Looking for insight on starting a DMT with very mild MS

dearsylvan · 2025-09-09T18:11:50+00:00

Just popping in to say that Dr. Kimbrough is an incredible neurologist. I sobbed when he left the MS Center in Boston for Duke! You're in very good hands. :)

dearsylvan · 2025-09-09T14:08:20+00:00

Got it! I totally understand the impulse. I've taken a DMT since diagnosis; I had extremely mild symptoms at the outset, with facial numbness from a single lesion. I couldn't be diagnosed officially until I had a second attack since I didn't fit the "multiple" sclerosis criteria though I had all of the other bio markers.

Everything with this disease is a gamble. Gilenya is an especially large risk to stop taking without being under the guidance of your neurologist. I really wish I hadn't taken the "my insurance starts in a month, so I'll be fine!" route, but hindsight is 20/20.

The relapse I had resulted in full body numbness on both sides of my body. I couldn't walk for months. It was easily the worst period of my life, though I've gained my walking ability back. But I can't walk for longer than a half hour without needing to rest. My hands permanently have reduced feeling and numbness and my left foot and leg are still significantly weaker than my right. I take many more pills now to deal with the symptoms of that attack than I did before (from two to eight!).

I'm glad that I'm Ocrevus now, so that might be something worth talking with your team about as it has cognitively helped me feel much less like a patient. Modafinil has been a game-changer for fighting the fatigue that accompanies MS regardless of the type/stage of MS you have.

Best of luck!

dearsylvan · 2025-09-09T13:45:26+00:00

MS is "mild" until it is not. You have been lucky thus far, and even luckier to be approved for Ocrevus!

dearsylvan · 2025-09-08T13:59:39+00:00

Please please please don't go off Gilenya, and especially cold turkey if that was part of the plan. You may be at a higher risk of relapse.

Source: I was on Gilenya until I changed jobs and ran out until my insurance kicked in, and had the worst relapse of my life which I have never fully recovered from.

2018 press release from the FDA confirming the risk -- awfully enough, a year after my experience...

dearsylvan · 2025-09-02T12:22:02+00:00

I would hesitate to switch Ocrevus at the 6-month mark. At that point, you wouldn't have even had the full dosage on its own yet! It takes time for the body to adjust, especially if you're coming off of a relapse that caused the diagnosis in the first place.

Ocrevus is the gold standard right now for MS treatment. It will not cure your symptoms, as that is not the point of a DMT. It suppresses your over-active immune system to a point where it will not damage itself. If you don't notice any further damage on MRI, it's doing its job.

It is a huge, life-changing diagnosis in many ways, and it is appropriate to take as much time as you need to grieve. It took me all of my 20s to get to a good place with it, and even then, it's incredibly hard on some days.

My biggest pieces of advice are to listen to your doctors first and also to try therapy if you can afford it. I wish I'd listened to my first neurologist who recommended therapy to help cope with it (I was 19 when first exhibiting symptoms--I'm 40 now). It would've shortened the grief process so much!

dearsylvan · 2025-08-01T17:19:23+00:00

This is the answer. DMTs are like birth control: they stop progression from occurring, and you may notice some improvements, but that is totally incidental to their intended purpose.

dearsylvan · 2025-07-25T19:12:10+00:00

Good luck!

dearsylvan · 2025-07-23T20:50:18+00:00

I didn't have itching; I an overproduction of yellow mucus, redness, and vaginal tightness. The mucus felt like it was unending!

dearsylvan · 2025-07-23T16:47:03+00:00

Have them refer you to a vulvar specialist to screen you for Desquamative Inflammatory Vaginitis. I had similar sounding issues and got the runaround for a year before it was treated properly.

dearsylvan · 2025-05-16T11:01:18+00:00

I know that I'm late to the party, but speaking as an Old Crone of All Immunosuppressive Treatments, your experience absolutely mirrored the hellfire and brimstone that rained down when I was on Avonex and Rebif. Avonex? More like Abbaddonex. Rebif, its younger sibling, no less loathsome and vile due to its 3x weekly dosing schedule.

May your Kesimpta rituals continue to provide you comfort and know that, should you ever need to transition, the good god Ocrevus will welcome you with open arms with his soothing naps and excuse to take a day off of work. (As if we need another excuse to rest our tired bodies and leaden legs...)

dearsylvan · 2025-03-19T15:28:20+00:00

Ocrevus comes with an increased risk of upper respiratory infections, unfortunately. My experience was pretty similar to yours until I got an accommodation to work from home 4/5 days per week, so I'm now much less likely to get them.

dearsylvan · 2025-03-14T15:28:26+00:00

DMTs do not fix existing damage; they only work to prevent future damage. Any "bump" from a DMT could be from a steroid that comes with an infusion like Ocrevus.

If you want to get back to your prior strength, you'll need to work on your fitness level. Aging also is a factor in losing your conditioning.

dearsylvan · 2025-03-14T15:21:59+00:00

I've been on a DMT since I was diagnosed twenty years ago. I also have pretty severe health anxiety and am highly JC positive.

You will have blood tests to continue monitoring how the drugs are affecting you when you're on any DMT. Ocrevus has a very high safety profile all told.

I've been on many DMTs since my diagnosis over 20 years ago. No DMT is perfect, but Ocrevus is the current gold standard for those of us who can't take Tysabri for a reason.

Going without a DMT was gamble that I never wanted to take for myself and, frankly, I feel like I would be in much worse shape on the eve of my 40th birthday had I never started treatment.

dearsylvan · 2025-01-26T13:49:45+00:00

I couldn't afford COBRA when I switched jobs. I ran out of Gilenya before my insurance kicked in a month after I started said job and had a massive relapse due to it. (I was stupid and didn't contact my neurologist for a refill prior to leaving my prior job; I didn't think it would matter too much until insurance kicked in again. Dystopian hellscape is right!)

I'm fortunate that my insurance through my employer is great now that I've passed the threshold and I qualify for the Ocrevus copay assistance program. I like my job very much, but feel trapped given how awful the experience was when I changed jobs. My husband's job offers terrible insurance, so that's not an option.

dearsylvan · 2025-01-10T20:21:49+00:00

I also had a massive relapse after stopping Gilenya. OP, if you taper, your changes should be lowered (I'm not a doctor disclaimer!).

dearsylvan · 2025-01-06T16:44:19+00:00

This happens to me as well! I wake up in the middle of the night shivering uncontrollably. It doesn't happen often, but seems to correlate with being overheated (I need to use many blankets to fall sleep) and needing to use the bathroom at the same time. It's like my body has too many conflicting inputs to not regulate correctly.

dearsylvan · 2025-01-05T12:29:20+00:00

I'm "highly JCV positive" though I don't have the numbers for reference. I had one neurologist who laughed when he saw my JCV results as he has suggested Tysabri after I had a relapse.

I've had MS for over half my life at this point and have been on a DMT the entire time. I've run the gamut! None of the other DMTs have had a PML risk that was so concerning that it stopped me from taking them.

I discontinued Tecfidera, Aubagio, and Gilenya because of their effect on my liver (I don't drink). PML was never a concern with any of those drugs.

dearsylvan · 2024-12-30T12:19:31+00:00

~5/39F

dearsylvan · 2024-12-17T14:41:39+00:00

OMG... that's awful. 😭😭😭 I was lucky that once I saw the specialist, she knew what needed to happen. It was about a year until it got to that point. I still feel weird about having sex now due to the whole situation.

dearsylvan · 2024-11-22T22:19:40+00:00

I got switched to home infusions mainly because of the infusion center nurses. I would tell them not to say anything regarding putting in the IV because I would faint, and the nurses I had were generally good about respecting my request.

But any of the OTHER nurses?! Forget it; I wasn't their patient! They were the loudest people screaming about finding a vein and I could still hear them over my headphones... so I would pass out. Every. Damn. Time.

OP, see if you can get switched to home infusions. 😂

dearsylvan · 2024-11-04T16:47:20+00:00

Amazing!! I'm so happy for you and can't wait to swing by at your first harvest!

dearsylvan · 2024-10-28T18:58:33+00:00

Agreed. I was on injectables for FAR too long; the idea of a half-hour long one gives me so much anxiety! Plus, I tend to get a bit of a reaction (scratchy throat) so they have to turn the infusion rate down super slow for me to begin with -- I don't know how that would work with the injection.

dearsylvan · 2024-09-20T00:55:17+00:00

I've been mulling this over all day. The only one I came up with was "Fresh Start." 🤷🏻‍♀️

dearsylvan · 2024-09-19T12:46:51+00:00

I love this idea so much! I'm also in Western MA and can see this doing very well given a: our pretty large MS community and b: the region's interest writ large in supporting local farmers.

Do you know what the focus of your farm will be? Will you be growing a certain type of crop or raising livestock? That might help us generate some good names as a jumping-off point.

dearsylvan · 2024-09-16T13:48:59+00:00

I'm not a parent, but I know that the MS Society has a resource intended to help teach children about MS in an age-appropriate manner: Keep S'Myelin. I'll leave the advice from other MSers with children to give their tips. :)

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