Tysabri, also known as Natalizumab, is a once a month infusion for MS. It works differently than other MS meds by blocking white blood cells from entering the brain and spinal cord of individuals, or across the ‘blood brain barrier’. This is believed by many doctors to be a big factor in the damage caused by MS. Tysabri can cause many side effects, and for some they can be worse than for others. The common side effects are headache, fatigue, joint pain and depression. Often these can be mitigated by taking Tylenol prior to your infusion.
The history of Tysabri has been filled with controversy. After being approved for MS by the FDA, it had to be pulled due to patient deaths due to PML (progressive multifocal leukoencephalopathy ). PML is a very rare brain infection that usually leads to death or severe disability. Currently there is no treatment or cure for PML. PML has several risk factors including 1. Being positive for antibodies for the JC Virus 2. Prior use of immune-suppressants 3. Length of time taking Tysabri. The JC Virus is a common virus that many people have antibodies for (50-60% of people). But in individuals who have weakened immune systems, it can lead to PML. Many people still take Tysabri even if they are positive for JC Virus antibodies, that is a very individualized choice that each person has to make on their own. Due to the significant risk factor of PML, a database was created to follow every patient who is taking Tysabri called the TOUCH Program. Prior to a first infusion, an individual and their doctor must register with the program and will be contacted periodically to see how treatment is progressing. Because Tysabri has such a high risk, it was thought of for many years to be a drug that was used when others were not helpful, or as a last resort.
When I was presented with the idea of Tysabri several years ago, it initially scared the crap out of me. The idea that I had progressed to the next ‘level’ of meds, that my MS had become no longer able to be managed on other meds, that my doctor was calling it ‘aggressive’. But in reality it was aggressive. I had 3 relapses in a year and a half. When my doctor described the lesions of the last one he said they ‘aren’t subtle’. That really shook my husband and I. First, before any thoughts about the drug itself, I wanted to know if it was JC positive. That would direct my thoughts. Turns out I wasn’t, (but I keep getting tested every 6 months or so). What was I to do? I researched. A TON. And I found a very interesting trend. In the patient stories I found, they were literally back and forth, good to bad. One person said it was the worst experience of their life, then the next person said it saved their life. I discovered that it would be just like everything else, individualized. There would be no way of telling how I would react. My doctor was strongly recommending that I take it, he went so far as saying if it was his family, he’d feel comfortable telling them to take it.
In September of 2014 I started Tysabri. I can say it has been the best medication for MS I’ve done. The side effect I had most was fatigue. For the first 6-8 months, after the infusion I was EXHAUSTED. Just junk. But eventually that subsided. Now, I am able to have the infusion and go about my day. It is nice not having to think about medication daily. In terms of MS symptom management, I think it helped about 70-80%. I still was feeling pain, numbness and burning. But once I went strict AIP, everything went away 100%. I think Tysabri gave me a boost, then AIP took me the rest of the way.
Obviously there are many risks involved with Tysabri, that I still think about. I still continue to monitor my JC virus status, and if that changes someday then I’ll have to re-evaluate my status with Tysabri. I’m not sure if I’d continue with it if I was ever positive. I know many people do, but I don’t know if I would be comfortable with that. I guess I’ll have to cross that bridge if I ever get there.
Interesting how damaging most MS medications are. There really are no benign medications that work across the board. Thanks for sharing your experience. I’ve been on Copaxone for 5 years and am JC positive, so my doc won’t consider this for me. I haven’t had a relapse for a while. I’ve also started LDN and CBD. Hoping the combination of all of them will lead to better health. I appreciate your blogs!
That’s definitely true! They all have negatives attached to them unfortunately. I’m curious about LDN, how has that worked for you? I’ve heard great things about CBD as well. I have a CBD balm that is FANTASTIC. Better than any pain relieving balm I’ve ever tried. If I didn’t know about the research too, I’d be a believer because of that!
Sorry…I didn’t realize you replied. :\
LDN has really helped. Sometimes I think the thing it’s done the most for is my mental outlook. It’s helped me see my future in a more positive way. Some people say it’s not legit or just a placebo. But I feel like even if it is just a placebo, I’m getting good health from it, so I’ll take it. I have less pain, a variety of skin issues have resolved and my hair stopped falling out. I’m excited to see where I can go with the CBD. The Facebook group Got Endorphins – Low Dose Naltrexone is very good for information and resources if you’re interested in the LDN.
That’s great LDN has helped so much like that! Those 3 things you mentioned are exactly things I deal with as well, so I’ll have to look into it more for sure! Thanks!