I am a new RRMS diagnosis. 40 yrs old, presented with Optic Neuritis. Its on my chiasm so it affected both eyes but one worse than the other. Unfortunately after 9 months its not fully recovered and I am told it never will.
I was told to choose a medication and I have it narrowed down to Ocrevus, Tecfidera or Copaxone. Truthfully I am scared on going on any medication but I am strongly urged to do so. Can anyone provide any tips on choosing which medication and how you made your way through this journey? Thanks in advance for your time.
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Greatful25
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I am sorry to hear that your eyesight has been affected by ms. Perhaps it may still improve in time. I played it safe and started with Copaxone because it had been around longer with a fairly safe track record. I am now on Ocrevus, an infusion every six months is so much better then daily injections and lipoatrophy. If I had it to do over, I would start with Ocrevus or one of the other newer drugs that have a higher efficacy then the older ABC drugs. The important thing is to get started. My best to you.
So sorry to hear of your dx, but Welcome to Our Group! 🙂
Boy can I relate to your "terror" newly dx with MS, but I'll share a bit of my experiences. FWIW, I was dx at age 25 (way back in 1994) with vision issues (or so I thought too). I was having "doubleish" vision in my left eye. I went to my PCP; he found out that my left eye wasn't moving the entire way left (which was causing the vision disturbance). He said "something is wrong with my brain stem." He sent me to the neuro "rule out" MS. . .NOT! 😱
Back in 1994, there were NO TXS widely available in the US (Betaseron had just hit the market and was dispensed by lottery). The MRI and neuro exam CONFIRMED MS DX. BUT I WAS TOLD THAT YOUNG WOMAN TEND TO DO VERY WELL WITH MS. To live my life. . .blah blah blah. I actually was told to AVOID MS groups (wtf?). Diagose & Adios!
Fast forward three years later (I am just turning 27. . .I have VISION PROBLEMS again?). Go back to the neuro. . .3-year follow up MRI shows SUBSTANTIAL "Silent" progression. He tells me I AM LUCKY. . .THREE TIMES. ..because the many more lesions "are in parts of the brain" that I don't use (. . .we use all of our brain. . .plasticity (rewiring). ..atrophy, etc. He says start Avonex ASAP! What?
Needles. . .I HATE NEEDLES. . .yet I have managed to maintain my Avonex therapy for 24 years now. Avonex has been my "long-term companion" so to speak. I hate it. . . .yet love it at the same time. . .my silver lining in my dark MS CLOUD. Although I've had a FEW MILD relapeses 1994 dx, 1997 start tx, 2003 ON & 2007 left-side numb), my MRIs have been stable.
My 28-year dx anniversary is coming up this Memorial Day weekend, I know how "blessed" I am indeed. It stinks you have MS. But, YOU HAVE TX OPTIONS. Do EXACTLY what you are doing. RESEARCH AND REACH OUT TO FELLOW MSers.
YOU WILL FIND YOUR FOOTING ON YOUR NEW MS JOURNEY!!!
Welcome to this wonderful group of caring people Greatful25 ! Sorry for the reason. There is a lot of info here. I started on Copaxone (daily dose until the 3 times a week came out). I was dx in 2006. My 3 year anniversary on Tecfidera is coming up. Keep doing your research to decide what would work best for you.
I am also on Tecfidera with my 3 year anniversary in May. Read everything you can . The anxiety can delay the process a little. Do your research and pick one. You can always switch to something else down the road. My Dr. put me on Tecfidera which is working out great.
Welcome! I have both eyes affected also. My first drug was Copaxone because I needed something I could take during pregnancy (I also was starting fertility treatment) and it was my only option. When I failed that drug, my only options left at the time were interferon or Ocrveus, and looking at the effectiveness Ocrveus was the clear winner. I was able to stop it and have another baby easily (with fertility shots of course), and then resume treatment. I recently changed to Kesimpta, which is similar to Ocrveus and I really like it! I made charts of the drugs and listed most common side effects, relapse reduction, and progression reduction. I highly recommend finding a group of people who are on the drugs you’re considering and see what the real world experience is like, and to get tips on managing issues that may come up during treatment. You can also search older posts on this forum for a specific drug.
There’s sooo much anxiety with choosing a med, and you’re not alone!
Also, there are clinical trials now for acute and chronic optic neuritis...the drugs are mostly add on to current therapy, so there’s some hope in 10 years that you just might regain some of what was lost. We just have to tame the MS beast while we wait patiently 🙃
ocrevus is my 2nd drug of choice,i was taken off of my first because i had new lesions on my brain, i was on a very old drug betaseron..so far so good, does your dr suggest anything that he believes that will help your eyes of another medicine.ms is famous for in addition to a treatment another med that may help your condition that may help with your eyes but meant for something elsetalk to dr. best to you we are here
I have optic neuritis and when it gets bad and the pain flares up I am given an anti-inflammatory eye drop called Voltaren (diclofenac) to use to reduce the inflammation which reduces the pain.
Just some blurriness. Don't worry too much until you have gone through the other things it could be with your Dr. There are a lot it could be and not all vision issues end here. Know that.
I was dx with RRMS after many years of symptoms, many visual. I started Copaxone and hated every second of it. I hate needles and simply cannot stick myself. Fortunately, my husband and teenage son had no problems sticking me. 😜 I was never so grateful to develop an allergy to a medication. I've been on Tecfidera for about 4 years and am much happier. My MS is pretty stable these days, although the vision issues remain annoying. I hope you will find this group as helpful as I have! Keep researching your options and find a neurologist that listens.
Hi and welcome! I’m very sorry to hear about your diagnosis and ON. The medication options are overwhelming (at least they were for me). The DMT you choose really just needs to work for you (best option, fits your lifestyle, is effective for you, etc.) I’m fairly new to MS as well. I was diagnosed in 2019. I started on infusions of Rituximab (horrible reaction) and now I’m on ofatumumab (same as Kesimpta but an infusion and similar to Ocrevus). I think most importantly, start something soon. There may be a trial and error period with the meds. Best of luck and I’m happy you found this community. I have learned a lot from the people here ❤️
I started with Copaxone and then went to tecfidera. I had multiple relapses and got new lesions on both. My MS is very active and needs a strong DMT. I went to tysabri and was on it for about 3 years. I’ve been on ocrevus for about 2 years. I’m hopefully starting kesimpta next month.
Good luck! We’ve all walked your walk and know how scary it is. Do your research and ask questions. The meds are so much stronger and efficient today! Most of the meds I’m on now weren’t available when I was first diagnosed.
I started on Tecfidera about 9 years ago because i knew nothing about MS, i was scared, its 1 of 3 meds my crummy doctor offered, and of those 3 it’s the only one my insurance would approve. I got nervous because my white blood cell count went down really low in the year i was on that. I have since switch to an MS specialist doctor and I went with Copaxone because it was the lowest strength one she offered and I didn’t want one that was going to keep me medicated for six months in case it didn’t work. Because Copaxone is taken every Monday Wednesday and Friday. But afterEight years on Copaxone I got a new lesion so I switched to Ocrevus. I just had my first Ocrevus infusion dose about three weeks ago or two weeks ago. So far so good I guess have not had an MRI since being on Ocrevus yet. But Ocrevus is supposed to compromise your immune system so maybe I am in the same boat as I was with Tecfidera, who knows
I was diagnosed back in 1995 at a tender young age of 22. I, too, presented with vision issues (optic neuritis) but only in one eye. I mean everything was black. Could not see anything except for maybe some movement and such out of my peripheral. On the day of my appointment with a neuro-opthalmalogist, (I wasn’t diagnosed yet), I was sent straight to my local hospital to start a 3-day treatment of Solumedrol through iv. I have to say, I noticed improvement in my vision during those 3 days and eventually it returned completely. That particular doctor didn’t start me on any treatment for MS because she said we would wait until I “needed it.” I needed it then!! When I finally found a doctor who was closer to home for me (the 1st doctor was a couple hours away), he said NOW is when you need it. I wasn’t given choices, I was told that I would be taking Avonex. Yes, it’s a needle but only once a week. I did great on that for several years but when there was a slight change in my MRIs, I was switched to Rebif. Three injections a week. During the time between medications I also had issues with one eye. It wasn’t optic neuritis and it was in the opposite eye than when I had optic neuritis at diagnosis. This time it was slow nerve function which caused my eye to not turn all the way left or right, which in turn, caused double vision. I was treated for that, as well, with steroid ivs. Everything went back to normal. But the doctor never gave me a choice about what to take for maintenance. The only input I’ve ever really had is when my doctor wanted me to change from Rebif to Aubagio because I’m bruised all over from the injections. I do not like my bruises but I turned down the Aubagio option simply because I feel like “if it ain’t broke, don’t fix it.” I can deal with the bruising if that’s my only side effect. So, this whole, long story is to say that I know nothing about the medications your doctor has recommended and I continue to take Rebif. Good luck with whatever you choose and I hope things go well for you like they have for me while dealing with this life long nuisance called multiple sclerosis .
Thank you for sharing. Sounds like you were given a detailed medication path which must be a bit refreshing in some ways. Best of luck as you continue on your journey.
I was diagnosed with RRMS at and was on Copaxoneuntil I was rediagnosed with NMO. Copax was a great medication and I only had one event while on it. Because on you Optic Neuritis I would recommend you check with your neurologist and ask him/her to check if you have NMO. When I started having eye problems my neurologist send my medical records to the Mayo Clinic and it was determined that I had Optical Neuritis or NMO.
NMO certainly concerned me early on as I went down the rabbit holes of the internet but based on my MRIs and lack of the antibodies they have ruled it out.
I was diagnosed at 51. I started on Copaxone (when it was a daily injection) and remained on it for 17 years. I have been stable for a quite a while and am now experimenting with taking no DMT.
Everyone’s MS is different, so my story may not match anyone else’s. But I believe that Copaxone was the right therapy for me. It was not a miracle cure; nothing happened overnight. But in the long run, I think I became and then remained stable because of Copaxone.
My only advice would be, don’t decide on the basis of whether you have to inject Copaxone. Look at the data, then decide.
Thank you. I think I lean a bit towards one over the other based on the injection daily but this is a good story for me to be reminded of the drug vs. the way it is administered.
Wow lots of feedback, well may as well give you my opinion. Simple choice the strongest and I think the latest OCREVUS. There will be side effects it is a serious drug, I believe histamine with the infusion helps, ask your Dr for sure, good luck . Do not take Tecfidra or Copaxone they are very old drugs. Full disclosure I take Tecfidera and my dear wife takes Copaxone, both over 20 years with Relapsing-Remitting ms (RRms) Take ocrevus, and I am still not a doctor.Royce
the newer one is more effective in reducing the relapse rate and that is what YOU want. The fewer relapses the less damage is done, and that is the only reason. You want to have as few relapses as possible. That should ALWAYS be your aim
I absolutely agree with this. It's your brain that's getting damaged at every relapse so you want to stop those relapses from happening as much as you can with the strongest DMT you can tolerate.
So many different experiences! I was started on Techfidera which lowered my white blood count dangerously. Next, Copaxone. Never so glad to have a bad reaction! Don't care for needles at all! I've been on Aubagio ever since and love it. One tiny pill I take every night. No bad reactions!
Each one of us have a different story and different reactions. Try to get on something fairly quickly to slow it down.
Hello there. Sorry to hear of your vision changes caused by MS but it's great to see your doing all the research on what options there are. Just reading this has given me so much insight I had been frightened to look for. I was diagnosed in 2017 at the age of 36. Looking back my symptoms were there but not very noticeable until May 2017 when
I ended up in ER 14 times before anyone took me serious by then I had double vision , urine retention and my left leg had paralysis.
As some one else mentioned I was put on solumedrol via IV and my vision got better over my 21 day stay in the hospital. My leg began to have feeling and I was put inpatient rehab to relearn all the day to day things MS had taken from me.
My neuro specializes in MS and suggested we start on copaxone 40 mg 3 times a week because it was the "baby" drug with less side effects and had been around long enough for her to really trust it.
I've been on it for 4 years this July and I do not have any complaints. The first few weeks were tough, accepting having MS was one battle then the reminder every three days when injection time came. But today I can honestly say for me, this works. I have gone two years with zero lesions. My neuro actually told me in March she had to go back and check all my scans and spinal taps to confirm I did have MS.
I am thankful for the guidance and couldn't be happier on copaxone.
sorry to hear about your diagnosis. We all experience MS differently so it has to be your choice. But I can share my neuro's recommendations:
- pick the strongest medicine that your body can tolerate (I think some DMT are no good if you test positive for PML) and that works with your lifestyle (I personally did not feel like poking myself several days a week). Goal is to stop damage to your brain and get to a place where there's no new lesion and no active lesion in your brain.
for me, it was Ocrevus, and it worked. I had a "moderate to severe" load of lesions. All stable after 6 months. and stable since (about 3 years).
The neuro also explained that in the past, they would start treatment with the lightest possible medicine, then if it did not work go to stronger medicine. Protocols have been completely reversed, start with the strongest medicine, to stop the ms progression as early as possible. It makes a lot of sense to me, it's your brain that's under attack!
Hello, diagnosed summer of 2019, started ocrevus Sept 2019. My ms specialist said treat aggressively in beginning when a lot of damage is done because once it is done it is irreversible. My blood work was positive for jcv virus so tysabri was not an option although once a month infusion would have been too much for me. I went with ocrevis 2x per year high efficacy in hopes to keep my ms from progressing at least slow the progression.
HelloI don't know too much about optical neuritis (O.N.) but I would like to share with you the opinion of my second neuro doctor on the isuue.
He told me you have to make specific exams to check if your ms symptoms was due to optical neuritis. In this case Copaxon therapy would be wrong. In my case it was negative (no optical neuritis) so I continued my Copaxon therapy. Pls take this into account since Copaxon may not be appropriate for O.N.
You have been presented with 3 DMT s by your neurologist? They all have good advantages. One is an injectable, one is an oral, an one is an infusion. The schedules to be administered are different: daily, or 2 a year. I have been on all three and it all comes down on efficacy. Best of luck on your choice, and keep smiling.
part of the decision will depend on your JCV status of course but honestly, if I still could be taking it, I would still be on Tysabri. That DMY was a magical one for me. it's a once a month infusion but it worked so very well that I had zero relapses and so many lesions that magically disappeared. I started out with a LOT of lesions.. we are talking nearly 200 lesions in my brain. after a year on Tysabri, that number was cut nearly in half. Unfortunately my JCV status suddenly changed from inconclusive at .41 and skyrocketed up to 1.35 so my neuro took me off of it because I had a huge spike in white counts at the same time.. not sure what happ0ened or if it was because of the Tysabri or not but he felt it best to discontinue me and switch to a different med from there. Unfortunately everything has gone downhill since then. Right now I am on Mayzent. I had a relapse in February and my latest MRIs are showing new activity so IDK.. I am dismayed at this point. I am unsure where to go now with any of this.. Tysabri was a magical medicine tho.. Check for things that have to be done ahead of time as well.. like I think with Ocrevus you need to have a mammogram done because of breast cancer risk.. and all of them you need to be tested for TB and hepatitis... A, B and c.. so its kinda a pain in the butt to get started on any of them but some more so than others
I understand your concern, and really hope your eyesight improves. I also had optic neuritis as my first MS symptom. They put me on IV steroids & then an oral dose of steroids which helped. This was at a time when there weren't a number of MS medication options. I went on Avonex and stayed on it a very long time. I would recommend getting on a medication and staying with it through the good and the bad if it shows it is helping you. I'm a firm believer in organic food that is healing and good for your eyes and overall health, positive thinking, good sleep, less stress, laughter, joyful activities... Wishing you all the best as you make this important decision.
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