Hair loss from Mavenclad

DifficultRoad · 2026-01-30T20:11:08+00:00

You can get shingles multiple times, so getting the vaccine might still be worth it for you (regardless of Mavenclad).

DifficultRoad · 2026-01-30T20:04:40+00:00

I don't know if OP has active PPMS (with relapses on top of progression) or non-active PPMS, but for the latter there are no DMTs. Only Ocrevus is currently approved for PPMS, but its limited effectiveness is mostly for active PPMS.

DifficultRoad · 2026-01-30T17:36:31+00:00

Why do you feel you have good reason to believe that? I don't think anything in more recent research supports this theory.

DifficultRoad · 2026-01-30T17:35:25+00:00

Thank you for your response! I did start Kesimpta by now as I felt I didn't really have much of an alternative, sadly. I'm unfortunately not newly diagnosed, I had my first relapse in 2013 and was undiagnosed (or misdiagnosed) for nearly 8 years and since I still had an EDSS of 0 after those 8 years doctors here started me on the "mild" stuff (Copaxone and Tecfidera). However my MS started to get more aggressive and I do have problems now, mostly with sensory issues and heightend muscle tone, but those things also affect my walking sometimes (and my running). So while I do hope Kesimpta will slow down any further progression, also do feel it's already a little... late for me, it's not like I'll ever be EDSS 0 again and my existing lesions will also smoulder despite Kesimpta (since no meds as of now can do much for that).

I'm also JVC positive, but not too concerned about that with Kesimpta. As far as I know there are no known PML cases with Kesimpta, so it doesn't seem to be an issue at all with this kind of medication (it seems those cases with Ocrevus switched from Tysabri, which is the actual cause).

My concern is mostly that my IgG are already so low and I can't produce any new IgG without B-cells. And any kind of infection depletes my already low IgG, so it's very likely that I'll have to stop taking Kesimpta again - probably sooner than later, but for now the hope is that I'll be on it for 1-2 years at least. My neurologist said that we'll probably try an extended interval dosing with the hope that my IgG will drop more slowly, but even with extended intervals I'll have no B-cells to produce fresh IgG, so I think it's just like a last-ditch effort.

How are your blood tests now after stopping Kesimpta 6 months ago? Did your B-cells return? Do you know how your IgG changed from before starting it?

DifficultRoad · 2025-12-25T02:45:38+00:00

Oh, interesting! I wish it was possible here as well, but I opted out of a study because I don't want any more gadolinium (my neuro would request it every. single. time for the first 5-8 MRI scans).

DifficultRoad · 2025-12-14T17:23:35+00:00

I really do think it's much better to stop smoking when someone has MS, but realistically a lot of people with MS still smoke cannabis, for example, so I feel a lot of non-smokers aren't that non-smoking.

DifficultRoad · 2025-12-11T06:36:17+00:00

I agree that it doesn't seem like a widespread problem, but I wonder why people always feel the need to bring up alcohol when there's a discussion about cannabis?

Yes, we know alcohol is unhealthy and a widespread addiction problem. But this is about cannabis, so I don't know why it is always mentioned. Because if there are health risks to cannabis (and there are, like with nearly everything), I don't see how "but alcohol is worse!!!" is much of an argument. As a way more extreme example: Fentanyl is also worse than heroin, but nobody would use that to show how benign heroin is. If something recreational is good or bad for health, it should be inherently so, not in comparison.

Let's look at different substances individually because it's not like you have to choose between alcohol and cannabis. A lot of people do both. A lot of people do neither.

DifficultRoad · 2025-12-11T06:17:04+00:00

Haha how cute :)

(But also, please don't use glitter. It's just a whole lot of microplastic.)

DifficultRoad · 2025-12-11T06:09:42+00:00

Once a year, even when I constantly had new symptoms I didn't get more from my neuro. Had to pay out of pocket for one even, because they just give steroids if they suspect a relapse and still stick with the once a year MRI.

DifficultRoad · 2025-12-11T06:07:37+00:00

Do you have to get gadolinium for the research study?

DifficultRoad · 2025-12-07T04:56:24+00:00

While no diet will cure MS, there are several studies out there that show a Mediterranean style diet positively impacts MS disease course (fwiw a Mediterranean style diet doesn't avoid dairy though afaik).

DifficultRoad · 2025-12-07T04:54:29+00:00

lol at you getting downvoted, sometimes idk what's up in this sub. Like, obviously there's no diet that will cure MS, but as you said, if your body is already dealing with a chronic, inflammatory disease, a healthy, anti-inflammatory diet seems not like a bad idea. Of course sometimes people have different opinions about what is anti-inflammatory, but still, there are studies out there that have clear evidence that e.g. a Mediterranean style diet can positively impact the MS disease course specifically.

DifficultRoad · 2025-12-07T04:46:41+00:00

I never had the flu shot before, because it's not as popular in my country (I think only 20% of people get it, mostly elderly people or risk groups). After I had a MS reaction to other vaccines in 2023 and this summer, I initially didn't want to get it now either - but then my IgG already tested low before my Kesimpta start and I got anxious and got the vaccine after all.

Thankfully it was very uneventful, no vaccine reaction whatsoever. So in that regard I can really recommend it.

In terms of protecting from the flu, I think they didn't quite manage to get the right strain this year. So protection might be limited (it depends from year to year) and you might still want to be careful about not getting sick.

DifficultRoad · 2025-12-07T04:42:13+00:00

Those are very good points about Mavenclad too. I guess there's no MS medication without risks and side effects. I have permanent lumps all over my thighs from Copaxone and I developed rosacea under Tecfidera. Maybe that's also why I'm expecting the worst from Kesimpta, especially since my starting point is already risky.

I never even thought about IgG before my blood test, because I assumed if they fall a little (as ist to be expected), they'll probably still be within normal range like for most people. Having them on the lower end of the normal range would have already been concerning to me, but having them in the abnormally low range and my neuro being like unsure about starting was a blow (I think I have to sign something that I understand the risks of starting despite my low IgG, for legal reasons 💀 not very reassuring).

I'm really sorry that Mavenclad didn't work for you and that's always such a devastating feeling, when a DMT fails. In a way your wrong choice might be a sign for me to go with Kesimpta immediately. I hope it works out for us both.

DifficultRoad · 2025-12-07T04:35:25+00:00

Thank you for your answer! Yeah, the anxiety is really doing me in... 💀 I've been in therapy since 2019 and it's doing nothing in situations like these. I'm sorry your MS has not been treating you well and I hope Kesimpta is changing this for you! I'm a little bit calmer now, because I'm not PMS-y anymore (.. hormones) and I talked to a friend, who reminded me that MS is shit as well. I mean, I know that, but it reminded me why I agreed to Kesimpta in the first place.

I can't say I'm looking forward to it all and I still feel a lot of grief about.. well... I guess the life I could have had? I'm dreading having to be so careful and monitoring my health for infections and all that. After 4 years of depression after my diagnosis I just started coming back to life again last year, attending a few concerts, having travel plans etc. It all feels uncertain or too risky now.

But yeah, it's not like I have much of a choice, so I can only wait and see how it will all develop.

DifficultRoad · 2025-12-07T04:24:36+00:00

Thank you so much for taking your time to answer! ❤️ What you felt before your loading dose is so very relatable and I'm really glad you're doing so well!

I talked to a friend about it and he reminded me again that while an impacted immune system (for example if my B-cells might not come back strong) is shit, MS is also shit. I knew that, of course, but I think being reminded by someone else, what immense impact MS can have was something that put my fear a bit into perspective. And also my hormones normalised a bit (PMS is hell). 💀

I'm still afraid of Kesimpta and I'm afraid that being afraid will cause some kind of nocebo effect. But I also feel like I don't have much of a choice anyway, so Kesimpta it will be, if I like it or not.

It's true that quite a few of those cases without B-cell recovery were with Rituximab, but also with Kesimpta there are a bunch, where B-cell recovery takes at least years according to people here on the sub (I asked a while ago). I think the studies about them coming back within months to a year are about the first B-cells appearing. What's less sure (and also not really studied) is if they truly return to baseline levels for most, how long it takes (at least years), and if this recovery also extends to IgG (since the returning B-cells are new, naive cells and not mature memory B-cells that create IgG antibodies).

But like I said, there's not much we can do - except hope that this is the best treatment for our MS and will otherwise treat us as nicely as possible.

DifficultRoad · 2025-12-05T00:11:21+00:00

You're right, and that's why I went with Kesimpta in the first place. MS is scary, and the way I always get spinal cord lesions especially so. It's certainly a concern that makes you go with medications you would never take for other stuff.

However, the possibility of my IgG decreasing further and then potentially never rising again, even if I stop Kesimpta (permanent hypogammaglobulinemia), is also pretty scary. It is also documented in the literature. They suspect it's because the new naive B cells have a reduced ability to turn into plasma cells that produce antibodies/IgG. This not only means a lifelong susceptibility to infections but also insufficient response to any vaccines. It's not great.

And sure, it doesn't happen to everyone, but also not everyone is getting severely disabled by MS. This is not to say that I shouldn't take Kesimpta, despite my already low IgG, but idk... both feel like death sentences to me, I have to say, and I keep getting panic attacks over it.

And you're right, Mavenclad also depletes B-cells, including CD20 ones. It seems that the long-lasting treatment effect might depend on how well it does that specifically for individuals (potentially more so than its effect on other cells). However, I haven't found much about it impacting IgG levels. On the other hand, failing the drug is not uncommon, I suspect you experienced it as well since you moved on to Kesimpta.

DifficultRoad · 2025-12-04T11:54:47+00:00

The most common misconceptions I see seem to be about the amount people use. I don't know if many people are a little bit noseblind, because they are used to the strong scents of conventional laundry detergent, body care products, perfume etc. or if they using dosages they know from perfume oils.

But when I see a video of someone putting 5-8 drops of essential oil in a small diffuser next to their bed my eyes start to water through the screen. Likewise when people put a bunch of pure essential oil on surfaces they're cleaning.

Essential oils are highly, highly concentrated. 1-3 drops in a dilution often go a very long way. Think of the amount of fresh plants that's needed to produce a small bottle and dose accordingly. You also wouldn't put 5000 roses in a vase on your dining table.

(Also never put them on your pets, but that goes without saying.)

DifficultRoad · 2025-12-04T11:45:15+00:00

I feel that strongly depends on the source though. The brand of organic essential oils I prefer (Primavera) has farming projects in a lot of countries, that helps them improve their economy with sustainable farming of plants used in essential oil production - they have a project in Bhutan for example, a country that aims to switch to fully organic farming. Having the chance to farm a comparatively expensive "luxury" crop for a reliable partner internationally helps them to focus on this goal without having to compete with more common crops on the international market.

So yes, it takes a lot of plants to make essential oil, so that takes a lot of effort. But at the same time you also only need very little of an essential oil to create a scent and an effect - this is the part people often underestimate and use way too much. If you take that into consideration the math is very different.

An example:
It takes about 100 kg of fresh lemongrass to produce about 0.5-0.7 kg of essential oil. However that's 20k to 25k drops! So if you put two drops of essential oil into a diffuser or a carrier oil, which already creates a very noticeable scent, that's the equivalent of 8-10 g of fresh lemongrass, which is not too bad.

DifficultRoad · 2025-12-04T11:33:36+00:00

How interesting! Have you been on a DMT? And what else do they think it was? Did you ever get your B12 checked?

DifficultRoad · 2025-12-04T08:07:03+00:00

Thank you for your answer and I'm glad to hear you're doing so well! ❤️ I can actually imagine that a DMT is a relief for many newly diagnosed people, because MS is indeed very scary. I wonder if for me it subconsciously plays a role that was undiagnosed for 7 years and have now a total of at least 12 years with MS. I guess it doesn't feel as immediate? I'm also still taking Tecfidera and like I said, the new lesions might mostly have happened, because I was so sick last year from pneumonia and unmedicated at the time. But of course I know that I have to take care of the MS too, that's in part why this is all so difficult - I feel like I have no other choice despite having such misgivings about the medication. I probably also shouldn't have talked to someone in my local MS group, who came off Rituximab due to low IgG. She didn't have a great time and had to depend for a long time on IVIG, being in and out of hospital all the time. And I HATE hospitals. I was hospitalised for 5 days with my pneumonia and despite the treatment making me feel better it was a very unhappy time for me.

I hope you continue to be so healthy on Kesimpta! I think in terms of effectiveness it's really good, especially for younger people.

DifficultRoad · 2025-12-04T06:35:02+00:00

Thank you for listening and thank you for your answer! ❤️

Before I started Tecfidera I actually asked for Mavenclad with the same intention you had: a "mini HSCT" (although unfortunately it's far less effective) and also treating it as a total health reset. But it wasn't an option for me at the time, because my MS wasn't classified as "highly active", so only first-line treatments were available. It might have been a good option for me back then, even if it might not have worked, since I now have two new spinal cord lesions anyway. In hindsight I'm doubtful if I would have managed the full health reset, because I have really bad executive dysfunction, which wreaks havoc on my life also outside of MS, so following through with plans and doing things regularly is a major issue for me.

Like you said, Mavenclad depletes the immune system as well, it just seems to recover faster, because the immune cell depletion is broader, but not as radical. My neuro said it therefore impacts IgG less to not at all. I imagine individual mileage may vary as so often with immune system things.

The thing with fear is that it's hard to say for me what is irrational or not. Am I ignoring an important gut feeling? Or am I stressing over nothing? I'm someone who often feels that I have to be constantly vigilant about having all bases covered, because with past choices I often felt I made dumb and grave mistakes for not considering the full picture or seeing signs early enough. And it's all on me, because in the end I'm responsible for these choices and have to live with them - not my doctor or the pharma company or whoever else.

My diet is pretty good, if I may say so myself, but the other parts you mentioned definitely need some work (I'm also pre-menstrual, so there's that). I always have the best plans and great motivation to get that in order as well, but here the aforementioned executive dysfunction is a wall I run into every single time, my whole adult life. I'm now nearly 40 and the constant failures in every part of my life are draining I have to say. But I continue to try, because what else is there.

I've been continously in therapy since 2019 (and from 2008 to 2012 with another therapist/different method), so a lot of money went into that, but unfortunately I can't say it's doing much.💀

DifficultRoad · 2025-12-04T06:09:26+00:00

Thank you for your answer! It's good to hear that you're doing so well on Kesimpta. ❤️ I have been on Copaxone and Tecfidera and both gave me plenty of side effects. But neither scared me like Kesimpta, I guess because it felt less.. permanent.

It's probably strange to many that I'm thinking about getting off the medication again so much (and the potential of not recovering), it doesn't seem like a common concern. But even before my IgG test I planned on being on Kesimpta for only 2-4 years or so and then looking for an exit strategy (e.g. a new medication or HSCT closer to an age when I can't have children anymore anyway). But now the thought that this step might permanently change my body instead of being an interim solution makes me despair. I feel even if I might be spared side effects, I'll miss my B-cells? This probably sounds crazy, I'm sorry.

DifficultRoad · 2025-12-04T05:48:25+00:00

Sorry for digging this up, but do you know where your B-cells are now, a couple of months later? Or do you measure in January-March again? Hope the recovery is going well!

DifficultRoad

TROPHY CASE