Hello all,
Not been on for a while so hope your all well as can be and keeping cool.
Had an appointment with my consultant on monday, just general check up and he has arranged for me to have another mri scan (my last was in 2011). Is this normal? Should i be worried? He did hint at new meds.
Thanks in advance :))
Kelly
Hi Kelly
same thing happened to me last week. My last scan was 2007 however. He said he just wanted a new ‘baseline’.
K x
Hi Kelly,
I would imagine it’s because he’s contemplating the switch of meds. I can’t see what the point would be otherwise.
Some drugs are only offered if there’s a certain amount of activity, as evidenced by MRI. So if he’s thinking about one of those, he needs to check you’d qualify.
Tina
x
Ahhh right I see, I would like to give something else a go as not had the best time on rebif.
Thanks ladies xx
Ahhh right I see, I would like to give something else a go as not had the best time on rebif.
Thanks ladies xx
Hello all,
Just an update, had my results and there are a few more new inflamtions showing up, seeing my consultant on the 29th to discuss new meds. I just burst into tears when i opened the letter as i really hoped there would be no change 
Anyone no what meds he might suggest? Im currently on rebif.
xx
Hello all,
Just an update, had my results and there are a few more new inflamtions showing up, seeing my consultant on the 29th to discuss new meds. I just burst into tears when i opened the letter as i really hoped there would be no change
Anyone no what meds he might suggest? Im currently on rebif.
xx
Hi Kelly
I know that feeling . I knew I had had one relapse this year but was convinced (probably in denial if I’m honest) that my left leg was playing up due to overcompensating for the right one.
When my neuro told me it was two relapses just three months apart and this meant that Rebif wasn’t working for me any more, I was quite down-hearted for several hours afterwards. I don’t know why it had such an impact on me but I did calm down when it sank in.
He offered me the choice of Copaxone (presumably as it’s not an interferon), fingolimod (Gilenya) or the option of talking to the Campath trial team. He did say if it was him he would opt for fingolimod and I was already thinking the same, so that made my decision easy.
Now I’ve just got to pass the tests to get on it!! My ECG wasn’t entirely normal so I have to have an ultrasound on my heart next week before the cardiologist will make his final decision.
You’ll probably be on a new med before me and I made my choice in August 
Good luck whatever you decide. The frustrating part is the waiting.
Tracey x
Oh meant to say, if you’ve had more severe relapses or lots of activity, your neuro might even offer you Tysabri. Mine didn’t think I was severe enough for that yet. Phew!
Tracey x
Thanks Tracey, its good to hear other peoples experiences. I guess i just didnt think anything had changed so thats why it upset me so much.
Is Gilenya the new tablet? Do you have to get funding for that?
As the others have said, Kelly, it is probably to see whether there has been any new activity as some of the newer drugs require MRI evidence to get the drugs.
I just went through the same process of MRI and blood tests etc to start on BG12.
If Rebif isn’t working Copaxone might be worth a shot () but what about Gilenya which is much more effective than Copaxone and oral to boot? And as Tracey said is there enough new activity to qualify for Tysabri? That is the most effective of the lot at present. But really you need to read up on all the drugs available and have a chat to your MS Nurse before making a decision. And be guided by your Neuro too.
Tracey, all the best for the ultrasound. Fingers crossed you get the OK from the cardiologist. Let me know. I’ll be thinking of you xx
B
Yes, Gilenya is the new tablet, Kelly.
I’m not sure about funding, that may depend on where you live (the postcode lottery again). It has been approved by NICE if you have already tried one of the injectables and are still relapsing. My neuro said I now qualify for it so he was happy to prescribe it. There seem to be a few people on this forum who have been prescribed it so it looks as if some neuros are switching patients on to it. I asked for experiences on it and they were all positive which I found really reassuring.
Have you not had any relapses then Kelly? I haven’t had another scan but didn’t need one as I have had two clear relapses affecting my walking this year. I had to use a stick for the first time this year and still find it a struggle if I walk a long way.
Tracey
I have wrote down alot of things I want to ask him when i go because I know i will forget once im in there.
Is Copaxone injected daily?
Hi Kelly,
Copaxone is injected daily but it isn’t a big deal. At least with Copaxone you don’t get the flu like side effects that you do with Rebif and the other Interferons and also it doesn’t cause or worsen depression if you are prone to it which was a big consideration for me when I chose it.
I have to do two injections every day for another illness I have and will be doing that for life so truly one a day is manageable. It is amazing what we can get used to when we have to!
Like I said, have a good read about all the drugs before having to make any decisions.
This site is one starting point
B
Tracey,
I struggle with my walking and various other symptoms which is why he sent me for new scans and thats when it all showed up and he said about switching meds. He did mention the tablet the last time I went so maybe thats what hes thinking.
I’m just after another MRI (last one was this time last year). No results yet but it was done because I need to change my meds. I was on copaxone and it’s not working for me. Have had lots of little relapses since starting it in December.
Rebif wasn’t given as an option as neuro thinks if Copaxone didn’t work it’s unlikely that Rebif or Avonex will.
I think we’re looking at Gilenya or waiting for Tecfidera to come avaiable. I also had to go for blood tests after the MRI for liver function, immunity to chickenpox and for the JC virus so perhaps Tysabri is also an option.
I’ll know more next week after seeing the neuro. I’m a bit nervous about moving to something stronger which will supress my immune system as I’m struggling with work at the moment without adding a supressed immune system into the mix!!
Meme, i no how you feel, i already catch everything going so anything that would make my immune system worse wouldnt be great.
I worry about how i would manage with side effects of any new meds because i struggled with rebif.
I had no side effects with Copaxone other than all the relapses because it didn’t work lol.
I’ve a cold at the moment and am miserable so I’d hate to think how I’d be if my immune system was supressed aswell!
I used to never catch colds and now I can’t seem to avoid them. I work in an office with air con and definiately since I’ve started here I never seem to be able to avoid the colds and flus that do the rounds. Not being able to take echinacia or anything to boost my immune system doesn’t help matters either. And to top it all off I asked work about reducing my hours and they aren’t very supportive at all.
Hard to keep all the balls in the air really.
Thats a real shame about your work.
Im the same i only have to look at someone with a cold and ive got it. Like you I also work in an office.
I’m not too bad with colds (only had one last winter) but I’ve had 5 stomach bugs already this year and we’re now into winter again and they’re doing the rounds at the school where I work (admin). That does concern me a little with Gilenya but it’s not something I can help. I’ve forewarned my manager that I may be susceptible to viruses and also told work I will be needing time off for all the hospital appointments because even if I can’t have Gilenya I will have to choose something else. I ran out of Rebif a month ago so I’m also a little nervous about relapsing again in the meantime.
What can you do eh? Plod on and hope for the best …
Tracey x