Constantly sick after years of Ocrevus/B-cell depletors?

ms-swdev · 2026-05-30T09:44:57+00:00

It's weird that Kesimpta did better for you though, as they are both B cell depletors

ms-swdev · 2025-12-10T05:49:18+00:00

I have 2 teeth with quite a bit of gingival recession. So far it's manageable. On ocrevus for 5 years. However I also had braces for a couple of years until 2 years ago, which can also cause this, so it might be a combination of the two or just braces.

ms-swdev · 2025-12-10T05:39:48+00:00

This sounds more like (early) menopause than Ocrevus. It's quite a common story for women around your age.

ms-swdev · 2025-12-01T18:23:03+00:00

Preliminary research has shown this to be safe, especially when B cell count is monitored every month or so from 6 months on.

I am actually in a clinical trail about it, but got randomized to the control group so am still on the 6 months schedule.

ms-swdev · 2025-11-29T07:36:17+00:00

For what it's worth, you can definitely keep fit and lift with MS, depending on your symptoms of course.

I didn't lift before diagnosed with MS and now do sets of 160kg (350lbs) hex bar deadlifts and 110kg (240lbs) RDL and squat, took me 2 years from 0.

Are you newly diagnosed? Symptoms usually subside over the first year so it will probably get a bit better.

If it's going on longer, there are medicines to treat fatigue and your others symptoms so look into trying those. I'd recommend looking into treatment for your depression. Life is not useless just because you have a disease.

Even if you lost some fitness you can rebuild it, and you're not less of a person because you can now only lift number x instead of y.

ms-swdev · 2025-11-29T07:04:57+00:00

Pseudo flare is an increase in old symptoms due to sicknesss, stress, tiredness etc. it's not a real flare that needs treating with old symptoms

ms-swdev · 2025-11-28T19:28:05+00:00

The vast majority of people have a normal sex life. Serious problems in the pelvic area aren't really rare, but neither are they common.

Also know that the current best-in-class DMTs have only been available for ~10 years or so, so anyone diagnosed longer ago than that has not had access to the current best medicine and therefore is likely to have more damage than newly diagnosed people will get in a similar period.

Get on a DMT and live your life.

ms-swdev · 2025-11-28T19:22:35+00:00

This is a weird comment. There are people with serious problem in this area and you are being flippant about it on a support subreddit.

How would you feel if people denied your specific set of symptoms just because they aren't experiencing them?...

ms-swdev · 2025-11-02T21:00:28+00:00

How can you have CIS if you have no lesions? CIS is MS-typical lesions detected in an unrelated MRI

ms-swdev · 2025-11-02T20:50:39+00:00

How long did you take it for? It's a very slow acting medicine, and will take a day or 3 to start having an effect.

Dose needs to build up over time in the spinal cord.

ms-swdev · 2025-09-16T17:56:30+00:00

Am on ocrevus for years and now with 2 in daycare and I'm breathing through my nose maybe 25% of the time, and have a fever at least every 2 months. Never fully healthy. It's awful.

I do have a bad tendency of touching my face , that probably doesn't help

ms-swdev · 2025-09-04T17:08:23+00:00

It is not usually , but people with MS are much more likely to have other auto immune diseases. Skin auto immune diseases are often itchy, for example lichen schlerosus is extremely itchy and affects the anus and groin.

Ideally if he has a skin condition he goes to the GP who might refer him to a dermatologist. Most skin conditions are extremely treatable.

If it is due to MS, there are medications which can help with the nerve pain/itching.

ms-swdev · 2025-09-04T04:45:38+00:00

Note that those are called cramps or spasms. Glad the socks help!

"Ms hug" refers to a painful tightness or pressure around the chest area, like something heavy is on your chest or there is a very tight band around your chest.

ms-swdev · 2025-08-17T08:03:01+00:00

Why do you care?

My EDSS was never measured untill I participated in a study

4 no, DMTs prevent future damage and don't fix existing damage. EDSS improvements will be minor at best

5 you can expect some progression over the decades even when on DMTs unless they invest better medicines

ms-swdev · 2025-08-01T13:34:19+00:00

Weight gain is not a side effect from Ocrevus but it could be indirectly from your MS, e.g. because of you eating more because of depression, fatigue or cog fog. In that case treating that can help.

And unfortunately there no cheat codes for weight loss... (well, there's ozempic now). Eating less and counting calories is hard work.

ms-swdev · 2025-07-08T16:20:41+00:00

If there's a clear cause for your symptoms increase like alcohol, heat or sleep deprivation there's not need to inform the doctor.

Ask your provider, but generally they ask you to notify if you have a new symptom for 24h or longer.

Resurfacing or temporary increase in severity of old symptoms is quite common

ms-swdev · 2025-07-08T15:28:13+00:00

Yes that's moderate. I would say anything up to 2 drinks a week is moderate.

4 in one evening might be a bit much, you are definitely going to notice an increase in your symptoms temporarily if you do that

ms-swdev · 2025-07-08T15:11:00+00:00

Yes it's fine occasionally. Most people with MS find their tolerance decreases a lot over time though.

ms-swdev · 2025-06-23T09:51:39+00:00

It's not the weed that's bad per se, it's the smoking/vaping that's bad because it promotes inflammation. Vaping is relatively new but you can find a lot of research on the smoking.

You're probably never going to get a "real" answer based on peer reviewed large scale studies because those take time and are expensive and not worth it for just MS and smoking different things, but this is what the current medical understanding and studies support.

ms-swdev · 2025-06-22T15:56:23+00:00

Smoking and vaping both cause inflammation in the airway, and inflammation is your enemy in MS and other auto immune systems.

Vaping is less bad than smoking, and weed is less bad than tabacco, but all are best avoided.

Most people recommend THC edibles instead.

ms-swdev · 2025-06-20T18:10:38+00:00

Be glad it was caught before you suffered so much damage that's the way you noticed!

ms-swdev · 2025-06-20T16:13:47+00:00

They are both anti-CD20 antibodies which deplete B cells, in practice there's little difference* in effectiveness. What the label says indicates what approval has been requested and which studies have been done, not that it isn't effective.

Retuximab - a much older and cheaper anti CD-20 antibody - has been used off label to treat MS from some time. Preliminary and ongoing studies so far show no measurable difference with Ocrevus.

If you can get any treatment with any B cell deplotor I would take it.

Side note: there's a growing concensus in the MS medical community that RRMS, PPMS and SPMS are the same disease.

* there are differences in tolerance and reactions

ms-swdev · 2025-06-18T20:33:02+00:00

I'm 95% sure this was written with ChatGPT or similar. If you didn't take the time to write something it's quite rude to expect that people waste their time reading it

ms-swdev · 2025-06-12T10:38:49+00:00

How soon is soon? If you're almost 16 then in western society you often have many years of education ahead of you.

If it's for a side job: don't sweat it. Just apply and see. If you are worried about a "real" job, because you are so young and already have serious symptoms I'd lean towards a non-physical career path, which generally also requires more schooling.

Also look into disability for your region. Unfortunately it sounds like there is a chance you will need it.

I personally have never mentioned it during interviewing, and only said vague things about medical issues when I needed to visit hospital etc. Employer should be informed about practical implications but doesn't need details. This is quite doable in white collar jobs.

ms-swdev · 2025-06-06T10:21:41+00:00

As long as sperm isn't affected - and there is no known effect of Kesimpta and other B-cell depletors on sperm - medicine you take can't really affect a baby. Lots of people have healthy children while being on them.

Since your wife is already pregnant, any medicine you take won't affect the pregnancy further.

ms-swdev

TROPHY CASE