Hi everyone
after a few new symptoms, an appointment was obtained by my ms nurse for a rewiew with my Nuro.
I must admit I was impressed, I spoke to my ms nurse Monday, and got phone call yesterday for appointment, it was agreed I would start treatment as soon as I’d decided which one, have read through all my options which are:
Beta-Inferoen
Copaxone
Aubagio
Tecfidera
Could I please have some advise about these drugs are you/have you been on any of them, what was your experience and side effects. Any advise would be invaluable.
Thanks Ann x
Hi Ann
I don’t have any experience of the drugs - but was curious to see that Lemtrada is missing. If you are eligible for Tecfidera you should also be eligible for Lemtrada - as both require a diagnosis of active RRMS and can be diagnosed as a first line treatment under the NICE guidelines.
Whilst it may not be the drug for you (as it does have some punchy longer term side effects and isn’t appropriate for people with some other medical conditions), I just wanted to flag in case you wanted to push for a more effective drug than those being offered and accept the risk of the side effects. For info, I was diagnosed with active RRMS in June and, despite having thankfully recovered in full from my (thankfully not too severe) symptoms, I’m lined up for Lemtrada as a first line DMD next month. From my reading into this it seems that neuros are split between those who are prepared to offer Lemtrada as a first line DMD and those who aren’t. I strongly belive we should all be given the full spectrum of choice to then discuss with our medical teams - to discuss their merits/ downsides and our attitude to the management of our disease - so just wanted to flag
K xx
Hi Ann
Have a look at the info on this tool: MS Decisions | MS Trust
I’ve had 3 of the four, in my opinion, Tecfidera is the most effective and as it’s an oral treatment is in many ways the easiest to take. However, the least side effects for me were with Copaxone. Basically I didn’t have any and stayed on it until after 5 years it appeared to have stopped working for me.
Don’t forget though, that if you opt for beta-interferon, that there are 3 options to pick from (4 if you have the choice between Avonex and Plegrigy which are the same drug but one is weekly intramuscular and the other fortnightly subcutaneous!)
Or of course as Katy said, it’s worth investigating Lemtrada. It will depend on how active your MS is as to whether you’re prepared to risk the side effects, as well as your neurologist agreeing whether it’s the most suitable for you.
But it’s very much a personal choice. The problem is that when you’re faced with a whole load of options, none of which you have any experience or knowledge about, you could do with professional help in choosing. But you’re not alone in being faced with this choice without any such assistance.
Just keep in your mind that with any of the four options you’ve been offered, if one doesn’t suit you, then you can change to another drug, and in fact can change to a second line drug like Tysabri (which is actually in my opinion the best drug if it works for you and so long as you don’t have bad side effects from it). The only one that’s a “throw all your eggs into one basket” option is Lemtrada.
Sue
hi
i did 12 months on copaxone but had very nasty injection sites and my ms nurse suggested i try one of the oral therapies.
i chose tecfidera and it’s coming up to 12 months now and i haven’t had a relapse.
although the risk of PML is always there i get 3 monthly checks with my ms nurse which is reassuring.
it’s one of those things where everyone’s experience of ms is different.
the best of luck to you with whichever drug you chose.
carole x
Many thanks to all of you for taking the trouble to reply, it really has given me something to consider.
Kathy I have read up on Lemtrada but think it may not have been offered as I have an underactive Thyroid and may not be suitable.
Im thinking of trying Aumbagio or Tecfidra although the Pml risk is a bit scarey so I’m still not sure.
Catwomen what side effects have you had with Tecfidra and do they gradually wear off once your body is used to it?
Sue mmm injections Coxpane have to read up on that again, my son is diabetic so needles are not a problem, but not tried on myself of course.
I’ve still got weekend to mull it all over, there’s such a lot to take in !!
Ann x
Tecfidera is most likely of the list to to be effective. The big trials find by about 50% the injections by about a third. Aubagio is perhaps a very little less effective than the injectables.
Also, how often are blood tests with Aubagio?
I am on Tecfidera (after being on interferon beta) gastro. effects and flushing became negligible though had the benefit that I do not need senna anymore. Since I have the usual 3 month blood tests I don’t worry about PML.
I think there is a new formulation of Copaxone allowing injections to be 3 times a week rather than every day but, if it were me, I’d still prefer the efficacy of Tecfidrea
Hi Ann
I don’t think the PML risk with Tecfidera is a big issue. It only becomes an issue if you have significantly lowered Lymphocytes and they test these every 3 months anyway and if they dip too low you come off Tecfidera.
I’d tend to agree with Vithfari and Carole, Tecfidera is easy to take as it’s an oral therapy and out of the first line treatments (apart from Lemtrada of course), it offers the best reduction of relapse rate. So if your feeling is that you want an oral DMD, then Tecfidera is safe and the most effective option.
If you did go for an injectable DMD, I really wouldn’t worry about the subcutaneous injections. The needle is very small and in the main they have a method of injecting so you don’t even see the needle going in. Some people do get injection site reactions, but in the main they are quite well tolerated.
And I think you’d right about the reason you can’t have Lemtrada, one of the most common effects is that people develop Graves Disease, which is an auto-immune overactive thyroid. You could think that replacing underactive thyroid with overactive would be a good idea (ie one would cancel out the other), but really it’s probably not as simple as that. I’ve actually had this conversation with my neurologist because I’ve had Graves Disease and now have an underactive thyroid. He didn’t want to absolutely rule it out because of the thyroid, but said he’d have to get mor expert opinions on it. (In the event, I’m not a candidate for Lemtrada anyway for other reasons.)
So good luck with making your choice. Hopefully you’ve been reading up on all the options as well as asking on here so will be able to make a well informed choice.
Sue