Hi everyone, hope you’re all well. I have had relapsing remitting ms since 2015, after advice from my neurologist and Ms nurse I started having tysabri infusions then decided a few years ago to change medication to fingolimod which is a tablet once a day. I have noticed getting quite a few side effects so am thinking about going medication free and really trying to change my way of life in regards to fitness and diet and try to control the ms naturally. Does anyone else do this and have any advice? Many thanks
Danielle
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Hi Danielle,
I think some people ( @Hank_Dogs maybe?) find the Overcoming MS website and lifestyle advice helpful.
I asked my MS specialist neurologist friend (yes, I am very lucky to have her 
) about lifestyle advice and she suggested the following:
- Stop smoking, if you smoke (I don’t but you might)
- Take a vitamin D supplement daily (min 400iu max 4000iu).
- Eat a normal healthy diet. Cutting out processed foods is likely to be helpful. There is no strong evidence for following a specific diet for MS.
- Evidence on cutting out dairy is very mixed.
I hope that’s helpful.
This bit is my thoughts now….. To be honest, I don’t think anything beats taking an highly effective DMT. That’s what will reduce the risk and severity of relapses. That’s what my neurologist has said too. I understand you have had lots of side effects from the ones you have tried. I wonder if it’s worth talking to your MS nurse or neurologist about trying something different?
I started taking Kesimpta this week, and for me hat I’ve read and what the house told me, apart from feeling bc a bit crap after the initial loading doses, the side effects are very few.
There are some great info cards on different treatments, including their side effects, on the MS Selfie blog. It’s written by an MS specialist neurologist based at one of the London hospitals. I think he’s called Gavin Giovanni.
If it was me, I would be weighing up the side effects of treatment vs the progression pathway for MS and the effects it will have on your body and cognition. I personally want to avoid losing function in my limbs, sight, bladder and bowels for as long as possible!
I hope that’s helpful.
I wish you well
Alison
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Sorry, there were some typos in that…
What’s it’s meant to say is ‘from what I’ve read and what the neurologist has told me…’
I would expect that lots of people will swear by the drugs that they take and others will say that they would rather do without any. Like lots of things it’ll be down to our own personal thoughts and feelings about taking drugs. Or not. I don’t take any drugs for my ms. RRMS for over 20 years now. Although to be fair about it. I’ve never been offered any kind of DMD treatment. Would I take them if I’m offered? I’m not sure. A little story now.
When I was given the news that I had ms I was without doubt ignorant, naive, head in the sand syndrome. Call it what you like. At that time I only knew three other people who had ms and two were in a wheelchair and the other was having extreme difficulty with walking around and probably wasn’t far off from being a wheelchair user. Anyway, me being naive, foolhardy, thinks to myself that, that’s not going to be me! And I made a promise to myself that I’m going to walk and keep on walking. Maybe I’ve been lucky. Fortunate. But I’m still here. Still walking. Probably don’t walk as far as I used too. Probably walk slower too. Still walking though. I do take the 4000iu vitamin D3 supplement like @lnp8acr says. I also take 100ug vitamin K2 supplement. I eat as healthily as possible without too much readymade and processed foods. Although I’m not totally convinced that any of the diets supposedly for ms sufferers are worth it. As far as I could see they all fell short with the people who trialled them. I have never smoked. Rarely drink and couldn’t tell you exactly when I last had any alcohol.
Has any of what I’ve done made the slightest bit of difference? The vow to keep walking? Eating as healthy as possible? The not smoking? The rarely drinking alcohol? Taking the vitamin supplements? Who knows. Maybe it has. Maybe it hasn’t. Maybe I’m just fortunate that my ms has not been as bad as it undoubtedly is for some people. But, I’ll keep on with what I’m doing. What I know.
Wishing you all the best with whatever you decide @dannit1986 whether you keep on taking the drugs. Or if you give it a whirl without. Hopefully your ms won’t rapidly deteriorate whatever you decide upon.
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Hi Danielle
Not me and I definitely wouldn’t risk it. There used to be someone on this forum who tried it but regretted his decision.
As Alison @lnp8acr says I do find the dietary and other suggestions on the OMS site useful but as the site says - the suggestions are in addition to using a DMT.
I’ve had RRMS for around 19 years and have been using Avonex for more or less the same period. I ve been following OMS for around 18 years and this last year or so have been doing intermittent fasting ( eating within a 6-7 hour slot each day).
Where I am MS wise is that I can walk clumsily for maybe 10-15 minutes and generally keep moving as much as I can each day. Some bladder urgency and sometimes some constipation .
Overall I think I’m not too bad MS wise . I’ve absolutely no idea Whether this is partly down to diet etc or simply Avonex . If nothing else the diet etc keeps me pretty healthy.
There are posts on the forum about fasting including from some one who does 2-3 day fasting @karlerik.heuer who is sure it has improved his abilities massively. You could have a look at that but I definitely wouldn’t give up on a DMT.
Avonex is one of the first 3-4 DMTs to be developed and is now classed as low effective in comparison with the more recent DMTs. It’s a weekly injection and leaves me feeling a bit ‘grott’ the next day or two but nothing terrible
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It doesn’t need to be either/or. Many of us -me included – try to do both: an effective DMD plus doing all we can with lifestyle.
If you were Tysabri, that suggests that the doctors don’t like the look of your MS one bit. Same with my ms.
It’s your central nervous system that’s on the line here, so it’s your risk to manage and your decision to make. good luck with whatever you decide. Personally, I’ll decide to go medication-free on the same day as I can decide to go MS-free.
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The progression of MS can be particularly cruel if left unchecked and you can’t correct damage already done, so a big gamble with your future.
Probably worth having a chat with your neuro first and explain your concerns.
As a matter of interest, do you get any relapses?
The consequences of not treating MS - by Gavin Giovannoni
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Hi, thanks for replying. No I don’t get relapses, just the off days now and again.
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This is really interesting, thanks @whammel
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Well, I guess that suggests the DMT is working, so at least they are doing their job.
All the best with whatever you decide.
Once again @ whammel a good read, I wish now I’d have at least been offered them when I was first diagnosed 19yrs ago, instead I was monitored and told I was SPMS without relapses so didn’t qualify, I would have at least like to have had a go, now in an electric wheelchair and have a lot of issues.
Jean
Just to add to my previous comments. Diet and exercise can help in recovery from relapses and keep your brain generally healthy and functioning but I’ve not come across anything anywhere suggesting that they can prevent relapses- I.e damage to your brain and chord and the accompanying lesions. It’s very very rare if not impossible for the body to repair damage to your brain and chord so once it’s done, it’s done .
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Thankyou for all the replies, they have really helped and are massively appreciated. Think I’m going to keep on the medication as I would never forgive myself if I came off them and had a massive relapse which I didn’t recover from. Also I feel very lucky now that I’m even been given the opportunity of the medication as it seems not everyone gets offered them.
Many thanks
Danielle
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Glad to have helped Danielle, and glad that you’ve come to a conclusion that you’re happy with
Maybe there’s some scope for talking to your MS team about an alternative medication which might give you less side effects?