Hi Lisalou, Thanks for getting back to me. You are right about not over analyzing, and you can actually end up doing that with every little ache pain and tingling I guess. I will see what the neurologist thinks when I see her next week. Mad as it sounds with all the weird and not so wonderful symptoms I have experienced over the last few months, I just want some kind of diagnosis, just so I can maybe get some help if another relapse comes along. After the last week I have just had, I could have used something to help me, but had to just stay in bed as much as I could. Thankfully, I feel much less fatigued and ‘hypo’ if that’s the right word, today. Although the weakness and tremors are still apparent. I dread putting my PIN number in the machine at the supermarket, in case they think I am an alcoholic lol. But also been left with back and leg pain that is getting more excruciating by the day. I can cope with the pain though much better than feeling poorly. Hope you get sorted out soon and get the answers you need re DMDs. Love Sammy xx
Hi, LisaLou
I was put on DMDs late 2005 after 3 relapses in the space of about 6 months. (The last one was really bad and lasted 9 months!) I was allowed to choose between Avonex, Betaferon, Copaxone and Rebif. I chose Betaferon, partly because it didn’t need to be kept in the fridge (we used to go camping a lot), partly because it wasn’t injected daily, partly because the injections were subcutaneous, not into muscle. Betaferon stopped my relapses - for a while.
In 2008 I had a relapse. It wasn’t severe (by my standards), but it lasted about 6 months. I had another relapse the following year. Again, it wasn’t severe, but it did disrupt my life for a few months. I was also having trouble doing the injections, so my MS nurse recommended I take a break from Betaferon. That’s when I found it had been causing depression. My moods changed completely when I stopped taking it - I was much brighter and more cheerful. Not everybody gets depression as a side-effect, but it’s worth bearing in mind that it can happen.
Over the last two years or so I was on a clinical trial for Fingolimod, now called Gilenya, which ended in October 2012. I now have it on prescription. I haven’t relapsed at all since starting the trial. Unfortunately it’s not a drug you’ll be offered straight away. Your neuro will try one of the interferons or Copaxone first, and will only put you on Gilenya if they don’t work or cause bad side effects. (The flu-like symptoms you get in the first few months don’t count.)
Good luck, whatever happens!
And it’s yet another vote for the msdecisions website.
To simplify the problem:
Rebif is probably the most effective.
Copaxone has probably the fewest side effects.
But, choosing Copaxone does shut the door on Gilenya afterwards, unless you switch to one of the interferons first.
What you have to decide is which matters most to you.
Just remember that you are an individual, and so is your response to any medication.
There will be other oral meds coming along, no-one knows quite when, or what conditions NICE will put on them.
Make a first choice between the two on the facts above, then think how you will fit the injections into your routine, you will then know which is right for you to start with.
It’s better to start as soon as you can. Every relapse knocks you back a little bit more, so avoiding even one relapse means that there is a litle bit of “worse” that you have avoided, stretching out the time between relapses does mean that there is less “worse” for longer - and that cannot be bad.
Geoff
I was diagnosed with MS in early 1990s … unfortunately came out the blue starting with a grand mal seizure. First docs thoughts were epilepsy, but firstly controlled with rebif … a few months later after an MRI, signs were possibly MS. Ongoing rebif, optic neuritis was obviously causing more concern. Lots has happened, but thankfully, I’m now into my third year of monthly infusions at EWGH & this is helping stablise everything greatly. OK, DVLA have removed by driving licence but thanks to a happy marriage & supportive family, lifes not bad! Guess they’ll be a number of other MS patients on Tysabri? Al
Not sure if you’re still after the info, but just in case…
I was diagnosed prior to DMDs being available, but I would say I had three relapses in the first year, but only one was probably “clinically significant” by today’s standards. My MS then looked more like it was SPMS and my diagnosis was actually changed. I gave up work and everything got much better. I then stopped seeing my neuro - a six monthly “How are you?” followed by me listing symptoms that he couldn’t do anything for didn’t exactly seem worth the two or more hour wait to get into his room!
A couple of years later, I started relapsing again. I asked my GP to refer me to the MS specialist in charge of DMDs in the PCT. By the time an appointment came through, I’d had two more relapses, and my word about those three was enough to be offered DMDs. My diagnosis was changed back to RRMS too. I chose Copaxone as I was a very serious martial artist and didn’t want to risk missing training because of flu effects. It worked really well for me. By the time I started on it (paperwork issues), I’d had four relapses in a year (lots of different symptoms, mainly sensory plus fatigue). I would think only two were clinically significant. Over the next three years, I had only two “blips”, both cognitive - a couple of weeks when I couldn’t do maths and a couple of weeks when my short term memory was completely crap. I had only one new lesion in that time (I used to use the Uni MRI scanner to check!). At the 3.5 year mark, my fatigue started to get really debilitating again. At the 4 year mark, I started what would become a nasty relapse and my neuro took me off Copaxone because “it’s clearly not working anymore.”
An MRI scan showed no enhancing lesions which excluded me from Tysabri so my neuro told me to wait for the oral DMDs that were expected to be approved soon. (It didn’t help that there was a mix up and I had my MRI months after my relapse had started!)
Long story short, I gave up waiting, started asking for Rebif at six months and finally got it 15 months after coming off Copaxone (Gilenya still wasn’t approved at that point). I pushed for Rebif 44 because it had done so well against Campath in a recent trial and is generally held (I believe) to be the most effective of the interferons. In the time I’d been off DMDs, I had either one year-long relapse or lots of back to back ones. I developed lots of new lesions and went from an EDSS of about 1/1.5 to 6, had to give up martial arts and stop work completely. If I split the year up into possible relapses, I would say that only two were clinically significant though (assuming things like bilateral tinnitus are not because they don’t really debilitate me).
I had a month of mild vertigo a couple of months after I started Rebif so I can’t hold it against it; since then I have been relapse-free. It will have been on it two years in July this year. I’ve not had an easy time with side effects, but on balance, it’s been worth it especially as a recent MRI shows that I have no new lesions and quite a few small ones in my cerebellum have vanished (which means at least partial repair).
From my experience, it’s like my MS gets put in a box by DMDs, but when the lid’s opened, all hell breaks loose. So I like to keep the lid on as firmly as possible! If I could go back in time, I would refuse to come off Copaxone until after we’d worked out what I was going on next. It may not have been working as well as it used to, but something is definitely better than nothing!
Karen x
Thanks for all the replies, great advice from you all. I am leaning towards rebif more. I’m really worried about the depression …I don’t suffer with iti but at times feel low and more irritable, short tempered. Concerned this might be elevated. I think they are only offering me avonex and rebif but will find out for certain once I get my appointment through for the nurses. Out of interest how long does the whole process take? X