This Is MS Multiple Sclerosis Community: Knowledge & Support

Hi, my name is Sarah and I am here to ask a slightly more detailed version of the ultimate newbie question... "why Avonex?"

I have spent a lot of time reading the wonderfully helpful boards here and I have what I think is a slightly more specific spin on this quesion -- I am most interested to hear people's thoughts on the potential for serious side effects relating to liver and other organ function.

After experiencing what I later learned was lhermitte's sign, I had an MRI a few months ago that showed a lesion on my spine and a possible lesion on my brain. A spinal tap confirmed the presence of the protein that makes MS more likely. My neurologist thinks that I should begin treatment and I agree.

Like many others here, I was given some literature and told to decide. Because I am a lawyer with sometimes crazy work hours and I love to travel, the once per week dosing of Avonex really appealed to me and given the seemingly similar effectiveness rates of the CRABs, I had decided that I would try that first. Then I had a conversation with a coworker who also has MS and he told me that his doctor thinks that the potential organ damage with Avonex is actually much higher than is currently reported and that Copaxone is the best way to go. His advice has sent me into a tail spin.

I was under the assumption that the regular blood work done in the normal course of taking the interferons would let me know if I had anything to worry about with respect to my liver... is that assumption incorrect? Is there other potential organ damage that I should be worried about? I hadn't ever heard anything about other organs possibly being damaged -- am I missing something?

I am 29 and anticipate being on the drug that I choose for a long time, so I don't want to choose something that is likely to harm me. I would most appreciate your thoughts and input.

Best,

Sarah

Welcome, Sarah.
Here is my experience: Diagnosed with MS in 1992, I began Betaseron when it became available. I saw no positive effect, I continued with exacerbations and deterioration. I switched to Avonex, which I took for almost eight years. My condition continued to deteriorate.

My doctors ordered blood tests to monitor liver function, antibodies, etc. only once or twice. This is NOT the way to do it! If your doctor doesn't bring it up, YOU should request the tests.

As the resident "insulin-believer," I suggest that you also request a "fasting serum insulin test" with at least one of those batteries of tests. Maybe a postprandial (after eating) insulin test, too.

I then switched to Copaxone for less than a year, but found side effects intolerable. I am on NO prescription drug at this time. I am trying to lower my insulin levels with diet and vitamin D--no success there yet.

To my knowledge, no organs have been affected by the ABC drugs.

Best wishes to you in your journey.

You may be interested in reading through one of my earlier posts on this topic where I share my experiences going through the same decision making process.

During the first couple of years, you should probably get your blood tested every 6 months. These tests typically include a complete blood count (CBC) and a liver enzyme test. My liver enzymes are right in the middle of the acceptable range and I'm convinced that my supplement regimen has probably been a factor in helping to keep things normal in addition to providing some benefit for MS. Note that I give links to a description of my supplement regimen in the above linked post.

You may also want to read through a book by Dr. George Jelinek titled Taking Control of Multiple Sclerosis, Natural and Medical Therapies to Prevent its Progression. Dr. Jelinek is an MD who was diagnosed with MS and did his own research through the published literature. It's a great book to read especially for the newly diagnosed. The only issue I have with his advice is the recommendation to take grape seed extract as some researchers have found that this will increase interferon-gamma in vitro. By the way, the full paper is available for free.

Another good book to read is Curing MS: How Science is Solving the Mysteries of Multiple Sclerosis by Dr. Howard Weiner. Here's a link to a discussion of the book we had here on ThisIsMS about a year and half ago or so.

Anyways, I hope that you find this information to be helpful. Good luck going through your decision making process. I would be happy to try to answer any other questions you might have or point you towards additional resources.

NHE