Last reply 3 weeks ago
Treatment advice

Hi all new to shift ms I have a few questions about treatment so I’ve recently been diagnosed with RRMS and now I’m trying to choose a treatment, slightly worried as I’m one of these people that are put off by side effects so I’ve decided it’s between copaxone and rebif has anyone got any advice on which one worked for them I know everyone’s MS is different but any advice would be much appreciated 🙂 thanks

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stumbler
3 weeks ago

Hi @kimb640 and welcome.

The majority of Disease Modifying Therapies (DMTs) come with potential side-effects. But, we’re all different, so it is not a given that you will suffer any specified side-effect.

You also have to keep in mind, that MS comes with some pretty life-changing side-effects too.

Copaxone and Rebif are two of the first level, and less effective, DMTs. You might want to have a look at this tool to help with this decision :-

https://www.mstrust.org.uk/about-ms/ms-treatments/ms-decisions-aid

It’s a tough decision, but you are able to change your mind if it doesn’t work out for you. 😉


highlander
3 weeks ago

Hi @kimb640
Welcome to the club.
@stumbler is the resident guru so I can’t put in any better way than he has.
Top tip don’t stress it really don’t help.
Keep smiling
Welcome


kimb640
3 weeks ago

@highlander @stumbler thanks for your reply’s I’ll have a look at that now 🙂


lotussana
3 weeks ago

Good Morning, I have been using Rebif for 7 years now. My MS is effecting me more cognitively than physically. Rebif is adding to my depression. We are all different I now have 17 lesions and the rebid isn’t doing its job my doctors want more aggressive therapy however the more aggressive drugs have life threatening side effects. For me the Rebif isnt working. I’m going to start more holistic strategies.


kimb640
3 weeks ago

Hi @lotussanna sorry to hear it’s not working and you have more lesions 🙁 and the side effects of these drugs are worrying I hope you find something that helps you! Thanks for replying and letting me know about how rebif effected you 🙂


jadeshelley
3 weeks ago

I have been on copaxone coming to nearly 6 months now. I class myself as lucky as I have only had the chest palpitations once, I haven’t had any flu like symptoms or anything like that whilst I have been on copaxone. I can say that at first the injections themself did not hurt one bit, but I experienced really bad burning for Atleast half an hour in the area I injected. Now however, when I inject It is hurting and the injection site reactions I am experiencing are quite bad I must admit, large swelling, bruising, redness and itching. I go to see my neurologist in 2 weeks and I am debating wether to switch or not as the copaxone itself I feel is working!! Everyone I have spoken to has had different reactions to the copaxone especially regarding the site reactions. It is a very hard decision to make but you have to go with your gut and what u feel is best for you, and if all else fails you can always discuss about switching if your choice isn’t ideal for you. Do your research and @stumbler is here if you need any info or advice he’s your man 🙂 good luck xxx


kimb640
3 weeks ago

Hi @jadeshelley thanks for you reply 🙂 that’s what worries me the most with the heart palpitations as I already suffer with them And only just got on medication to stop them 🙁 one thing I’m not to worried about is the site reactions because I’m assuming that’s gonna happen with either that I try, I hope you get sorted when you see your neurologist 🙂


jadeshelley
3 weeks ago

Try not to worry too much about the palpitations, it’s not guaranteed and doesn’t last too long!! Just make sure you make the best decision for yourself xx


potter
3 weeks ago

I was on Rebif for 5 years and always felt like I was getting over the flu the next day. It was the only treatment my insurance would pay for. About the time I started having skin rejections to the shots my insurance starting covering the cost of Tecfidera. I have been on it for 6 years now, I had to put up with the side effects at the beginning everything was good after the first few months. You can always try one treatment and then switch to another if it doesn’t work for you. Potter


paulgriffiths
3 weeks ago

Hi kimbo640, I used copaxone and had no issues but as you know everyone is different, I too am in Doncaster are you aware of doncaster and district ms group of which I’m one of the coordinators, were on facebook off your reference. Good luck with your choice.


kimb640
3 weeks ago

@potter @jadeshelley thank you for all your reply’s I appreciate it and it’s helped me loads, I hope you all are coping ok and have found the right treatments 🙂 @paulgriffiths no I wasn’t aware of that I’ll have a look on Facebook now thanks 🙂


dominics
3 weeks ago

@kimb640 – if you look at the MS Reporters videos – all on this site – from the latest global MS Conference for doctors/researchers (ECTRIMS) you’ll see one with Professor Gavin Giovanni, who is a global thought leader.

The latest thought amongst people like him is about ‘inverting the pyramid’ regarding how to approach treatment options in the newly diagnosed. It seems that the feeling is to hit MS hard and fast with the Rolls Royce’s of current therapies.

Think of it like a fight. They rarely start by swearing at one another and then moving to tickling and then sharp prodding. Instead, you step in and whack them as hard as you can.

Many people have entirely legitimate views of treatments, we have all had various experiences (many here have had MS a long time and have experienced the gently step-up, tiptoeing towards the ‘stronger’ treatments – me included) of the many available meds. The science and research should guide you, not one off opinions.

I have had steroids, Rebif, Copaxone and now Tecfidera. Personally, I wish I’d be treated far more proactively from the outset. I really want ocreluzimab.

The only advice I’d offer is to be guided by the views of the best clinicians who are at the heart of the matter. Don’t be swayed by other people. None of us are the same so individual accounts are unreliable if you think that what happened to someone else will be the same for you.

Best, Dom

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