Doctors Want Me to Switch Meds, But for Now, I’m Changing My Diet

Jessie Ace avatar

by Jessie Ace |

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wheelchair, challenges, diet, medication, Pirates of the Caribbean, hypnotherapy, running, hypnotherapy, guided meditation, running

Doctors recently told me that the medication I’ve been taking for the last seven years for MS hasn’t been working. This is news that no one wants to hear. 

When I first started Tecfidera (dimethyl fumarate), an oral tablet, I was excited, because it meant no more nasty injections that left me bruised, sore, and in an anxious heap on the floor afterward. 

I didn’t have a good experience with subcutaneous injections of Rebif (interferon beta-1a), either. I was a tiny, 22-year-old student who spent about $10 per week on food. As you can imagine, there was no fat on me whatsoever, which made the injections nearly impossible. 

Tecfidera provided me with an easier option. It also meant I wasn’t relying on my partner to give me a painful injection three times a week, which upset both of us. 

When I started taking Tecfidera, I experienced some sickness. Admittedly, this caused havoc over Christmas when my nurse was out of the office and I didn’t know what to do. But it worked itself out in the end. 

Being told that this treatment was no longer working caused me to panic about the possibility of more injections. 

Thanks to recent hypnotherapy, I remained firm with the neurologist by confidently telling him, “No, I’m not going through that again.” As a result, I now have three options, and none of them involve an injection, per se. 

My first option is to start Tysabri (natalizumab), an infusion treatment given every four weeks. At some point (I forget when), it changes to every six weeks. 

I’m not excited about driving an hour each way to a hospital and sitting there for a few hours. I have things (like a job) to do.  

The second option is a medication called Mavenclad (cladribine), which is taken in tablet form. However, doctors told me I can’t get pregnant while taking it because not enough tests have been done to determine if it’s safe. 

Mavenclad involves two short treatment courses 12 months apart, so that would mean the earliest we could try for a baby would be the end of next year. I feel that’s too late.

The third option is to carry on as I am. The neurologist prefers that I take something, but I decided against it.

I’ve had two relapses and a flare this year. I originally thought my relapses were flares. Beyond “carrying on as I am,” I’ve decided to try using food as medicine. 

It was tough at first, but I am now dairy-free, gluten-free, and vegetarian, and I don’t eat processed foods or added sugar. I’ve been a vegetarian most of my life anyway, so cutting out meat was pretty easy. 

I’m mostly following the Overcoming MS (OMS) program, which focuses on eating fish and seafood, lots of fruit, vegetables, and whole grains. The diet excludes dairy and has minimal saturated fats. I’m not a huge fan of seafood, so that’s proving tricky. 

Starting the OMS diet was OK until I went out for a meal and discovered that the restaurants near me don’t offer many OMS-friendly options, nor are they very eager to cater to my diet. It takes confidence to say, “Can you prepare this dish without _____?” No one around me has heard of the OMS diet. 

Family and friends don’t understand why I’m doing this. Many tell me to eat normally and stop being awkward, and they don’t listen to the reasons I offer for changing my eating habits. However, I’m pleased to say that my husband has been amazingly supportive, as always. 

This medication change has caused me great stress, as you can imagine. 

If you’re following the OMS diet, please comment below to share your experience and favorite meal ideas to help inspire me. While there are several recipes online, I get bored easily!

***

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, and are intended to spark discussion about issues pertaining to multiple sclerosis.

Comments

Clare McKenzie avatar

Clare McKenzie

I also follow the OMS program as this already matched my dietary choices pre-diagnosis.

On the OMS website, there are handy Chef Cards you can give to the waiting staff when you are visiting restaurants. They can be found here: https://overcomingms.org/latest/chef-cards

There are lots of great recipes on the OMS website. You might spot some of mine listed!!! I particularly like the Chickpea Burgers, as well as some of the curries.

I personally have not been offered any DMTs by my Neurologist as my symptoms are mild, and here in the UK, the NHS works on a tight budget. Thankfully, my diet, exercise, and meditation routine are working well.

Good luck on your journey.

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Jessie Ace avatar

Jessie Ace

Hey Clare, that is so helpful I will for sure take those with me thank you so much! Great to know there are others out there doing OMS too. Oh don't worry, I'm in the UK too I know the NHS budgets all too well!

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Grace M avatar

Grace M

Clare McKenzie - why does clicking on your name above your comment take the reader through to a commercial business website selling subscriptions for services and one-on-one "wellness consultations"?
Moderators - is this sort of "hidden" commercial promotion permitted on this MS News Today website?

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Jessie Ace avatar

Jessie Ace

Hi Grace, it might take you to that page because that's who Clare works for and the page is linked to it. I know Dr. Gretchen well and she does fantastic work to help MS patients.

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Kate B. avatar

Kate B.

I have been very successful following the Wahls protocol, The minute I deviate I tend to have issues. I find the diet also allows a bit more flexibility eating out. Wishing you all the best!

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Jessie Ace avatar

Jessie Ace

I tried the Wahls diet once just after diagnosis, that came at a very difficult time it felt super hard to do. I'm liking OMS so far though :) - Jessie

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Leanne Broughton avatar

Leanne Broughton

Ocrevus was not given as an option? I was given a choice of Mavenclad or Ocrevus. Both fairly new at the time. I chose Ocrevus, had 4 doses and ended it as it made walking worse. I may wait out the Covid thing and then try Mavenclad.

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Jessie Ace avatar

Jessie Ace

Hey Leanne, no I wasn't offered Ocrevus. I'll look into that one. Interesting how it made your walking worse, hope you're doing ok now? - Jessie

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Tanny avatar

Tanny

Hi Jessie,
I had a fail on Tecfidera after a few years and was switched to Ocrevus,
It was fantastic!! I had so much energy it was amazing and I felt normal!
Unfortunately after my 4th and 5th doses I had pretty severe cases of serum sickness and my doc won’t let me take it again, he is afraid of a anaphylactic reaction.
Now I am back to my draggy tired self and having a little bit of walking issues. I am looking into Mavenclad with my next appt and my doc said we would go over it
I am also doing a OMS style diet but with some dairy
Stay healthy!!!

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Garland Coleman avatar

Garland Coleman

My wife experienced symptom improvement including walking with her first two Ocrevus infusions. She has another coming up this month and we are hoping for the same reactions. She is also considering changing her diet as we study more. She was diagnosed in 1997 and has been on several of the DMTs and has done fairly well with slow decline in her mobility. She now uses a cane or walker most of the time. Good luck to all MS patients!

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Joseph avatar

Joseph

Thanks Jessie. Doctors want to start my wife on an injection, once
per month and we are not fond of the idea. I rather she start the OMS diet you are on. Thanks for the info.

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Jessie Ace avatar

Jessie Ace

Hey Joseph, glad you found my story useful. Whichever your wife decides make sure to speak with your MS team first. Keep safe and well - Jessie

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Karin avatar

Karin

Dear Jessie
I feel with you . Since 5 years I am now on this diet. In the beginning it felt horrible to explain friends, family and every waiter I saw (I am traveling , or WAS traveling a lot) . But you are getting used to and today , I live in Switzerland and Dubai , I see a lot of people eating OUR way. It gets more and more easy. I tried just OMS , but after a while and a trial as a first person in the world triying a new therapy , which did sadly not work for me , I turned ill.... I am on Ocrevus which is perfect. No side effects easy treatment every 6 month. After 2 years they said I have to stop with Ocrevus due to my age (over 50). So after that I will wait and see.... Take very care and go your way Very warm regards Karin

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Mary Lynn McNeal avatar

Mary Lynn McNeal

This is encouraging. I have gone through a series of dates over the last couple of decades have spiraled quickly since starting Ocrevus 2 years ago. I know that it works wonders for many. I canceled my last treatment. I have touched on Paleolithic, done Keto ( I overdid the dairy fat, very bad for MS. Didn't know till too late. ). This is the first I have heard of OMS. The Wahl diet looks too much like the Paleo. Any suggestions would be so appreciated.
Thank you!

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Agnes Weessies avatar

Agnes Weessies

Not me but my son has MS. He was eating what would be almost a OMS diet before his diagnosis. With him it was getting the diagnosis that was the problem. When He was finally been diagnosed, he was unable to even sit up by himself, his internal organs had begun shutting down, and as the doctor told me later, he was on the road to dying. With diagnosis, we had to fight to get him into a neurologist. Once that happened he was deemed so far advanced that Tysabri was prescribed. He has been on it for 7 years. He gets his infusions every 28 days. He has my veins and getting the IV in can take up to an hour. His sttitude is what amazes the nurses. Through all he goes through, he has a good and humorous outlook on life. He patiently calms the nurses trying to find veins by telling them jokes. Yeah it is painful, but as he says, it is better than dying. He is now able to walk with a cane. That is a far cry from where he was. He's since started eating whatever he wants. I need to get him on a better diet for other reasons.

don't fear tysabri. We don't always get what we want. Try being pregnant and having this thing growing inside you dictating what you cn and can't do. Once a child is born, your life won't be the same. If tysabri is an option, the outcome far outweighs the inconvinence. It will also keep you very stable.Tim, my son hasn't had one relapse since starting treratment.

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Lynn avatar

Lynn

I'll second the Ocrevus option. Rituximab is pretty much the same drug, and what I'm on. They're infusions, but only twice a year. I started doing the OMS diet a couple months after diagnosis and it's a very healthy way to eat--my cholesterol and blood pressure are awesome! For me, my MS is too aggressive to be controlled by diet alone, though. Good luck!

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Charles Lumia avatar

Charles Lumia

I'm on Tecfidera (it's the only drug I've been on, about a year since my diagnosis) but on my most recent MRI there was some new activity and my doctor wants me to switch medications too.

Ocrevus (an every 6 month infusion) was suggested. Seems like a big step to take.

I'm probably going to switch to it. Might try some diet switching too. It's worrying though because the Tecfidera has caused me no serious side effects.

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Karen avatar

Karen

I'm a little confused by the comment, "I originally thought my relapses were flares." I thought relapses, flares, and exacerbations were the same thing. Can someone clarify for me? Thanks!

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Jessie Ace avatar

Jessie Ace

Hi Karen, so as I understand it, flares are basically symptoms you've had before which have suddenly got worse. Relapses are new symptoms and an MRI confirms new legions and disease progression. Like I say, that's how I understand it! Does that help any? Thanks for your comment.

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Jenn H. avatar

Jenn H.

I'm within a year of initial diagnosis and am interested in learning about all the various treatment options (since many are not too appealing due to risks of serious side effects). I'm not familiar with the OMS or Wahls diet. Is there evidence that indicates that either diet (or both) can slow the progression of MS?

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Courtney Moose avatar

Courtney Moose

Thank you for sharing. I will have to check out this OMS. I was recently diagnosed and have refused medications. I have been changing my diet and hoping to heal myself that way. I did not know about the OMS diet but i will be checking it out. Thank you for sharing!

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Jen avatar

Jen

Hi Jessie,
You may not want to hear this but I adhered strictly to the OMS diet for over ten years, during which time I did a 7-day retreat with George Jelinek, and continued to progress all that time. I was secondary progressive by the end of it. Jelinek himself continued on Copaxone after starting the diet and recommended that others continue their meds if prescribed. I have regrets about not trying any meds -- I was so sure the OMS diet (called the Taking Control Diet in those days) was going to work!

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Jessie Ace avatar

Jessie Ace

Sorry to hear that Jen. I just want to add I am going to start on some sort of treatment after I've got pregnant and had a baby (which is hopefully soon) alongside OMS.

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Mischa avatar

Mischa

Hi Jessie, I started the Swank Diet some years ago. And when my MS became "better" I became lazy and droped the diet more and more. And had more relapses. Since 5 years I follow the OMS and I am free of replapses. Maybe it is the diet, maybe the food, maybe the more sport, maybe yoga or the combination. Anyway I have the feeling it works for me.

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Kevin avatar

Kevin

Dear Jessie, I hadn't heard of the OMS diet, but I think I will look into it by clicking on the link in your article.
There is a whole other class of Oral DMT called S1P modulators that include Gilenya, Mayzent & one other.
I am on Mayzent for nearly a year now because I too had disease break through after several successful years of treatment with Tecfidera & before that a phase 3 clinical trial with monomethyl fumarate.

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Rita White avatar

Rita White

Hi Jessie
Your Dr is absolutely right, you can not take Mavenclad if you are trying for pregnancy.
My daughter took Mavenclad for 2 years with following OMS diet. She is on Whole plant food similar to OMS diet without consuming seafood. She takes Algae Omega 3. So far she has had no further relapses. She will be seeing her Neurologist about October with another MRI. Diet is extremely important for most Autoimmune diseases.

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Margaret Sides avatar

Margaret Sides

Please consider looking into vegetables & fruits that are high in OXALATES. CUTTING them out of my diet has made a HUGE IMPACT on my overall well being. So few doctors or nutritionists zero in on them, but they crest serious consequences in our well being.

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Colin avatar

Colin

To start a new diet is a nightmare. Keep going. Don't listen to others do what you feel helps. Better to try something new. I am Vegan / have MS/ and try to eat unprocessed food only (only for my own health, not animals, sorry). LOL, I bring my own food to people's houses. Going out for dinner is a hassle. But I feel this is right for me. Embrace being different, stay positive, and keep going!

"If you do what you have always done, you will get what you have always got."

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colin avatar

colin

Sorry, I should have mentioned... for me use everything going. Medication / Diet / Exercise / good sleep / low stress... something has to work!

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Stacey Stewart avatar

Stacey Stewart

Good morning Jessie,

I too have had poor results with my meds and have tried two other meds without success. I returned to Copaxone and immediately changed my eating. Changing my diet was my only option, so why not try it! I would love to be vegetarian but an following the paleo diet. We do whatever we can to take back control of our MS.

Warmly, Stacey

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Annette avatar

Annette

I was just wondering is the overcoming MS diet different than the best bet diet. I do not have ms but my son does. We have tried the walls diet and was considering the best bet diet I am not familiar with overcoming MS diet

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Jessie Ace avatar

Jessie Ace

Hi Annette, I'm not familiar with the Best Bet Diet, unfortunately. Overcoming MS is a diet rich in fruits and vegetables, whole grains, and seafood. Does that help? Here is the website if you'd like more info https://overcomingms.org/ #StayENabled - Jess

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Jason Fullerton avatar

Jason Fullerton

I also follow the OMS program. I did not know about the Chef cards, but I will definitely be using those from now on. When I am at a restaurant I almost always go right for one of the fish selections. Almost all restaurants seem to have at least one seafood selection. You may have to ask them to leave off whatever sauce the fish is served in, but I personally like plain fish. I have also found that most places have Pizza and it is pretty easy to ask them to prepare a vegetarian Pizza with no Cheese. I am also enjoying the diet, but I am also new to it, so it is good to hear from others that are doing it as well.

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Christopher avatar

Christopher

Difficult situation. I can empathize with what you’re going through, though the experience was opposite—I told my neurologist that Tecfidera wasn’t working for me (and it wasn’t). The drug probably does something for some people, but it wasn’t strong enough for me and I believe the drug is junk.
I started taking it actually after having stopped taking Tysabri, because my JC virus antibody numbers were getting too high and had to stop for risk of developing PML. Up until then the Tysabri was working well. One thing to understand about Tysabri is that once you start it you’ll be pretty much locked in, because if you ever have to stop then there is a very strong rebound effect and you will have worsening disability. Natalizumab is a powerful drug and immunosuppressant. As far as diet is concerned it keeps us with MS healthier, but there isn’t any trial based proof that any diet alters the course of multiple sclerosis. All evidence so far is anecdotal, and people like Terry Wahls actually had treatment with high dose chemo drugs which more than likely changed their MS status more than diet. There are a number of diets which help with minimizing symptoms of MS, but remaining off of any disease modifying therapy is risky as the disease process of multiple sclerosis never lets up, and it’s sinister in that the damage can’t always be felt or noticed until it’s more extensive. Diets are good for health, and cutting down inflammation is helpful in mitigating symptoms. But the disease process is a separate beast that hasn’t seemed to have been tamed except with strong immunosuppressants and HSCT (stem cell transfer).

I wish you well in your journey and research. If you’re interested in learning much more about MS and it’s biology and research, you should check out multiple-sclerosis-research dot org. It’s a blog by researchers from Barts and London School of Medicine, and it’s very informative.

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Susan avatar

Susan

Christopher, Thank you so much for your very informative post. I have also been on Tysabri but, due to my ever-increasing JCV level, am being shifted to Ocrevus. I have had my Covid shots as I need to get that out of the way before I start with Ocrevus. This is because the Ocrevus interferes with the body's response to the vaccine. I have a family member who has been urging me for a long time to follow first George J, then Terry Wahls and now Pam Bartha, as they think that diet will cure me of MS. Having read your post, I am now feeling more confident to continue the path I am on which is DMT's, going to the gym twice a week, yoga once a week, and eating a pretty good diet. Such interesting news about Terry Wahls and her chemo! Thank you once again.

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Anna avatar

Anna

Christopher, I would be interested in knowing what therapy you are on now. My MS journey is similar to yours in that I had to stop taking Tysabri due to elevated numbers. Right now I am not on anything and have experienced worsening disability. I am a 65 year old female and my Dr. is recommending Mavenclad. I have never been hesitant about trying a new therapy but Mavenclad scares me. Don't know what other options are left.

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Robby Teer avatar

Robby Teer

Sorry Christopher, but you should really use Google before saying things you know nothing about.
Jessie, surely you remember me, the Z-71 driving, Skoal dipping, gun toting redneck from Alabama.
Well, I've been eating the SAME THINGS EVERY DAY, ONCE PER DAY, FOR OVER 5 YEARS! SPINACH, topped with fruits (oranges, apples, strawberries, grapes, pineapple, etc.), covered with mixed nuts (almonds, cashews, pistachio's, peanuts etc.), with no more than the size of my palm can hold worth of chicken strips, covered with a raspberry walnut vinaigrette dressing. I also drink ALL NATURAL, UNFILTERED HONEY NIGHTLY, as well as about a shot glass of Apple Cider vinegar every 2 to 3 nights. Basically, I've listened to my body, and given it what it says it needs when it tells me to. Cinnamon, another staple. I rarely drink milk, but instead drink Silk Vanilla Almond milk and Silk Coconut Milk. I had been on Tysabri treatments for almost 8 years, JC negative. When the pandemic hit Alabama, I took it seriously, and so did my wife. She has 4 blood clotting disorders. The last infusion I had if Tysabri was 83 or 86, I can't remember, back last year in August of 2020. I haven't FELT ANYTHING!!! NEVER MISSED IT!!! They CLAIM there's a "WASHOUT" period, but it simply didn't happen that way for me. I didn't even notice I hadn't had it. I admit, I am RARE BREED, in that I've NEVER been the worrying type, never feel ANXIOUS, or DEPRESSED! Hell, my life's AWESOME!! I wouldn't change waking up blind in 2012 for ANYTHING!! MS is and has been the greatest blessing I could've ever received, and I tell everyone I know that truth. I actually have the ability to say I was once blind but now I see!! The Lord WILL KEEP and SUSTAIN you!! Do it Jessie!! It takes much longer uk prepare all those foods, the peeling, cutting up, and all, but it's well worth it. I have NO PLANS of putting ANYTHING into my body that DOESN'T come directly from God's earth. Except, well, when deer season comes in, I MUST HUNT, and MUST KILL A BUCK, or 3. And yes, I will and do eat deer meat, especially if and when I personally killed it, skinned it, and processed it. I dove hunt, and turkey hunt as well, and eat those too. Sure, it's meat. Ok, but it's NOT being prepared in a restaurant. It's not PROCESSED in a huge factory. It's harvested, cleaned, dressed, cooked, and eaten by "ME". So while those are all meats, I don't really consider them as being that which is BAD for you, such as processed meats are. I could REALLY SET YOU UP on a great diet, and ALMOST, almost guarantee you NO RELAPSES, and NO NEED for any DMT's, ever again. I'm finished with western medicines refusal to find CURES, but instead modifiers. How BIG would big pharma be if they created CURES for ailments? Not very big at all,ci assure you.
I'm CONVINCED that MS, as well as many other immune diseases are WITHOUT A DOUBT "GUT RELATED", and ALL are GUT driven.
These are only MY OPINIONS, my EXPERIENCES, so take them as you may. I'm definitely not a doctor. I'm just a redneck from Alabama who's EXTREMELY self confident, seld motivated, and exercise extreme self control. If it's gotta be done, I do it, plain and simple. This is our life y'all, we get 1 ride through it. And I'm not wasting mine. I choose to let the Lord drive, while I party in the back!!

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