What would be the reasons for immediately starting me on tysabri before trying anything else? I thought this was a last resort.

[jojt]

Just got diagnosed 2 days ago. My neurologist a bra me to start on tysabri. After doing research, I realized that this treatment is a last resort. What would be the reasons for immediately starting me on this before trying anything else?

[Kenu]

Welcome to our crazy 😝 group of MSers. This is a great place to vent and find out lots of information on MS. I was diagnosed in 1996 and have been on seven different DMT’s. As they quit working and new ones came along I switched to them. One of the best ones was Tysabri 👍. The only side effect was fatigue for a day and half. I was stable and no new lesions while on it. I would probably still be,but I got cancer three years ago and had to stop treatment for surgery, radiation, and chemo. I am currently on Aubagio and it is working great 👍. Remember that everyone is different and reacts to treatment differently 🤷🏼‍♂️. Good luck with your choice and your neurologist probably has a reason for recommendations. 👍🙏🐾😉. Ken

[Jazzyinco]

A very warm welcome joj, to our wonderful family of warrior MSers. Like Ken said, here you'll get amazing support & awesum knowledgeable advice, we R knot docs but darn close to them, how much we research + Know. Don't feel bad, when I was first diagnosed in Feb. This yr. by a Nurse Practioner, she too wanted me to take Tysabri, w-/out even testing for JCVirus. I went & got another opinion from an M.S. specialist Neuro doc. & ur right in saying it is supposed to be a last resort!! 😱 U should get another opinion by an M.S. specialist Neuro. Doc. I'm sorry we have to meet like this, but we're all M.S.er family here,so again welcome & Please keep us posted. Can't wait to get to know u better.😻🐾🐈🐅💕💓🙏Many Blessings to U.---Jazmine

[kdali]

It’s incredibly effective at reducing relapses and slowing progression to disability. It’s not a last resort. I wish I could take it 😭 It’s a good idea to ask your MD what makes them order or not order x,y,z.

Welcome to the group!

[Lilith08]

I think I'd have the same question as you did, jojt . Depending on how severe your symptoms are at the moment, you may feel either more rushed or less rushed into making a decision but I hope that you can find a way to take a bit of time and explore the options so that you do what feels right.

I can tell you that I sought out a second opinion and switched doctors before starting on anything. My original neurologist essentially told me that Aubagio was the only way to go and it didn't sit well with me.

About a year later my MRI showed a couple new lesions and the doctor recommended switching. Ocrevus had just been approved, weeks before, and he sounded pretty sure that was the way to go. Again, I didn't like feeling rushed into something without having all the info, plus I didn't like the idea of something so very new with a short history of use.

It took some effort but I put together a chart of all the medications and the pros and cons of each and that helped me decide what I was comfortable with. And for what it's worth, when I saw the doctor again this year (usually see the nurse practitioner), he wondered aloud why I wasn't on Ocrevus and then misremembered that it was *his* idea to not use it because there's a family history of breast cancer that contraindicates its use. (Ahem!...I was the one who pointed that out after doing my own research; but I didn't correct him.)

So, it all depends on the individual, I'd say. For me, I'm very fortunate that my MS is, at least for now, not aggressive and I'm fully mobile--my choice might be quite different if/when that changes. I also generally prefer to avoid the "big guns" until it's absolutely necessary; other people may prefer to attack head-on with the big guns. Follow your gut after doing some homework.

[Hellobirdie88 in reply to Lilith08]

Can you share that chart?

[Lilith08 in reply to Hellobirdie88]

I'm not sure how to share a document but I'll look into it.

[Gcantrell7]

Yeah, I don't know where people are getting their info, because it's not a last resort.

[Amore55]

I was on Tysabri for six years, it was the best thing to ever happened to me. If they would allow me back on it, I would start tomorrow. I jumped from one med to another until Tysabri. It was the one med that held my ms in check with no side effects. Since then, nothing has been suitable, I keep “failing” any med they have tried and now have been off all meds for almost a year. I am angry about this and getting a new neuro. Sometimes I think we are all smarter than the docs! Do your research, but I have never heard of Tysabri being a last resort. God bless. Love, Kelly

[Lilith08]

kdali Gcantrell7 It may not be exactly a last resort (that would be more like chemo & stem cell transplant) but given the possible side effects I wouldn't consider it as very first option, personally. I know it works wonders for a lot of people, but depending on the individual it may not be the first thing you jump into.

[kdali in reply to Lilith08]

It’s a popular first choice by neurologists and their patients because of the drug’s effectiveness and lack of side effects.

[CalfeeChick CommunityAmbassador]

My 1st Neuro "called" me and casually said "You have MS, gonna start you on Tecfidera, now don't go getting all upset and tearful. You've had a long life, and we'll switch you to something else in 18 months." He just kinda wrote me off. We saw him one more time to get all my records and never looked back. I've learned so much since then, but know we made the right decision to look elsewhere for my MS Neuro care.

[guitarguy]

I just had my first 1/2 dose of Ocrevus about 10 days ago.

I guess I’m lucky in that my Neurologist also has MS. Him, not so much. This helps on many fronts like what my expectations should be, how will this progress, treatment choices and supporting information etc.

The one piece of advice I will share however, is to do your own research for all of your meds to include what you should expect, side-effects, contraindications etc. you cannot be be over informed. This research can also provide the basis for any questions that may develop for you to ask your Neurologist when you see him/her. I’ve found it not only beneficial but absolutely necessary to write these out on my IPad and take detailed notes because I suffer from CRS. My wife is an RN and even with that advantage we often find ourselves coming up short on note taking. I’ve now come to the point where I’ve asked my doctors if they mind if I record our conversation because of my memory issues and volunteer to turn it off if there is something they are not comfortable being recorded.All have agreed with reservation. This is enormously useful when you try to recall or recreate conversations afterwards. Let’s face it, some conversations are filled with emotion. Like the one where they say you have Cancer, or MS etc. my ears seem to close and I don’t hear anything more even though I can see their lips moving. It also helps if you have a close friend or family member accompany you to all doctors appts. I say all because you never know what kind of news you’ll be getting and a second person can help take notes and recall the conversation if you can’t record.

I also goto him for Botox treatments for migraines which has been nothing short of a miracle for me. I hadn’t had a migraine since I began.

Lastly, be your own advocate. Obtain and maintain complete records and back them up often and keep the back up off-premises. This is huge pain in the but when you first begin but becomes far easier after that.

Dave (known for his very brief replies)