Just Dx w/ MS and Dr recommends Vumerity... - My MSAA Community

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Just Dx w/ MS and Dr recommends Vumerity (same as Tecfidera component) however JCV+ and scared to take this meds. Any experience please?

Love_Hope
Love_Hope

I was just recently dx with MS this Aug 2020. My neurologist recommended taking Vumerity and have not started yet. My JCV test is positive at 1.65 and really scared of the risk of having PML knowing I will be more at risk due to JCV+. I emailed my doctor and ask about Aubagio instead. Im not sure if its the best resort but would love to know any of your experience with Tecfidera/Vumerity and Aubagio? I dont really want to take meds but due to location of lesions (brainstem) dr highly suggested that I should. Please help 🙏🏻 Thank you all so much for your response!

37 Replies
oldestnewest

I have been on seven different DMT’s over 26 years. Last two and half on Aubiago and last two MRI’s stable and no new lesions 👍 Have had no side effects 😊. We are all different and the DMT’s effects us all differently. I was so tired of infusions and injecting I was happy to go oral😁. Good luck on decision and welcome to our crazy 😜 group of MSers. Great group to vent and find out information from those who care and are living the best we can with MS 🙏. Hope you keep coming back and we get to know you 😉🤗 Ken 🐾🐾

Love_Hope
Love_Hope in reply to Kenu

Thank you so much @Kenu! Still deciding and researching options.

Love_Hope
Love_Hope in reply to Kenu

@Kenu, sorry to ask, so far Aubagio had been good with you? May I ask what were your infusions? How do you cope with MS? I was so devastated when initially learned it but dealing with it better now. I am looking forward to learn more with the help of this group 😊

Kenu
Kenu in reply to Love_Hope

Copaxone, Avonex, Betasone, Ribif, all injectable. Tysabri is infusion, Tecfidera had to many side effects and the Aubiago. In that order. All injectable worked for a period of time as as they quit working I moved on to the next. Was on Tysabri for over seven years worked great but had to change because of cancer ♋️ , not related to MS. Then oral Tecfidera and had major migraines, was only on it couple months then started Aubiago. Did 7mg the first month then went to 14mg after that. Like I said earlier I enjoy being on oral after so many injections and infusion. I have heard alot of good news about Ocrevus and it’s an infusion only twice a year! Also there is a couple new orals that I am not familiar with other than ligature. We are all different and each DMT effects us differently but this is a good place to find out about the side effects from people who have used it. None of us are doctors so what you hear here is what honest, caring MSers have experienced. We are a support group and try to help each other deal with MS as best we can. Lot’s of people continue to work for years and others have had to retire early. There are no stupid questions here, we are all about help were we can and alot of us deal with it thru laughter and a positive outlook to life👍🙏🤗🤗 Ken 🐾🐾

Love_Hope
Love_Hope in reply to Kenu

Thank you! My doctor sent me a new form for Aubagio. So far have no new physical symptoms but recently going through stress. Saw some multiple bulls eye rashes on my 3yo daughters arms and leg. Found out yesterday might be Lyme’s Disease according to Pedia 😢 My heart aches more and got scared triple. Still trying to stay positive and keep going 😊

Sorry to hear you were diagnosed. I know, it's a shocker. I was dx August 2018. Still in disbelief. My neurologist started me on Aubagio back then. I was JC virus positive also. The say it's only a small chance of pml. But I decided not to take it. I never thought I would have MS either. Aubagio has helped me as I have had no new lesions. I've only had two side effects from taking it. The first is I had always been constipated and at least now I'm regular because they say it can cause diarrhea but it's just made me regular. Sorry, too much info. 😀. The second side effect could be hair loss. After being on it about 5 months or so my hair started thinning. It was very scary. I already have thin hair. It got really thin. And I almost came off of it. My neurologist office said try to stick with it that it will grow back. Well it did. My hair is back the way it was before and it never happened again.

Read all the information you can and make the best choice for you. Glad you also have found this forum as everyone is so helpful and supportive and we can share and get feedback.

Love_Hope
Love_Hope in reply to Humbrd

Thank you @Humbrd! This is so helpful 😊 My doctors advise Vumerity (updated version of Tecfidera) arrived yesterday and have not started it after Ive learned I was JCV+. Im so glad that Aubagio helped you. I am leaning more now on Aubagio. My doctor said that I cannot be pregnant if I take Aubagio. Do you know any about this? Thank you so much!!

Humbrd
Humbrd in reply to Love_Hope

I have read not to be on it if pregnant, but I already have grown children so it didn't affect my decision. That might be something for you to take into consideration if you plan on having children soon. You could talk to an msaa nurse who might also be able to help you in your decision. Your doctor can also give you a medication that more quickly removes the Aubagio from your system when you plan on getting pregnant.

Love_Hope
Love_Hope in reply to Humbrd

Thank you! Where do I find an MSAA nurse? so sorry just heard of that 😂

Although my neurologist was helpful and great, trying to set up an appointment with an MS Specialist neuro, feel like specialist will give me more insights.

Humbrd
Humbrd in reply to Love_Hope

Multiple sclerosis association of America. I will look for the number.

Humbrd
Humbrd in reply to Love_Hope

Their number is 800-532-7667. That's the main number. They can get you with a nurse that can help you weigh your options. Also they have alot of helpful services and webinars.

Love_Hope
Love_Hope in reply to Humbrd

Thank you! will call them for sure 😊 You are so much help! I appreciate it a lot!

Why I would think Ocrevus is your best bet if you are brand new to the family, ask your Dr if you are JCV+ why this med, there are others. Do not be scared by cautious, and you are doing well by asking us, remember we are not trained medical proffesionals.

Do not b e scaared you will be okay.

Thank you @RoyceNewton! I will ask my doctor about Ocrevus. He didn’t list it as an option not sure why. He only gave me these choices: 1. copaxone 2. Tecfidera/Vumerity 3. Aubagio 4. Gilenya. Probably because I told him I do want to take oral pills as much as possible. And I did research that these 4 actually got the lowest index score of reported harmful side effects maybe that is the reason why he only have be choose between these. Thank you so much! Will definitely read more about Ocrevus.

Frances_B
Frances_B in reply to Love_Hope

Side effects for all of the MS drugs vary from person to person - what one person has heaps of trouble with another will sail through with none at all. PML risk is highest with Tysabri (natalizumab) which is not one you've said you doctor has suggested. There have been cases of PML with Tecfidera, but they are very very few. Here's a link to some info which was posted online a couple of years ago so it's still pretty current. The issue is not so much about JCV positive or negative, but about regularly monitoring lymphocyte levels.

msconnection.org/Discussion...

If you are newly diagnosed the best thing you can do for yourself is to learn from reputable sources, and here's one of the best ones - many people here have done this course and when it was first released in 2019 is was ranked the No 1 course based on student feedback. It started about a week ago, runs for 6 weeks, is totally free, and has been put together by MS experts. It doesn't run continuously but is offered every six months, and the next one won't be until about March next year, so sign up and get learning.

ms.mooc.utas.edu.au/index.php

Pretty much all your questions about the course will be answered in the FAQs. It requires a time commitment of around an hours or two a week, and you can log in any time of the day or night to do it.

bxrmom
bxrmom in reply to Frances_B

I clicked the first link and this is the message on the site after a popup saying the site will close on Sept 30:

--

UPDATED: August 13, 2020

Dear Community,

It is with bittersweet emotions that we announce the closing of the MSConnection.org website as of September 30, 2020, because the platform the website is built on will no longer be supported by the vendor.

Sometimes companies stop making products that we use and love. That is what is happening in this situation. The vendor has decided that creating/supporting community websites is not a part of their business plan moving forward. The technology that makes the community possible (posting discussions, replying, joining groups, etc.) will no longer be supported which means the vendor won’t fix issues when they break or do upgrades for security or functionality, etc.

For years, it has been incredible to see the MS community come together here on MSconnection.org. The site has been a safe space for those affected by MS to share their experiences, ask questions and provide and receive support from others who understand what it’s like to live with this disease.

We want to thank all our community members – those living with the disease to those who have someone they love with MS – for being a part of this experience. We also want to thank the group leaders, peer volunteers and bloggers who contributed so much over the years.

While the website will be completely taken down on September 30, there will be a phased approach to shutting down functionality. Below is a timeline of the phased shutdown process:

Phase I – COMPLETED (June 9)

The following functionality will be eliminated:

• Ability to create new accounts

• Ability to post blog comments

Phase II – Effective Monday, August 31

The following functionality will be eliminated:

• Edit profile

• Create status updates, discussions or groups

• Appreciate or reply to discussions or updates

• Add connections, including Peer Support

• Join or interact with groups

• Send or receive messages

Phase III — Fall 2020

• September 30, 2020: MSConnection.org taken offline

• Date TDB — a selection of blog posts will be moved to the Momentum Magazine website

If you are interested in saving any content before September 30, please: 

• Go to the page you want to save

• Select ‘Print’ from your browser

• Select ‘Save as a PDF’

Since MSconnection.org was last redesigned, a lot has changed in how people connect online. But, one thing hasn’t changed — the need for community. In fact, it is now more important than ever. We are researching, and excited about, new ways for the MS community to continue connecting. Stay tuned!

In the meantime, you can still connect with us and each other in the following places:

• National MS Society Community Facebook Group 

• Facebook, Instagram, Twitter

• Find Support page

If you have questions, comments or feedback, you can email us at community@nmss.org.

Thank you again for being a part of this amazing community. You helped the newly diagnosed, those experiencing a relapse, care partners, families and so many others know that they are not alone. Well done, community, well done!

Sincerely,

The National MS Society MSconnection.org Team

Frances_B
Frances_B in reply to bxrmom

That is correct - those messages do pop up. However, at this time the link I provided still takes you through to the posts and information about Tecfidera, JCV, and PML risks. The fact that the site is closing does not invalidate the information on that page, and I have just now checked the link I posted and it is still working just fine to take people through to the desired webpage - but I'm not sure how long for. I'm not sure why they can't still keep the site and it's content visible but no longer interactive, but it's probably a cost thing, as it should also be possible to migrate the site and it's content to a new environment, but they probably don't want to pay for it.

If someone wants to keep the specific info on that page you can save it as a PDF file by using your computer's web browser to "print" the page as a saved PDF file - it works fine in Chrome - not sure about other browsers tho.

Love_Hope
Love_Hope in reply to bxrmom

Sad to learned this ☹️Thank you for the info!

Love_Hope
Love_Hope in reply to Frances_B

Thank you so much! 🙏🏻Will try to get in the course whenever I get a chance. Been chaotic lately.

Most of the DMT'S can cause PML. I was on Tecfidera for several months but had to stop due to side effect issues. I wasn't on it long enough to see if it was effective but I loved being free from daily or semi daily injections. There are 2 things to consider when your researching the DMT'S. 1) How effective they are at stopping exacerbations. 2)What the numbers of people getting PML while being on the drug.

Your Dr probably reccomend those 2 medications for insurance purposes.

Love_Hope
Love_Hope in reply to JTZES

Thank you so much! 🙏🏻

Frances_B
Frances_B in reply to JTZES

Just a bit of important "hair splitting" - MS drugs do not cause PML - it's actually caused by the John Cunningham virus (JCV). Oversimplifed explanation - the increased risk of PML comes from an excessive reduction in lymphocytes and when these get too low if someone already has JCV in their system (i.e. is JCV-positive) then the virus can run riot and that's when someone has PML. Some of the MS drugs i.e. Tysabri (natalizumab) have much higher risks for JCV+ve people than other drugs do.

mstrust.org.uk/a-z/jc-virus...

clinicspeak.com/understandi...

I was diagnosed eight years ago. I was on Tecfidera for the first year because that was all I was offered by this crummy doctor I went to that diagnosed me. I changed Drs and got on Copaxone. Then the insurance made me switch to generic Copaxone that I don’t like as much as Copaxone. When the doctor saw a little problem with my walking at one of my visits so she changed me to a Aubagio. That did terrible for me. So I went back on generic Copaxone. I tried to get namebrand Copaxone because I think I like that better but my insurance won’t cover that. Tecfidera, for the year that I was on it, decreased my white blood cells to dangerous levels. But I felt really good when I was on it. I am JC positive also

I was/am scared of pml but i believe Copaxone doesn’t make one more susceptible to pml

I also think that Copaxone does not have any immunosuppressive qualities

Mine said that too. Thank goodness that so far my ms hasnt shown more lesions or worsening on my MRI’s. She has suggested/recommended ocrevus but I’m sticking with generic Copaxone till necessary . I like not being immunosuppresed

Thank you! Yes my doctor said that too but he also said the effectiveness has shown less as well in controlling lesions and attacks ☹️

Thank you! My doctor told me that Copaxone has the least side effects and will not lower white blood count hence he normally recommends it for pts that has really low immune system to start with but he also said Copaxone is not as effective compared to other DMTs. I was choosing before between Copaxone and Tecfidera but preferred to take oral compared injections. Thanks again! 🙏🏻

Good luck and best wishes!!! Keep us informed!

Ive heard Lymes disease mimics ms symptoms

I don’t have experience with those meds. I think you should ask what makes that med better for you to be taking, with the risk of PML 🤔 I thought Tysabri was the favorite for spinal lesions, but I couldn’t take it because my antibodies were 3. My MD said my options were only Ocrevus or interferon, after I failed Copaxone (2 years ago). I was on Copaxone so I could be on treatment while pregnant. I know this doesn’t answer your question at all, but I’m here to say that choosing a med is conflicting 😵🤷‍♀️😱 and I’m sorry you’re going through this! Please let us know what you decide and when you start it, etc.

Welcome!

Love_Hope
Love_Hope in reply to kdali

Thank you! I am trying to get Aubagio. I removed Tecfidera/Vumerity and Gilenya to my options due to the possibility of PML. Although I know I cannot get pregnant with Aubagio and doctor advised need to contraceptive pills with it, my husbands supports me 😢 I did think of Copaxone but I prefer taking oral meds. Thank you again! 🙏🏻

kdali
kdali in reply to Love_Hope

Yay!! Sounds like you already have it sorted! 🎉

CV97
CV97 in reply to Love_Hope

JCV+ here too. I've been on Aubagio for 2 years, with only mild side effects initially. I am a terrible pill-taker, but do well to remember it after getting into routine. I have an IUD for other reasons, but it could be something to consider as an alternative to oral contraceptives.

Sorry you were diagnosed with MS but at least you know what is causing your problems & you can now did something to help stop the symptoms. I was diagnosed 15 years ago. I've been on Rebif, Techfedera and Copaxone. I'm now on Ocrevus. It have so far d been the best. Most of my MS symptoms have almost disappeared. Have relapsing, remitting MS(RRMS). You have to take charge of your healthcare. Ask questions, do your research on all the DMTs (disease modifying therapies). When you are taking the ones that can cause PML you should be monitored with blood tests every month. People with JVC havent seemed to have any problems with PML that are on Ocrevus. Techfedera is probably the easiest meds to take as it's oral. Don't try to compare yourself to others because we are all different & our MS is different. But do use a therapy of some kind as they all slow MS progression down. So far there isn't anything that will completely stop it, yet. Remember to eat healthy & get as much exercise as possible to keep your muscles loosened up. You can get a lot of support from this group. If you need to vent then vent, laugh or cry or just need to talk & ask questions this is the best forum I've found that you can do all that here. Good luck in your journey.

Love_Hope
Love_Hope in reply to hairbrain4

Thank you so much! This group yes really actually is helping me.

Thank you all for your responses.

Yesterday, found out my 3yo might have Lyme’s Disease and has multiple bulls eye rashes in her arms/hand and leg. It breaks my heart even more 😢😢We were out in the lake with lots of trees and deers where it was new place to us for my inlaws just brought us there. I normally put off repellant with deet in her, guess I was too late cause she was already playing with the soil when I was able to get her the repellant and might have been bitten. That was last week of August. Because we were in the process of moving I might have not noticed the rash immediately and other symptoms. I am still in the process of accepting that I have MS, now I am thinking more of my daughter 😢 I feel heavy hearted but trying to stay positive. I believe that things happen for a reason and God always has better plans 🙏🏻

Good luck and God Bless everyone. Thank you so much again!

Prayers for you & your daughter. You may have caught it early enough & getting her treatment will make it easier on her & she will get over it quickly. Here is something to ponder...After taking a Bible class on "things happen for a reason" I no longer believe that. I believe things happen because of choices, ours & other's choices & God uses the results to help us. God is not mean, God is love & wouldn't do anything to hurt us, He made that promise after Noah & the great flood. I hope all goes well with you & your daughter.

Sorry to hear your dx. I was on Tecfidera but after a major relapse I was switched to Ocrevus which was the best thing for me. I wish I had been on it sooner.

Good luck

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