insulincase.com the "Small Medication Cooler kit good for Avonex Byetta Copaxone Embrel Forteo Humulin Xolair", costs about 45$ US. I found it through amazon.com. There was a slightly larger one for 55$. Im not gonna take a chance with anything else. The description is as follows from http://www.insulincase.com/detail.aspx?ID=328

Description:
Medication Cooler Recommendation for :
Avonex Byetta Copaxone Embrel Forteo Humulin Xolair
These trademarks are the property of their respective owners. There is no affiliation between the owners of these drugs and Insulin Case Shop. The use of these trademarks is solely to help customers pick the appropriate MedCooler.

SMALL MEDCOOLER Package
Most medications must stay between 36 - 46 degrees Fahrenheit and must NOT be frozen. For this we make available a small and a large size Med Cooler. This set up will maintain an average temperature of 40 degrees Fahrenheit for 24 hours in 100-degree heat, never dropping below 34 degrees and never exceeding 46 degrees. Polar Bear Coolers are leak proof, sweat proof, and make traveling with medication safe and easy.

Medication is packaged in a number of ways. To be sure that we are on track with the space you need to contain your medication properly and keep it between the instructed temperatures, please make sure that the medication you have will fit into our 7.5” tall x 2.5” in diameter area for the SMALL MEDCOOLER Package (Shown Below) or 8”x 5.5”x 3” area for the LARGE MEDCOOLER Package , as these are the actual storage dimensions of our medication containers




The SMALL MEDCOOLER Package includes:
(Click on photos to enlarge)
1. One Polar Bear Soft Cooler - Superior insulation, leak proof, sweat proof Dura-Temp liner. Size Small 10” x 7” x 7”
2. Two PBC Techni Ice reusable ice packs.
3. One dry storage Med-Container w/ towel and built in thermometer.
Size 7.5” tall x 2.5” in diameter. Your medication must fit into this area. Keeps medication dry and safe.
4. One Freeze Indicator: Ensures that you will not unknowingly freeze your medication. The indicator bulb turns purple if your medication drops below 32 degrees Fahrenheit at any time while traveling.
5. User-friendly instructions (click on the blue word instructions to read them)

This set up will keep your medication at and average of 40 degrees Fahrenheit for 24 hours in 100-degree heat never dropping below 34 degrees and never exceeding 46 degrees guaranteed!
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Postby loghomonor » Mon Dec 17, 2007 8:15 am

Dear Tbone -

I've been on Avonex since May 1998. By the time I was able to take this drug, MS had already "taken" my right leg and I'd been falling a lot and breaking many bones (left arm, left leg, right ring finger, etc.). Since I went on the drug, I have not had any "flare-ups". I never experienced any of the flu-like side effects of the drug and when I started taking it, in anticipation of flu-like symptoms, I startede taking the shot on Friday so that I would have the weekend to recover if need be. In May of this year my daughter, who is a pediatric intern, was disgnosed with MS. She is on ReBif injections (taking it 3 times a week) and she gets all the flu-like symptoms, ..... but being a doctor. she "sucks it up" (her words) and does her job.

This is a rotten disease but we CAN get through it. Do EVERYTHING you are physically able to do and keep laughing. Laughter is our BEST medicine. And if ever you want to vent ..,.,.. WE KNOW WHAT YOU ARE GOING THROUGH SO VENT TO US (your MS friends here) . Like a dear friend told me after my daughter was diagnosed, she has you --- you had no-one who KNEW. Hope all goes well.
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Postby LindaR » Mon Dec 17, 2007 9:37 am

Hello All. I just wanted to share my experiences with Avonex. I had my first attached on January 2, 2003 and have been taking Avonex since April 15th of that same year - almost 4 years. I have not had a relapse since, no new lesions on my MR and the only minor symptoms I experience from my MS are dizziness from time to time. Regarding Avonex, for the first month I experienced the usual symptoms but now I rarely have any side effects. I take my shot on Sunday nights and I am generally fine to go to work on Monday - sometimes if I forget to take my Advil I will have a minor headache but that's it. I work full time, go to the gym 3/4 days a week and I'm for the most part doing pretty good.
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