The Agony of Decision-making when It’s Time to Switch MS Medications

The Agony of Decision-making when It’s Time to Switch MS Medications

making a difference

I’m agonizing over an important decision and it’s driving me crazy. I’m usually a quick decision-maker, but this one is tough. I have my analytical hat on, trying to look at my choices from a scientific standpoint. Unfortunately, my anxiety kicks in, and my hat is blown away. Let me explain.

My MS diagnosis was in 1986, a time before any FDA medication was available. When the first MS medication, Betaseron (interferon beta-1b), was approved, I was at the head of the line to sign up. It was exciting to finally have a treatment for my disease, especially one that promised to decrease the severity of an exacerbation while also delaying progression. Unfortunately, I experienced severe side effects, so I jumped ship after a few months.

In 1996, the next medication, Avonex (interferon beta-1a), was approved and I pinned my hopes on it working magic on me. I hung on as long as I could but, alas, I once again suffered side effects too tough to handle.

Enter Copaxone (glatiramer acetate injection). It was a winner, particularly when a newer version allowed me to inject three days a week instead of seven. The only side effects I experienced were permanent skin indentations and an occasional flush that sometimes felt like a heart attack. I liked it so much that I became a trained peer advocate for Teva Pharmaceutical Industries, the maker of Copaxone, to help other patients with questions and concerns about the medication.  

I’ve been self-injecting for 25 years, and I decided I finally had enough. I want to switch medications, so I need to explore my options. Please don’t get me wrong; I’m thankful that the MS community now has many choices of medications. I’m simply weary of sticking needles into my body. It’s time to move on.

I met with my neurologist to discuss options. She gave me three: two are oral and one is an infusion.

  • Aubagio (teriflunomide): This is a once-daily pill used for relapsing-remitting MS (RRMS). Doctors need to order certain tests for patients before starting treatment, and liver enzymes are monitored every month for the first six months. According to the Aubagio website, the therapy is “believed to block the enzyme needed for immune cells to keep multiplying at an overactive rate.” Side effects can include headaches, diarrhea, nausea, hair-thinning or loss, and abnormal liver test results.
  • Gilenya (fingolimod): This is also a once-daily pill used for RRMS. Gilenya is used to reduce the frequency of exacerbations and delay accumulation of progression. Side effects include increased risk of a slow heart rate (particularly after the first dose), increased risk of serious infections, lower number of white blood cells in lymphocytes, progressive PML (a rare brain infection that usually leads to death or serious disability), macular edema (a vision problem), swelling and narrowing of blood vessels in the brain, breathing problems, liver problems, and skin cancer (including melanoma and basal cell carcinoma).
  • Ocrevus (ocrelizumab): This is the first medication approved not only for relapsing MS but also for progressive. This is exciting news! This twice-a-year infusion is said to reduce relapses, slow progression (there have been reports of disability improvement), and reduce brain lesions. Side effects can include risk of cancers (including breast cancer), infusion reactions, and illness such as upper or lower respiratory tract infections.

Discuss treatments options in our MS Drugs forum.

After suffering from side effects for the last 18 months from various gut diagnoses, I’m afraid to add more to my list. I’m tired of the daily health struggles that never seem to dissipate. I know I must soldier on and make the switch. It’s quite confusing and a little scary to take the plunge, but I have to face the music soon. I decided to help myself by doing the following:

  • Research: I’ve spoken to representatives from the pharmaceutical companies and read recent updates about each medication, particularly from recent presentations at meetings for the American Academy of Neurology. I also turned to trusted friends in the MS community to hear their thoughts, even though I know our MS and reactions to medications are different.  
  • Journal: I created a list of priorities, such as what I’m looking for in a medication, what frightens me most, and how I feel about each choice. I listed the pros and cons of each medication.
  • Communication: I am blessed with a husband who is a health partner. We have open and frank discussions about each medication — a conversation that continues to this day. I hope you have a trusted health partner in your life. It’s important to lean on someone you trust.

I need to make a decision soon. It’s not easy, and it’s certainly not fun. If you have any thoughts you’d like to share, please do. I’d love to hear what you have to say.

NOTE: Please speak to your doctor if you are starting or switching to any medication.  

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Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.

62 comments

  1. Jay says:

    Speaking from personal experience I would suggest that you experiment with gilenya. The reason I say this is because I was in the same shoes As You Are not too long ago jumping from one medication to another medication to another medication. I’ve had multiple sclerosis for 15 years and I’ve had every medication and I can tell you gilenya is an incredible medication. I took this medication for about 6 months and then switched to rituxin due to constant relapses using gilenya. But nevertheless it made me feel incredible. I’m now on rituxin, which is ocreveus kinda, just a bit cheaper on my insurance and incredible medication. Twice every 6 months, 3 years on rituxin and only one short relapse over a humid weekend. Hope my input helps you in some way shape or form lol

    • Thanks for sharing your story. I’m sorry you couldn’t stay on Gilenya but glad you had good side effects from it! It’s also great that you are on Rituxan because it is so much less expensive than Ocrevus. I hope it continues to work for you.

      Thanks for sharing your story. It helps a lot.
      Cathy

    • Lisa says:

      “…then switched to rituxin due to constant relapses using gilenya.” Why would you recommend Gilenya if you had constant relapses while on it? How is that an “incredible medication”?

    • Terrie says:

      Not sure why you would recommend a med that you had to give up due to continued relapses. My neurologist is very good at explaining the difference in relapses and symptom flares due to past in jury and real relapse.

  2. Rick Boehm says:

    Aubagio was my switch from injections and have had zero side effects. Just had my MRI and no increase was detected. Also take a Amprin for my drop foot. Been diagnosed for 6 years but the doctor thought they missed 10 years earltier. Have been very successful with current meds. Hope this helps.

    • Terrie says:

      Thank you. I am on Avonex for 19 years. My doctor wants to change me to Aubagio. I am te Fri
      terrified at the long term effects. Sorry about typo. I have 5 grandchildren and do not want to get infections more easily. Any advice?

  3. Angela Tinnin says:

    I will start Ocrevus injection soon. I have to get an authorization so my I Insurance will pay but I’m claiming it will work for me.
    I can’t wait!!

  4. Susan Nellis says:

    I have felt the same way!! No-one to help me make this decision so I am staying on Copaxone. Not crazy about taking something that may or may not mess with my heart as I have had heart surgery!!! My father died of a heart attack and my mother of a stroke…so what should I do!?!!

    • Yes, the heart side effect is also scary for me. That is part of the difficulty of this decision. I’m glad you made the best decision for yourself. I hope you continue to do well.

      Best to you always~
      Cathy

  5. Sheila Boen says:

    I too have been on the A, B, C’s of treatment choices. I quit each one because of side effects. I now take Aubagio. Nausea was the only side effect, but now I know not to take it on an empty stomach. I have had no new brain lesions since taking Aubagio. I hope you find a treatment that is right for you.

    • I am so happy to hear that Aubagio is working for you. Thank you for sharing your story with us. It helps a lot. I hope you continue to always do well on this medication!

      Best always,
      Cathy

    • Terrie says:

      Thank you that info is very helpful! You can take Tylenol on an empty stomach they say, but it will hurt your stomach if you take it on an empty stomach.

  6. Kathy says:

    Well Cathy… I’m Kathy too…. Also in the same boat and Neurologist appointment in a few days. My life is stressful and I feel awful most days sadly. My new Neurologist recommended Aubagio! My retired Dr. suggested Gilenya. Another person said she heard good things about the last one. I also took Copaxone for a couple of years. My family doctor retires in a few weeks who is wonderful and supportive and my significant other decided it was too much to cope with MS and me as I was getting worse and so he jumped ship leaving me feeling worse and heartbroken. So, like you, anxious about the drug issue… have decided Aubagio is safer for me perhaps due to the cancer and heart risk with my family history and having a “sensitive” body reacting to so many drugs. I may not choose to go ahead as scared of side effects and may give myself another 6 months but scared to wait! Not sure what to do … scared and single. Wishing you well in your decision making too Cathy! Science sounds best but not perfect yet… only time tells which we don’t always have the luxury of! Glad you have your partner helping you. I’m sure you keep up with adverse affects reported on government websites but the risk/benefit ratio is tough to figure out … we can always change the drug if we need to again! The Aubagio fear for me is it stays in your body for two years after stopping it, unless one experiences a really serious adverse affect in which case they give you another drug/charcoal to remove it faster. Hmmmm what to do?! Hair loss another worry but apparently grows back after 6 months. Good wishes.

    • I am sorry about your significant other not being strong enough to stay with you, Kathy. That must be very difficult for you. I wish better days ahead for you.

      As far as the meds it’s such a tough decision. My neuro did also recommend Aubagio but the hair loss, which I’m already experiencing, scares me. Actually, all the side effects scare me!

      I wish you well in your decision making and I hope and pray we both do better going forward. Best to you always, Cathy

    • Suz says:

      Hi Kathy,
      I’m in same boat. On my own. Can no longer tolerate side effects. I had cancer & now trying all natural approach. No other options left. I don’t trust big pharma due to not disclosing everything patients need to know. My anxiety off the wall trying to figure it out. Need a break. Instead, Living my life, not obsessed with ms. Can’t die from ms but these drugs caused other health issues I can die from. To me, not worth being guinea pig any longer.

      • I can understand how you feel. Sometimes I feel the same way. We are told that if we don’t stay on a medication our MS will continue to work its mysterious ways in our bodies so they say we need to do something to fight progression and flare-ups. I don’t want to take that risk, but it’s a personal choice and I certainly respect yours.

        I wish you good luck going forward and it’s my hope that we all find the right path for our health.

        Thank you for sharing your thoughts with us. It is greatly appreciated.
        Cathy

      • Kim Haller says:

        Good Suz!! I was diagnosed in 1996 and just quit taking Copaxone. I took it for over 20 years with success, however, my doc thinks that I am more of Secondary Progressive now. We were going to try Ocrevous but because I am a melanoma/breast cancer survivor as well, my doc thinks it’s a bad idea bc of it’s possible link to cancer. I’m thinking about Rituxin infusions.

    • Terrie says:

      I have the same fear Kathy. I also am really concern ed about the risk of infection and TB. I am staying with Avonex until I am sure. Keep us posted!

  7. Garnet says:

    Hi Cathy,
    I was dx in 2005 with RRMS, and started with Avonex, I had a horrible reaction to it exactly 5 hrs after every injection. So I then switched to Copaxone which I have been on ever since (other then while I was pregnant and nursing). I am actually in the process of switching to Ocrevus, I remember going to a Walk MS event in 2013 and seeing reps for the two oral meds you mentioned and the side effects were a no go for me. In full disclosure my hubby works for Genentech (maker of Ocrevus) so I have known about it going through the trials for a long time. Also, because of my DH’s connection I am able to find out exactly how many people have really had the bad side effects. With that info, plus my not wanting to give myself a shot anymore, plus my MRI’s which sadly have looked worse and worse over the years, I’m ready to get more aggressive and give this a chance. Don’t get me wrong, I am super nervous about it since I have two little ones, and I’m scared I will have another allergic reaction like I did with Avonex, but, I am still gonna give it a go and hope for the best. I just got an email that the drugs were received at the infusion center, so should be happening real soon! Best of luck to you in making your final decision.

    • Good luck with the infusions. It’s all so scary to me. I wish we all had the ability to find the kind of information you get from your husband’s connection. That would be very helpful.

      I wish you well going forward and thanks for sharing your story with me.

      Best,
      Cathy

      • Garnet says:

        Hi Cathy,

        I had my first infusion yesterday! I had a little flushing, and then I did get some hives with the third increase of the Ocrevus in the IV drip. They stopped it gave me some more antihistamine, hives immediately went away, they waited 30min, then added the Ocrevus back in at a slower rate. No more problems. I was very tired afterwards,and had a headache. Woke up this morning feeling great. Got the kids ready for school and everything. I’m still taking it easy and not pushing myself but definitely feeling good.

  8. Anne says:

    Ocrevus will be available where I am from later this year, and I’ve asked to be put on it. My situation is, I have PPMS and in my earlier stages I was offered to participate in a trial for it and my knee-jerk reaction was no. At that point I was barely experiencing symptoms & the idea of having a chemo-like infusion as a guinea pig was a no-go. Now my mobility is significantly affected (my drop foot is starting to affect both feet, I only can walk a few feet at a time and I’m totally dependent upon a mobility scooter outside of my home), and I deeply regret not risking the trial. Now I fear I may be too far along to be allowed to try it at all.
    The problem is, we really are at the mercy of the drug companies. I feel it’s a damned if you do, damned if you don’t situation.
    (BTW, I AM on a few medications to treat symptoms: anti-depressants, bladder control-mirabegron, baclophen & tizanidine.)

    • Yes, we are at the mercy of the drug companies. We are like guinea pigs and have no control over that. Scary and frustrating, indeed.

      I hope you can still get on Ocrevus. Keep pushing for it.

      I pray you do well going forward and I hope you will feel better in the coming days and years. MS can be a cruel dictator but keep on top of your doctor to get what you want/need/deserve.

      Best to you always,
      Cathy

  9. Lynette Rajterowski says:

    I recently went through this same dilemma. I had taken Avonex for 17 years but always had side effects. I tried plegridy to decrease the side effects to just twice a month instead of weekly. The side effects were getting worse instead of better. I was afraid to change from an interferon that I had used for 19 years and stayed stable on. I finally bit the bullet and tried Aubagio fearing the hair loss the most. So far so good and no more injections! Good luck to you with your decision. It is a very difficult one and scary. Side effects are nothing to blow off. These medications are truly intense.

  10. mark says:

    I was on Rebif 2003 with the initial diagnosis of MS, through 2017. the MS progressed. I’ve had 3 injections of Ocrevus so far. the MS is no worse with no flares, but about the same. no side effects from the injections at all. still waiting for symptom improvement. everyone is different, but Ocrevus injections for me are benign.

  11. Gary says:

    You don’t indicate whether you have relapsing or progressive MS. I have tried most of the drugs you listed. Fortunately I have not had side effects, but they have not done much either. Aubagio is very nice because it is very easy to take a pill a day. I am now on Ocrevus, because it is supposed to work on progressive MS. I get an infusion every 6 months, which is annoying, and I am not sure it is doing anything. The only thing that seems to help for movement is Ampyra. Good luck.

    • Thank you for sharing your thoughts, Gary. I have relapsing-remitting MS since 1986. I do hope that Ocrevus will help you. I know those infusions are a pain – a long day. I’m glad Ampyra is working for you.

      Here’s to better days with MS. Thanks for being here~
      Cathy

  12. Gregory says:

    Hello,1st was Tecfidera, too strong on stomach, diarrhea bad. 2nd Gilenya,no side effects, did nothing 4me.3rd Plegridy,absolutely HORRIBLE.4th Ocrevus,best so far. No side effects. Get Botox for Distonia,actually helps.Ampyra helps,doesn’t last long.Im progressive.A new drug called Mavenclad is in Abu Dhabi.Doctor intrested in it. He will not give me anything PML related. GREGORY 😁

    • Thank you for sharing the list of medications you have tried. It’s so hard getting on a medication only to find it doesn’t work. Grr. I hope the Mavenclad will work for you. I will keep a good thought!

      Thank you for sharing your story with us.
      Best always~
      Cathy

  13. Teresa Barr says:

    Focus on your MS symptoms- MRI brain and spinal scans.

    Copaxone (1 year) may have kept me from more brain lesions- but I had a lot of spinal scaring this walking/ gait disability. Tasabri (18 months) helped somewhat, but now switched to Rituximab (1 year) and in Remission.
    I am 55, diagnosed in 2014 with RElapse remitting – I am under the care of a neurologist at a MS execellence of care center They have 16 years of experience and data of patients using Rituximab.

    • Teresa~

      Can you explain more about what you mean by “Focus on your MS symptoms- MRI brain and spinal scans.”

      Glad about Rituxan. Wish I could have that as an option b/c it’s much less expensive. Glad you are doing well on it and in remission! Wonderful news~

      Cathy

  14. me says:

    I endured 2 months of B-seron, too! The side effects were bad for me. After that, years of copaxone injections was my drug. The copaxone didn’t prevent the progression to disability. I was in a rituximab trial for SPMS a few years back. That went OK.

    You should look at my current drug, cladribine (Mavenclad is the oral form trade name). Besides its good efficacy, convenience and safety, it’s really tolerable. I self injected it at night and went to work the next day – no unpleasantness.

    An MS group in London has been looking at cladribine for a long time. They’ve developed protocols to derisk you from getting lymphopenia or opportunistic infections. This “case for cladribine” was written before the oral form was approved for MS in Canada & EU, it has a lot going for it: http://multiple-sclerosis-research.blogspot.com/2015/10/suppose-there-is-therapy-for-ms-that-is.html

    • Thank you for all of the good information/studies/links. It is appreciated! And glad you are doing well on Mavenclad.

      My neurologist gave me the 3 options based on my history and comorbidities.

      Thanks for sharing your story and thoughts with us.
      Cathy

  15. MP says:

    No mention of Tecfidera here. My daughter has not had one relapse since on it (about 1 year and a half ago) and since she is pediatric, more relapses are common. Anyway, she’s had good results so far. Interesting article Johns Hopkins MS Center had today about tecfidera and how its working and perhaps explains (thorough study needed regarding this) why a low carb/low sugar diet may be good for MSers.

    • Thank you so much for sharing your story and for the information about the article. I am glad your daughter is doing well on Tecfidera and I hope she continues to do so, well, forever!

      Best to you~
      Cathy

  16. R says:

    Was on Gilenya and failed treatment. Switched to Ocrevus and am ever so happy with the decision. Gilenya comes with the known risk of PML and skin cancer. Ocrevus comes with the possibility of PML (none yet) and breast cancer.

    • Those reasons are exactly why I’m not thrilled about the choices. I have cancer in my family and am anxious about the possibilities.

      I am glad you are doing well on Ocevus. I hope you continue to do so.

      Best always~
      Cathy

  17. Carol Chambliss says:

    Cathy,
    I am where you are. Diagnosed in 1991 took a while for it to sink in. I had a brother and sister disabled with MS so I knew exactly what I was dealing with. I tried all the same meds as you. My last was Copaxone I had a terrible allergic reaction after being on it for years. I have not been on anything for the past few years. I get around and can drive with my left foot gas feed. I use a walker in the house and a cane when I’m out and about. I too feel like I should be on something, it is a dilemma for sure. At 75 – I have a lot of living to do and stay active. I have an appt. with my nerologist to discuss my options….stay strong!

  18. Cherie Holt says:

    I am also in the process of changing. I was diag. 5 yrs ago. I also have Stiff Person syndrome, a rare autoimmune disease. I’ve tried Abagio, Tecfidera, and Ocrevus. Had problems with all. Now he suggested Gilenya. But I only have one eye. It’s not worth the risk.I’m on IVIG for the SPS. And that has the MS symptoms under control. I’m told I have to take something to keep the MS from getting worse. But I’m doing well without any. I’m considering trying Functional Medicine, to see if I can find out if there is something I can do or take to help. Has anyone else tried it? Any suggestions on meds that I haven’t tried?

  19. Angela Stogner says:

    Diagnosed in 2010, I was on Copaxone daily and then 3 times a week until 2016. My neurologist then recommended I switch to Tecfidera because he was excited about the possibilities of reducing the number of active lesions my MRI showed. Another neurologist I trust also thought I should switch to Tecfidera. I had been leery of the possible side effects and safety concerns of the medication but I tried it anyway. The first pill made my head feel like flames were shooting out of it (not the much more mild sounding flushing indicated in the literature.) A couple of more days of slight warmth in my head then eased to no side effects. But a couple of months later I developed a painful itchy rash that took a long time to go away. My doc said to stop taking Tecfidera and thought I should try Aubagio. I’ve been on it now for 15 months. I did have some hair loss which has all grown back and my latest MRI had no active lesions at all. Staying on Aubagio!

  20. Bonnie says:

    I so understand the distress. Having worked in oncology research/clinical trials for many years, my analytic brain goes into overdrive. Try to remember what schedule, potential (and I stress potential–look at those percentages) side effects. What benefits did the data prove for what % of people? The data will continue to mature so keep an eye on that. Although there have been great strides in treatment with some beneficial outcomes, I find I am frustrated with the state of the science. I try to choose the next step as a sequence of increasing drug intensity if something more efficacious is needed or do I only need what I considered to be a more lateral move due to side effects. But that’s me. There are no home runs.

    • Bonnie~

      Your response is quite helpful since I am not particularly well-versed in science. It makes complete sense and using your POV I am going to go back over the statistics to figure out which medication I should choose. Your last sentence is perhaps truer than any I’ve read – there are no home runs. I hope in our children’s lifetime there will be only home runs.

      Thank you so much for your response. I sincerely appreciate it.
      Best to you~
      Cathy

      • dave shipley says:

        I’m responding on behalf of my wife Stephanie who was diagnosed with PPMS two years ago at the age of 69.I agree with Bonnie there are no home runs –yet. However, there may be some game changers. Ocrevus is appearing to be that for Stephanie. In May 2017 we participated in the local Walk For MS. Stephanie made the journey in a wheel chair. She had her first set of Ocrevus infusions during the summer. Virtually no side effects other than some minor itching. She had her second infusion this past Feburuary. We participated in this years walk a week ago. Stephanie made the journey with her walker. She is currently vacationing with high school girl friends in Hilton Head. She walked to the beach and around the beach without a walker or cane. And yes she did get tired and she did take advantage of a friend’s arm on the way back. She doesn’t have the fatigue she was once experiencing. She’s not using her cooling towels much anymore. Ocrevus has definitely been a game changer for Stephanie. Good luck with your decision. We hope and pray the best for you.
        Dave Shipley

  21. Karen Evans says:

    Hi my name is karen
    I’ve had remitting ms for now about 12 years I’ve taken tecfideria and others with awful side effects my neurologicist wants me to take something else but at the age of 50 I have decided it’s my life and I will live it with no more tablets , infusions etc so no more horrible side effects
    And taking holidays regularly helps no end with my mental health I would rather have a happy out look than been ridden in bed with side effects I’m thoughts are with anyone else with ms making a decision like mine it wasn’t easy but life changing

  22. Kathy says:

    Maybe consider a second opinion on therapy change. Surprising recommendation in my case w a new lesion…. stay with what I’m on until I have a flare up.

  23. fl says:

    Diagnosed 2011 but neurologist thinks I had it since 1971 (I think that or up to 5 years earlier). At the first visit he suggested no medication would be needed if diagnosis confirmed as they have most benefit if started early in the disease. However, after tests confirmed the MS, Gilenya and Copaxone were suggested/recommended – Gilenya only just approved in my country during the period of diagnosis.
    I did research and discussed the situation with 2 MS nurses and a general practitioner.
    I decided that the medications MAY or MAY NOT help with relapses and progression. I MAY or MAY NOT be a guinea pig on Gilenya. At the time I had been incorrectly diagnosed with a heart problem and I did not see it as being compatible with Copaxone.I MAY or MAY NOT get side effects worse than the disease itself.
    The timing certainly was not early in the disease to maximise any medication benefits as had been suggested at the first appointment. All three consulted during my decision making phase agreed with my thoughts – that was to not take anything after considering all the potential pluses and minuses.
    Six and a half years later, the only additional progression is foot drop now and then, and the fatigue is constant rather than intermittent.
    I am still content with the decision not to take any medication.

  24. itasara says:

    Very interesting discussion. I have been on Copaxone for 12 plus years. I was diagnosed in Oct. 2005 I was 57 at the time. I had no clue anything was wrong with me. Turns out my almost 20 yr. old daughter was diagnosed with MS three years prior. We had NO IDEA where this came from. No one we know of had ever had MS in our family except for a distant cousin of my husband, so of course we figured had to be his side of the family. Then 3 yrs later I had the same symptoms she had, Transverse Myeltis, and I knew the day I woke up with it that I must have MS. So my daughter was on Avonex. I went on Copaxone and had no intention of switching. I like the idea that, although I wasn’t thrilled with the injection part, it had the least side effects of the other choices at the time.My daughter had the flu-like symptoms e week. I had pretty much had no bad symptoms.
    All my initial lesions on MRI were inactive. I had another MRI in 2007. Since then, my neurologist didn’t see any reason for another MRI b/c he said he wouldn’t change a thing b/c I really had few specific relapses other than OAB (but I did have 5 children) and occasional MS hugs and some wobbliness standing on one foot. My daughter on the other hand was doing so well her doc took her off her MS medications last year or so at about age 33! Finally I had another MRI last week or so out of curiosity, my neurologist said. Now my neurologist wants me to see a specialist. I had no active lesions, but I had a few more than 11 years ago and more brain shrinkage- that is a disturbing fact. The appointment is in a couple weeks. I don’t know what she is going to say, but I am guessing a change in meds may be one of her suggestions.
    I just saw this interesting video on another MS article from this MS news today about Ocrevus, and it seems to me that Ocrevus may be the best choice for me if indeed I have to switch meds (which is something I was not prepared to do.) It has a better track record for diminishing brain atrophy or at least preventing it from getting worse and according the the video presentation at the MS Rocky Mt. Center, it has few side effects like Coaxone.
    I understand the anxiety expressed in this article about switching. It is kind of an unknown of what will happen if I do switch. I am not sure the scientific world still knows enough about MS. I have met people who were diagnosed before DMTs and never took any and are doing quite well. Sometimes I wonder if I never took medication if I would be doing as well as I am now. Apparently the Copaxone was not great on preventing brain shrinkage. I would expect some atrophy at age 70 which I just became, but the report said it was more than what should be expected at my age.
    Thanks for listening and thanks for your article on switching meds.

  25. Robyn Farwell says:

    Cathy,
    I feel like wrote this article is so many aspects.

    Long story short, I had been on Rebif for yeeears. I talked with my MS Neurologist and asked if I could switch to an oral due to bruising starting at the injection site. I went off of my Rebif and started with the Aubagio on March 28, 2018. I had no side effects (I am a magnet to side effects!) that I know of. It’s a once a day pill and I take it right before bed.

    I have to say that with the Aubagio, there were a few days I felt like I didn’t even have MS (strangest feeling EVER, as I haven’t had a “Non-MS” feeling day in over 30 years). With this being said, this was the best transition for me when changing to a new medication.

    Best of luck to you!

  26. Reinaldo Colón says:

    Diagnosed in 1986, used almost
    all medications mentioned. Now on
    Tecfidera and Ampyra for about 3 years. My most important problem now is my lack of balance. I don’t know if to change to Ocrevus or any other medicine tha can help with my lack of balane. Suggestions?

  27. Leaugeay Taylor says:

    Cathy, Hello, Thank you (and thanks to everyone) for all the great info!
    I too am in the midst of switching. I was officially diagnosed in 2006, started taking Copaxone (tried a couple of the interferons, with bad reactions for a couple of months in the middle). I stopped taking Copaxone when I was going through Breast Cancer in 2010 and switched to Gilenya. All seemed to be going well, just a couple blips, til late last year, some nasty skin cancer, now ready to switch.
    Just met with my MS spec/neurologist; considering just doing IVIG therapy or doing Aubagio. After reading the opinions from folks I am leaning towards Aubagio. I am a big fan of the oral med thing. The hair loss doesn’t bother me at all, already have a wig collection, lol.

  28. Toni says:

    My fiancé has had MS since he was 31 and is now 48. The only medication he has taken is copaxone (for the past 10 years). He had an MRI in March and the last one before that was 9 years prior. There were no active lesions and no new lesions in 9 years. His lesions are mild to moderate both on his brain and spine. He is considering changing to Aubagio at his doctor’s recommendation. His doctor’s office said copaxone isn’t working, but my question is this….if there haven’t been any new lesions in 9 years or active lesions isn’t copaxone working? Are the other medications better for mild to moderate lesions? I’m trying to understand as much as I can so I can be a good partner for him. Any information is appreciated.

  29. Tom says:

    Hi Cathy and everyone (or not). I’m posting this rather late in the discussion, but maybe someone can still get something out of it, and maybe me too. I’m 60 now. 1st attack in 1988. DX in 1991. Betaseron in 1995 onwards till today. I was relapsing remitting, don’t know what I am today. The every other day injections since ’95 have naturally, been a hassle. Various temporary issues like skin irritation and occasional random flue like reactions even until today. No problem however, just take a couple ibuprofen and slip under the covers and sleep it off. I always do my injections before bedtime. I did fine symptom wise since starting Beta when I was using a wheelchair. Essentially, no more progression on MRI since then (except when I took Avonex for 9 months, then I switched back.) (That neuro was influenced by the Avonex drug maker, he’s gone now). So my last neuro suggested Ocrevus, but to give it a year on the market first. Then I moved and have a new Neuro specialist in Hershey. My symptoms in the past 5 years have gotten worse (harder to walk, balance, not pee, etc.). Ampyra walking pill didn’t help. Current wisdom is, according to several expert sources, that when you have MS lesions and you get older, the functionality of whatever repair and/or adjustments you may have made, can deteriorate without any new progression. I can therefore see how I and others would think I am secondary progressive. But MRIs are the same for the past 15 years. HAS ANYONE HEARD OR EXPERIENCED ANYTHING SIMILAR? So since Ocrevus works on primary progressive and relapsing remitting, I am eager to see how it affects me. In addition, I am really really really looking forward to NO MORE SHOTS! Other than the symptoms, it’ll seem almost like normal again! So for you newcomers, my advice is as follows: I also have a cousin, my age, similar diagnosis, who chose no medication due to her fears. She just had a knee replaced, and is discovering the strength she thought was gone because of the bad knee, was actually gone due to the MS. So there is an advantage to this medication. It is difficult because the normal expectation is to get better. And that might happen if the progression stops and you can work yourself back to normal (like I did). But these meds primarily work by stopping or slowing progression (works differently for different people). Bottom line, you have to treat the side effects, stay on the meds, and study your MRIs! Please respond should you have any experience switching over to Ocrevus or know anything about increasing symptoms without MRI change, in later years. Good lick everyone! Tom

  30. sara says:

    Hi Cathy – thank you for this letter. I am curious what you decided? I am facing a similar choice as i’ve been on copaxone since 2003, with wonderful success. i’m tired of shots and have been recommended to try aubajio. still weighing options.

  31. Jose Valderaz says:

    I was diagnosed w/ms summer of ’18. Sucks. Dizziness, fatigue (from what i believed was from overexerting myself) & blurred vision. Co-worker advised me to get checked. I did. Initially my symptoms were manageable until Oct. ’18 when i developed “drop foot”. I had been already taking Tecfidera since July ’18 & honestly feel no better. Realistically i’m worse. The lessions have gotten smaller & flare ups, i’ve had experienced 2 since being on med. I try to exclude myself from anything that can trigger flare ups but let’s be real. I’ve changed my diet (months ago) & i’m considering ocrevus or aubagio & like many the warnings of possible side effects do more than worry me. I’m 33 & i’m trying to stay positive but 2018 was a bad year. Just felt like venting

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