Last reply 8 months ago
Treatment choice.

Hi. I’m new to shift ms and I’m in need of advice regarding treatment. When I was diagnosed I was put in tecfadera, this gave me terrible side effects and I was moved to aubagio. Which has failed miserably. I have had 3 relapses in 12 months and 5 in 2 years. So I got a letter saying that I could be moved to Gilenya, tysabri or lemantra. But I have psoriasis and the Neuro was looking for one that would treat both. He asked my dermatologist and that’s it possible (its not) and I heard him say I’m probably going to give her Gilenya then. My question is do I have a say? I’m not keen on his choice as I’m worried about the side effect of macular oedema. I have virtually lost the sight in 1 eye due to optic neuritis and I can not lose my license as I live on a farm miles from anywhere. Can I ask for a different one? The ms nurse sent me information on the 3 treatments that were in the letter and I’m leaning towards tysabri. But like I say I don’t know if i have a choice. Any help would be great. I feel very confused & I’m worried about progession and I need these relapses to stop!
Thank you.

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wjgregg
8 months ago

Hi there.

Yes, you do have a choice. The NHS cannot force you to have a treatment that you are not comfortable with. I myself have been taking Tysabri for seven months and, touch wood, it is working fine for me. There are side effects, such as fatigue and joint pain but I wonder whether they come with multiple sclerosis in any event.

You do what is best for you. Remember, you are the patient and it’s your life. It’s your choice, not the doctor’s.

Good much, and best wishes.

Jon


wilf
8 months ago

I think it is up to you. I was given the choices and had to go away and choose one that would suit me. They can recommend what they think would be best but in the end it is what is best for you.
At the beginning they gave me a choice of injectables and I chose the one with the least injections. When that didn’t work they gave me other choices and I chose the one I thought I could cope with.


grandma
8 months ago

Dear Bellabell, hello and welcome what a pickle, but of course you have a say. As far as it goes, I.e. there are only so many options available and you have already enough with losing sight in one eye. You need to do as much homework as you can if you have to stick to your guns and go with what YOU want and what you consider the most appropriate. You have lots of friends here, ask what you want, there is no such thing as a silly question


marcyg921
8 months ago

Hi,
At the end of the day it is your choice but just remember that the Neurologists and MS Nurses are there for a reason. They know about these treatments and obviously want to give you the treatment that they feel is right for you so definitely listen to them. But at the same time do your homework on each treatment. Each one will have scary side effects but its a price that you needs to be willing to pay to stop MS. Whatever treatment you decide, we’re there to help you with any questions. I had Lemtrada and will be happy to answer any questions you may have. Best of luck.


buitenmus
8 months ago

Off course You have a say in It, they can only give their opinion, You have To deal with the side effects,… Just ask All questions, Read objective info and Pick what You think suits Your lifestyle best.


abigaild
8 months ago

Hello BellaBell,

I have been on Tysabri since May 2007. I started on Rebif when I was first diagnosed because that was the strongest med. available for my MS at the time and I continued on Rebif with 5-day courses of infused steroids to stop the relapses. Then they finally had a medicine that would stop the relapses permanently. For me- that was Tysabri. Finding that one special medication that works for your body is the hard but- You can do it BellaBell. You Can!!!!


sciencegeek
8 months ago

Did they not offer you Mavenclad too? It’s definitely worth considering along side the other options.

The final choice is definitely yours. Your MS nurse should help you choose, though.


bellabell
8 months ago

Hi and thank you for your replies.
I have not officially been offered anything really. When they were looking for a treatment that would treat psoriasis as well as my ms my neuro mentioned rituximab and that he would wait to see the dermatologist, the letter said I could be moved to any one of the 3 fairly easily but he wanted to take advice first. The dermatologist said that retuximab wouldnt work and I heard him say I will probably be giving her Gilenya then. But I’m very scared of the side effect with your eyes as I’m already at risk with having diabetes. So I don’t know if it’s a risk I’m willing to take. The ms nurse sent me info on the all three treatments and after reading that it supports my worries. I’m leaning towards the tysabri myself but I don’t know if I can say no. I don’t know if I have explained that well enough but I guess I will have to wait and see.
Thank you all for your replies. It’s appreciated. Xx


stumbler
8 months ago

@bellabell , when a risk is published, then that means it is a known risk. You will therefore be closely monitored and if the perceived risk becomes too severe, your DMT will be reviewed.

The choice of DMTs is yours. Your body, your choice. Just have your reasons for this choice available, when asked for your reasoning.


cammo
8 months ago

@bellabell
I too was diagnosed due to Optic neuritis and had a loss of vision. I started on Gilenya and was closely monitored by my Ophthalmologist. He stated that the risk of macular oedema from Gilenya was very small and some Neuro’s don’t even bother checking. If Gilenya is recommended by your neuro I would take his/her advice but also see/get an Ophthalmologist to keep an eye on your retina.
For what it is worth, my ON went away after a month on the Gilenya and has kept me lesion/relapse free for the past 9 months.


bellabell
8 months ago

@cammo thank you for your reply. I had optic neuritis 6 years ago now & It was the optic neuritis that led me to being told I may have ms. Three years later I got my official diagnosis. But as I left it for quite some time thinking I just had something in my eye. I lost quite a bit of sight then I got it ON again and I lost most of my sight in my R eye. It did regain some but not all of my sight in that eye and officially if I lose some vision in my left eye I will lose my license. Thank you for your reply I appreciate the positive feedback of the treatment and I’m glad it’s working for you.


bellabell
8 months ago

Update I’m going on Tuesday to discuss my options and I have been talking to a woman I know who is on gilenya and she has done well for the last 6 years. So that’s put my mind at rest quite a bit.
Thanks again all.


aabreu
8 months ago

Don’t forget to ask about Lemtrada and Cladribine(Mavenclad)!
Good luck

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