was it your Dr's recommendations or was it due to your own personal preference. if it was your own preference, why this one?
Anyways, I was on Avonex for a total of 10 years. The first year was very difficult as the side effects were considerable - fever, chills, shakes, loss of energy, etc. The side effects usually only lasted for about a day and I found that they were more manageable if I injected midday as opposed to in the evening and used ibuprofen instead of Tylenol. Around 2 years or so, the side effects weren't all that bad anymore.
I also investigated dietary changes as well as supplements. I found lots of anecdotal recommendations published in various books. However, I am a "show me the data" type of person and I started digging my way through the PubMed database and read many full journal articles. I eventually wound up with a supplement regimen that includes omega-3 fatty acids from fish oil, vitamin D3, R-lipoic acid, turmeric, green tea, calcium, magnesium, zinc and flax seed. I have also experimented with acetyl-L-carnitine. In the past it has helped reduce my cog fog and fatigue, but it isn't helping so much now. I've also been experimenting with cinnamon lately but that's a long and partially unrelated story.
Adding to the supplements, I tried to eliminate some proinflammatory foods. I stopped consuming all trans fats and try to minimize saturated fat. I have also greatly cut down the amount of sugar I consume. I noticed a big change after cutting out sweetened yogurt. High sugar foods now seem unappealing to me. Note that I still consume a bit of dark chocolate, 70% cocoa or higher, from time to time in moderation.
I have felt that I have been slowly progressing over the last few years. I now use a cane since I have pretty bad foot drop. I stopped taking Avonex last September since I was tired of it and also felt like it wasn't doing any good any more and was probably hurting me more than helping me.
If I could go back in time to my CIS that was undiagnosed in 1991, I would do the diet and supplement changes that I've described above. I would engage in a rigorous exercise routine and maintain it religiously. I often feel now that I'm hanging from the proverbial knot at the end of the rope, but that the rope keeps stretching. With MS, we have to fight for the privilege of standing still. If we don't, the rip tide will wash us out to sea. The water is noticeably deeper now and doing an exercise routine now is difficult due to fatigue and loss of muscle tone.
I wish you the best with your decision. People are now diagnosed earlier and earlier in the disease process. I experienced 8 years of clinical remission without doing anything different. If you read enough personal experiences, I think that you'll find that an 8 year remission is not unusual. I have read of people having even longer periods of remission, up to 15 to 20 years. Had I been diagnosed and put on one of the DMDs, it would have been reasonable to attribute the 8 year remission to the medication. However, I suspect that if I had started the dietary changes and supplements back in 1991, then the remission would have been even longer.
I currently feel a bit jaded by the DMDs and no longer feel that chronic immune suppression is a valid treatment paradigm (sure, corticosteroids such as prednisone can shorten an attack by inducing apoptosis in white blood cells, but long term use doesn't seem to have much impact on progression). My current hypothesis is that MS may be a neurodegenerative disease with a component of chronic immune activation in susceptible individuals as opposed to one of autoimmune etiology. After having read much of the evidence surrounding the CCSVI hypothesis, I suspect that it will pan out to play a large role in the disease process. Researchers have repeatedly published over the last 20 to 30 years that MS patients have reduced cerebral blood perfusion. However, it seems that few have asked why this might be the case until recently.
Entropy is maintenance free.
Close your eyes and press escape three times.
after reading thru this site the one person i'm drawn to over and over is george and his experience with his stem cell transplant. aside from it being cost prohibitive it appears to be the best solution...or cure!?
i am really leaning toward a natural therapy solution. i feel that the side effects will effect me more negatively than the MS. maybe this is just wishful thinking. i've never been much of prescription drug person...i just don't believe in them unless it's absolutely necessary. whereas the MS drugs don't seem to be completely effective, i have a hard time feeling that they are necessary. my head is spinning...
i ended up choosing Avonex yesterday. i'm going to give it a shot and see where it goes. the two drawbacks i saw compared to the others were intramuscular injection and possibly that it is less effective than Rebif.
everything else in comparison was a plus for me. one of the biggest is my sister is also on Avonex with little side effects.
i am really focusing on diet and supplements also. i contacted my dr to schedule a blood test to see where my levels are currently. once i have that i will develop a routine.
exercise has been a part of my life forever now. i was an avid runner for years as a way to stay in shape for skiing. since knee surgery last yr, my running has been cut back and i focus more on mtn biking and weight training. yoga has been on the list for a while and this is a good reason to start.
You may be interested in the following threads.
Injection site locations
The second thread listed discusses the powdered form of Avonex. I was on this for 10 years and it was still available from Biogen at the time of my last injection in Sept 2010. Some people who have switched from the powdered form to the liquid prefilled syringes have struggled with increased side effects. For example, one person stated that it felt like they were going back to the beginning with Avonex even after having been on it for two or three years.
I was considering Tysabri, but I have been tested positive for the virus that could cause the brain infection if I do take Tysabri. So, I best not take that. I have not had any new lesions since I was first diagnosed in 2003, so hopefully I can manage to keep them off with the Avonex.
Lying on the cold bare ground.
Someone came and stepped on me.
That is why I'm cracked you see.
I'm a nut! I'm a nut! I'm a nut! ...
I once was briefly on Avonex prefilled but went back to the powdered form due to increased side effects from the prefilled. I remain on the powdered form to this day with no side effects, don't even premedicate.
In all my years on Avonex I have remained stable with no attacks.
For me Interferon therapy is essential in slowing MS down.
Will continue with the weekly injections and take my disease one day at a time...
Please send me a Private Message (PM) by clicking on the PM icon. Thanks.SeifSZ wrote:Hello NHE,
I would very much like to be able to contact you for a few questions on dealing with the disease. please contact me on firstname.lastname@example.org if you can.
I wish you health and happiness.
At the time it came out, it included a pre-filled syringe with the Avonex powder. Water was injected into the syringe, shaken not stirred, and a shot was born. I learned to always take to ibuprofen before my shot to prevent a headache.
It is really great that there are many more options of drugs to stabilize but there still is no cure!
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