Hi
Has anyone been ok with either of the two in title mentioned?
Just returning from seeing neuro for first time to discuss treatment, he said he won’t offer me ocrevus as I have crohns that even though causes me no issues at present might cause a problem that he’s unwilling to take as one of his patients has had to have half her bowel removed, I asked about tysabri but was told that might be an option if tecifidera or ponvory doesn’t stop relapses , I’m gutted as really wanted to get on one of the high efficiency dmts early on .
Any feedback on tecfidera or ponvory greatly appreciated
Thanks
Hi, I was on an injectable DMD for about 15 years until they stopped prescribing it. I then changed to Tecfidera 4 years ago and it’s been fine. No relapses since the change. There can be side effects for some but I was lucky not to have experienced them. These include flushing and stomach problems but take the capsule with a meal and that helps. I also have full blood tests every three months so any problems are caught early.
Good luck with whatever you go ahead with.
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Hi kestrel
Thanks for replying, at the minute Tecfidera looks like the one I’m leaning towards, not gonna lie I’m disappointed I’m not being offered one of the big hitting DMTs tysrabi was another I wanted to try but that seemed to be pushed under the table possibly due to cost
Glad to hear your still doing well under the tecfidera 
that’s a long time you’ve had ms hope you doing well I’ve done so much reading up before this meeting today how the big hitters can stop progression if started early I felt like I was given a lesser chance of putting off disability in future with Tecfidera , hopefully I’m wrong
Thanks again
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I’m quite a typical Tecfidera patient. Had one relapse in the first 2 years and no relapses since (last relapse May 19). Its well n truely in my system now, and apart from a few 20 minute hot flushes every week causes no bother. My Lymphcyte could averages around 1.5. Im happy on it. Ocverus has a higher cancer risk and Tysabri has a higher PML risk so I feel very fortunate to have “active” and not “very active” RRMS.
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Hi rc Bristol
That’s great to hear your also doing well
So that’s over 5 years without any disease/ disability progression?
Thanks for taking the time to reply
5.5 years with no disease progression seen on regular MRIs. A couple of new symptoms have crept in from legacy lesions, which get slightly, but not rapidly, worse year on year.
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Hi
Sorry legacy lesions?
Good to here your still mobile
I’ll make final decision over weekend I think but looks like it will be tec over pon as I can’t find much reviews on here from pon
Thanks again
Nobody on ponvery ?
Seems like it’s not a common treatment
I would be cross about that in your shoes too - I would want my neuro to offer the most effective suitable DMD and if that (as in your case) would have been Orecevus but couldn’t be, I would want that to be Tysabri. I think what I would do in your shoes would be to sit down and write a letter to my neurologist explaining that, having reflected on the consultation, I would still like Tysabri, explaining my approach to risks and benefits, what is most important to me in terms of treatment options etc etc. The worst he/she can say is no, and at the very least you’ll have laid the ground for a rapid switch up if you lose this round and your MS does break through.
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Hi Alison
Thanks for replying
I’m really annoyed , he kept mentioning cost, there was a pharmacist also in the room so not sure if he was there to keep eye on expenditure
Thanks for helping in what to do as I’m at a loss
I’ve changed my lifestyle, diet doing as much as I can my side and feel like they have let me down on their side
Then part of me thinks I’m just being a nuisance by putting up a fuss
I’ve got to ring tomorrow to tell them which one of the two I want to take , I might ask again why tysrabi has been taken off the table and if they say because of cost not sure what I can reply with 
I appreciate your input
Thanks
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That is dispiriting and sad to hear - I am sorry. If I had spent 10 or 15 years deepening my experience and becoming a technical expert consultant neurologist, I wouldn’t want to be intimidated by a flipping pharmacist, would you? I mean, no disrespect to pharmacists (who are technical professionals themselves), but really?
I wish I was clever enough to put a worked letter together correctly to tell him how I feel
hopefully tomorrows call will help but I very much doubt it
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Hi, I’ve been on Tecfidera for just about 6 years. In that time I’ve I’ve been relapse free with NEIDA on all my annual MRI’s.
I take one tablet morning and night, usually with food.
I had some hot flushes back when I was a newbie to the meds but that next to never happens now.
Blood tests every 12 weeks or so to monitor my Lympho count which has been pretty stable.
Based on my experience I would highly recommend it.
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Hi
That’s awesome news
I’m glad your doing well on it
I’ve read so much lately about getting on a high efficiency dmt as soon as possible, I’ll try attaching a link , it’s good to hear other people are doing well on it thanks for letting me know
Can I ask if any worsening of symptoms in that time and was this your first dmd ?
Thanks
Hi, yes, this was/is my first DMT.
I’ve been relapse free and in good health since 2 bouts of ON led to my diagnosis in 2018. No worsening of symptoms.
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That’s great to hear , long may it continue
means a lot to hear from someone who is living with this disease and not just a doctors opinion
Thanks again
From the research I have done, my understanding is that the modern b cell blocker drugs which have been launched in the last two or three years are high efficiency in that they start working within a few weeks of taking them where was tec works within 6 -24 months and it is a t cell blocker
I suppose with every DMT it’s a case of risk v benefit within an individual’s particular set of circumstances.