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Charity Number: 1117194 (England and Wales)

Registered Company: 06000961

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Topics

  • Aubagio
  • Avonex
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  • Gilenya
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Found 315 results

@emmad1988

7 Aug 2017 08:21Last reply 17 Aug 2017 12:10

emmad1988

Cladribine advice

Hi Everyone, I am newly diagnosed (just awaiting the results to find out what type it is) and my neuro is keen for me to try Cladribine. I'm currently under Dr Schmierer at the Royal London. Does anyone have any first hand experiences of Cladribine and any side effects it has? I'm nervous to try ...
  • Diagnosis
  • Newly diagnosed
  • Treatment
  • Unlicensed
5

@agnieszka-legierska

12 Apr 2016 10:05Last reply 6 Jul 2016 19:37

agnieszka-legierska

Cladribine

Hello, My ms nurse at the Royal London hospital has recommended Cladribine as an alternative to lemtrada. Can anyone tell me about the cancer risk associated with this treatment and why they might take this instead of Lemtrada? I am not keen in taking Lemtrada due to the long term follow up pe...
  • Diagnosis
  • Disclosure
  • Treatment
  • Unlicensed
15

@Raceya

11 Jun 2022 17:34

Raceya

THE BIG DUMP

I have had MS a long time. So, I’ll try to stay focused and brief. (Wish me luck😂) Many strange happenings from the age of 20. All came to be diagnosed in 1997 at age 32. I’ve taken Copaxone, Avonex, Bee stings🐝(yep),IVIG, Tysabri, and then the BIG GUN- HICY. (Which is high dose cyclophosphami...
Phoenix, United States
  • Symptoms
  • Work and play
  • Treatment
  • Dizziness
  • Diagnosis
  • Copaxone
  • Secondary progressive
  • Unlicensed
  • Work and Study
  • Avonex

@Megs

6 Jun 2022 06:08

Megs

Mavenclad and period

Hi everyone, just wondering if any of you people is experiencing period fluctuation whilst on Mavenclad. I finished my first year course on November 2021 and since then my period has been off - very irregular and sometimes extremely painful to the point I have to lay in bed. I'm interested to know...
  • Treatment
  • Mavenclad
  • Unlicensed
  • Work and play
  • Which DMT
  • Symptoms
  • Diagnosis

@Mo-jo

3 Jun 2019 12:04Last reply 5 Jun 2022 20:21

Mo-jo

Mavenclad /cladribine

Hi all, tomorrow will be the last dose of this year of mavenclad, so far so good. No significant side effects so far thank god. How you are all well. ☺
  • Mavenclad
  • Unlicensed
  • Treatment
  • Work and play
6

@ClareEloise

28 Jun 2021 16:00 EditedLast reply 5 Jun 2022 17:36

ClareEloise

A diary of Cladribine / Mavenclad

Hi everyone! I’ve been here for a few months having been diagnosed in January but this is my first post! I started day one of cladribine today, so far so good! I wondered if it would be useful to anyone considering the medication if I made a post each day on how I’m doing with it :) All the posts ...
Hampshire, England, United Kingdom
  • Treatment
  • Newly diagnosed
  • Unlicensed
  • Which DMT
  • Mavenclad
  • Diagnosis
  • Money
44

@Shannon_OHara

25 Aug 2020 16:33Last reply 5 Jun 2022 16:04

Shannon_OHara

Next drug is cladribine /mavenclad

Hey guys, I've been diagnosed with Ms since I was 13 and had lots of scarring before then, had nearly 10 years of treatment. However, my Ms keeps becoming active. The next and only drug they are suggesting is cladribine /mavenclad. So taking it for the short amount of time over two years. I'd lik...
  • Treatment
  • Symptoms
  • Mavenclad
  • Unlicensed
  • Diagnosis
  • Newly diagnosed
11

@Momoftwo

15 Dec 2017 18:39Last reply 5 Jun 2022 14:53

Momoftwo

Mavenclad

Anyone taking Mavenclad??? It was just approved in Canada and my neurologist suggested I start this treatment. Just looking for some info on side effects ??
  • Treatment
  • Mavenclad
  • Which DMT
  • Unlicensed
  • Relapsing remitting
14

@laurenrose

18 Jun 2019 15:26Last reply 5 Jun 2022 14:39

laurenrose

cladribine/mavenclad experiences pls!

hi! i completed my first year of treatment in jan + feb this year and sadly, i'm not having the best experience. i'm keen to hear from anyone else who has been on cladribine and what sort of side effects you had. thank you! lauren
  • Treatment
  • Unlicensed
  • Mavenclad
  • Ocrevus
  • Diagnosis
  • Relapsing remitting
19

@WendyHills

3 Aug 2019 04:52Last reply 5 Jun 2022 14:19

WendyHills

Working towards yr2 cladribine

I saw my consultant today and finally feel like she’s listening to me. My lymphocytes are back to normal levels six months after cladribine just need more bloods in October and I’m ready for year two. As I failed in my attempt at my MRI in June not sure how effective the tablets have been for me ...
  • Symptoms
  • Unlicensed
  • Balance
  • Fatigue
  • Treatment
  • Relapses
  • MRI
  • Numbness
  • Mavenclad
  • Diagnosis
8

@V-ICE

30 May 2022 16:40

V-ICE

Ending my Mabthera treatment

After a couple of years, working good, I have had an Infection that caused a total loss of White bloodcells. Recovered good but kept on Mabthera treatment, A year later I got some arrhythmia. Ended Mabthera after that and will change to Cladribine
  • Treatment
  • Unlicensed
  • Lemtrada
  • Which DMT
  • MRI

@mutley64

11 May 2022 16:29 EditedLast reply 13 May 2022 19:19

mutley64

Duloxetine

Does anyone have any experience of this drug for nerve pain and anxiety/depression ? I've recently been prescribed 30mg of this instead of Amitriptyline 20mg and Citalopram 20mg. The Amitriptyline wasn't helping my fatigue or touching the pain. Unfortunately I'm not getting along well with Duloxe...
  • Symptoms
  • Pain
  • Mental health
  • Fatigue
  • Work and play
  • Treatment
  • Relapses
  • Unlicensed
  • Spasticity
5

@foldpaper

5 May 2022 15:29 EditedLast reply 6 May 2022 10:58

foldpaper

Mavenclad / Cladribine and cancer — would you?

Need some advice. I was diagnosed with RRMS in June, discussions w neuro led to Mavenclad. I like the efficacy it promises, and is something that my hospitalisation insurance will likely be able to cover. Daily meds… would not. However! Bc life is sometimes a cosmic joke, I also found out in Oct tha...
  • Treatment
  • Diagnosis
  • Mavenclad
  • Relapsing remitting
  • Newly diagnosed
  • Which DMT
  • Unlicensed
  • Work and play
6

@charlmzs

1 May 2022 09:04Last reply 5 May 2022 21:41

charlmzs

Blood Donations

Having used to donate blood, I called up the blood bank to ask if I’m able to donate blood now that I have MS. I was told ‘No’ as there isn’t enough evidence to show if MS is transmittable & if it’s transmittable by blood. This is a bit of a disappointment & I’m surprised there isn’t enough evidenc...
Melbourne, Australia
  • Research
  • Disclosure
  • Unlicensed
  • Diagnosis
  • Treatment
  • Mental health
  • Healthy living
11

@charlmzs

1 May 2022 09:04

charlmzs

Blood Donations

Having used to donate blood, I called up the blood bank to ask if I’m able to donate blood now that I have MS. I was told ‘No’ as there isn’t enough evidence to show if MS is transmittable & if it’s transmittable by blood. This is a bit of a disappointment & I’m surprised there isn’t enough evidenc...
Melbourne, Australia
  • Research
  • Disclosure
  • Unlicensed
  • Diagnosis
  • Treatment
  • Mental health
  • Healthy living

@Wilma

18 Apr 2022 14:03Last reply 20 Apr 2022 05:03

Wilma

Hi Has anyone had stem cell transplant?

I requested a meeting with a specialist consultant regarding the possibility of having stem cell treatment but was told, It was unsuitable as I’ve had MS for too long now. I’m aware that this involves chemo to completely kill off the cells and then transplant and hopefully regenerate new cells that ...
  • Treatment
  • Relapses
  • Symptoms
  • Gilenya
  • Tysabri
  • MRI
  • Diagnosis
  • Avonex
  • Unlicensed
  • Research
6

@Jimmytree

20 Mar 2022 12:24Last reply 20 Mar 2022 14:10

Jimmytree

Stem cell

Right guys I’m considering going to Mexico and paying for stem cell work what do we think about this? Is this a good treatment has anyone here had this.
  • Treatment
  • Work and play
  • Unlicensed
  • Stem cells
  • Work and Study
  • Research
  • Which DMT
1

@Lorie

13 Mar 2022 22:25Last reply 14 Mar 2022 13:06

Lorie

Ocrevus

After investigating the side effects of Ocrevus, I discovered this site, so thanks! I just started Ocrevus in February and within days I noticed a cold sore(a bad one) coming on within a week of finishing both starter infusions and also developed chronic low back pain within a week as I've never had...
  • Treatment
  • Ocrevus
  • Symptoms
  • Pain
  • Work and play
  • Rebif
  • Relapses
  • Gilenya
  • Unlicensed
  • Work and Study
2

@jazminfannon

9 Mar 2022 11:02

jazminfannon

Cladribine

I took my last Cladribine Friday gone, any ideas if I’m okay to drink alcohol this Saturday? I won’t have had a pill for a week by then…
  • Going out
  • Unlicensed
  • Work and play
  • Treatment
  • Healthy living
  • Diet
  • Mavenclad

@BinkiB83

28 Feb 2022 17:28

BinkiB83

High ALT in blood test

Evening all. I had an appt at the hospital today to test my blood as I’m opting to go on cladribine. I’ve had my results back and my ALT level is 64u/l and marked as red in the result list. Has anyone else had this and what happens next? Will this effect my being able to take cladribine? Thanks in...
  • Unlicensed
  • Treatment
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