Hello everyone. I’m back again asking for help/advice/thoughts…
I’ve got a wonderful Neuro and NHS treatment from start to now for me has been amazing. Can’t fault it at all, such amazing support which I am very grateful for as I know that isn’t always the case.
Anyway, I had a meeting with my Neuro yesterday to discuss treatment options and for him to (his words) educate me towards making a decision. For background, I’m 34 and been recently diagnosed with RRMS. 3 relapses in total, two in last four months. First one was most serious as I lost sight in one eye which has now recovered but I’ve found the relapses so far very simple to cope with. And I know that is not everyone’s experience.
As far as I can see I’ve been offered every sort of treatment available from injections, to tablets (Tecfidera) to the monthly infusions of Tysabri or annual infusions of whatever it’s called but it didn’t sound very nice (consultant suggested it was a form of chemo). I’m sorry but I don’t have the name as I can’t decipher his writing and can’t narrow it down from websites. I’d be massively grateful for your thoughts on these and not what you would do in my position as I realise I can only answer that but what works well for you. I have a massive phobia to bring sick and sickness as a side effect really bothers me, other side effects I feel I can cope with.
Also as I’ve been offered the high end treatment I am wondering if they offer that generally or not - he suggested it was extremely expensive (£50,000) and I suppose my thoughts are - are they offering that because I have bad signs that they know of, when tablets would do for many others? Or because of my age and it gives me a longer period hopefully when I’ll be OK? I met a lady who had primary or secondary progressive but she was on no treatment and hadn’t seemed to have been offered it, so why am I offered the lot when I wasn’t as bad as she was?! (She wasn’t terrible by any means). I’ve got time to make a decision but it’s worried me abit as I didn’t realise it would be quite as complicated as it is - especially when considering the side effects!
Sorry for the long-ish post and any comments or thoughts would be hugely appreciated.
tecfidera seems to be convenient, safe and effective.
fingolimod is also a pill based option if you have no heart / blood pressure issues.
tysabri is a ‘big gun’ to be used when all else fails and it could hold significant risks for some.
injections with beta interferons etc are old school, less effective and frankly get boring really quickly.
these are exciting time for some truly beneficial therapies. but pease do not tolerate a doctor’s inability to clearly communicate either in spoken word or pen. if you cannot make an informed decision due to their failure to communicate, they have failed in their job.
I was on Rebif for a few years. It was great for me and really stabilised things, but had to stop it eventually as it started to cause problems with my liver. I’ve been on Tysabri now for a few years, and that’s been great too - hardly any relapses, and hardly any side effects too.
Trying to pick what option to go for is really hard, as there’s lots of unknowns involved. The thing to remember with all of the different options is that they affect us all differently - what’s great for one person may be rubbish for someone else. But if you do find you don’t get on with one for whatever reason, you’re not on it for life, and it’s OK to stop it & swap to another one.
Hope you pick one that works for you.
Dan
(And the reason that lady wasn’t offered any treatment is because she has progressive MS, and all these drugs are sadly only for relapsing/remitting).
I feel sorry for anyone choosing now because, although it is an exciting time, it is also a very confusing one because there is so much choice and I think I would struggle to make a decision if I had to do so now. It was hard enough when I only had 4 DMDs to choose from!
I only had 4 injectables to choose from initially so I opted for Rebif. I had flu type side effects for the first few months and these were controlled well with ibuprofen. The side effects eased just as I went onto the full dose. Rebif worked well for me, keeping me relapse free for 4 years.
It stopped working for me last year when I had two disabling relapses within 3 months so, with my neuro’s guidance, I opted for Gilenya. I didn’t mind injecting but I really don’t miss it now . So far, so good on Gilenya and no side effects to speak of. I’ve been on it 10 months so far and feel very well.
I think the one that you can’t read on your neuro’s list (the chemo one) is now called Lemtrada (originally known as Campath or a very long name that I can’t spell). It is given as a series of infusions just the once but does have some serious side effects, as with all the stronger drugs. I do know a couple of people that have had this treatment and it has changed the course of their MS. I was offered this last time round (it was still in trial at the time) but wasn’t ready for something so aggressive. If Gilenya fails me, I think I would look into it again as one lady I know says the side effects are easier to manage than the MS.
I am on Tysabri, at least partly because it is the most effective drug in terms of slowing down progression and reducing relapse rate. The average effect of Tysabri is to reduce both of these by 66%. For me, the reduction in progression was the most important thing but you need to work out your own priorities.
I feel pretty washed out after having the monthly infusion of Tysabri but have no other side effects. I am JC virus positive but have a low viral count, which means this is not considered a reason to stop the drug.
I think your neuro is offering you these powerful drugs early in your disease because the data shows that giving people these things early leads to better outcomes. This means offering people powerful drugs before they look as if they need them but these drugs may well change the course of the person’s disease. The downside is, if you take the drug and you carry on being pretty much OK, you will never know if that would have happened anyway. I was pretty much fine for seven years after diagnosis, now fifteen years after diagnosis, I am in a sorry state. I probably would have been better if I had been able to go on Tysabri fifteen years ago and I wish I had had that chance.
Hi I agree with last post, have been on Tysabri for three years I’m 33 dx 02 was on betaferon and copaone defore that. Have come of Tyi in Feb this year for a break as was getting run down, had two relapses in six months desperately want to be back on Tysabri best out of all the other Dmds if offered grab with both hands x B
Oh my gosh I am so so grateful for all these lovely replies. Thank you so much, they have seriously helped me to think about what to do. I’m quite blown away by it actually and will try to reply to each of you individually tomorrow. Really so grateful to you all for sharing your experiences.
I was on rebif for a while and continued to relapse.I was offered the chance to have Campath/Lemtrada (this may be the one you’re talking about but didn’t know the name of,it’s an annual infusion,it is a form of Chemotherapy and very expensive).I initially said no as I am incredibly risk averse but then things happened which made me realise I needed to do the right thing and take this chance.I’m really interested to hear to mention your fear of sickness,I too have a huge phobia.When my consultant was running through the possibly,but unlikely,quite serious potential side effects of Campath/Lemtrada all I could say when he’d finished was ‘will it make me feel sick?’,needless to say he looked at me like I was bonkers as for the majority of people this is such a minor concern.I am lucky in that my M.S is not too advanced,my consultant explained that the thinking behind this treatment is to get in early and treat it aggressively before too much irreversible damage has accumulated.I found the while process mentally quite difficult but the treatment has been outstanding and I now fully realise how blessed I was to get on a trial before in got licensed.I can’t say how things would have been had I declined the treatment but as I am now ,I’m so happy I made that decision and,most importantly,it didn’t make me feel sick!That’s the main thing I was terrified about,I know most people will think this is ridiculous but if you have that phobia it can be crippling.As you say,everyone is different and only you can make your choices,that’s the toughest part,I just wanted someone to decide for me!If you are being offered Campath/Lemtrada I would have no hesitation in encouraging you to go for it.It’s terrifying at times but worth it.If you would like to chat more or ask me anything else please feel free to send me a private message.I hope my ramblings have helped and not confused you further!
I have been on Rebif for years and I have found it very effective. I used to relapse twice a year, but with these injections I haven’t relapsed for four-five years. Best of luck with your choice.
I have just had a second planned treatment with Campath - now Lemtrada - over three days.
I have to say that since my first treatment 12 months ago (over five days), I have had no problems and other than monthly blood tests, do not have to have anything else now - no medication or further planned treatments.
The literature makes it sound quite an aggressive treatment and maybe it is, but I have to say that it was more straight forward than I could ever have expected, with results (fingers crossed!) to match…
Just finished my neuro appointment thi morning and I have been offered Tecfidera. He mentioned the injectibles but said that as Tecfidera reduces relapses/ disability (hopefully) by 50% compared against 30% of the others, then this is what he wants me to start on. My start date will be mid November apparantley.
I’m so glad to be offered something and taken serious for once. There are six starters next month on this treatment at the local clinic.