Just got back from Wales and I had a letter from my neurologist. It contained the results of my second MRI. Unfortunately I have new lsesions. Pretty fed up right now but would like some advice. They are going to put me on DMDs. My neurologist primarily deals with Beta Interferons. Has anybody had experience of these and if you have, which is the best in your oppinion? Don’t really like the idea of injecting myself everyday but I suppose if it’s going to help then that’s what I have to do. Fairly shattered right now. I hate this fucking disease. Any advice would be gratefully received.
The very best place to start is the msdecisions website. It has plenty of objective information about all the options and will help you narrow down the choices.
We all have different priorities as far as pros and cons go, so while other people’s experiences are helpful, you should go with whatever you think will suit you and your lifestyle best.
My own experience is that Copaxone kept me relapse free for about 3.5 years, was dead easy to inject, gave me no side effects other than some redness and short-lived stinging at the injection site and was easy to travel with because you can keep it at room temperature for up to 30 days. (I chose Copaxone mainly because I was a very active martial artist and couldn’t risk missing training because of any flu-like side effects that the interferons can cause.)
Unfortunately, I started a big relapse and came off Copaxone 4 years after starting it. After a lot of faffing about with MRI scans, waiting for the oral DMDs to be approved and then trying to get appointments, I started on Rebif in June 2011. (I chose Rebif because, if I had to risk the “flu”, I may as well go for the interferon with the best data.)
I have been relapse-free since starting Rebif, the Rebismart autoinjector is very snazzy and easy to use and the needle is ridiculously thin (thinner than the Copaxone one) so the injections are often unnoticeable(!). Side effects have not been so good though - I’ve been unlucky I struggled with bad flu like symptoms for more than 6 months and even now have to take lots of paracetamol on “Rebif days”. To be fair, I can’t take ibuprofen and many people on here say that it is better than paracetamol for side effects. Also, most people do not have this kind of experience: some don’t get any “flu” and most find that it wears off within months. I am also on Rebif44, the higher dose, and the one that gives more severe flu-like symptoms. It is fairly common to start people on Rebif22 which gives much less severe side effects (I had nothing of note when I was on 22).
As far as stats go, Copaxone and Rebif have similar trial data for relapse reduction, although more recent study suggests that Rebif44 is the most effective of all of the injectables. I believe that there is no evidence from the clinical trials that Copaxone helps to slow progression and that only Rebif and Avonex claim to do this on their labels.
The mechanism of a large number of successful drugs is not completely understood. What is understood is their safety and efficacy - these are proven by clinical trials and then in everyday clinical practice (more than a decade in the case of the injectable DMDs).
Please do not allow scaremongering tactics to sway your decision.
Oh EJC, would you please just quit now. You are scaremongering, your sentence highlighted in black is incontrovertible evidence of that. Your opinions are your opinions but you are forcing them upon people in an aggressive and frankly unbecoming manner. Your responses make very upsetting reading and are affecting people visiting or using this site. When you bear in mind that some of these people are visiting this site because they are very newly diagnosed and therefore scared and vulnerable, you and you alone are responsible for inflicting psychological harm upon them. And either you are aware of this and are so angry about Emma’s illness that you don’t care what suffering you place others under or you have set out to do so for some other motive.
You are making your views known loud and clear on the other thread. Please leave the other threads alone.
I am not an educated person about ms but i come here to offer emotional support to those who need it.
There are educated people here who love a good debate/heated discussion but please don’t inflict this on the newbies. Your views scare me and i’ve been diagnosed a few years so god knows what the new people are thinking!
Don’t worry I am not taken in, in the slightest by our resident snake oil seller and I really hope no one else is. Next he’ll be offering to cure baldness and to put inches onto my penis. I am imbued with a very healthy cycnisism. I am, like you pretty angry. I have kind of skimmed over what he has been saying on the other thread and it so obviously a scam. I don’t think that my MS has been caused by bruxism or any disalignment. It’s just nonsense. I wouldn’t be suprised if he isn’t the good Dr himself . I think that we should ignore him but thank you for the link that was very helpful. Please leave this thread alone and don’t respond.
Thanks Teresa, I did get your pm and I am very grateful for your advise. I will give Rebif a go, I think.
Thanks everyone for your replies. Even EJC, as he’s shown what a delightful, caring, supportive, knowledgeable bunch of people there are on this site. So thank you very much. Have a great day.