10 posts Page 1 of 1
Hello,

I've recently been diagnosed (October this year) and been given a choice of disease modification drugs to chose from. My neurologist, along with the ms nurse, wants to see me in 6 weeks and by that time, I will need to have chosen a drug. I'm feeling very overwhelmed by having to narrow down the range of drugs to one, and anxious about making the right decision. Has anyone else experienced this? At the moment I'm looking at Lemtrada, Ocrevus and Mavenclad. Has anyone been treated with these drugs and if so, could you tell me how you got on with them (side effects etc)?

I'd appreciate your feedback.

Thank you,
Lisa
I'm halfway through Lemtrada and my thoughts are:

Lemtrada is good because it reduces relapses more than any other DMD (70% less better than placebo). I did have a return of previous symptoms and that is still going on 6 months post round 1, but I'm optimistic that it will stop and it's nice to think that I'm not taking drugs every day (and I feel "cleaner"). There is a risk of thyroid issues.

Thoughts on the others:

Mavenclad. Like Lemtrada, but less effective and less risks (50% better than placebo)

Ocrevus is every 6 months which has pro's and cons. You will have to continue taking it, but you can stop taking it. You can't stop with the other two after the two rounds. It's effectiveness is similar to Mavenclad, but the big difference is that it can be used for progressive. Currently not licensed for this, but I doubt that a neuro would reclassify you and deny you the drug if you're already on it.

Have a look at https://www.mstrust.org.uk/a-z for more info.
OMS since 17/08/2015
Diagnosis 28/05/2015 - 22/09/2015
Hi Lisa

I have no experience of the medications you mentioned, but Geoff has given you great information.
What I would say is I believe you said you have 6 weeks to think about it, so do not try to make a decision straight away. Conversely do not try to make a decision the day before. What you are doing is good, weighing up the options.
Try to not get stressed about it all, as I believe stress is the most important factor for making us feel crap!

Geoff can I just ask you was the liver mentioned to you at all in your deliberations.
When I questioned lemtrada it was mentioned to me.

Valley

Be kind to yourselves!
Both liver and kidney got a mention, but they were rare, whereas thyroid is quite common. I had a load of blood tests to see if I was suitable as well, so maybe it's different for different people.

Valley wrote: Hi Lisa

I have no experience of the medications you mentioned, but Geoff has given you great information.
What I would say is I believe you said you have 6 weeks to think about it, so do not try to make a decision straight away. Conversely do not try to make a decision the day before. What you are doing is good, weighing up the options.
Try to not get stressed about it all, as I believe stress is the most important factor for making us feel crap!

Geoff can I just ask you was the liver mentioned to you at all in your deliberations.
When I questioned lemtrada it was mentioned to me.

Valley

Be kind to yourselves!
OMS since 17/08/2015
Diagnosis 28/05/2015 - 22/09/2015
Thank you both, that's really helpful. Geoff, can I ask you another question. Is it the case that after the treatments I need to have tests every month for four years?

Also, out of interest Valley are you taking any medications and if so, what?

Lisa
Yes, monthly blood tests for five years from the start of the treatment (4 years from the end)


lisa.E wrote: Thank you both, that's really helpful. Geoff, can I ask you another question. Is it the case that after the treatments I need to have tests every month for four years?

Also, out of interest Valley are you taking any medications and if so, what?

Lisa
OMS since 17/08/2015
Diagnosis 28/05/2015 - 22/09/2015
Hi Lisa

Sorry for the delay in getting back to you!
My medication story is not straight forward. I was on rebif, but had a very bad reaction to it, so bad in fact that my neurologist said he had never seen anything like it before!

I was told about a lot of medications but was not getting the answers to them I sought!
I eventually said I would like to try copaxone, expecting a fight on my hands, but got no fight.
I would really like to know what people who understand neurologist and medication think of this.
Is it a good sign?
I have been on copaxone for a few months now and seem to be tolerating it well!

I hope this helps! I know what it is like looking for others experience.
Be good to yourself and don't let yourself be rushed!

Valley

Be kind to yourselves!
Hi Lisa,

I was also diagnosed this year and have just started my treatment last week. I am taking Tecfidera, which is a daily pill. It's actually multiple pills a day. Currently I am on Week 2 so my dosage has increased from 120 mg to 240 mg. IT will top out at 480 mg. So far things are ok. I experienced some "flushing" of the skin in the face and neck in the first few days where I turned pretty red and got a bit hot, but it passed pretty quickly after onset. Other than that I have had some GI issues, but again, nothing terrible. Hopefully it remains that way as I increase dosages.

- Matt
Hi Lisa,

I have been diagnosed with RRMS in November 2017 after my first relapse. In december, I experienced another relapse which was stronger than the previous one, perhaps because I wasn't fully recovered from it when it hit me again.

My neurologist offered me few treatment options but I decided for the Ocrevus since you have to take it only twice a year, and, according to my research, has the least side effects.

I will receive my third dose in January, and I have to say that I really don't want to stop taking this drug. It took me few months to fully recover from my relapses, but since then, I've been feeling like I don't have MS. No symptoms at all!! I must say that I recommend Ocrevus full-heartedly!

Good luck with everything!

Jana

P.S. I've also switched to low-fat plant-based diet and am working out regularly, so I guess that also helps with my overall great wellbeing!
Hi Jana,

Thank you for your message. Your experience of Ocrevus sounds very positive, that's great that you are now symptom free. I will definitely look into this drug further. Have you experienced any side effects since you've been having treatment and do you need to have regular tests?

Lisa
10 posts Page 1 of 1

Who is online

Users browsing this forum: No registered users and 1 guest