advise please, oral drug, tysbiri

Everyday living
1

hi all

Ive had a couple of bad relapses over the pass yr. the 1st being couldnt walk due to weakness in right leg, and the one am having now in my right arm which has been going on since febuary, had steriods got better for couple of weeks then came back, My nero thinks it ms relapse to blame, am confused tho as i have no new lessons on brain since being diagnosed 2 yrs ago, nero still thinks ms to blame, Can u have relapse without getting new lessions on brain?

Am currently taking rebif which dosent seem to be working, got offered new oral drug, another beta infer, or tsyrira, was due too get tested for jcv virius, but then got call from ms nurse to advise may not be able to get tsyrira due to critiria / funding , confused not sure not what to do or were i stand, am a mum of 2 young children and really need a new drug to try stop these relapses,

ADVISE HELP NEEDED

thanks

2

Hi Suzie.

I’m sorry that you’re not feeling great. I know Tysabri is very expensive, so it can be quite hard to get. But obviously there are other options as your neuro has said. I started out on Betaferon, which did nothing to help me. Then I switched to rebif, which worked wonders for me. The thing to remember is that we can always swap drugs if one doesn’t work for us (assuming we meet the qualifying criteria). I assume the oral one is Gilenya, which I’ve heard is supposed to be good. But I’d give your MS nurse a call & ask them to simple & clearly explain the different options available to you.

Hope you get the support you need.

Dan

3

thanks dan its just confusing, can u have relapses without getting new lessions? its just to be offered it thentaken away its like dangling a carrot.

4

Hi Suzie, Have you had a MRI of your spine? I ask because my arm & leg weakness / malfunctions / numbness have been attributed to spinal lesions. I was on Rebif but am now being considered for Gilenya, dependent on latest scan results. My neuro indicated they would have to show new lesions from last scan 9 months ago to be eligible, and I understand the criteria for tysabri is more specific. I have had two relapses since then. I know what you mean about dangling a carrot. Anne

5

Hi Suzie - I meant to add to my first reply about the lesions thing. To be honest, that’s not something I know anything about. I’ve only ever had 3 mri scans, and never had one in response to a relapse so I’ve never been told about changes to the legions when we have a relapse. Sorry I can’t be any more help.

Dan

6

Relapses = new lesions, but whether or not they show up on MRI is a different question entirely.

One main factor is when the MRI was done: if too late, the inflammation may have died down sufficiently for the lesion(s) not to show any more. The quality of the MRI is another main factor: standard NHS scanning can easily miss small lesions. Also, where the lesions are matters: e.g., the spinal cord is hard to scan so a lot of lesions get missed there.

Probably most importantly in your case, and as Anne already said, symptoms in your arms and legs normally mean spinal lesions so it’s not surprising that they didn’t find anything new if they only did a brain scan.

Obviously it’s entirely up to you, but if I had relapses while on Rebif and they couldn’t give me Tysabri, I would definitely go for Gilenya. It’s the next best thing to Tysabri at the moment. (Btw, if you wanted to, you could probably fight for Tysabri if you didn’t have a spinal scan - it might have shown new or enhancing lesions and meant that you met the criteria to get on Tysabri. They really should have done one.)

I hope they get their act together soon for you!

Karen x

7

Hi Suzie

I was on Rebif injections for just over a year but had 2 relapses during that time. Last MRI showed new lesions on my spine. I was offered Gilenya (tablet) or Tysabri (infusion). Having researched them both I have decided on Gilenya. I start on Friday (gulp). Gilenya isn’t risk free but seems less risky than Tysabri (PML was just a bit too scary).

I hope you get what you need.

JZ

8

Hi Suzie96,

There’s a couple of links below to Gilenya and Tsabri diaries where quite a few people have posted ongoing updates of how they are finding the drugs. Most of the diaries have posts over several month’s so you can follow an individuals progress over a period of time. Some of them even cover several years for people who were involved in the original trials.

http://www.ms-uk.org/index.cfm/tysabri(open

http://www.ms-uk.org/index.cfm/gilenyadiaries

9

Hi

Thank you all for your replys, no they did not scan my spine, they only scanned my brain and neck, but mentioned they did see something on my neck, i have never had a scan of my spine, since being diagnosed , i had steriods and was scanned about 2 months after the relapse that i had but not sure if that makes a differents, Can you get lessions futher down your spine?

I just know that am struggling as still having weakness in my right arm, anyway my nero has got me a appointment to see him on monday, think am going to fight for tysriria, or oral drug.

thanks again

sue