New to ms and Medication options.

[Spenny84]

Hello, I have just recently been diagnosed with MS. my doctor has tasked me with researching and choosing what medication i want to start with from a list. that list is Tecfidera, Vumerity, Aubagio and Ocrevus. I was hoping for insight from people who have taken these meds. I have no idea what I am doing and if i am being honest I am really scared about this whole thing. Whatever advice or experience you could share would be appreciated. thanks

[kdali]

Welcome! Here's my favorite review of the meds. I tend to choose by looking at relapse rate and progression. I also hate pills, and I think that's most of your list, so I can't give good input. However, you can search old posts for specific meds on this site to see what the crew has experienced. If family planning is a concern for you, it's also noted in the review.

tldrpharmacy.com/content/an...

[Spenny84 in reply to kdali]

Thank you I appreciate it. I will read this. 🙂I appreciate the response

[Sandydemop]

Hi Spenny84 welcome! I was told Tysabri is the gold standard but not on your list. Maybe you have the PML gene related to the JC Virus. If you are, like me, at risk for the JC virus, tysabri is not an option. I have been on Aubagio for 4 years and had good experience with it. I like that it's oral.

[NorasMom]

I can't really offer any advice on the drugs, but I do want you to understand that there's no hurry to take any. Yes, the available drugs can be helpful. But you're not going to cause more problems for yourself by taking your time, even a few months, to research the pros and cons.

[Spenny84 in reply to NorasMom]

Thank you. I am just really worried about it getting worse by not taking meds. researching Ms, it's treatments, the types and everything else that surrounds it has kind of put me in a mental tailspin. It's so much to take in

[NorasMom in reply to Spenny84]

It is, so take your time. Like many of us, you're also dealing with other health issues, so you need to factor those in, too. I would never discourage anyone from taking the drugs that are out there, but I was very late getting my diagnosis and therefore didn't really have the chance to take any. I am on Disability now, but I still look after myself, use a riding mower, and plant a small garden, even after 40+ years of consistent MS symptoms. Take the time you need to figure out what is best for YOU, and don't let anyone rush you.

[Sweetheartonvdayl]

Hi & welcome ! ❤ Lisa

[anaishunter]

Welcome to the group. you're in the right place to find a wide range of advice from folks who've been there and done it.

Picking a med is daunting and the diagnosis is overwhelming. So much to try to understand, yet so many unknowns.

My neuro gave me the best advice (in my opinion): MS attacks your brain. Everything you lose from a flare-up, you might not regain. So get the most aggressive treatment you can deal with (that your body can handle and fit with your lifestyle). The goal is to stop the progression of the demyelination as fast as possible (= no active lesion, no new lesion).

(My neuro said old advice was to go the other way: least invasive treatment. Then if it does not work, graduate to the next more aggressive one. The downside: you lose time and your brain gets damaged in the meantime. Most neuros have completely flipped this strategy over: get as aggressive as you can with the treatment upfront)

Now my case: I was diagnosed with a heavy load of lesions, with luckily minimal outside signs. I went for Ocrevus because it seemed to have the best result and be the least intrusive (for me- twice a year or less, you get a multi-hour infusion. Then you're done for 6 months).

Hope you'll make the best choice for you.

[goatgal]

Welcome to the forum. You'll find this is a very supportive group. As I scan the responses to your post, I see lots of helpful information. As you are eligible for a disease modifying treatment, unlike even ten years ago, you have many options. But whatever your choice, it's important to remember that each one of us presents with MS that is similar but not identical to every other person with MS. This means that you will always be the one in a position to advocate for you - how MS affects you, how you respond to a treatment choice, how you choose to live your life. There is a very helpful on-line course offered by the University of Tasmania (in Australia) that is offered once or twice a year. If you are new to this whole idea of MS (as many of us are when first diagnosed), the course provides accurate (and somewhat reassuring) information about MS and how it affects each individual. If I can find the link to the site, I'll post it. Many of us here have taken the course, some of us more than once, and can highly recommend it.

[Spenny84 in reply to goatgal]

Thank you! I would greatly appreciate the link. I am very new to this. I had heard of MS but never knew what it was. So that would be helpful.

[Mollyabigail in reply to Spenny84]

Here's the link. I see the next class starts in September. And it is free. (I like free). ms.mooc.utas.edu.au/

[goatgal in reply to Spenny84]

Understanding Multiple Sclerosis (MS) - University of Tasmaniams.mooc.utas.edu.au

'Understanding Multiple Sclerosis (MS)' is a free online course that aims to improve understanding and awareness of MS. Members of the public will increase ...

‎Contact Us · ‎Log In · ‎Sign Up · ‎FAQs

You can enroll now for the September course. It's free, and begins Sept 12.

[tompumo]

I highly recommend Ocrevus, I've been on it for 5 years. It actually helps me. I feel more steady for a few months after an infusion, both mentally and physically.

[Blue000]

I was on copaxone for 15 years (an injectable med) and switched to aubagio in December. So far I’m tolerating it well ,no complaints.

[ahrogers]

You will find some people do well and others not with each of the medications.I have been on Gilenya and Rebif in the past and am now on Ocrevus.

I also like that Ocrevus is an infusion every 6 months and don't have to worry about taking a pill every day or self injecting regularly.

The other here have given good advice. Take a bit to cope with the diagnosis and search each of these meds on this site and elsewhere to help you decide.

MSAA has good info for newly diagnosed people. I always advise to keep your general health at its best by exercising and eating a healthy diet as much as possible. There are some "MS diets" out there but so far haven't proven they are better than something like the Mediterranean diet. Exercise has been shown to help. Of course not smoking and maintaining a healthy weight help as well.

Good luck and welcome to the group!

[Spenny84 in reply to ahrogers]

Thank you. I am trying the Mediterranean diet but the right part is I have issues eating fish and eggs. With eggs it's a texture thing with fish I don't know what it is but I am trying to force myself to like it. I am also quitting Vaping and have been trying to get my weight down. I know it's a life style change and I am really trying it's just floating up my anxiety and it's hard when coping mechanisms are good and smoking 🤦

[ahrogers in reply to Spenny84]

I wouldn't force yourself to eat eggs (I don't like their taste so don't eat them) and just adding fish once in a whole would be a good start. You don't have to go crazy following it strictly.Quiting vaping is huge for your health too.

Lifestyle modification isn't easy and will have many cheats along the way. The key is to not give up

[Spenny84 in reply to ahrogers]

I keep telling myself that and" just keep swimming" my kids like finding Nemo lol

[sashaming1]

I took Tysabri and Lemtrada with success. We're all different with our response to DMTs.

[JSSimp]

I started taking Tecfidera Brand Name and Now on the Dimethyl Fumarate and Next mth will be changing To Vumerity. I have done well so far on those since been diagnosed in March 2020. With trying these meds and having to change to Vumerity it was scary in the event I knew I didn’t want my symptoms to worsen. I did my Research and with the doctor explaining everything I felt the Comfort and Peace of moving forward to begin. Many prayers in making the decisions that works for you. Pls reach out to me if need be🙏🏾

[Spenny84 in reply to JSSimp]

Thank you!

[JSSimp in reply to Spenny84]

You’re Welcome🙏🏾

[Elizt3]

Welcome! I hope your doctor can give a recommendation for what they think is best for your situation. I was on Aubagio for about two years and relapsed on it. I think tecfidera caused my white blood cell counts to drop too much so I was only on it a short time. I’ve been on ocrevus since 2019, and I’ve had no relapses or notable changes of my MRI. Good luck!!

[Spenny84 in reply to Elizt3]

The doctor gave me the list and said you choose and when I asked for her recommendation it was all the meds she highlighted. It was 6 of them. But I am going to look them up on this site and research more today. Thank you.

[Kenu]

Good Morning ☀️ and welcome to our crazy group of MSer’s. I have had MS for twenty seven years and had been on seven different DMT’s over that time. As one quit working I moved on to the next. I had my best luck with Tysabri, was on it seven years till I got cancer and had to switch. I went oral to Aubiago and it worked really well for me. We are not doctors here just good people who have been living our lives with MS. Be sure to check with your insurance to see which ones they cover and what your cost 💲 will be. Also contact MSAA and they can help you with decisions and grants to apply for to help with out of pocket expense 👍🏼 🙏 😉

[Spenny84 in reply to Kenu]

Thank you I will look into that

[mrsmike9 in reply to Kenu]

If insurance won't pay, many drug companies have helps in place. If you go on something and find it's out of this world cost, shout out here and someone may be able to tell you who can help. Aubagio is SO expensive but there is an agency who pays until your out of pocket/deductible are met so then my insurance pays. In January of each year my refill (that I pay nothing for) meets those requirements so my medical all year is covered by my insurance!

[hopeandgrace]

Hi! Welcome to the group. I may be the only one voicing this opinion, but I think it’s odd and maybe wrong that your doctor is having YOU do the research.

I was already so overwhelmed when I was diagnosed with MS. My neurologist was the one who evaluated me, took note of my symptoms- frequency and severity, and then recommended a medication. Does your doctor specialize in MS? If not, please try to find one.

Just an encouragement- you are not alone! AND the weight of choosing a medication is NOT only on you. Sometimes we try one and the side effects are bad. Don’t feel like you made a wrong choice if that happens!!! Try another. Keep pressing onward!

There’s a lot to learn about your own body. Keep track (literally take notes or use an app) of what helps you manage symptoms- medicine, diet and even how you avoid stress.

And to answer your question, I have been on Rituxan for 4 years back when I was diagnosed (off label medicine for MS, which means it’s not directly made for MS but is ok to use for it) and it’s a twice a year infusion. I sit in a comfy chair for about 4-5 hours and I am one of those folks with an IV pole waiting for the medicine to slowly drip in me. I am still progressing (getting worse) and I have PPMS but it’s my best option for medicine to supposedly slow down the progression. Rituxan is similar to Ocrevus but I can’t take the latter since I am positive for the JC virus.

Lifting up a prayer for you now. Please keep us all updated. This is a wonderful and kind group of folks.

❤️

[Spenny84 in reply to hopeandgrace]

I will look up if I was tested for that virus. Thank you. It's another question for my book. And she's a neurologist I am not sure if it's her specialty or not. I will look that up too. But she has been very quick with all tests and referrals.

[goatgal in reply to hopeandgrace]

I agree but unfortunately I am not surprised at the neurologist's behavior. When I was diagnosed, I was told that nothing would be available because of my age. (I found the notes from that consultation a while ago: that neuro, at a teaching hospital (!!!) recommended footbaths to remove toxins (junk science, a scam), wearing a copper bracelet, and a lettuce and peanut butter diet. She's now in private practice, but ?????) I knew nothing of MS when diagnosed, so I'm still learning, but I remember my shock that July day, 12 years ago. I've seen 6 neurologists since then, and only one had helpful interpersonal skills.

[Mollyabigail]

Hi, Spenny! A new diagnosis is scary. Been there. It was life-changing, but not life ending. At least you are getting to "choose" your medication. My (less than stellar) neuro said, "We are putting you on Ocrevus." Uh..... ok. It is a rural area, and specialists are hours and hours of driving from my house. I tell newbies to check out the numerous YouTube videos by Dr. Aaron Boster. He uses everyday English to explain many facets of M.S., including the medications you named. I learn a lot from this guy! Bless his heart.

We are all different, but Ocrevus has zero side effects for me. I don't feel particularly 'better' after an infusion, as some do. But Dr. Boster says to think of your disease modifying therapy (like Ocrevus) like birth control -- It does not get rid of the symptoms you already have, but it keeps you from having more! It is going to be ok! Welcome!

[Spenny84 in reply to Mollyabigail]

I will look into him. Thank you so much for the info.

[bxrmom]

Welcome. Things are so different now than when I was diagnosed in 2006; so many options now. I was on Copaxone injections until needle fatigue and I switched to Tecfidera. I have been on Tecfidera (a pill taken twice a day) for about 4 years now. When I first started, I had the flushing side effect so my Neuro said I could take low-dose aspirin to help with that. I took the low-dose aspirin for about a month and now it rarely happens. My white cell number count has gotten low since I started Tecfidera so my Neuro is keeping an eye on it. If it gets any lower, I may have to take a break to allow my numbers to come up. I am JC virus positive but my numbers are pretty low so my Neuro doesn't think I need to switch meds. Hope this helps. I do not know much about the other meds but I know there are others here that most likely have helpful info for you.

[mrsmike9]

Take a deep breath. First off all, we are so fortunate to have a lot of meds available! I'm surprised your doctor didn't suggest one. I've never been told to just "pick one". If your neuro doesn't specialize in MS, go to one! They are the one with the knowledge about how you are doing and the meds! If you (or your doctor) choose one and you find you are having problems from it, don't be afraid to change. My first two didn't like my body (or visa versa) and number three was the one. There are people here who have been on my first two and do fine but don't do well on what I take. I find it very irresponsible of the doctor to not even discuss the options and recommend something.

[Spenny84 in reply to mrsmike9]

The lost she gave me had a lot on it but she only highlighted a few it might have been 6-8 and 2 she said she wanted to save as a second line of defense. So it was really 4 she wanted me to look at. And only 1 was infu6and the other 3 are 2x a day pills. I will definitely look into if her specialty. I was really taken back by the whole thing.

[mrsmike9]

It can be a shock. It's too bad she dumped so much on you all at once.

[Spenny84 in reply to mrsmike9]

Other then that she's been really good. Referrals are getting out in setting my appointments. She takes extra time with me. Tries to help me understand everything. But it was a lot

[lbenmaor]

Welcome to our group! Leslie

[Spenny84 in reply to lbenmaor]

Thank you

[lbenmaor]

You're Welcome.

[Cutefreckles72]

Hi Spenny84 Welcome to the group. MS is a crazy disease. I learned that three years ago and I cried in the Dr.'s office when I was diagnosed with PPMS. After getting over the shock and fear, I started researching what I needed to do to slow down this disease. My suggestion is to do some research on the different types of MS and medications. Everybody is different, and MS affects everybody differently. Hang in there and good luck

[Humbrd]

Welcome to the group. I have only ever taken aubagio since diagnosed 4 years ago. I had some hair loss in the beginning but it all grew back and have had no other side effects and no new lesions. I read one of the messages you said that the doctor decided against aubagio for you. Good luck with your research and choosing what will work best for you.

[MaMere2]

Hi Spenny84. It's so hard to choose a medicine when you dight not understand what each one does. Doing research is daunting when you might not understand the lingo. You barely understand what is happening to you. On top of that the group has given you information. I'm about to do the same thing.I was diagnosed in 1989. The only medicine then was oral steroids or IV steroids which means there was no choice. Since then I have been on a variety of DMT's. I liked Tysabri the best. I got a monthly infusion for 9 years which kept me feeling great. There have been a couple others since then but the bottom line is choosing the best one that you and your doctor have decided on. She gave you 6 options. Two have already been chucked. In reality, you have no idea which one will work for you, if any. Pick the one that works best for you and your lifestyle. I take Mayzent now. It's a once a day tablet. Don't forget you can choose another one if the first doesn't work for you. It's a process like choosing a car or a bed or anything.

[BlanketTime1]

just wanted to say welcome and that the people here are a great resource.🤗