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Anonymous
New lesions on head

Have had ms since I was 17. No significance relapses since 2012. Had a scan last year that showed progression and repeat scan 6 months later showed further progression of lesions on brain. Am currently on Gilenya. Consultant would like me to switch to Tysabri but I'm absolutely terrified as he's explained that I run the risk of a significant relapse coming off Gilenya. I'm 29 and scared.

Do I need to tell work?
How am I supposed to make a decision like this? My options seem terrible.
My dad wae diagnosed with oesophagus cancer this summer. I've been under a lot of stress with thT alongside the pandemic and a house move. Do you think there's any way I can reverse this? He is willing to let me stay on Gilenya and rescan me in January and take it from there (ie change me if things have progressed again but chat if they havent)

Any help would be great. I feel frightened and alone...don't want to burden my boyfriend or family with how I'm feeling x

Hi, I cant offer advice on DMDs, as I havent been on any, but what I can do is urge you to tell someone in your family...you need closer support than we can give you. Tell someone you can trust not to tell anyone else. A close ally always helps me.

We are here for you but feeling frightened and alone is not good.

Boudsx

Theres 3 of us in our family with MS, I'm the only one not on DMD's as I've progressed to SPMS, but both my sister and cousin are RRMS on Tysabri.

My cousin has been on it for a long time, my sister started it about 2 years after an awful relapse, my cousin has tolerated it really well, no relapses in years, my sister hasnt had any side effects since starting the Tysabri but the relapse that she had was so bad that the damage it caused is probably very very long term, probably forever, but the consultant said that without starting on any DMD's another severe relapse such as the one she had will be devastating.   

I certainly would try DMD's they were offered.  

Hi , Im guessing that Gilenya i'snt working for you as well as it could do which is why your consultant want to change you to Tysabri. some drugs work better in different people, and your consultant is telling you of possible relapes - it's not a definate.

The stress you are under because of your dad and the house move is probably having an effect on your well being as well as the possibility of a change to medication. I would say to tell work if they are understanding and supportive, confide your troubles in a close friend, try to relax and calm down and go with the flow ( easy to say, I know!!) trust your consultant knows best.

I hope it all goes well for you - remember someone is always here

I have MS

Hello

I do feel for you. It's a very tough decision and one which you are making on your own.

Is there anyone you could talk to about your choices? A good friend or maybe involve your boyfriend (unless it's quite a new relationship in which case it might be a bit much to lay on him!). I can understand why you don't want to burden your family - it sounds like your parents have enough to worry about. But have you got a sister or brother who might help? What is your relationship with your MS nurse like? Assuming you have one. Do you trust his/her judgement?

Meanwhile there is always us!

It does sound as though Gilenya isn't quite protecting you as well as it might. But risking a bad relapse by coming off it is a tough choice to make. Tysabri is a great drug, and one which has a very good relapse reduction rate, but it doesn't suit everyone.

The problem is, you could have a disabling relapse while on Gilenya or during a gap between Gilenya and Tysabri.

Then theres the PML risk. I know it's there for Gilenya too, but not quite such a risk. Is there anyway your neurologist is prepared to test you for the JC Virus before making the decision? That might help, but actually maybe not, as PML can be a factor with Gilenya. It might be that you need to stop Gilenya but go on a different drug to Tysabri!? Or it might make you more determined to stay on Gilenya (or to stop the Gilenya!)

Certainly being on a DMD is (IMO) vital if possible. Especially if your RRMS is progressing despite being on Gilenya.

My biggest worry would actually be that you'd stop the Gilenya, either have a nasty relapse (or a small one), or not; start the Tysabri, then discover that it's wrong for you. You could find that other side effects mean Tysabri isn't for you.

Oh stuck between a bloody rock and a hard place! There's no way any of us could really say you should do X or Y. Unfortunately it really does have to be your decision. It's just tossing around the various options that might help you to decide.

Unless there's anyone reading this who's made exactly the choice facing you? Perhaps they could explain what happened for them? What decision they made and what was the outcome? Not that you'd need to make exactly the same choice, it's just another view of the problem.

I wish you the very best of luck. Let us know what you decide.

Sue