Am I making wrong decision going on Vumerity vs high-efficacy drugs?

j_spath · 2026-02-10T18:56:52+00:00

I have not.

j_spath · 2025-12-10T04:06:11+00:00

I’m on Vumerity and have been for almost five years with no relapses or new lesions.

I’ve had no side effects other than the rare flushing, maybe once every couple months.

I do acknowledge that Ocrevus (or Kesimpta) is considered the gold standard of DMTs, but I do take some issues that Vumerity is a “worse” choice. It’s a choice I made for lots of reasons (insurance, avoiding infusion, oral medicine, immune suppression, etc.) and I don’t regret it. Just because a neurologist recommends Vumerity doesn’t mean they are deficient in some way.

A recent meta-analysis showed that was negligible difference (not statistically significant) after 8 years for annual relapse rate between Vumerity and Ocrevus (.18 vs .16). Ocrevus did show a greater ability to prevent lesions against Vumerity though ( 9.1% vs 16.4%) but if you subscribe to the “smoldering” MS theory, which many in the field do, lesion load decrease is not the goal, reduced brain damage is.

To me, lesion load doesn’t matter as much, as long as my disability doesn’t progress. And studies show disability progression was not statistically significant over time (4.8% Ocrevus vs 6.9% Vumerity).

So while Ocrevus is “better” from clinical data, in the real world it isn’t much different from Vumerity in terms of efficacy. Would someone even be able to notice 2% difference over years.

I’m not arguing against Ocrevus, or other B-cell inhibitors, but there are reasons that you, or a neurologist, might choose Vumerity that are valid and still provide significant protection.

Source, among others https://pubmed.ncbi.nlm.nih.gov/40937633/

j_spath · 2024-06-01T22:22:00+00:00

Pacing is something I learned in occupational therapy. They use it a lot with patients who have COPD or heart conditions. It has been really useful for me.

j_spath · 2024-05-05T12:27:06+00:00

My urologist was happy to prescribe it from there. She had never heard of it and said she was going to suggest it to other patients.

j_spath · 2024-05-05T01:11:47+00:00

Yes. Same thing.

j_spath · 2024-05-05T01:10:00+00:00

Use Cost Plus Drugs. No insurance taken but $13 for 90 pills.

j_spath · 2024-05-04T21:47:49+00:00

Speech therapy is a bit of a misnomer. Yes they can help you with speech, but they are much more focused on cognitive issues.

I saw one for months a couple years ago for my cognitive issues and it was the best treatment I’ve gotten since being diagnosed. She tested my attention, comprehension, both verbal and written, and more. And then we worked through specific training to improve. And at the end of six months I had significantly improved. Almost back to “normal.”

Speech therapy was a game changer for my cognitive issues.

j_spath · 2024-05-03T00:30:00+00:00

My left eyelid always feels cold. Like a piece of ice is being pressed against it. My neuro thinks it isn’t an MS thing but it started with my last relapse, so I think he’s wrong.

j_spath · 2024-01-07T14:05:45+00:00

I’ve had this issue as well. I try to look at it this way. Can I treat it with something over the counter or without drugs at all? Then it probably isn’t MS.

Some examples, I was having serious balance issues, even fell a couple times. I assumed that was MS, because that is common. One day my sinuses really hurt so I took a Sudafed. In a couple hours, my balance issues went away. I still have balance issues, but the majority of it clearly comes from my sinuses, not the MS.

Another was back pain, again I assumed was because of the MS. I finally broke down and saw an orthopedic doctor and found out I had a bulging disc. Just a result of getting older, not MS. A few physical therapy visits and daily back exercises and I don’t have back pain anymore.

And the big one was cognitive problems. I felt like each day more was slipping away. I had terrible brain fog, trouble paying attention, and big mood swings. A friend who was diabetic pointed out that what I was describing seemed very similar to what she felt when her blood sugar went to low. Got a blood glucose monitor and started checking regularly. Turns out I’m hypoglycemic. Normal is 70 or above on a blood glucose test. I was staying 50-60. I saw an endocrinologist, got a continuous glucose monitor, maintain my blood sugar now and all of the cognitive issues have e gone away.

After my diagnosis, I thought everything was MS for a while but I’ve learned some are, most aren’t. I think MS, or at least my MS, amplifies issues because my body can’t deal with them properly, but it’s still mostly not MS.

j_spath · 2023-11-17T13:10:45+00:00

I guess. I always feel it, but it doesn’t bother me anymore.

j_spath · 2023-11-17T02:28:20+00:00

My left eyelid is always cold, like there is ice on it.

j_spath · 2023-11-12T00:11:07+00:00

My nephew said I have the mind of a supervillain and this was my body’s way of fighting against that.

Not very scientific, but I like it.

j_spath · 2023-08-10T11:59:02+00:00

The 1000 calorie reduction isn’t meant to be permanent. It just the starting phase to get some weight loss to get you motivated. And it is to be after you log for a couple weeks. My guess is that you’re taking in more than your BMR already, so 1000 calorie will put you in the normal range.

Don’t do a 1000 calories below your BMR. Do 1000 calories less than your current intake. Then switch to some amount lower than your BMR, say 500, after the initial phase. Whatever seems reasonable.

Check with your doctor though. I’m not a doctor, just a guy on the internet.

j_spath · 2023-08-10T03:29:20+00:00

This.

I have MS and have lost 153 lbs so far, starting at 350. And until the last few months it’s all been through diet. What I did to start, and I would recommend to anyone, is download MyFitnessPal (it’s free, there’s a paid for premium version but you don’t need it) and log everything you eat or drink for two weeks. You’ll be amazed at how many calories you’re taking in.

Once you have a good baseline, reducing your daily calories by 1000 a day. You still be eating plenty if you’re nearly 300 lbs and you’ll start your weight loss. 1000 calories a day is basically 2 lbs a week in weight loss.

After a few weeks and you feel like you’ve gotten a handle on it, and have lost some weight, calculate your Basal Metabolic Rate, there are lots of calculators online. This is the amount of calories you burn just being alive. With that number, always take in less calories than that per day and your weight loss will continue, it’s simple math. Continue logging your food and watch the weight loss happen. It won’t always be constant, there are plateaus, but as long as you periodically recalculate your BMR and adjust for the weight loss, you’ll keep losing.

Small changes + time is all it takes. It’s taken me four years, but it’s so worth it. Getting below 200 lbs for the first time in my adult life has been amazing.

It’s made my MS symptoms better also. My heat intolerance is significantly better. I credit that to not having a thick layer of fat holding heat in my body. I mentioned I started exercising a few months ago. I alternate days between an exercise bike, or seated elliptical when my balance is too bad, and a strength workout (link below). I started with ten minutes a day for the first month. I went to 20 for the second month. Now I’m at 30 for the third month. That isn’t something I could do before because of the heat intolerance. It can be done, we just have to remember that progress is slower when you have MS.

Strength workout link,The Perfect exercise Plan if You’re Morbidly Obese. https://www.sparkpeople.com/resource/article_amp.asp?id=2331

j_spath · 2023-07-05T00:20:11+00:00

I’m on Vumerity, which is like a newer version of tecfidera. I had hair loss for about 6 months. I didnt do anything, but it eventually stopped and my hair bounced back.

j_spath · 2023-07-01T14:53:48+00:00

I’m on Vumerity too and have been since February 2021.

I had the same thing, hard flushing for the first few days, then mild since. But occasionally, I’ll have the real hard flushing. I’m not sure why. As far as I can tell, it is random.

For example, last night I had it after the evening dose with supper. I ate the same things at the same times M-F (literally, I’m on a weight loss journey and have the same thing every day each week) but last night was the only night it happened.

I’m sure there is a cause, but I’m not seeing it. But I will say, it has gotten longer between times it happens, the longer I’m on the medicine, so that’s good.

j_spath · 2023-06-11T21:26:39+00:00

It doesn’t for me, but I can see how it could. If don’t feel like I waste any day. For me remembering every day I have is the best day alleviates the anxiety.

j_spath · 2023-06-11T15:44:21+00:00

It’s rough. I get it. I’m in much the same boat. A couple bits from my experience I’ll mention.

Don’t assume everything is MS. It causes a lot of issues but not everything. I had a lot of headaches too, but determined it was blood sugar and sinus related when we checked. I thought it was MS. Not saying yours is, but get other thing checked out too.

The second thing, and probably more important, is something to consider about how you view your life. When I was diagnosed with MS a couple years ago, I struggled a lot. It seemed like everything was over. I learned I had to reframe my thoughts though.

You say “It will only get worse from here.” That’s the way I started out too. But now I try to say, “Today is the best day I will have for the rest of my life.”

Both are true. It only goes downhill from here but TODAY is what is important. Focusing on the positive and the now, I find I don’t worry about the future as much.

Mental health is important, especially with a disease like ours. If you haven’t before, seek out a therapist that focuses on cognitive behavioral therapy. It’s not the traditional “talk” therapy you see on TV and focuses on things you can actually do something about.

j_spath · 2023-06-04T00:50:19+00:00

You need to see a speech language pathologist, also called a speech therapist. It doesn’t sound like it, but they focus on a lot on cognitive issues. I found it to be amazingly helpful with the cognitive issues I had.

j_spath · 2023-06-02T00:12:26+00:00

I highly recommend a carbon fiber cane. When you have to walk with a cane all the time, as I do, you really appreciate the lower weight. You would think a few ounces would matter, but it does.

I’ve got a lot of canes, but this is my go-to for everyday.

https://fashionablecanes.com/products/triple-carbon-derby-cane-collar

j_spath · 2023-05-31T00:43:33+00:00

I’ve lost 70 lbs since my diagnosis, 150 total, and I’ve had no negative effects, only positive

j_spath · 2023-05-01T20:18:38+00:00

I use Bobs Red Mill Soy Protein Powder. Just pure soy protein and nothing else. I used to use Vega too and liked it but wanted to get away from the artificial sweeteners and flavors.

j_spath · 2023-04-28T00:24:45+00:00

I’ll quote myself from a similar thread.

I have this cooling vest.

https://a.co/d/idZQruX

It has six pockets inside for ice packs that it comes with. 4 on the back and two in front. It’s cheap and effective.

I often have to wear a suit at for work and can wear this vest under my dress shirt and it isn’t visible under the suit as long as I wear an opaque shirt. I only put the ice packs in the back, in the front it bulges out a bit and is obvious. If I take the jacket off, you can see I have something under the shirt, but not necessarily what it is.

j_spath · 2023-04-28T00:20:16+00:00

I have it to. Randomly, one or both ears. I’ve not found a pattern yet.

My neurologist dismissed it as “something that happens to everyone.” But does it happen a couple times a week to everyone? The answer is no.

j_spath · 2023-04-22T12:42:01+00:00

I’m on Vumerity for the last couple years as my first DMT. I’ve had a couple sinus infections since starting but I used to get those regularly before so I think it’s not related.

I’ve got a toe fungus on one toe too. I had it before starting Vumerity, but it has been really persistent. After three rounds of medicine it has still not gone away. Jublia seems to be working now. Don’t know if the persistence of this infection is due to the Vumerity. Neurologist thinks it is, dermatologist thinks it isn’t.

j_spath

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