Last reply 1 week ago
Need some advice

Hi All,
I was diagnosed November 2019 with RRMS. I was put on Rebif which the only complaint i have is the red marks it leaves but would have happily gone on with it. Yesterday i met with a new neurologist after my previous one had left. I had an MRI in advance and there was one small new very small spot. He said he is 99% happy but wants to be 100% so wants to check the possibility of changing my medication to Gilenya. There are mixed reviews online but generally the feedback is ok. Does anyone here have any advise? I should have asked more questions in terms of why the change if 99% happy but i was very shocked to have one new spot because i hadn’t had any obvious attacks and didn’t realize you didnt need to have one to get a new spot.

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kendra_brunt
1 month ago

@tara_scully

Hi Tara,

I was diagnosed in 1999 and was put on rebif and just came off last year, I have only had two relapses during this whole time and my neurologists said she has other patients that would love to have my scans… I was on the highest dose all these years and am incredibly thankful for how it worked for me…I wish you all the best and hope you have such response with whatever medicine they decide for you.


kat88
1 month ago

@tara_scully

Hi Tara,
I was diagnosed in 2011 and started on Rebif for the first two years. As my RRMS was deemed to be fairly active due to having a few relapses each year on Rebif (albeit them seeming fairly mild relapses bar having Optic Neuritis) I was then switched to Gilenya and I never looked back. Gilenya prevented me from having any relapse at all for 7 years. It was also very convenient just taking a tablet once a day. I didn’t have any side effects either. However, last year I decided to come off it due to wanting to start planning a family. It is not safe to have a baby whilst taking Gilenya, so it’s perhaps important to think about timing for you. Since coming off Gilenya I had a nasty rebound relapse (very poorly for 4 months) but have since started on Tysabri and am now back to being fit and healthy. I am told by my neuro team that Tysabri is deemed relatively safe for conceiving and for taking during the first and second trimester of pregnancy whilst also keeping active RRMS under control.
If I had a choice over Rebif or Gilenya, I would choose Gilenya because my MS is fairly active and Gilenya has good efficacy for preventing disease progression. However if you were planning to have kids in the next 5 years I would probably say to hold off taking gilenya until after kids in order to avoid the difficulties I had coming off it.

Wishing you all the best with whatever you decide 🙂


dominics
1 month ago

Hi Tara,

Where (in the world) are you located? things are so v different between healthcare systems.


stumbler
1 month ago

@tara_scully , it’s not what the MRI shows, it’s more about what the MRI doesn’t show. There can be progression going on that doesn’t register on the scan!

Switching to Gilenya is a positive step to a more effective Disease Modifying Therapy (DMT), which is generally well-tolerated.


itsmewithms
1 month ago

I was Dx in 2005 when there were only a couple of DMTs available but at least there was something! I was on Copaxone for like 9 years and had a few noticeable attacks (promptly shut down with Sol Medrol infusions) and then 4 years on Rebif (no attacks but I had possibly already moved to SPMS) and now transitioned to Ocrevus hoping to shut down any progression which has been slowly creeping up.

I was frequently surprised there were new lesions on my MRI as I hadn’t noticed any attack in that year. In a way this is a good sign as my brain rewired so quickly and effectively I didn’t notice it. But- these days our expectations are a bit higher and I’m glad your Dr has this stance as well. If you watch enough of Dr Boster’s You Tube videos you will hear him compare DMTs to birth control…you take them to prevent attacks and if you have evidence of one it is like having babies show up while you are on birth control…obviously it isn’t working as effectively as you’d like it to be. I thought that was kind of a funny way to get the point across but effective ;-0


tara_scully
1 week ago

Thank you all so much for your feedback. I really appreciate it. I meet with my neurologist in 2 weeks to further discuss if Gilenya. Definitely happier going in now with all your feedback.
Tara, Ireland

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