Starting Tysabri...what to do? Side effects so scary

[Mymarcus2010]

Im suppose to start Tysabri soon, my neurologist thinks it will stop me from being systematic right now. I see alot of you are starting Ocrevus. Would that be better in the long run? Im only 46 and feel so confused with treatments. Any suggestions before I start Tysabri and while Im on it? Thank you guys...

[RoyceNewton]

Marcus, I am in no way qualified to give "YOU" advice so this is just a highly recommended suggestion, based upon experience.

Is Tysabri the safest most effective medicine that you can take?

Why Tysabri and not oOcrevus.? If the doctor does not have a good answer, which he probably won't (my opinion) Ask for strongly, Ocrevus treatment.

Unless the side effects will kill you, then you will be okay. The dying part is really hard to come back from so I hear.

With the disease-modifying therapies (DMT) you ALWAYS want the strongest that your body can take for the long-term. Pick a number in all the medical paperwork and whoever has the highest number with the least fatal side effects WINS.

I do Tecfidera it is easy, I have no side effects, easy to take and travel with and I am a little too far along the path to start a new medicine.

So relax, take a deep breath and you make the decision that is best for you.

Royce

[Mymarcus2010 in reply to RoyceNewton]

Thank you so much for your perspective..so true. My husband just said that too, ehy not Ocrevus. I think my neuro wants to try Tysabri first and then Ocrevus...but then that means I have to jump through hoops again with insurance. Its a battle for sure and appreciate your advice.

Blessings, Yvonne (Marcus is my beloved dog)

[RoyceNewton in reply to Mymarcus2010]

o okay

[RoyceNewton in reply to Mymarcus2010]

I might suggest again, why start on a lesser medicine? You are the person with ms. If it was available start with thee the least relapse medicine and move backwards. Your husband is correct Ocrevus if you can handle it. Safety then efficacy. Then what your doctor suggests. Why is he not going for the biggest stick first?

[scouty in reply to RoyceNewton]

I would prefer Tsabri. Ocrevus is your last choice. It is the newest and they haven’t any long time results. It has only been out less than a year.

[Royjr]

Ultimately it’s your decision on which treatment you go on. I think that they want you to try other treatments before starting on Ocrevus. I think they don’t recommend this drug as your first treatment. I’m not sure, maybe others here could elaborate on this subject.

[Raingrrl]

I’ve been on Copaxone, Tysabri and now Ocrevus. My insurance, Aetna, would not approve Ocrevus without proof that lesser drugs had failed me. My neuro had to escalate the decision and give them proof of the need for the switch. It was annoying.

That said, I was on Tysabri for 5+ years. It kept me stable but I needed to switch because I’m JVC+ and my index kept increasing meaning my risk of a PML was going up. Tysabri was good to me and kept my MS stable the whole time without side effects. I would get sleepy after each infusion but think that’s because I’m really squeamish and wouldn’t move my arm the whole time of the infusion. That wore me out! We are all different in how these drugs affect us so your experience could be different.

[Kenu]

I have been on seven different DMT’s and thru the years as they quit working and new ones came out I went for the newer ones. I was on Tysabri for seven years and the only side effect was fatigue for day and half. I was stable and no new lesions. When I got cancer I had to go off it to receive chemo and radiation. My t-cells changed and I went on Aubagio eighteen months ago and my last two MRI’s were stable and no new lesions. Everyone is different and reacts differently to the DMT’s. Good luck with your choice 👍🙏🐾. Ken

[anaishunter]

My doctor presented me with 3 drugs out of the 14+ available in the US, and asked me to read about them and think about which one I'd want based on how it would fit with my lifestyle (daily, weekly, injections, pills...).

He also said:

(1) "We need to do more tests to evaluate your JVC and whether you can take any of these w/o risk."

(2) "I would like to get you on the most aggressive treatment you're willing to take and as early as possible so that ms does not have the opportunity to do more damage to you."

I like that he gave me choices and just 3 instead of 14. Lots of reading (yes, it is overwhelming, but everything is overwhelming about ms. It's like we have to get on a treadmill just to understand what this disease is about.)

We are all different with different tolerance for treatment, risk, etc... Some ms drugs have been around for years and are better understood with more historical data on side effects. In the ms timeline, Ocrevus is still fairly new. Who knows what we will learn about it 5 years from now.

So, it really has to be your choice.

[Smartcloud1981 in reply to anaishunter]

My neurologist also ask me to read about the old drugs and the newer drugs so I’d have an understanding. Then when we met we talked about three. I told him what one I wanted to start with and he pushed it it through the insurance.

[Amore55]

I was on Tysabri for six years ( JC virus positive) and absolutely loved it. I had to stop because all of a sudden my risk went way too high. But when I was on it, it completely held my ms in check. Once I got off it all heck broke loose. If I could, I would go back on it in a minute. Never had one bad side effect, and they monitor you so very closely on it. They are required to. I wish you luck. Let us know how things turn out! Love, Kelly

[Amore55]

What kind of dog is Marcus? Love, Kelly

[Mymarcus2010]

Thanks so much everyone! Copaxone was the only treatment I was on for 10 yrs, so moving to Tysabri to stabilize my symptoms seems like a good choice.

.....hey Kelly, Marcus is a rescue Lab/Shep. Such s loving pup!

[sashaming1]

I took Tysabri for 6 years (until I had a positive test result for the JC Virus which made my chances increase for a bad side-effect). May need this blood test for the JC Virus prior to starting? (ask your Neurologist). You'll get a monthly blood test after you start. The infusions were completely uneventful and I had no problems at all with them. Tysabri worked well for me per the MRIs and the lack of any MS symptoms or relapses.

[Mymarcus2010]

Hi everyone..well Im on my 2nd month of Tysabri. Serms to be working for me..my systems have reduced. I have energy again too. Iv started a clean diet, lots of meat protein no dairy and organic anything! I've increased my supplements also, milk thistle to protect my liver, Colastrum, 2000 units of D3, magnesium, etc. Prayer and meditation are huge too. No caffeine..ugh I miss coffee, and lots of rest! Thank you for your great advice about Tysabri and other dmt treatments. Blessings to you all...peace and smilies