Forum

Can I/Should I?

Ask for tysabri?

I was diagnosed feb 2012 and have been on Rebif 22 ever since with an increase to Rebif 44 in June 2013. I am still relapsing quite often ie. optic neuritis in january, left leg went numb May/June and now my right arm has gone funny (weak, cold, wet, sore) my cheek has gone numb and im getting electric shock pains in feet and legs. There are lots more symptoms to add but won’t get into that now.

My MRI in January showed 2 new areas of demylination since my previous MRI a year before (spine wasn’t done this time and I am sure there is new stuff there too).

So these relapses have not been that bad in themselves BUT the fatigue I get is literally killing me. I have always suffered from fatigue and get no “good days” but I am getting so bad I am too tired and weak to live. I am not suicidle, I love my life (obviously not the ms bit), family etc but I am too tired to enjoy it. My nurse says I am so bad because I am not getting any time in between relapses to recover and thats what is making me so bad. The only reason I am still here is for my children.

So 2 questions, AM I BAD ENOUGH TO FIT THE CRITERIA FOR TYSABRI AND CAN I ACTUALLY ASK FOR IT?

I know rebif was not supposed to make me feel better but I am just getting worse quite quickly.

Sorry if this is total ramblings but I can barely hold my head up to type this.

Hi,

There is no reason you cannot discuss it. This does not, of course, mean you’re guaranteed to get it.

But if Rebif is not successfully controlling your relapses, I’d have thought this should prompt a review soon anyway, without you having to initiate it. Do you think they might be waiting to see if the full dose makes a difference, as you have only just gone up?

Tina

x

It’s a shame that you were not titrated up to rebif 44 sooner, I guess some health authorities operate the dosage differently from others. As Tina said, there is no harm in discussing Tysabri as an option. Whatever happens I hope you can get some relief in the near future x

Thank you for your replies. I would discuss it with my neuro but I don’t see him untill november since last november. He was supposed to come and see me while I was in hospital in january but never showed up. Plus last year I showed him a huge list of new symptoms, he did a quick neuro exam and proceeded to tell me it was all in my head and thank goodness as my list of symptoms scared him, making him think I was either relapsing very quickly or progressive.

I left his office, cried for about 2 days and then decided to stop analising everything and to cut down on the forums. It was only when I had ON that I couldn’t ignore it anymore and the MRI proved that it was not all in my head.

All my meds (even the increase of rebif) has been my nurse’s doing.

you could ask the ms nurse to try and get you an appoiment with your neuro sooner than November,but if not why dont you ask him in november,its awful when you are made to feel you are making it up, i was told for years that all my symptoms,were all in my head,until i got the ms diagnosis,and when i got for my yearly neuro appt,i still come away feeling that its a waste of time even going.

Hi Anon,

It is very early days since you upped your dose to 44 as someone else has said so they may wait to see how your relapses calm down.

There is no reason why you cannot ask your nurse about tysabri or possibly Gilenya. Ask her if you can have a review of your treatment as you dont feel the rebif is working for you. Unfortunately we have to fight to be heard sometimes.

Speak to your ms nurse about how you feel and ask if your neuro appointment can be bought forward.

If you get to see neuro sooner make a list of new symptoms since you last went to support your argument. Good luck.

Teresa.x

Thanks again,.

I have read that there is not much difference between the sucess rates of 22 and 44 so im not that optimistic but will probably have to give it till november when I see my neuro.

I just feel so alone at the minute. If I didn’t have my childen to worry about I would honestly take my own life (if you could call it that).

Anon, Have you got anyone you can talk to? I would also mention the fact to your ms nurse about how low your mood is as Rebif can exacerbate low feelings. Maybe you can be prescribed a course of steroids to try to alliviate some of the symptoms you are experiencing. Your ms nurse sounds as if she can make a good case for you in your quest for Tysabri, she’s obviously understanding that you’re not getting any kind of respite at the moment. Keep talking to us on here, we’ll keep listening and try to help you through things.

Thank you for your support.

It’s hard to explain but I am honestly not low, it’s just I feel too tired to live. Thats the only way I can explain it. If I didn’t have my kids I would end my life, not because I am depressed but because I wouldn’t have to keep on struggling like this.

I go to bed at 7pm most nights, don’t go out anymore as I don’t have the energy but I do love my family and my job (2 hours a day).

Do make sure your MS Nurse exactly how you feel - tell her what you have told us on here. See if you do need to change your dmd. And whilst you are waiting for some ‘action’ from nurse/neuro do make sure that you are taking a high vit B12 supplement or injections - this will make such a difference to your tiredness/fatigue and general well-being.

Just google vitamin b12 deficiency ms - for info.

And l wish you all the best - lets us know how you are doing - keep in touch with this forum as l am sure many folk will be able to give you some good advice.

Are you taking any medication specifically for the fatigue? i have heard some people on here take a drug called amantadine to deal with fatigue. I am fortunate enough at the moment not to suffer with fatigue but if you have not taken this drug and want to know more, maybe you could start a thread asking how taking amantadine has affected them. x

Please tell the ms nurse how you feel. Are you sure you are not depressed? because it does sound like it to me. Depression symptoms are feelings of self harm.

Depression with rebif is common but when it turns to feelings like this then the neuro needs to know NOW! He will probably take you off rebif if you tell him this and as it does not seem to be working well for you it will be a good thing.

If you cant get any help from ms nurse soon - go and have a chat with your gp.

There is medication for fatigue as well . Do not think you will feel like this forever - when you are on the right medication you will feel a lot better.

Hang in there - get some help ASAP!

Teresa.x

Please speak to someone about your low mood - I couldn’t take the betainterferons because of their effect on mood (tried copax & the mitox/copax cocktail) I recently had a rather odd neuro experience myself - suddenly decided that as my symptoms / presentation didn’t match his tick box I’d possibly been misdiagnosed all those years ago and was PPMS rather than RRMS moving into SP…suspiciously this knocks me out of the criteria for fingolimod (funding) which the MS nurse had thought I was eligible for. Speak to your MS nurse about alternative DMD’s and perhaps think about approaching your GP for a course of antidepressants and / or counselling - you shouldn’t just be hanging on to life ‘for the kids’ - there’s a wonderful and fulfilling life for you out there as well. Good luck xxx

I am currently getting vitB12 injections every 3 months to try and help with the fatigue. They take my blood each time to check if its low as if it was I would get it more often. This has not been helping.

I have also tried modafinil to no avail but spoke to my nurse today who wants me to try it again. I was on one tablet at 8am and one at 12pm each day but made no difference. Not sure of the dose she will try me on this time.

She wants me to ring her next week to let her know how its going.

Also does anyone know what happens when your not fit to do your job anymore and there is no changes your employer could possibly make to help?

Hi, I went straight onto Tysabri as first line treatment. I was considered to have rapidly evolving severe relapsing remitting MS and met the NICE guidelines. As with all treatments not for everyone but I have been relapse free for a couple of years. You seem to have a lot on your plate at the moment which can’t be helping. I had to give up work which helped as I was half asleep most of the day. Its hard to fight back when you have no energy. I cant believe your Neuro said it was all in your head, as thats exactly what is with MS!. All I can add is that you are not alone with what you are going through and lets hope your Team gets its act together. Peter

Hey Anon

I have been on Tysabri for over for 4 years and my next one is my 54th infusion. Unlike the previous poster, who has waht they RES RRMS and it just relapse one on top of the other, although the rate you are relapsing at could indicate that this could be the case with you.

I was on both Betaferon and Rebif for a year respectively and I was still relapsing 3 times a year although the severity od the relapses was lessened. I was told that the MS was calssed as highly active but nor RES RRMS. SInce staring Tysabri I have had done and have done and am doing things that I never dreamed possible because of it. To qualify for Tysabri you have to had 2 or more relapses ayear AND you have a active lesions that show on an enhanced MRI scan (this is when you are injected with galodinium dye to highlight active lesions).

I would speak to your nurse and if your neuro is not an MS specialist and won’t refer you, ask your GP to refer you top your local MS neuro as this will be the only way to get Tysabri as only MS specialists can prescribe it. I really hope that they start you on Tysabri as soon as possible.

Andy

They will likely want to give the higher dose Rebif a fair chance before thinking about putting you on something stronger/riskier. With this in mind, I think it is important that you keep them up to date with anything new that happens that is clearly a relapse. Obviously, I hope that will have little or no such evidence to offer them in the months to come! - that would be the best possible news - but if the higher dose of Rebif is not holding its own, chapter and verse on what is going wrong is your best chance of a productive discussion with your neuro about how well your MS is being controlled and what your options are.

I am sorry that it is all being such a struggle at the moment. I hope that your MS calms down really soon and gives you a bit of breathing space. I agree with Anu that paying attention to low mood is a good idea. Even if chronic low mood is a completely rational response to stimulus (!), it can turn into a burden on its own account, and one that is relatively easy to fix. I am a great believer in fixing the things that are fixable.

Alison

Thank you everyone for all your replies. I wish I had my own mri machine so I could find out whats going on lol. I have decided to leave it until my appointment in november as I will have been on the higher rebif 6months so will hopefully know if it’s working or not. Really struggling with work and don’t know what to do about it. I am a kitchen assistant and it’s hard pysical work and I don’t think there is any changes my boss could put in place to help. What happens if you can’t do your job?

Wow, your job is hard at the best of times, never mind coping with ms as well. There are members on here who know a lot more about employment law than me but I’m fairly sure that it’s best NOT to resign or you won’t get any benefits for a while. I think if your employer can’t make any reasonable adjustments to help you cope with your job better than they can let you go on medical grounds…but please don’t take this as gospel. Might be worth starting a new thread specifically asking about your employment issue. x

I love my job so don’t want to be giving it up but don’t know how much longer I can keep it up if I don’t start to feel a little better. One day at a time I suppose.

Change of plan regarding my neuro. My husband rang my nurse (behind my back) and spoke to her about it all, she has advised changing neuros as mine is not looking after me whatsoever. She is not the first person to have told me this. My neuro has let me down before and he has just opened his own private practice so this is only going to get worse.

My nurse is going to try and find out how I go about the change but I might see if I can see him privately to get me started as it’s probably quite a wait to see him.

Thanks again everyone x