Question/Comment:

Hey,
I have been needing to ask people who have taken Avonex how severe the the symptoms are the first few weeks/months. I have read info. from the internet and it all state MOST patients have side effects. My doctors had told me that side effects will make me feel sick the first few weeks but I would eventullay get used to it. I teach elementary students which requires me to be constantly moving and very alert. Today I had faxed my doctor to fill out a page for extended sick leave for 4 to 6 weeks. His secretary acted as if she had never heard of anyone taking sick leave while taking Avonex and it would make me feel better. I was made to feel like I was asking for a favor and I feel like i was crazy. The doctors nurse did call me back to tell me to try the shots first and if I have problems to call the doctor. Can some one please tell me what to expect.................

38 year old

Answer/Reply:

Hi
I have been taking Avonex for > 3 years and the flu-like side effects CAN be managed. Make sure you take aleve, advil or tylenol before you inject, let the avonex warm up to room temp (this makes a big difference) and ice the injection site. Drink plenty of water after. While I still get headaches sometimes, I seldom experience anything worse if I do all the above. My doctor had me gradually increse from a 1/2 dose to a full dose so that I had a chance to get accustomed to it more slowly. Hope this helps

Question/Comment:

Hi am 28 years old female i had MS since 10 years, I used repif before and since 3 months i start the avonex , I notice night sweating in my head and hair loss also i have pain in my head skin please give me your feedback

Question/Comment:

I have been taking Avonex for four years and two years ago developed raging tinnitus (ringing in the ears) or screaming in the ears and wondering if anyone else has experienced this as a silent side effect. Thank you.

Answer/Reply:

I agree with you about the ringing ears. I have been on Avonex for 4 years and my ears have driven me crazy with ringing almost the entire time. I also noticed an increase in mucus production. I have an occasional productive cough for apparently no reason at all.

Question/Comment:

After having my third attack in four years, I was recently diagnosed with MS and hate needles. I had a bad experience with a steriod injection a few years ago and am now taking one by mouth for the next week. I can't see mysele giving me an injection every day or even three times a day so I choose Avonex .... once a day. I read things good and bad and it just seems that it's a different experience for each person. I'm hoping it will work for me when I do actually start taking it. Any advise for helping me get thru the week and the rest of my/our lives dealing with MS????

Answer/Reply:

In response to your concerns on the injection of Avonex (fear of needles)
I had/have the same fear , for much the same reasons. I used to be on Rebif, but the three injections over 5 days, caused severe reactions at the injection sites. My problem is that I am not a large enough person (hardly any fat) to help cushion/lessen the pain of the injections!
With Avonex I tried;....small needle and the larger needle! (Looks large enough to inject an elephant! Scared me to death!!! BUT DO NOT BE PUT OFF! Believe it or not the pain is less, as the needle is not as sharp, the medication goes through the needle faster and easier and lessens any bruising which may occur, with the smaller needle. I found the placing an ice pak on the site to be injected for a minute or two, before injections helps immensley! It basically numbs the site. As I am only of small build, I can only inject in my upper thighs (top or side), as the needle is too long. So I sit down, place the ice pak (which is in a zip lock bag. On the thigh, whilst that is numbing the site, I assemble the syringe and needle, get the bandaid, gauze pad and Alchoho wipe out of the packets, by this time the thigh is numbed enough, then I use the Wipe to sterilise the area, wave my hand quickly over the sterilised site on my thigh, to dry it quickly. Place the ice pak back on my thigh for a few more seconds and then get my husband to do the injection, whilst I close my eyes!!!! I usually don't feel a thing, just slight pressure. So if you have someone you trust that can do it for you, it is an enormous help and an Avonex Nurse will come out to see you and the other person you have allotted to do the Injection, to show and train them and you in the process. She/he will sit there and supervise whilst the person follows the instructions he/she gives, as how to inject. DO NOT PANIC, take deep long and slow breathes, before the injection and then fast breathes OUT through your mouth as the injection is going in. This also helps. As youy are too busy breathing through your mouth fast and counting the breathes also helps take your mind off the injection. If you have no choice but to inject yourself, just freeze the site as I have mentioned, take a few deep breathes and do trhe injection in one FAST and fluid motion.
As far as getting through the rest of your life on it....REMEMBER......Medicine moves on EVERY minute of EVERY day, and someone, somewhere, WILL come up with something to take the place of the injection! There are a LOT of things they can do today, that they couldn't even think of doing a few years ago! So remember, the injections will not be forever! Something better WILL come along! The more the scienists and medical proffession learn about this disease, the faster than an come up with other options or even a cure! I was told a long time ago, when diagnosed with Retrobulbular Optic Neuritus, that there was no cure for it, but to hang on in there, as as soon as a cause was found, the medical proffessionals etc, would be half way to a cure! If the cause can be located, then a cure CAN be found! It just takes time. At the time i was diagnosed with the Optic neuritus, there was only Steroid injections to try and stop the progression/correct it. A few years later, they discovered that the problem, if it had been left alone would have corrected itself anyway. They could not even operate on the eye at all, at that time! They can now! All be it, the front (lens/cornea etc), but treatments for the back of the eye are not too far away. They just need "supersonic" strength magnifiers to view the complicated vessels etc. Also remember that the brain is NOT the most complicated part of the human body! (where the MS is situated)....THE EYE IS! believe it or not the EYE is the ONLY part of the human brain that can be seen! and is the MOST complicated part ofthe human body and holds the most mysteries! SO on that note, the brain and the lesions on it caused by MS are not that complex in comparison....So don't think LONG term with these injections, THINK short term! They will soon be a thing of the past! And Hallijulah to that!
I am 48 yrs old and was diagnosed 4 1/2 yrs ago

Answer/Reply:

I have had MS for 10 years. Thank to my doctors I got started on Avonex early. No one would know that I have MS unless I told them. Here are some things that I can advise you. Make sure that you leave your Avonex out in room temp for at least 30 minutes. Eat a good meal, take your Advil before you take your shot, and for reasons that I hate to feel bad, I take is before I go to bed. The biggest thing to remember... do not take hot showers, or go into a hot tub. I was stupid and got into a hot tub and had a bad break out.

And most of all when you are tired quit. Pushing your limits will just get you down and everyone around you. Get plenty of rest. And I know that it is impossible but try to live stress free!
stylist_L@ yahoo.com

Question/Comment:

I wish I had known more about the side effects I experience after taking Avonex: headache and myalgia. The myalgia I experience is severe pain in my legs for which I have to take Lor-Tabs for when it occurs. The headaches occur the next day after the injection and last most of the day. Headache incidences approximately 80% and myalgia incidences approximately 75%. Occasionally, I also experience flu-like symptoms from Avonex as well. I have been on Avonex for 1 year now and though the flu-like side effects have subsided considerably, the other side effects arose and continue although I take an analgesic (arthritis-strength Tylenol) right after the injection.

Answer/Reply:

Hi:
I used betaSeron1b from about 1995 to 2005, and the side effects practically disappeared as time went on. My major complaint was that instead adjusting to injecting three times a week, I eventually hated it to the point of 'forgetting' very frequently. After reading about the of Rebif and discussing it with my doctor, I switched to that therapy instead. This seemed to be an improvement, but again, my aversion to the injection itself has worsoned. There is a new injector soon to be available that will hopefully help me to get back on track and stay there.
My neurologist is wonderful at discussing things with me openly and without reserve; we are both very involved in my treatment. I have called his office regarding the new device, and on my next appointment, we will discuss it in more detail, so I can get it as soon as possible.
When I was first diagnosed, in 1991, it seemed I had to take so many medications to get this thing under some form of control. MS is different in each person, and the treatment has improved remarkably, so your physician will help you make adjustments as the need arises.
Best wishes. ~S~