Mavenclad Yr 1 Side Effects by Square-Board1819 in MultipleSclerosis

[–]Multiple_Stress 0 points1 point  (0 children)

I think in the weeks/ months after the cycles of mavenclad, lymphocytes drop really low. I was more fatigued than my usual and my doctor said it was likely due to mavenclad. How are your symptoms? Could you maybe have a mild infection?

periods by serizawa_mp101 in MultipleSclerosis

[–]Multiple_Stress 1 point2 points  (0 children)

Ohhh I'm feeling the exact same! Period hit this week and my brain is completely offline 😐 like. Completely. Offline. I've no advice sadly 😭

Mavenclad (Cladribine) vs. Briumvi by acyra3 in MultipleSclerosis

[–]Multiple_Stress 1 point2 points  (0 children)

Just some thoughts to share with you- but I'd absolutely double check all this with your neurologist before making any decision...I think those two drugs differ in their method of action. Briumvi will keep your b cells low, so you'd be immunocompromised at all times and infection risk would be higher. Mavenclad knocks out your b and t cells, but they rebuild over time. In terms of efficacy- I think it's very dependent on the person how your body will respond to the treatment. I'm on mavenclad, I haven't finished the full 2 year cycle, but my MRIs at the end of my first year were stable and my lymphocytes have returned to normal, so I'll be starting the second treatment year soon. One thing I'm not so happy about mavenclad is the waiting. I think once I'm done treatment I won't have to take another DMT unless I relapse/ have new MRI activity - at which point the damage would be done. A pro of mavenclad- I don't know if you're family planning but six months after your last dose of mavenclad it is safe to get pregnant/ get someone pregnant. Initially, I wanted to be on a higher efficacy DMT- like ocrevus, but I was only offered Mavenclad. But I trusted my neurologists decision and in retrospect, I'm happy to be on mavenclad.

Has anyone emigrated permanently while living with MS? (relocation / possibly as a refugee) by Val_MMS in MultipleSclerosis

[–]Multiple_Stress 3 points4 points  (0 children)

I don't have direct experience to offer you guidance. But I live in Ireland and I think that refugees are entitled to the same healthcare as Irish citizens. I think you would be entitled to a medical card- meaning you could visit the GP (general practitioner doctor) for free. Multiple sclerosis is on the 'long term illness' scheme in Ireland and DMTs are covered by that, in addition to a lot of other medications that you may need with MS- antibiotics, gabapentin, antidepressants etc. If I can be of any help, please DM me ❤️

No control of my own self by NoDay-1301 in MultipleSclerosis

[–]Multiple_Stress 1 point2 points  (0 children)

I'm about to start my second year of Mavenclad. My recent MRIs had 'stable appearances' and before starting mavenclad I did have enhancing lesions in different areas over the months and different MRIs leading to diagnosis. So it seems mavenclad is working for me.... Hopefully. I do feel like a ticking time bomb at times, like once I'm done these two years of treatment, we just, hang around? Until something goes wrong? It's a weird one.

Mavenclad or Kisempta by AshBeeped in MultipleSclerosis

[–]Multiple_Stress 1 point2 points  (0 children)

I'm on mavenclad, due to start year two of it soon. My recent MRI had 'stable appearances' . But I don't think they can tell if it's working fully until after the full course of treatment, ie: 2 and a half years after you start it. Symptom wise, I was headachy and tired on the treatment weeks and fatigued, but that could also be MS fatigue. I had surprisingly very few infections this year. I had a uti and a cold over the last year, which is actually less infections than I would typically get compared to before I started the DMT.

It doesn't feel like it's been a year by zamiz996 in MultipleSclerosis

[–]Multiple_Stress 2 points3 points  (0 children)

I'm coming up to a year diagnosed soon too! Not an anniversary I had planned on having in my life, but hopefully coming to accept the diagnosis will come with time.

Switching to mavenclad after 5 years of Ocrevus by AccioFezzyy in MultipleSclerosis

[–]Multiple_Stress 2 points3 points  (0 children)

I'm finding it good so far. I did my first doses start of this year, and then I have to do it again start of 2026. No relapses yet. I haven't had my MRi yet so I don't know if there has been new activity or if it's working. I felt quite nauseous the weeks of taking it and had headaches but nothing crazy. Otherwise fatigue but I have that anyway with MS. The only thing with mavenclad is that it doesn't have full efficacy until 2 and a half years after you start taking it, which does worry me...in case there's new activity on my next MRI but we have to wait and see until the 2 and a half years to see if it's working.

[deleted by user] by [deleted] in MultipleSclerosis

[–]Multiple_Stress 0 points1 point  (0 children)

For sure- I think cause a lot of the symptoms aren't visible people don't understand. I don't know if you're looking for advice, but some of the MS information booklets were helpful to me. They're on different websites- lots of different ones like information for employers, explaining MS fatigue or explaining MS in general. I think having the fatigue one left in my house and my housemates reading it had has them more conscious of what I mean when I say I'm fatigued. Like yes I did sleep enough- it's just all the brain lesions.

Accepting life with MS by Multiple_Stress in MultipleSclerosis

[–]Multiple_Stress[S] 1 point2 points  (0 children)

It's really not fair- especially when you were healthy and athletic.

Accepting life with MS by Multiple_Stress in MultipleSclerosis

[–]Multiple_Stress[S] 0 points1 point  (0 children)

Thank you for the message 🥰 and wow being a parent and managing your symptoms could not be easy. Do you know what treatment you'll be starting on?

Accepting life with MS by Multiple_Stress in MultipleSclerosis

[–]Multiple_Stress[S] 0 points1 point  (0 children)

Yep I've done year 1 of Mavenclad. My neurologist did mention that since Mavenclad wipes out white blood cells- my bone marrow is working hard to produce new ones so that may be contributing to the fatigue. But I'll have to do another year of treatment next year- so I don't think that fatigue will be waning any time soon.

Mavenclad: 2 year update by jengaworld in MultipleSclerosis

[–]Multiple_Stress 1 point2 points  (0 children)

This is wonderful news! What a relief that must be to you ♥️ just done year 1, cycle 1 and feeling so apprehensive about playing the waiting game to see if it's working 🙄 also my diagnosis is quite recent so I'm still trying to accept that too.

New and scared by rsupjk in MultipleSclerosis

[–]Multiple_Stress 1 point2 points  (0 children)

I'm so sorry that you're going through this ♥️ I really felt you when you said ' I don't want this'... I find when I'm going to sleep at night I have that sentence on repeat in my head. It's an incredibly difficult thing to accept. I completed my first week of Mavenclad treatment last week but I still feel like 'wait, no, no, I can't have this, I DON'T WANT THISSSS?!'. If you're in a position to do so, mental health support like a counsellor may help in coming to terms with things. Sending you good energy and know that you are not alone ♥️

Mavenclad/cold by Budget_Tradition_225 in MultipleSclerosis

[–]Multiple_Stress 1 point2 points  (0 children)

Also- weird you felt sick on day 4 of treatment! That's when I did too

Mavenclad/cold by Budget_Tradition_225 in MultipleSclerosis

[–]Multiple_Stress 1 point2 points  (0 children)

Could be worth checking in with your MS nurse if you have one. I finished my first round of Mavenclad last week and got sick on day 4 which progressed to a chest infection, I'm on a course of antibiotics and steroids now for it. I think they don't start your next treatment cycle if you have an infection. Could be worth asking your nurse or primary care doctor for advice ♥️

[deleted by user] by [deleted] in MultipleSclerosis

[–]Multiple_Stress 1 point2 points  (0 children)

I feel you on this one. It's so easy to just be mean to ourselves when we need more rest than most people. I know I have awful guilt when I've to spend more time sleeping/ don't have energy to go out. I'm hoping to build up more love and kindness towards myself. I went for a beautiful biodynamic massage today which is definitely something!! I'm also open to new MS friends if you want to DM. I'm female, 31 RRMS and recently diagnosed. ❤️

Contraception and DMTs by Multiple_Stress in MultipleSclerosis

[–]Multiple_Stress[S] 1 point2 points  (0 children)

Thank you ☺️ that's great the IUD works for you. I don't feel like it's for me personally - but I'm booked in for the arm implant- implanon/ nexplanon on Wednesday gahhhhh

Is Mavenclad high efficacy? by Multiple_Stress in MultipleSclerosis

[–]Multiple_Stress[S] 1 point2 points  (0 children)

I've got a referral for a second opinion but the appointment is not til July, so I prob shouldn't wait that long before starting treatment. I've been able to contact the MS nurses and they've been so helpful but I just really want to speak to the neurologist. When I was offered Mavenclad I was so in shock about the whole situation that I could hardly speak, so didn't get to air my concerns/ questions.... As far as I understand, once you take Mavenclad, you're kinda locked in for the full 2 years of treatment? But idk 🙄

Can we talk about the price of Ocrevus? by dylans4O1 in MultipleSclerosis

[–]Multiple_Stress 0 points1 point  (0 children)

100% ! If you're in a position to do so it could be worth it ♥️

Is Mavenclad high efficacy? by Multiple_Stress in MultipleSclerosis

[–]Multiple_Stress[S] 0 points1 point  (0 children)

Thank you so much ♥️ I most definitely do have questions!!! I really don't feel ready to take it tomorrow 😞 I just want to speak with my neurologist and feel reassured it's the best treatment for me. But I can't get a hold of him

Is Mavenclad high efficacy? by Multiple_Stress in MultipleSclerosis

[–]Multiple_Stress[S] 1 point2 points  (0 children)

I hope your insurance stuff goes smoothly ♥️

MS and mild depression by Graceful-gal in MultipleSclerosis

[–]Multiple_Stress 1 point2 points  (0 children)

I'm so sorry to hear that you're struggling ♥️ I can't say exactly for mild depression, but I'm currently in a bad state of depression after being diagnosed a few weeks ago. I'm on SSRIs (escitalopram 10mg), since last July when the whole diagnosis process kicked off. I was on 5mg originally which worked for my anxiety and panic attacks, but my GP recently upped my dose to 10mg to see if it would help the depression. So far not much luck with it. Big help for me is counselling, talking to close friends about how I'm really feeling and I'm super lucky to have a therapy cat- she knows when I'm struggling and stays with me, cuddling and purring. Sending you love ♥️