Advice & info on MS disease modifying drugs

Hi, my partner is 35 & has relapse & remitting MS. She has just been told by her doctor that she qualifies for the modifying drugs, but is unsure as to which one to choose, she is looking at going for the beta intaferon but would just like some advice or info from anyone who has used or previously used this drug or any other one, as to how it affected you & whether or not it’s the right one for her, or if you recommend any of the other drugs. Please help, as she really is stuck with her decision,any help will be great. Cheers. Carl (her partner of 10 years).

Hi, we are all different and the way ms affects each person varies. I first had ms symptoms aged 32 but was officially diagnosed about 10 years later. I am now 51 and have chosen not to take any disease modifying drugs. I tried tecfidera for 6 weeks not long ago but felt the side affects were not worth it for me and chose to stop.

I do have 4-6 weekly vitamin b12 injections which I find help with fatigue and I try to eat a low fat healthy diet.

I know this goes against a lot of medical advice but it seems to be working for me, maybe I’m lucky but I don’t think drugs are necessarily the answer for everyone.

Just try and make the right decision for you.

Good luck

Can’t give you much advice, I’m afraid, as everyone is different and has different reactions to even the same drug! I use Rebif, (Beta Interferon 1a) and have the Rebismart - little injecting machine doobry - which make injections relatively easy and painless. I’m scared stiff of needles and couldn’t do it myself, I don’t think - but letting the machine do most of it is OK. As long as I stick to the painkillers routine fairly assiduously on injecting nights and make sure I us a different injection site each time, it hasn’t been much of a problem. I’ve had nothing that I’d consider a relapse since I started it, in Feb 2014. Tecfidera seems to have good write ups, but I haven’t tried it myself so can’t tell you for sure… good luck with the choices! Rebif is considered ‘old hat’ now, and maybe not as effective as some of the newer drugs… but I’m happy with the low risk option at the moment, and it appears to be doing the job.

Hi Carl, Its a tough one I know but I also have relapse remitting MS and have had it since 2010. I feel that I was lucky to have a Neurologist who is originally not from the UK as she offered me treatment from the very start. I was on Avonex for 5 years and in that time had very few relapses and those I did certainly were not as bad as the first.

Sadly, there appears to be a limit for some people, myself included, as to how long these drugs work but there are other options available if they stop working.

I am a great believer in mind over matter but also believe that as MS doesn’t give a stuff what I think, medical intervention is a good thing!

Good luck

Jason

Hi, thanks for getting back to me, I shall let her know, as these injections may help her also, as she gets very tired. Many thanks.

Ok great, yesy partner is thinking of the low risk option, as the side effects are less risk to her. The Beta Interferons, look the better option at the moment, Many thanks.

Ok thanks you, I shall pass on the info to my partner, as all comments I’ve read, will help her I’m sure. Many thanks.

Dear Devil of Zoe…

The answer is easy: Tecfidera.

The list of reasons is considerable. But don’t just take my word for it…

https://multiplesclerosisnewstoday.com/2016/07/05/tecfidera-oral-ms-therapy-rrms/

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Hi

As has been said by others, everyone is different and being faced with a) the news that one has MS and b) the decision as to what drug to take to ward off relapses is difficult.

May I suggest that you (and/or she) has a look at the MS Trusts decision making tool: MS Decisions | MS Trust

Arming yourselves with as much information as possible, then making the decision possibly with the guidance of your/her MS nurse or other health professional is really the best plan as only the two of you will know what will fit into your lives most easily and what degree of risk you are prepared to take with regard to DMDs.

Sue

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I found this resource to be absolutely vital, in my being able to simply get on with a proactive and beneficial plan, subsequent to my diagnosis:

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Hi, I messaged you first on the this thread and thought I would add that although disease modifying drugs are offered they are not the only way to treat ms. I have chosen not to take them and I am doing well. My only problem Is tiredness but it’s manageable,visually none would know I have ms. Everyone is different but do your research and decide what is best for you.There are interesting articles on the internet about diet and lifestyle which may help your partner too. Best wishes Annabell

Hi,

i think it depends on how aggressive your ms is. I thought back over the previous year and I’d had lots of odd symptoms which I wasn’t worried about I have to say that this was 1999 and my diagnosis was in 2000. I started Rebif in November2000 and was having a really bad time. It calmed down, which is what RRMS does,usually. A lot of things have improved since 2000, we get moreMRIs, which shows the level of disease activity. I’m waiting for mine. I had a knee replacement in February and it gave me a nasty episode of symptoms, incontinence, numbness, cognitive problems and they’ve stopped now. I’m doing fine - still. Lucky. I can work, but it isn’t easy. I’m very grateful that I got Rebif and that I responded well.i rarely have the aches and pains.i did the online test at the Barts blog and I reckon I’m about 4.5 on the EDSS. I was much worse just after diagnosis.

Hi, im about to start plegridy, im not sure what to expect but im keeping an open mind. It took me a few days to choose and it really is quite mind boggling. I would have been quite happy plodding on without but my ms nurse advised me to try so as to help to prevent further damage from future relapses. As my relapses affect my vision i think its the sensible thing to do.Good luck with whatever you decide xx

Hi Carl

I have RRMS, was diagnosed in July 15 and I started on Plegridy in Feb 16. Has your partner had a training session with her MS nurses yet? Mine set up a group session but as it turned out only my husband and I were there, with the two nurses.

We watched a video that told us about the various options. I chose to go for injections as I felt I would cope with it ok.

So then it was the decision as to which injectable DMD to try, so they went through them all and gave a demonstration of each type, giving dummy injections into a rubber pad thing.

I went for the easiest option, Plegridy. I inject fortnightly, it takes a couple of minutes. I have been lucky enough to have no side effects at all after the injection, save for an injection site reaction which appears three days later and it’s just a red patch about three inches across (new nickname at home is polka dot). They take a few weeks to fade.

Plegridy is injected just under the skin. I was given a training pen to practise with, no needle or medicine obviously.

The real things is just as simple, you don’t see the needle and it really doesn’t hurt.

Ask the MS nurses as many questions as possible to reassure yourselves and remember, if her first choice DMD doesn’t suit her or she gets side effects that are too extreme, she can always try something else.

Good luck to you both

x