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Deann's History and Experience
in the Antegren (natalizumab) Trial

 

Background

I am a 40 year old female diagnosed with multiple sclerosis November 7th, 2000. The picture to the left is my husband and I on a MS fundraising cruise. Two years prior to that I had what is known as the L'Hermitte's sign and some tingling in my right hand thought to be brought on by using a computer keyboard. Well both of those went away and stayed away for 2 years. In October of 2000 my legs started to get numb and I was unable to walk without the assistance of a wall. I ignored it and said it's probably a thyroid problem (it can mimic symptoms of MS) and everyone in my family has a thyroid problem requiring medication. I went to the doctor and he ran all the blood test he could thinking that something would have to show up. The bloodwork came back normal so he thought it was all in my head, I'm sure because I am a woman. Things started to get worse, my walking was very bad because I really couldn't lift my leg to get my feet moving. At that point I went back to the doctor again. He decided to send me to a therapist, I decided to go to make him happy. My therapist and I used the session to kind of make fun of doctors who can't figure out things so they say "it all in your head".

Well a few days later I was getting even worse, so back to the doctor I went, he sent me back to the same therapist - we had a good time just chatting. My therapist knew that it was something physical not mental and told my doctor the same. Well I let a week go by with symptoms getting worse daily and then one day decided to go to the ER where I meet a neurologist on call. Well, he thought the same thing and handed me a prescription for an Anti-Depressant and sent me home. The very next day I was completely paralyzed from the waist down and went back to the ER by ambulance this time. On this trip to the ER I got lucky and the neuro on call suspected MS and ran the proper test to confirm it. After the MRI results came back it was confirmed that I had MS and I was admitted to the hospital that same day for 3 days of SoluMedrol. I recovered very well, but was off work on short term disability for 6 weeks. During that time I adopted my furry little prozac, my cat Kenny.

November 9th, 2000 - My doctor and the other neuro came to my room to do rounds. I told the neuro (the first guy) to never come back that I will refuse to see him if he does. My primary doctor came into my room and I said to him "Do you think I need to see a f-ing therapist now?"...sorry I was very mad at him. He was very apologetic and stayed there and let me chew him out. I reminded him that without patients he has no income. Now, if I have even a runny nose he will send me for a CT Scan...he walks on egg shells with me now. I kept him as my doctor because I knew that he would always take me seriously and respect me from that point on. He has recently thanked me for educating him on MS which has to be hard for a doctor to say to a patient since most doctors feel they know everything.

My neurologist that I continued to see was the neuro that I saw on the second day who diagnosed me. I started Avonex within one week. I didn't want to wait, I wanted to start treatment right away. My husband does the injection, I just do the mixing. I just can't seem to get past the needle. Shot day is a funny day, it goes like this: Mix the shot, hand it to my husband, get cat treats, and then cover my eyes while feeding cat treats to my kitty. He thinks my husband is hurting me so he will sit on my leg or try to knock the needle out of my husbands hand with his paw. It's very odd for a cat to do that, but I think it's cute and he loves getting extra treats. Hmmm...maybe he has us tricked into getting extra treats.

Antegren as a Treatment for MS

In comes Antegren (natalizumab - manufactured by Elan)...I read about it somewhere and then did lots of research on it. I went to my doctor and asked how do I get in this trial. Lucky for me he was friends with the doctor that was heading up the trial. The trial doctor is my full time doctor now - he is a great guy and is really well known. His name is Dr. Peter Calabresi. I did a web search on his name once and I couldn't believe all of the results that came up. He's not your usual doctor, if you had a sore toe at your last visit, he will remember and ask you how it is, he remembers everything about every patients. To top that off he is probably the most personal doctor I have ever met in my life.

I started the Antegren & Avonex trial in September 2002. My doctor didn't feel that Avonex was doing much for me because I was still relapsing every three months requiring steroid treatments each time. Once I started the trial, my relapses stopped and I started to feel better. Seems I got lucky and got the real thing not the placebo (of course no one can tell me for sure). I had some of the side effects listed for Antegren which I read after I had the side effects so I didn't make myself have them because I read about them before hand. Side effects include a headache which was easily fixed by taking some type of over the counter pain medication like Tylenol®.

I have had a total of 9 infusions as of this writing, May 30, 2003. The infusions take about 45 minutes then 5 more for the IV flush. I see the doctor(s) every three months for disability testing. My last test showed an improvement - I was actually walking faster than the doctor who was timing me. I also have to do testing with an MS Research Coordinator which consist of an eye exam, pegs in the hole and some adding test that even the people I work with can't do when I try it on them. To be able to treat our disease on a once a month basis is wonderful. It's not a constant reminder that we have MS.

My neurologist is really excited about this medication because of the wonderful results that he has shown with patients so far. I have a saying, "With Antegren There is Hope", and I truly mean that. I think this is going to be the treatment of choice as soon as FDA grants approval. Antegren has shown to reduce lesion load by 85-90% which is far better than anything out now. It's not a cure, but it can sure stabalize things until a cure is found. The best part about Antegren is it's very easily tolerated, the most reported side effect is a headache. I really wish that this medication could be approved sooner than 2004/2005 because it could help so many people.

I wish I could report my MRI results, but they are sealed because of the trial. In addition to Avonex and Antegren I also take Neurontin, Wellbutrin, Ativan, Flomax, and Macrobid.

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