Skip to Accessibility Tools Skip to Content Skip to Footer

To Take Meds or Not To Take Meds….

New medications can make a world of difference in the treatment of any disease. There are scientific breakthroughs every day and they are learning how to better treat illnesses all the time. MS is unique because unlike many other illnesses, there is no cure, and the medications given to patients are only to help slow progression and treat symptoms such as fatigue, vision issues, and pain. While there are often incredible benefits from medications, both DMD’s (Disease Modifying Drugs) and medications to treat symptoms, there can be some pretty nasty side effects as well. As a patient you have to always be your own advocate. It was something that took me a while to understand, that I was in charge of my own health and that no doctor could make me take something that I felt made things worse on a day-to-day basis. Ideally, you and your doctor (and anybody else involved in your treatment such as a significant other or caregiver – who are often one in the same) will work out a treatment plan together that can change based on your tolerance to each medication and treatment you choose for your MS.

Varying types of DMDs

There are varying types of DMD. There are injections, monthly infusions and pills. They are coming up with more all the time, and with the help of generous donations as well as ongoing fundraising efforts, groups like the National Multiple Sclerosis Society are bringing more funding in for these important discoveries as well as much-needed awareness. We all hope that someday there will be a medication that not only prevents progression, but that will help to cure this horrible disease we all live with.

Copaxone

I have been through the gamut on DMD’s. I first tried Copaxone, which is a once-daily injection. My almost immediate reaction to it was a welt at the injection site. After a few days of trying different sites, and getting the same welts, as well as big red hot spots, I talked to my MS nurse about it and we decided together that it was not the right course of action for me.

Avonex

Next I tried Avonex, another injection. Similar results. I apparently wasn’t handling these injections well. Which, by the way, was fine by me, as I hated giving myself a shot. I had to talk myself into it every time.

Tysabri

Next my neurologist and I discussed my options and he suggested that I should try a once-monthly infusion, Tysabri. First, however you have to get tested for PML (Progressive multifocal leukoencephalopathy), a rare disease that is typically fatal, affecting the white matter of the brain. I tested positive, meaning I was more at risk to get PML if I took Tysabri, so I opted not to try it, as I didn’t feel the risk was worth the potential reward.

Gilenya

After that test I tried Gilenya, which was the latest and greatest of the DMD world, a pill at last! There were, of course, possible side effects that come along with this drug as well. Some were manageable, flu-like symptoms, headaches, the norm of medication side effects. Some however, such as swelling of the optic nerve, were not quite so livable. So I have been on DMD hiatus for a while at this point.

Tecfidera

Just recently I had to switch to a new neurologist and he has put me on Tecfidera, or as I had known it up until recently, BG-12. It is a twice-daily pill, and the most recent on the market. I can’t speak to its effectiveness on a personal level as it is only my second week, but so far I’ll take these side effects over any others I’ve had with any of the other medications I have tried in the past.

Medication is a personal choice

It’ll take some more time to decide if I will stick with Tecfidera or not, but either way, I will keep working with my MS Specialist to treat both the progression of my disease and the symptoms that come along with it. And I will continue to hope that there is someday a cure, or even a medication to stop progression. How many of you are on a DMD? If not, is it a personal choice or is it due to medical reasoning? What do you think of the current treatments out for handling your MS?

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • alchemie
    4 years ago

    I’ve tried 3: Copaxone (2006-2007; didn’t work after 7 months), Rebif (2007-2011; found flakes in it but had more relapses on it), and Tecfidera (2014; only for 3 weeks- couldn’t handle the side effects). I haven’t been on anything since but haven’t had any relapses since 2011 anyway. *shrug*

  • mastervalerie
    6 years ago

    I am on Copaxone 20mg. daily.I am screaming for a pill form but afraid to switch. been on the shots that leave severe swelling at all seven spots.) for 3-years now since 2011. But reading some of other peoples comments are making me wonder should I ask my doctor to put me on a pill? I read one woman is now taking the latest pill twice a day.” Tecfidera”any advice? from my M.S fans??

  • Nikki Kennedy author
    5 years ago

    It is always worth talking with your doctor if you are unhappy with your medications. It is something you should research and discuss, only a medical professional can help you determine if a pill would be the right DMD for you. Best of luck!

  • mamabear.and.cubs
    6 years ago

    I was dx’d in 1998 and as of today I am 52 years old. I was not actively taking the meds at first, not until about 8 years ago my MS took me down a quick spiral. I now live my life in a wheelchair, I still have function in my left arm/hand and only approximately 50% in my right (that really sucks because I am right handed).
    I started out my DMD with Copaxone and had the same rash experiences, then to Avonex this one was way to hard for me to give myself injections like that, off to Betaseron I went and again rashes (and of course other…let’s say annoyances I experienced with each).
    Anyways my neurologist has me on Tysabri. That seems to be doing pretty good , at least for now. I do keep having a fear of ending up with PML (Progressive multifocal leukoencephalopathy) I can’t help that.
    I still find it strange that even through all I have been through I still see myself with a good attitude and outlook on everything.
    🙂 aka Peggy

  • Nikki Kennedy author
    5 years ago

    Peggy – keep up the good attitude! I believe that it does a lot for you and you sound really positive! Good for you, and here’s to hoping the Tysabri continues to go well for you.

  • Livingston
    6 years ago

    KRose: I am with you with the UCK factor relating to the MS drugs. I took Avonex for 14 years – with not giving myself that many actual injections. I had a couple different boyfriends do them. I had an MS friend’s husband do them (between boyfriends!). I got an auto injector. I occasionally had my primary care dr. do them. I HATED giving them to myself – made worse by hitting my leg bone once with the needle. Still can’t watch when I get my blood drawn! Wimp.
    I used to put the needle on my leg, close my eyes, press and push down the plunger and pull it out – and then open my eyes. Forget the push it in a little, pull back to look for blood…. Nevvvah!!
    So then it was on to Tysabri – 5 treatments, 3 UTIs and $3,000 later and I was DONE. Then on to Tecfidera. Suffered thru the multitude of side effects for 4 months – until decided couldn’t take it any more. The final straw was elevated liver enzymes. That was 7 weeks ago. And one of the numbers has gone UP – the other down by a VERY small amount. VERY not good. NOT happy.
    I’m taking a break. Not worth it.
    So I hope Tec works for you – watch those liver numbers. Have you experienced water tasting awful as a side effect? That hasn’t gone back to normal for me either. Awful.
    Sick of the whole business. Bah humbug!!!
    I’m normally a pretty optimistic person; but it has been a tough few months. Between the end of June and mid-August two good friends died, my dad died and my 17 year old cat died… sigh.

  • Nikki Kennedy author
    5 years ago

    Livingston, first of all, my sympathies are with you in all of your recent losses! It is always difficult to lose a loved one (be it family, friends, or pets – who I consider family), but to lose so many in such a short period of time must have been really tough! I’m also sorry to hear about all of your bad experiences with the meds, that so often is the story we hear.

  • adele
    6 years ago

    I have decided at this point to forego DMD’s. I do take medication to help with the symptoms. I have done a lot of research on the matter and at this point I am trying a natural approach. Unfortunately my family doesn’t necessarily agree with this, but this is my decision in the end. I wish you luck with the Tecfidera. That will be my choice of DMD if that time comes. Stick to what you feel is right for you. God bless.

  • Nikki Kennedy author
    5 years ago

    Adele, it is your choice to go all natural and if you feel that is what is best, good for you. As much as we love familial input, in the end it is YOUR body and YOUR MS which means it should be YOUR choice as to how you treat it. Best wishes to you.

  • mastervalerie
    6 years ago

    Are you taking cannabis? I heard it really helps with people with M.S.just wondering….

  • Nikki Kennedy author
    5 years ago

    Mastervaleria, Medical Marijuana is not legal in the state I live in. There are some folks who do use it to help ease their MS symptoms however in order to do so you should check with your local laws.

  • Pvilla
    6 years ago

    I am 45 years old and was diagnosed with MS after a bout of optic neuritis in June 2013. I have never had any symptoms but I have the diagnosis of MS six weeks ago I reluctantly decided to start medication although again I’ve had no symptoms and my eye is back to normal after a three day injection of IV I decided that that was the best course of action. I decided to start Tecfidera–it’s been 6 weeks. I exercise every day as I always have I continue to be symptom-free and I am blessed to not have had any side effects from this medication sometimes I wonder if this is all a dream but I will continue to follow the recommendations of my neurologist and hope and cross my fingers and pray every day that I will continue to stay healthy. Thank you for your post I know I was conflicted on whether to start medication or not I hope the Tecfidera works for you!

  • Nikki Kennedy author
    5 years ago

    Pvilla, sometimes it all feels like things happened so fast, it can be difficult to know if you made the “right” decision. But just know, you are never stuck with whatever choice you’ve made and if you don’t feel like it is still in your best interest you can always talk to your neurologist and change things up. Nothing is forever. I hope that the Tecfidera is working well for you. Keep up the exercise and healthy lifestyle, that can only help!

  • Sue
    6 years ago

    I truly believe that exercise and diet are critical. I was diagnosed in April 2013 at age 54 (on my birthday!) with various relatively mild symptoms of feet slightly numb/tingly, bladder urgency, stiffness, and balance problems. I decided to try Tecfidera but that’s not for me b/c I’m a Type 1 diabetic and it caused wild and huge swings in my sugar levels. So in January, I’m going to try Gilenya. I can’t do Tysabri as I’m jcv positive. My neuro only prescribes the oral meds or Tysabri as a rule…she said they’re available and more effective than the shots seem to be, and easier to take by and large. Meanwhile I continue exercising regularly with a trainer familiar with MS; he has me do the craziest things to improve balance and of course, we do LOTS of core exercises, along with some strength/flexibility thrown in. I have lost more than 30 pounds since this started, so that’s also a good thing! Best wishes to you!

  • Nikki Kennedy author
    5 years ago

    Sounds like you have a pretty good attitude, and that’s great! I also believe exercise and diet are critical, in life and in helping control our MS. Keep doing what you’re doing, it sounds like it is only doing you well.

  • Susan
    6 years ago

    I was diagnosed in March 2013 and thus I have the benefit of all those that came before me. My neurologist skipped over all the First line drugs and said lets hit this hard if I was okay with the potential side effects. He recommended tysabri is I was jcv negative and, if not, tecdifera. After I was confirmed negative and some wrangling with the insurance co, I started on tysabri. I entered the infusion center, stumbling along, holding walls and generally off balance all the time. What a difference 6 months make. I have no trouble walking, my balance is back, I am no longer exhausted although I am not “normal,” I feel like a new person. My doc says they are seeing fantastic results in people like me where tysabri is used as a first line drug. I had no side effects and it has been great for mr.

  • Nikki Kennedy author
    5 years ago

    Susan, that is fantastic! So glad to hear the Tysabri has done such good things for you! It is always fantastic to hear a positive experience with a DMD, and you sound like you are much better off having had some time on it. I hope you continue to improve and get positive results!

  • jbain510
    6 years ago

    When I was officially diagnosed in January 1989, all that was offered was “treating the symptoms.” Betaseron became available, I chose to wait for Avonex. When it became available, I started immediately. I injected once a week for 5 years. Then switched to Copaxone for 10 years. I began taking Tecfidera in August. So far, so good.
    I do believe DMDs have helped my progression slow and maintain.

  • Nikki Kennedy author
    5 years ago

    Sounds like you have followed a good path for you, and that’s great! Hope the Tecfidera continues to help.

  • Faith French
    6 years ago

    Treating our MS puts us between a ledge and a cliff with little hope. The more I research, the more I find support to NOT trust pharma. Consider decades of proven lies, false data, hazardous practices, and their resulting patient harms and deaths. They just get more creative in order to afford their outrageous fines while increasing their profits. And all the while steadily increasing their “legal” protection. The pharmaceutical industry currently seems broken beyond regulation agencies control.

    Overall, my good health is more assured with avoiding pharmaceuticals when possible. No one cares about my health more than I do, and I will research beyond what I see and hear? The more read, the more likely some truth will appear.

  • Story Maker
    6 years ago

    jbain510 You and I were diagnosed only months apart. I started Betaseron in the first lottery to get it. After taking that for years I was on Tysabri for 18 months. Three weeks ago I started Tecfidera and the side effects have been minimal. It’s hard to know what it would have been like without them. I just go by the study results.

  • Nikki Kennedy author
    5 years ago

    Story Maker, good luck with the Tecfidera. How have you done so far as far as side effects?

  • DianeD
    6 years ago

    Nikki, you described the DMD dilemma perfectly. When I was diagnosed 19 years ago the dmd of choice was Avonex. I read about it and watched a video my neuro gave me. The companies who manufacture the drugs really have slick propaganda.

    I chose not to take the Avonex and was good for many years.

    When we moved to our current location I had a new neuro. I started to feel guilty to not take the DMD’s which the neuros push really hard. I also, for the first time felt I was experiencing some effects of MS. So…..I agreed to Copaxone and even though skeptical I stuck to it faithfully. Like you I have welts, redness, soreness, etc. I don’t get the horrible reactions some do, but I am increasingly worried about finding a place to stick! I’ve actually had hard spots under the skin develop and can’t even put the needle in.

    There are seven injection areas, but I find I can only use four of them which means a lot of repetition. I see that other people have been injecting for many years and wonder how that can be.

    I also not that the worst symptoms I’ve experienced have occurred after I began a DMD.

    It is, for me at least, a real dilemma.

    Thanks for the helpful post.

    Diane

  • Nikki Kennedy author
    5 years ago

    Diane, thank you for sharing your story! It does certainly sound similar in many ways to mine. It is a constant dilemma as to whether or not we should take a DMD, which one, are the side effects worse than our MS symptoms, and more. It is something you should continue to research and discuss with your doctor. Maybe a DMD isn’t right for everyone, and often you’re not on the right one for you. Every person is different, make sure to be your own advocate!

  • kelly w.
    6 years ago

    I started out with Avonex. I was on that almost a yr. I had the flu like s/e every week until the day before the next injection.
    Then I tried Copaxone. Allergic reaction immediately at first injection.
    Then I went with nothing for several yrs.
    Next was Rebif. The headaches were too intense, as well as chest pain.
    Then more time on nothing.
    Next I tried Tysabri. The first infusion before halfway through a serious reaction!!
    Next was chemo. My legs hurt so bad I couldn’t motivate!
    Tecfidera finally came available. So far, so good! Yay!! Keep your fingers crossed for me!

  • Nikki Kennedy author
    5 years ago

    Kelly, fingers crossed! How are you doing on Tecfidera? You sound like you’ve certainly been through the gamut of meds!

  • Linda H
    6 years ago

    I was put on Rebif in the beginning and I had help with the injections for a couple of years then it was just me and I hated sticking myself so I went off of them on my own so for 2 years I only had my muscle relaxers then I decided; I better get back in some kind of treatment so after a few discussions with my Dr. We decided on Tecfidera the 1st seven days I took 120mg 2xs a day with no problem then I was taking 240 mg 2xs a day I was so sick to my stomach I couldn’t hardly get out of bed so my Dr put me back on 120 mg2xs a day for a month then he had me take 1–120mg in the morning then 240 mg at night I had no problems now after doing that for a few weeks I go back on the 240 mg 2xs a day starting Tue I’m hoping there won’t be any side effects like before I’m hoping that going to a higher dosage slowly like I did the 2 nd time pays off and if any side effects pops up I pray that they will be mild I will let you know

  • Nikki Kennedy author
    5 years ago

    Linda, I hope that you are doing better with the Tecfidera now than previously. How are the side effects now (if any)?

  • Dawnie
    6 years ago

    To take or not.. Isn’t that the million dollar question. I was diagnosed 6 1/2 years ago at the age of 32. I has been seeing a neurologist for a year prior to my diagnosis. I am not much of a complainer so I had trouble communicating with my doctor. MS symptoms come and go so it is hard to really explain them some times as “not ordinary” Flares of course are easy.. Mine began with numbness on one side of my face and a really sharp pain in my neck, I thought I had a pinched nerve. This lasted a month. I was told I might have MS, then I didn’t. Circled back again, I did have it. After a year of back and forth, I confirmed this diagnosis with 2 additional neurologists that specialized in MS. My first drug out of the gate was copaxone. Other than the welt sites , I had very few side effects. I had a few days of a really rapid heart rate but once I realized why it was happening, I calmed down and the reaction was over in about 15 mins, just like I was told. I also had one episode of being incredibly cold. Cold like I had never felt before. Bone chilling, teeth chattering. It was pretty intense, that lasted about 15 mins as well. Copaxone seemed to work well. Of course I didn’t enjoy the daily injections, it was almost as if I also had a daily reminder that I has MS.

    I remained on Copaxone for 4 years. I did not have any additional lesions during this time. My husband and I decided to try for a baby. I got off of Copaxone in March. 2012. Sept 2012, I had my first flare since being diagnosed, at that time 5 years prior. Coincidence? I don’t know. Freaked me out, saw my neurologist and began a steroid treatment for 3 days. ( I will not to another steroid treatment, I don’t like the way it makes me feel) I have not had a flare since.

    I have been off all medication for almost 2 years, I am still not pregnant. We are seeing a fertility specialist ( doesn’t have to do w the MS, more so our age. I am 38, my husband 42)
    I follow a very strict diet- low fat, no sugar, gluten free, very little dairy and I exercise regularly. I also follow a vitamin regime which includes a lot of Vit D. Diet and exercise were never anything that my neurologist would speak to me about. I researched and read everything I could about diet and exercise and MS and autoimmune diseases. These 2 things- we can control. It gives me back that sense of power I sometimes feel has been taken from me and I encourage you to find a healthy balance. We do have limitations but you complete what you can. I haven’t been snake to run in years, I just challenged myself to try it again. I can’t run far or very fast but I can run about 1/4 of a mike before my leg starts to drag and my hip feels like it is gonna fall off. I know when I need to stop but it felt great to just feel “normal ” for that short period of time.

    So, I guess I really didn’t answer the question, meds or not. If and when I give birth and it time for me to decide if I will go back on the medicine, I wish I could say I won’t because I hate the shots, but I think I will. MS is a scary disease and you don’t know what path it will take, I would rather protect myself as best I can. I didn’t feel any differently after getting off Copaxone in regards to weight loss, mood swings , headaches etc. I think the only side effect I really dealt with was the daily welts. I would like to try the new pill but it is so new to the market, I am concerned about some of the longer term side effects. The drug company certainly markets it.. I get phone calls 2xs a week inviting me to seminars.

    Anyway, thanks for listening to my story.

    Happy Thanksgiving !

  • Nikki Kennedy author
    5 years ago

    Hi Dawnie! Sorry it’s taken me so long to reply, lots going on in my life and a bit of “MS brain” over here! Thank you for sharing your story and the difficulties you and your husband have faced. My husband and I had spoken many times about pregnancy, medications, and MS and both had many feelings on all of the matters. Ultimately we decided to “live and let live” as they say, and are now pregnant with twins! I feel how you do, and am a bit concerned about what my options will be after giving birth and whether or not I will be going back on a DMD or not. It is something my doctor and I have talked about, and will continue to discuss but I know that whatever I do, I will do my best to be as healthy as possible for myself and my family. Please do keep us updated and let us know what is happening with your story. Best of luck to you and your husband on getting pregnant, it is a true joy!

  • Faith French
    6 years ago

    Hi Dawnie

    I wish you the best in getting pregnant. I don’t really relate as I have PPMS. Labeled “Chronic MS” in 1 year, tho I said I was PP. NIH dxed PP in Sept after 16 yrs. BUT, neuro had me on DMDs, chemo, steroids, etc, for 8 years. Said I’d be worse w/o them. Like many neuros, he is “old school”, drugs are preferred choice of treatment, and general good health practices are rarely discussed or practiced. I’ve had some detriments, and hope none remain.

    Like you, I researched to think for myself. I have a functional nurse practitioner only, and follow diet, nutritional supplements, and exercise. After 2 months, no scooter and cane. I actually cared about me again, and focused on being my best vs obsessing on MS.

    From day one, science showed MS drugs are at best minimally effective for few, and can’t rule out it’s placebo effect. All MS have side effects and cause bodily harms with use. That info is commonly hidden from pts. Even if neuros understood them, pt safety seems a lessor priority. The pharmaceutical and insurance industries focus on profits over pt safety, which is shamefully limited anyway.

    MS pts can better control and/or optimize their health with increased research and involvement. Drs are needed, but pts care most, and often common sense and questions can be very important and enlightening.

    I only speak from my experiences, and know little on other forms of MS. BUT, can neuros safely treat what’s never been proven or identified? They even debate what what and how the damage occurs. Treating my MS is big guessing game I must play, but I favor my side without the most. Wish it took less effort, but I’m worth it!

  • Nikki Kennedy author
    5 years ago

    Faith, that is certainly an argument that can be made. Hard to say what the best choices are in treatment, and there is still so much to be learned. We can only hope that in time there is much more research done and more known about MS and MS treatments. PPMS is a whole different bird, and I wish you the best!

  • KRose
    6 years ago

    When I was diagnosed more than 30 years ago, I did not have a choice. If I had been offered meds then, I would have taken them. I think the hardest part of having MS is the uncertainty. However, my neuro says that had I been given a DMD, today they would be congratulating themselves on how well I have done. I had no option other than diet, exercise, mindfulness, prayer and meditation, and of course trying to stay positive. Whether or not that worked or I am just lucky, I cannot say. I have symptoms that are mostly not visible. Would I be better if DMDs had been available? Or would I have suffered side effects and be about the same?

  • Nikki Kennedy author
    5 years ago

    KRose, it sounds like you have done a lot of great things for yourself, even without a DMD being available. A healthy lifestyle including diet, exercise, etc. all do their part in helping with MS symptoms. I wish you continued success with your path and whatever choice you make.

  • Story Maker
    6 years ago

    Sounds great KRose. I am a long termer too, though my symptoms are more visible. I started Tecfidera three weeks ago today. While it would be great to have none, side effects have been minimal.

  • -lois-
    6 years ago

    KRose, I was diagnosed when all the ABC drugs were fairly new and I didn’t think the 30% success rate was high enough to inject myself and deal with the side effects. I’ve never been on DMDs. In the last year, my signs have become VERY obvious as I’m using a walker. My neurologist jumped all over me telling me that IF I had gone on DMDs years ago…maybe this wouldn’t have happened. I don’t agree. Maybe, maybe not. I know people who’ve been on them and at the 10-15 year mark…it progresses. It’s the nature of the beast! I don’t consider all my years without issues, luck. I consider it a blessing. Now, at 50, I am dealing with my new normal. And I’m okay. And I’m STILL blessed. Good to hear from another who opted to forego DMDs.

  • Nikki Kennedy author
    5 years ago

    Lois, glad you are happy with your decision to forego DMD’s. There are no “right” decisions, but there are decisions that are right for each person. Not everyone should take a DMD, and there are lots of ways to treat your symptoms, including diet and exercise. Keep up your strong spirit!

  • Poll