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

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

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.

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!!

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!?!!

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.

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.

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.

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.)

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.

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.

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.

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 ?

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.

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

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.

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.

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!

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?

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!

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.

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

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.

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.

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.

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!

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?

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.

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.

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

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.

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

Wow! Reading through all of these messages, it is good to know that I am not alone in this frustrating MS battle! We all have the challenge of defining our ‘new normal’-and I am sure that we all miss our ‘old normal’, at least I do :)

I started with Copaxone when I was diagnosed in 2006. Didn’t like the shots, decided I didn’t have MS. Hmmm. My daughter earned her nursing degree a few years later, saw my uneven gait, and suggested that I go see the neurologist. Then I started Tecfidera. Many exacerbations later (and IV Steroids), my neuro switched me to Ocrevus. My second infusion will be in July.

I feel a little fingertip and toe sensitivity, but slight enough to ignore. A bit blurry in my right eye, but meeting with Opthamologist. I can’t blame everything on MS, just following through with Doctors to address issues.

Tec side effects were rough on my bowels, and I was so bery tiredevery day :(

Ocrevus is a long day, but I do feel pretty good.

Life is good :)

Hi there. I'm new to this site and to a diagnosis. Trying to figure out which medication on which to start. I appreciate you all sharing your stories. I have so much to learn.

Hi. I am a 49 year old female. If it helps anyone ... I was diagnosed in early March 2019 with relapsing MS. Had a first flare ever that began Feb 24 with a sensitive spot on back of head that over 2-3 days turned into numbness of left ear, neck, shoulder, arm, hands and fingers. I have 1 lesion (older) on neck at C2. I have 1 lesion in head in right posterior limb. I have 1 lesion in head in left temporal periventricular white matter. I have a few tiny T2 hyperintense lesions in the periventricular and subcortical white matter of both hemispheres. Completely recovered everything from arm issue within 3-4 weeks. No new major issues, some minor symptoms come and go daily, but I can do everything I want. I decided on Aubagio (Dr recommended too) and started 1 month ago. Chose Aubagio since I’m 49, was concerned about cancer risk (other females in my family have had female cancers and hodgkins), and my JVC test came back low but positive. So PML risk concerned me. Again, I’ve only been on Aubagio 1 month, but we’ll see how symptoms go, and how repeat MRIs go, and if I have any flares. Only side effects thus far are gurgling stomach sometimes (helps to take it with food), quicker pulse for a few minutes upon waking up, and softer stools. No issue with hair thinning yet—had some already just from getting older. Not really concerned about that. More concerned re: the more serious side effects. Went for first liver test yesterday and will see how things look. My diet was great before, but I did change in March to mainly paleo/mediterranean based. Dropped anything I really shouldn't be eating—no excuses or exceptions (except maybe Christmas, or birthday). Wahls book helped. Remaining calm, cool, rested helps. But it’s early on for me, so we’ll see.

I was diagnosed in 1998 and was on Copaxon until last year, I was tired of the injections and the flushing reactions. I was switched to Aubagio. I worked through the hair loss, but now I am having peripheral neuropathy to my hands and feet, I see my neurologist next Thursday. I am stopping the Aubagio,byes, a pill is easier but the neuropathies are intolerable for me. I have reviewed the other medications, and really due the cancer risks, I’m going back to Copaxone I will use the 40mg dose three times a week. I have been called back on my mammograms too many times to tempt using a medication that can increase my risk. I’m 57, I work out four times a week, ride my horses at least three times a week, I work, I’m a Grandmother and basically life is good. There is also a book out by Dr.Charles Mok that talks about using the antibiotic Minocycline that I want to talk to my neurologist about. This is basically not fun!

Hi! name is Fran & have had MS since 1995. Done avonex for a few years (horrible), been taking rebif for 10 years; even though it is not an IM(intramuscular) but subque, it is still a shot & I am tired of shooting myself. In the dilema of making the switch, also. Neurologist suggests Tecfidera; he literally praises it. Went to primary today & he said: "I know you are tired of the shots, but you have not had a flareup in over 3 years. Though tired, why risk dealing with possible side effects & start having flareups?" And the side effects of Tecfidera are really scary. So I have decided to keep shooting myself up & stick with what I know is working.

Well here we go. I’m 57 year old female with RRMS. 19 years and counting. Did Avonex, Rebif and switched to Gilenya 8 years ago. My white blood count and lymphocytes are way low. My JVC test came back positive for PML. So no Tysabri. My choices now are Aubagio or Ocrevous. Darn these side effects on both.
Questions for all of you - 1. How bad is the hair loss?
2. Did any of you go on Ocrevous with a family background of breast cancer? Myself-I’ve had a lumpectomy that had precancerous tissue.
What a pain changing meds!,

I feel like I’m the only male here. I was diagnosed March of 2018 started with copaxone but didn’t have an improvement. My balance and speech made my neurologist direct me to ocrevus I took my fist infusion today and I’m just happy to be off of the 3x/week shots!!!

Hi all,

I was diagnosed July 2019, and I'm about to go on my first such drugs. I'm a little nervous about how much it may impact my handling common colds etc the kids bring home from school each week. Given the MS specialist is presently pegging me as relapsing remitting, very active, she's recommending I go on Mavenclad (cladribine) rather than one of the lighter weight ones.

Hi I’m Diana, NJ, 52
I’ve been on Avonex for over 20 years doing pretty well with fatigue my biggest issue. I can not inject myself one more time.

In talking to me neurologist, he strongly suggested I switch to
Ocrevus. Side effects make me nervous. He feels I have plateaued on it and is afraid it will not continue to keep me at my level. Ocrevus Seems like a totally different approach targeting B cells instead or T cells and can’t help to wonder what will happen if I’m no longer targeting the T cells. Ugh so confusing for me

First ON attack in 1996, I was 36. Confirmed MS in 2001with spinal tap. On Avonex for 14 yrs, Plegridy for two years, Tecfidera for 3-4 weeks-couldn’t handle it, started on Aubagio in 2017, mild diarrhea for first 3 weeks, mild hair loss but recovered it beautifully but now I have new lesions and don’t know if I should stay on it and hope they will go away - or - switch to Ocrevus, Kesimpta or Mayzent. I’m still mobile and work, but did have two falls within 5 years of each other. I really appreciate all of your comments and wish everyone the best of life and luck.

Hi! Sorry I know this is an older post, but my partner has RRMS (diagnosed in 2016) and has just found out that fingolimod is affecting his liver functions, so he will need to try something else. He was on Tecfidera but had the same issues. With the pandemic world we are facing at the moment, trying to get a face to face appointment with his specialists is a nightmare so just thought I would come on here and read through your personal experiences. They have all been so helpful! So thank you, from a very grateful, very confused partner. :D i think we are going to go with the injections and see how that helps him. Fingers crossed!

Any updates after November 2019 as to use of these drugs as wife is on beta and wants to stop the every other day injections, which she has been on since it came out as was in the clinical trails.

Hello,

I know this is an older post but I am sure the issue of switching MS meds is one that is always relevant. I have been on Avonex, Copaxone, Rituxan, and now Ocrevus. My MS had been very asymptomatic for many years, (was Dxd in 2005), but there was definitely disease activity as shown in MRIs. My MRIs for the last 3 years have shown no new lesions so the drugs seem to be doing their job (Rituxan, Ocrevus) but in these 3 years I have seen a definite decline clinically. I used to be able to run with no issues now it is tough to walk and I can no longer jog/run. I am still not using any walking aids but if I continue this way I am sure I will get there. Besides this which is really my main concern I have also seen more an increase of other symptoms such as fatigue, that electrical shock feeling all over my body, etc. It is difficult to tell whether this is normal disease progression or the if these B-Cell targeting therapies are to blame...Anyway, I believe it to be the latter. I have also seen many others on this medication with these type of issues. Because of this I have decided to stop the Ocrevus and move on to something else. I just had my last infusion about two weeks ago so I need to chat with my neurologist to see what is next. I cant do Tysabri because of JCV... Just so many options, but when you look at the long list of possible side effects it can be scary. :(

Leo,

I am experiencing the same thing. No new lesions but plenty of activity since I started with Ocrevus. I wrote this article in 2018 and while it needs to be updated the facts remain that we have to do our homework on the medications we are considering, speak with our doctors, and as a team decide what's best for us. I don't know which DMT I'll switch to. Here we go again! I'm just glad we have so many options. Best of luck to you, Cathy

Hello,

I have been diagnosed with MS 7 years ago. The first Neurologist I went to, told me not to take any DMT. But is those 7 years I have had 2 more flairs, and a few new lesions in my brain. I have seen 3 other Neurologist, they all told me I should have started DMT's 7 years ago. 2 Neurologists have suggested Plegridy, and the other Aubagio. I am trying to research which is better for me, and what has least side effects. Please note that I do have panic attacks.

Does any one know what a negative Anti -AQP4 and negative Anti -MOG mean?

Hi Cathy,
So glad you started this forum, and reading everyone’s comments about their experiences is of great help to me. I was diagnosed with relapsing MS in 1990, and have been on Betaseron the entire time. But now I am so over these injections. I reviewed the various options in medications. My neurologist wants me to try Aubagio, and even with the hair loss side effect, I am leaning that way also. I will be making the decision soon as my appointment with him is in August.
Deborah