Last reply 4 months ago
Drug choices

I got diagnosed in Feb this year and finally got to see consultant yesterday. I now have to choose the drug route I go down. As I have relapsing/remitting I have been offered DMDs so do I go down the less aggressive like Avonex, Extavia or plegridy. Or the more aggressive and more dangerous route ofLemtrada? Any advice would be greatly appreciated as my head is not in the best of places at the moment. Too much to take in.

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stumbler
4 months ago

Hi @sjjones and welcome.

This is all new to you, so take your time. The present thinking is to hit MS hard and fast with the most effective treatment. Why take the risk of accumulating more damage, which could be disabling, by starting on a less effective treatment?

Here’s some reading for you, which aims to provide you with all the information to help you decide :-

https://support.mstrust.org.uk/file/store-pdfs/MS-Decisions-ALL.pdf

It’s quite extensive, so could be a cure for insomnia. 😉

But, feel free to pose any questions you may have.


sjjones
4 months ago

Thank you I will read the link and hopefully it will help with the decision,.


gp14
4 months ago

Hi @sjjones, I was officially diagnosed last October, however my neurologist warned me of MS back in 2015 and advised supplements but I did not take it very seriously as I was young at the time. My neurologist gave me the choice of Tecfidera or Lemtrada and I decided not to take any DMD at the moment.

I recommend reading http://www.msbrainhealth.org/perch/resources/pfms008-ms-brain-short-report-02.pdf and get a free copy of Overcoming MS which your nurse can help you with.

There is a chapter on diet, exercise, meditation and DMDs. I’ve changed my diet to low saturated fat and no meat and taking a number of supplements (B12, high dose vitamin d, fish oil, biotin and yesterday my GP has put me on an iron supplement as I am always tired). In addition, I now go to the gym 3/4 times a week. Before I was not exercising regularly or eating a healthy balanced diet.

For me, I don’t like the idea of taking a DMD that is not 100% effective when my symptoms are bearable and the risks and side effects of the medications may cause more trouble than the MS itself. Last year I had 2 minor relapses and none so far this year. I feel diet and exercise so far is making a huge difference to my everyday well being, however I am keen to see the results on my scans over the next few months.

It’s a hard decision to make, I spoke to many MSers on here and did a lot of research before making a decision I felt is right for me right now. I may change my mind in the future when there are newer DMDs or if my circumstance changes.

Let me know if you have anymore questions and if you wanted information on the supplements. I hope you make the right decision for you 🙂

Thanks,
G


sjjones
4 months ago

Thanks gp14 yes it’s just so overwhelming and difficult, especially when you are mentally drained, upset and confused. I only got given the options yesterday so I’m going to take a few more days to let me research fully. I appreciate all of the comments and advice I’m getting on here. It’s better now I’m talking to others, don’t feel so alone now


adamframpton
4 months ago

Hi @sjjones
I was diagnosed around 14 years ago now, and can still remember the initial shock. Hopefully you have people around you to help and support you through this difficult time.

As you have said, I think that it is important to take your time and gather the facts of the options available and to choose what you feel the best option for you is.

There is an abundances of knowledge and experience available on here an I have always found everyone to extremely helpful and supportive.

I myself have had Rebif, then Techfidera and have recently had my second course of Lemtrada treatment with both treatments going very well (apart from the fatigue) felt this was the best option for me that was out there and negated having to take medication on a regular basis.


sjjones
4 months ago

Thank you adamframpton, that’s kind of the route I have been thinking of. Honestly I’m too scared to go for the Lemtrada at the moment. I have two young children, so I’m thinking try the less aggressive first. Thank you for this. Having a chance to speak to people who understand is helping a lot


vixen
4 months ago

Hello @sjjones, there will also be lots of posts on here about each DMD if you use the search button. I would say that if this has just been suggested, you should probably take a month or so to research. Definetly do this through trusted and official sites, and remember that the drug company themselves will have an agenda with their blurbs. I don’t know what age or stage you are, but for me, maintaining a lifestyle was one of the main reasons for my choice. Lots of support on this site for you, good luck!


rambles
4 months ago

Hello @sjjones. The MS Trust’s ‘decisions’ site is a good starting point for thinking about DMDs (referenced above by @stumbler) but there is also a wealth of material out there about lifestlyle approaches to MS, some of which are a bit less pro, or even completely anti, DMD. (The OMS book mentioned above is good and clear.) Barts’ blog is quite involved and at times a bit too technical, at least for some 😉 but good on the latest research into DMDs. Hopefully a bit of reading on it all will help … but not too much all at once. X


marcyg921
4 months ago

Hi,
First off sorry to hear about the diagnosis. This isn’t something anyone should or wants to go through but we’re here if you ever want to talk.
Now as for treatment. When I got my diagnosed my Neurologist wanted me to go straight to Lemtrada as he was worried about the amount of relapses I had and he wanted me to hit it hard especially while I’m still young. Obviously the side effects and the monthly bloods did worry so I enquired about something less aggressive and he did say he would put me on it but he didn’t think it would do me much good in the long run.
Now I’ve had both rounds and I can honestly say Lemtrada has been an absolute miracle drug for me. I haven’t relapsed since 2016, all my blood tests have come back absolutely fine with no sign of anything to worry about and my recent MRI scan showed that not only were there no new lesions but some had shrunk. Not to mention all the problems that MS have caused me have either gotten better or have completely gone.

Overall I’m not saying go for this as this is just what Lemtrada has done for me but I can’t compare it with other treatments as I wasn’t on them and who knows they may have done the same and I know some people that have went on the lesser drugs and have lived great lives. The decision in the end will come down to what you want to do and what you and your Neurologist thinks whats best.


grandma
4 months ago

Hi,
I’m one of the old codgers, had Avonex for 23 years (even got used to the heedless) was changed to Tecfidera last year 2 tablets a day instead of the needle,joy, Used to have the usual flu symptoms with Avonex, learnt to do the injection ar 9pm so when the symptons hit I was in bed, ok the next day, bit slow until lunchtime, then all ok. Been on the Tecfidera for 6 moths, usual symptoms in the first few weeks, all ok now, but they do tell you about the possible side effects do no shock there. Everyone is different, and you are unlikely to have the same problem yours could be worse/better,so as you are doing, take your time, find everything out you can and make your decision on ‘gut ‘ instinct, our guts are rarely wrong.😍

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