@Syrenna13

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Syrenna13

Betaferon vs Lemtrad

Disease modifying drugs Betaferon vs Lemtrad Pros and cons??

Syrenna13

@Syrenna13

So I asked my consultant if I can start Lemtrad treatment and he asked me if I wanted children anyone has it is know to have a effect on your fertility. So he has advices me to start Betaferon. Is anyone on this and what do you think?

Nawal_Ibrahim

@Nawal_Ibrahim

Hey. Honestly that's the first time I've heard that. Lemtrada doesn't really effect a person's fertility and stuff. Before I started it I was informed that I just shouldn't during the time after. I know I'm just 19 but the only MS drug that causes complete infertility is stem cell treatment. Now thinking which drug is better- betaferon/lemtrada. I think both those drugs do help, I think it's more about whether you want to constantly prick yourself. In my own undetgoings I prefer lemtrada as it's a stronger drug. I don't know if this helped at all but I hope it did

Stumbler

@Stumbler

@syrenna13 , I'm with @nawal_ibrahim , I haven't heard of fertility issues with Lemtrada either. All the other DMTs should be stopped prior to conception, which can cause its own problems. As far as Betaferon vs Lemtrada, apart from the above, Betaferon is an injectable and is less efficacious than Lemtrada, which involves two rounds of infusions a year apart. Lemtrada also does not stay within the body for more than a few weeks.

Katy79

@Katy79

Hi @syrenna13 I'm 37 - and am on lemtrada. I don't have children, and probably don't want them, but my fiancé and I haven't quite yet finally landed our conclusion on this so given my age this was something I looked into before selecting treatment. My thoughts below: - You can't get pregnant within 4 months of Lemtrada infusions. Whilst it is not recommended to get pregnant on most of the other DMDs, there are some where it is possible under neuro supervision - although this may carry extra risks to the foetus - If you come off of a treatment which requires regular injection/tablets etc to get pregnant there is an increased risk of relapse during this time (as you are not on a DMD). This isn't the case with Lem as the Lem infusions permanently alter your immune system so you don't rely on regular top-ups. However, the risk is mitigated by the fact that you are less likely than usual to relapse whilst you are pregnant (as somehow the body protects itself). Unfortunately, there is a higher than usual chance of relapse in the period shortly after birth - as this extra protection falls away, you are more susceptible for some reason and you don't have the protection of a DMD (save if you've received Lem - as the effects are permanent). An MS relapse after birth with a new baby sounds particularly unhelpful! - It is possible to get pregnant in between Rounds of Lem - providing you leave it four months after the first set of infusions. In this case, the second round of infusions is deferred until after birth. There are a few people on the Lem Facebook Group who have done this (and many more who have gone on to have babies post Round 2 of Lem) - If you pick up a side effect from the Lem (e.g. a thyroid problem) this could also introduce additional risks for pregnancy. However, these can be managed (lots of people with thyroid problems have healthy babies all the time) - and you may not get any Lem side effects - My main thoughts about possibly becoming a Mum were to make sure I was as healthy as possible for as long as possible - to be the Mum I would want to be and provide for a physically/emotionally/financially stable future for my baby. The increased efficacy rates of Lem over any of the other treatments made this a winner for me (and this was the case regardless of where I eventually land on the baby question) Obviously a super personal view - and not necessarily the right one - but hoping my line of thought may at least prove helpful. I have R2 Lem in 2 weeks, and my fiancé and I have promised ourselves we have one final check-in on the baby conversion in the new year when I am four months post and safe to conceive in the knowledge I've done all I can to protect myself against the MS. This way we can have the conversation focussed on whether we want to be parents (probably not) rather than clouding that conversation with worries about what it may mean for my MS and treatment. That said, if we do want to be parents given my age the race against the clock will be on - and it will be honeymoon baby here we come! K

Syrenna13

@Syrenna13

Hi guys just give you more info So went today to see what treatment I can start and when I mentioned Lemtrad they told me it kills your eggs and for men the sperm, so if i wanted kids in the furture i need to take into count that my chances are less due to the lemtard he explain it's very strong it's CHEMO they also give it to cancer patient too and my eggs are at risk after treatment.... which is why he said it can 60% effect fertility in the long run mostly for men. But I have not yet ruled it out I just am waiting to be referred to Sudbury has they don't do that lemtrad in Essex.

Syrenna13

@Syrenna13

Am hoping or thinking my consultant don't really know much about it and gas wrong information.

TracyD

@TracyD

@syrenna13 In response to your post ....... - they told me it kills your eggs and for men the sperm - This is incorrect it DOES NOT kill anything except CD54 bearing T & B Cell lymphocytes - they also give it to cancer patient too and my eggs are at risk after treatment - Lemtrada is a repurposed drug, Alemtuzumab was used historically under the brand name Campath-H to treat Leukaemia - Dosage in use as Campath-H was 12 times higher than a single dose as Alemtuzumab (to the entire 2 years of treatment equates to 3/4 of one single treatment when used in it's previous designation. Lemtrada is a Monocolonal - NOT chemotherapy - it is designed to target only a specific cell type which comprises 1 part of 1/3rd of the immune system. - my eggs are at risk after treatment - again this is NOT true - as this is NOT chemotherapy - he said it can 60% effect fertility in the long run mostly for men - again this is NOT true - as this is NOT chemotherapy In relation to getting pregnant, the advice is that after receiving a round of Lemtrada that LADIES wait for 4 months before trying to conceive - this is because part of 1/3rd of your immune system is compromised, and it is advisable for both the health of the mother and the foetus to wait until there are at least a small number new lymphocytes in the mothers system should the mother contract an infection ...... the 2 rounds are 1 year apart, so waiting 4 months and concieving between rounds with the 9 months required to carry a child to term isn't possible unless you have a time machine ..... that said, I know of many people who have had happy arrivals between rounds and it's not caused problems. My advice would be to request that you are referred to an MS specialist Neurologist - one that actually knows what they are talking about rather than his person who clearly is at best uninformed at at worst grossly incompentent and negligent :-(

Syrenna13

@Syrenna13

@tracyd I agree with you, thank you for this information, I Said to my husband when I got home that I felt the my doctor was really trying to discourage me from lemtrad treatment but I asked to still be transferred to a new neurologist...when he was talking nothing added up to what I had heard about or read.

Syrenna13

@Syrenna13

He also said it can take up to 4-6m to be transferred to Sudbury and in the mean time i should start on Betaferon. Which i did agree to.

JasFromTas

@JasFromTas

@syrenna13 I would second @tracyd 's comments (have also had Lemtrada, second round Oct 2016; it does not make you infertile!). A little about my personal experience; I had it the first round about 5 months after it came on the market in Aust and have another Tassie friend who had it literally weeks after it became available, a few months before me. Everything she went smoothly (both rounds 1 and 2). She is due to her have her first baby (conceived naturally) - later this month! :) Lemtrada has been very effective for both of us (we were both spending months in hospital/year). She was previously walking with a stick, but is now independently walking and has returned to work (GP nurse, part time). I was previsouly using a 4WW/wheelchair, and am now using 1-2 crutches or a wheelchair (and still teaching nursing, use a wheelchair at work) - I doubt I will regain enough mobility to return to clinical work, however given my baseline and decline pre Lemtrada stability is a great outcome. Unfortunately I developed ITP earlier in the year, but this seemed to be managed in a quite straight forward manner, though I was very sick for quite a few weeks and my count is being closely monitored (I am a Jehovah's Witness, so weighing up to have Lemtrada in the first place was no small decision, but Gilenya and Tysabri had bot not worked for me). And no, before anyone asks - being a Jehovah's Witness did not change management of ITP (for me), however it was something I had to take into consideration, as had I had an accident whilst my platelets were <5 (as they were - and yes I was symptomatic) I needed to know that this was a decision I was comfortable with before I had treatment. Please do not underestimate the risks or implications of treating side effects associated with Lemtrada - a 3% chance of ITP (I can speak only of this - as this has been my experience), is in effect 1/30. I was on 80-100mg pred/day (no joke) for more then 2 months (then a slow wean). This was NOT fun. My neurologist has another patient who was on pred for ITP for more then 6 months (so perhaps I have been fortunate), but I felt pretty ugly. My Haematologist has stated that there is a 1/3 chance of it coming back in the next 2-3 years (she is a platelet specialist, who did her PhD using Alemtuzumab, albeit not for MS), which is a bit scary (my count when from 260 to 5 in just 10 days the first time, so this as completely battered my confidence with travel/life - I was booked for a holiday from Australia to Sweden in June which I cancelled). Obviously I have been advised not to have any more rounds of Lemtrada, irrespective of disease activity. This may sound like a negative-nancy post re Lemtrada; please be assured it is not. I was diagnosed in 2012 and 18 months later was using gait aids, (and had no life to speak of between hospital and rehab after that). Lemtrada has given me my life back. I do feel like I made the best decision with the information available at the time (and at the time, it lead me to have Lemtrada). That may end up being the same for you (or not). In the end I am not sure there are many good decisions in this MS DMD game; so many drugs with and so many crappy side effects/risks! If you are weighing up Betaferon and Lemtrada I have to ask - these two drugs have very different efficacy and side effect profiles. It might be worth having a comprehensive look at all the DMDs available to you before you make a decision between just these two. Kindest regards Jas

tinyblue

@tinyblue

Hey @syrenna13, haven't tried lemtrada, but I can tell you about betaferon. I was on it for around six months as my first treatment after diagnosis. The problem was that I was very slack with taking it, as it would really hurt injecting myself every other day. It also made me feel like I had the flu for a while, but that eventually went away. I agree with @jasfromtas in that they look pretty different, so I really can't say. Just thought I'd let you know my experience!