As I was getting stomach pain and reflux after 3 months on Tecfidera, the neurologist said to stop and he’d give me another appointment. It’s been a month and nothing so far. I get vaccines in July and next scheduled appointment in October. I feel so much better off Tecfidera but am worried I’m not taking anything to slow down progression. I think he will offer me Ocrevus this autumn after vaccinations fir hepatitis and pneumonia etc, but that will mean at least 4 months without a DMT. I was only diagnosed six months ago. Keep calling the department but can’t get through yet.
All depends on how active your MS is. I’ve had years without a relapse when not on a DMT but on the other hand I’ve also relapsed when I’ve been on different DMTs
My last lot of relapses was 5 in 10 months, 3 of which screwed with my vision and that was whilst I was on one of the top tier DMT. As treatment was no longer working and I’ve pretty much ran out of DMT effective options or can’t go back to one DMT that does work due to my risk of a serious side effects.
Only real option left was Stem Cell treatment and that took around a year from the referall to begging treatment. Surprisingly, I didn’t relapse once whilst waiting and I wasn’t on a DMT.
Botom line is you may relapse but then you may not. Even on a DMT you may relapse or you may not.Not every treatment works for everyone so even if you started on a new treatment it might not even work and you’d need to be switched to something else.
Best thing you can do is not to worry, best you can, and try not to get to stressed about stuff
1 Like
Hello,
I first noticed MS symptoms in the 90s. I was in my teens and didn’t know it was MS. It got better on it’s own and went away.
MS came back again in my twenties so I started on Avonex.
I needed to change DMD in my thirties so opted for Lemtrada.
Now in my forties, I should be starting Kesimpta hopefully soon.
I honestly wouldn’t say it’s bad not currently being on a DMD, if you feel you can manage.
At the moment however, I am keen to get started again just to reduce the likelihood of another relapse.
If it improves my mobility, I’ll take it as a bonus.
Best,
JP
I spent 3 months between stopping Tecfidera (it hated me) and starting on Plegridy and my MRI showed no new changes but I guess it depends on the individual. Try not to worry too much.
Blimey 5 relapses in 10 months, I guess no rhyme or reason? Drives me nuts trying to understand why relapses happen but my MS at least is mild so far, just a pain in the neck with lifelong ME as can’t exercise.
Good advice to worry less. I’ll get used to it, is just a bit of a shock the first few months, mostly cause my nan died at 59 with MS but that was a long time ago and it was heart failure, which could probably be prevented nowadays.
I wish she’d had the support and meds our generation have but I am grateful we have options.
Cheers and good luck with stem cell therapy, didn’t even know that was a thing yet!
Tee x
Thank you… You’re the first person I’ve found who couldn’t tolerate it. I felt like * (removed by moderator) on it and ended up in bed off work, bad stomach, no voice blah blah…
. Feel so much better now am off it. Did it just mess up your tummy? I thought the omeprazole had solved my tummy problem but I only managed to stick it for 3 months. Onwards and upwards! Does Plegridy give you fluey symptoms or are you okay on it? My ms is mild as it’s new but I’m in that initial phase/first year of flapping about it, maybe cause my nan was so bad with it when I was little and died of heart failure at 59. What symptoms do you have?
Well it isn’t ideal, but absolutely nothing about any of this is ideal, is it? Living with MS all about making the best of a bad job, which is all any of us can do, and is what you’re doing now. I hope you get on your new DMD soon and it really does the trick.
Plegridy does give you flu like symptoms but it’s a lot less severe than Avonex which I was on for 3 years. I wanted to switch to a tablet, but when that didn’t work I decided to try an injection every 2 weeks, rather than every week. Plegridy is the same as Avonex, but with a slow release addition. I felt slightly nauseous initially and sometimes get a bit of bloating which I take a buscopan for and I take paracetamol, but it’s eased off now I’ve been on it nearly a year. I much prefer it. It’s easier to travel with than Avonex too as it can be out of the fridge for a lot longer so no cool bags etc.
Yeah mine seems to have period off frequent activity then behaves for awhile before starting back up again.
Get the exercise thing. Don’t have ME but I gaveup exercising as I tire easily and when I have been improving a relapse takes it all away. Having to watch what I eat now as I’ve gained a little weight since Stem Cell transplant in Feb. Don’t like my chances of shifting it and don’t really want to put more on.
Sorry to her about your nan. So grateful we have treatment options nowadays.
Stem Cell transplant is still a fairly new treatment for MS and is only offered provided you meet certain criteria. Criteria can change depnding on Hospital and there are only a few Hospitals in the UK that provide it. 4 months so good.
Hope you remain Relapse free till you can start a DMT
I’m excited for you as you’re clearly getting yo try cutting edge treatments. Obvs would be slightly preferable not to have the ms in the first place but where there’s life and all that…
I am guessing you’re a man from your username, I thought only women worried about our weight! Am trying to do yoga and stretches, often lying down, which feels good and is better than nothing. Glad you’re doing OK 4 months in. I’ll read up on stem cell transplants.
I’m from London but live in the Canaries so not all bad. Nice views! Bloody hot now which I’m not tolerating as well as I used to but you’ve had the heatwaves in the UK too.
How long have you had MS and how old were you when diagnosed? I was 51 so late starter.
Guys can worry to just that most won’t admit it if they do. Not perceived as ‘Manly’
Never been big guy but I can now grab a good chunk of fat around my waist and some of my jeans/shorts are a bit tight. Really don’t want to have to replace my entire wardrobe. I’m tight 
I’m still a size 30, just, like I was at school
On top of that as I tire easily I think being heavier would make matters worse.
Yes I’m a guy, though until recently I frequently got mistaken for a woman because of my long hair…no longer have since all the Chemo 
I do miss my long colourful hair. Was always a nice conversation starter with it being Blue, Purple and Teal
MS Society has info on it
Not sure I could cope over there and yes it’s been bloody hot over here…prefer the cold as it’s easy to warm up with another layer. Can’t exactly strip off to cool down and sometimes that wouldn’t be enough anyway.
I was 34 when diagnosed. Pretty sure I’ve had symptoms back to 28 though. I’m now 43
Wow yeah 51 is on the late side isn’t it. I was lucky and didn’t have to wait long for a diagnosis, replased 2 weeks before I was due to seen a Neurologist. Have read some having to wait for years before getting a diagnosis. Hope you didn’t have to wait too long?
1 Like
i am newly diagnosed but my specialist wanted me onto DMT’S as quickly as possible im 6 weeks in and have had a mini relapse and a major relapse in the space of 2 weeks, i start on Kesimpta in about 5 weeks time - looking forward to getting onto treatment.
1 Like
No… In fact, I found out by accident. I had an MRI on my neck as I had been losing sensation in my hands for years, thought it was a pinched nerve. They found a demyelinating lesión in my neck last year. I had had an MRI of my brain 3 years earlier as was so worried about worsening cognitive function but no lesions then, though some vague gliosis, damage to nerves. So I was diagnsoed really fast but been searching for answers to increasing fatigue and weakness, cog fog for about 4 years. Just so lucky I had private insurance as I don’t think the Spanish NHS would have done the MRI on my neck.