Currently on 44 Rebif. Had great news on Tuesday when my neuro agreed that I could switch to the new tablet Aubagio. I thought great no more injections - yeah. Just received letter from MS nurse saying my liver function tests are raised. To start Aubagio they need to be normal. Neuro is advising that I stop rebif for a month and then have bloods rechecked - bummer. So basically I do not want to stop rebif as doing well on it. Maybe I will ask neuro if I can hold fire with Aubagio and ask for bg12 tablet instead when NICE approve it. Perhaps neuro will say that due to raised LFTs I must stop rebif whatever. Anyone else had this? I really didn’t need this Min xx
My MS nurse came to see me yesterday, we discussed DMT’s. She said she didn’t know when BG12 would become available in England. She also said to me to think hard about Aubagio as I am still child bearing age (39) and if I would like to have children. She said If I go on Aubagio I would need to stop taking it for two years to get it out my system before becoming pregnant. She said that’s how long it takes to get Aubagio out of a persons system.
I would need to check all this with the neuro just to confirm.
Just an update, Spoke to my MS nurse yesterday. Latest plan is to continue rebif. Have LFTs rechecked in a fortnight. She is to ask neuro whether instead of Aubagio I could start bg12 which she told me will be available in November. So that’s a winner for me if neuro agrees as folk on here were saying bg12 was better. Fingers crossed Min xx
Hi min. Are you in Scotland? I’m thinking of starting on dmd’s and was hoping to avoid the dreaded injections and was seriously considering Aubagio but after thinking about it a bit more I’m now not so sure if it’s for me. If I thought bg12 would be available to me in November I might consider waiting til then or is it only going to be a 2nd line treatment? Ann Marie xxx
Hi Ann Marie, I’m in England. Bg12 available in Scotland now. MS nurse told me Nov in England - but I don’t know whether this is reliable info. For bg12 MS needs to be active - not sure whether second line. Just fabulous tablets are going to be more widely available. Waiting to hear from MS nurse if neuro agrees for me to start bg12, continue rebif and recheck LFTs at GP surgery in 2 weeks. Do you have a MS nurse to discuss your options? Good luck Min xx
I am thinking of going on BG12. It seems the people who shout the loudest are more lucky in getting what they ask for. I will keep that in mind when BG12 becomes available in England. My MS was extremely acitve for 12 months xx
Hi Min Yes I saw the ms nurse a couple of weeks ago and we discussed different options for dmd’s I don’t think my ms is classed at highly active so am definitely looking at a first line treatment which where I am seems to mostly be Extavia. I did discuss with her the fact that Aubagio was now available in Scotland and wether I woukd be a candidate for it. She a first said definitely not because it was a second line treatment but when I pointed out that I believed that it was approved as a first line treatment she then started to point out all the negatives and her concerns over the blood tests etc. She said they had not yet prescribed it to anyone and they didn’t know how they were going to deal with the logistics of fortnightly blood tests etc. Overall I felt I was bring gently nudged towards the older injectable treatments, namely Extavia. I did also bring up the option of lemtrada but she reckoned that even if it is approved in Scotland later in the year it would be for highly active ms so therefore not an option for me. It will be interesting to see what the Neuro has to say and what he might recommend. Although I was initially very keen to push ahead and insist I get to try Aubagio I’m now having second thoughts. I’m not a huge drinker but I do enjoy a glass or two of red wine on the odd occasion and would really miss it as I believe you should not drink alcohol while taking Aubagio. If that is the case then that is probably a compromise too far for me and I’ll have to accept the dreaded injections. There’s no ideal option really is there??? Ann Marie
Hi Anne Marie, I think fortnightly blood tests far better than injecting 3 times a week. Logistics - my GP surgery would do bloods for me. If not the hospital - they take loads of blood tests every day - so no problem there. Aubagio is a first line treatment. Problem is its new so unknown at present. In a few years I believe everyone will be offered a tablet rather than injections. Yes he who shouts loudest e.g if you shout enough about how you hate injecting, get awful injection site reactions and are just thoroughly pd off etc Bg12 -for active MS. But then rules are sometimes bent. I believe my neuro has agreed for me to try this. However my MS isn’t active thank goodness. I believe he has agreed because I work for the NHS and he has a soft spot for me. As I have built up excellent relationship with him including being charming and massaging his ego. Yes this isn’t fair but then life isn’t or none of us would have MS. Thoroughly fed up with my awful bowels, fatigue etc and my work related stress is just exacerbating it all - not that they care!!! Keep strong Min xx