Thank you Mo74 all that info is very useful and I do feel like sticking with the Ty for a while is the right thing to do! I worked as a med assistant back in my "healthier days" and I saw the Reps come and go at the office that I worked in and I just didn't like fake vibe I got from most of them. Guess that's where my additude comes from! But I should say that at my first appt with my neuro he did thoroughly explain everything to me and sent me home with a lot of info about my options for tx. Ultimately he did suggest to start with ty because he thought an aggressive approach would be best! I keep hearing about the positive experiences pts are having with ty vs other tx they've tried so I really don't want to mess with a good thing! It's all still just a bit new and scary! I really find hearing it out of other pts mouths who are going through this is very comforting!

Bigj721983 thanks for the tips! I love the chipotle idea! I may just have to try that on infusion day!

Another PS hahaha sorry. I know the money drug company thing can make people worried, for obvious reasons but, understanding what that is too is important. Doctors dont get paid for writing the script. In fact you can never write for it and still be asked to do programs for pharm companies. They will often ask specialists to speak at dinners to other docs or even patients. Thats where most of the money is made. As a doc I was paid to go to sit in on expert panels that helped to lead the drug companies in the right direction for research and marketing. Now, most docs like myself actually lose money doing that esp if you travel cause its time away from the office. The money the company pays often is less then what would be made if the doctor just worked. Dinner programs however are after hours so thats bonus income. Now, docs often have their favorite meds to use and thats generally based on comfort level and experience. If I have used a med 100 times, Im likely to use it again over a med iv only used twice. But, if that med is best either medically or based on pts preference ill use it regardless. It is true though especially with expensive specialty meds (like ms meds) that if you a good relationship with the pharm rep then that will factor in to your preference. Not because of financial gain but, its personal contact right? If im friendly with a certain rep, I know that when I need help with getting it paid for by insurance or getting free drug for patients Im just gonna hit up the guy I know the best to do it for me. So if I had two meds that were medically equivalent but made by two different companies, Im going to pick the drug made by one company i work with better every time. I company many make multiple specialty meds like biogen so for the same reason i may always use biogen drugs first cause i can get them easier and i have that personal relationship. Its more about connections/human relarionships rather then money. If a drug rep comes to my office and he's a total jerk well, if everything else is created equal im NOT using his drug. Ultimately though pt preferences and risk/benefit conversations for that individual pt trump everything, but in the absence of any preference restrictions, the other factors apply. Does that make sense? If your doctor though operates without allowing pt input then its time to get a new doctor, as i said above. Trust me doctors who dont have open discussions with pts arent the ones you want treating you, at least not with something as high stakes and complicated as MS.

I was on it for 26 months, had to stop because it bankrupted us (that's another story) but anyway I was DX in 2008 when I lived in MD that neuro started me on Copaxone that lasted for about 2 months I had severe side effects I would get chills so bad it looked like a gran mal seizure so we stopped that right after that we moved back to WV, needed family help with my 3 y/o daughter anyway I wasn't on anything for about 2 years things were getting worse so I found a new Dr. he started me on Tecfidera that lasted for about 2 months had abdominal pain so bad couldn't' stand it (and no it was not stomach cramps like the drug company said) this was lower abdominal pain so the Neuro stopped that, so his answer this time was Tysabri, I tested JCV+ so I was concerned about PML, he told me he had been using this drug for years and my chances of getting PML was about 0.0006% and in all the years he's been prescribing it he has never seen a case of PML, now I would have to drive about 30 miles to my infusion center each month, I can honestly say that after I was done I did feel a little "strange " (no other way to describe it) but my vital signs were check and normal before I left the infusion center. I've never had any noticeable side effects from it and my symptoms got better and I've have not had a full blown flare up while I was on it , I did have a follow up MRI after 24 months and no PML or new lesions, I've been off it now for 8 months now and I am noticing some return of symptoms , nothing major, yet.
if I had my choice would go back on it again in a minute if I could afford it. and yes my insurance did pay for part of the treatments and I was also getting financial assistance from a foundation but still at the end of the day my co-pay was still about $900.00/mo

@A MyMSTeam Member: I've been on Tysabri for 9 years now, and I am still JCV - . They check for the JCV because they have found that people JCV + have a higher chance of developing PML. PML is pretty rare but they still have to warn you about it. Tysabri is one of the best MS disease modifying drugs out there, and they usually don't start you on it until you have tried other MS drugs that haven't been able to stop the patient from relapsing and having new MS lesion formation. I was started on Tysabri because previous to that I was on Copaxone for abt a year and IV Solumedrol, and neither stopped me from having really bad relapses and new lesions. When on Tysabri you need to be in the touch program, where before each monthly infusion you have to be assesed by your neuro practioner, need to take a 10mg tab of clariten and two extra strength tyenol to prevent side effects. Vital signs are taken and you may not be able to have the Tysabri infusion that day if you have a fever of >or = 101.0 F . An MRI of the brain depending on where your old lesions are located annually. Labs are drawn abt every 3 months: JCV antibody, Liver profile, CBC with diff, and a chem panel. So, you are being watched very carefully with all of the protocols they have to follow and they will take you off of it, if they have to. Trust me, your doctor is not getting a kick back from Biogen the pharmaceutical company that makes Tysabri. The doctor knows this is the best drug to be on and really wants to keep you on it so your immune system doesn't keep destroying your myelin, that could possibly make you severely disabled. When you have time I believe it's the MSAA that annually prints a magazine that is specifically dedicated to inform you about each MS drug that is available and compares all of them to see which are the best at preventing MS relapses and new lesion formation (I'll try to find the link and post it for you.) I also recommend calling Biogen, they are very professional and nice and will explain everything to you, about Tysabri and other MS drugs they make. Everyone is different though, and everyone's MS is different, just like a fingerprint. You can also get a second opinion, it is very important that you trust and like your neurologist because you will be seeing him for years to come and you both have to be in agreement with your MS treatments. Sorry, to be so wordy, but I have not had a relapse since being on Tysabri, and I hope It never happens again. My relapses are very scary because I have lesions in both the brain and worsely on my brain stem. Oh yeah one big thing I forgot , they also have away to decrease the mortality of PML by using a method of plasmaphoresis, where they have the ability to filter the PML out of your bloodstream. Hope this helps some, Good luck and once you find the correct treatment, keep taking it, to prevent further disability from happening.

Mentioned Users

A MyMSTea...

When i was first Dx with MS and started having problems my Neuro wanted me to take Tysabri even though i was JC positive. He stated that the numbers were low and they would continue to monitor it, and felt that i would benefit fromm it. I refused to take it because the risk of PML. I took Tecfidera for a while it didnt seem to help so now Im on Lemtrada. Before i started Lemtrada I went to one of the conferences and when i was telling my story the speaker told me i made a good decision about the Tysabri, she was a Neuro Dr. out of Houston. I also later read that Tecfidera had a risk for PML long after i was off of it.
I feel that alot of times we have to make the best decisions for ourselves. We live with this daily and Sometimes Dr. Will try to force or shall i say really convince you of something even though thats really not what your sure of. Just do your research and do what you feel is best for you..