@Anawith1n

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Anawith1n

3 months in gilenya and loving it!!!

Wow 3 months on gilenya, please don't give me the evil eye. But so far so good. Touch wood everybody. ( 3 times please) All good! Highly recommend it.

Stumbler

@Stumbler

It's good that it's going so well for you, @Anawith1n . Long may it continue. :wink:

Anawith1n

@Anawith1n

Thanks stumbler, X fingers XXX

xshon87x

@xshon87x

I been on gilenya for almost 2 yrs now I can say I've been relapse free for a year!!! So far the tablet has been amazing so very happy xxx

Graham100

@Graham100

Never heard of it, is it a DMD? I'm using 22mcg rebif whitch is being increased to 44mcg ASAP what's best??

Stumbler

@Stumbler

@Graham100 , Gilenya (aka fingolimod) is an oral DMD, one of the latter DMDs to come to market. The NHS see it as a second line treatment, used for aggressive cases or where there have been problems with the first line treatments. More details here :- http://www.mstrust.org.uk/atoz/fingolimod-gilenya.jsp

Graham100

@Graham100

Thanks, will mention to my nurologist when I see her again in two weeks as I have detereated fast the rebif has done nothing, just had MRI and she said yesterday that there is no change from last years MRI?? In which case what's caused the problems, do you think they are missing something,

Stumbler

@Stumbler

@Graham100 , it all depends on the MRI. Was it brain and spine? And, did they use a contrast dye to enhance the images? If you are deteriorating, then that suggests active lesions. Perhaps your Neuro could explain her understanding of what's going on.....

r-jay

@r-jay

Hello,the reason I've gone back on this site is to see what other treatments are more suited to me,I've been taking rebif for close to a year and don't know if I feel worse for it,I went up to 44mg and then.got side affects,I was then put back on 22 strength,basically i've been taking this ever since,as for whether this is the right meds for me I really don't know??.my appointments at the hospital are every six months is that to far apart,next time I go the neurologist has suggested me taking new tablets,has anyone got any ideas for me about what meds are better than rebif Sorry to write an essay about this,I'm not knowlegable enough about what's the right meds,and am still in denial even though I was diagnosed a good 4-5 years ago I'm gonna stop this essay haha R jay

Stumbler

@Stumbler

That's a difficult scenario for me to suggest a way forward. You've been on Rebif for a year, but at a 50% dose. Have you had any relapses or deterioration during this time, as this would contribute to the medical decision? The CRAB DMDs (Copaxone, Rebif, Avonex & Betaferon) are seen as the first line treatment, with Tysabri (Monthly infusion) and Gilenya (oral) and also Aubagio (oral) being considered if the injectables are a problem or your MS is aggressive. So, a lot depends on how you've been over the last 12 months. You can only hope that your Neuro would suggest the most appropriate treatment. Six monthly appointments seem reasonable. I'm SPMS and I told them to cut it back to an annual appointment. Well, they have nothing to offer me - well, there is, but they're not allowed to offer it! :???:

r-jay

@r-jay

Stumbler Thanks for your reply The fact im taking 50% dose is because when I was on 100% I would wake up thinking I was having a heart attack,even though I'm not a doctor but the 50% dose is making me think how I'm not getting maximum,i know I'm scared to change meds but will probably have to try a different one,one I can handle R jayree

Anawith1n

@Anawith1n

Srumbler is right it all depends, I was on betaferon for a month when I was first diagnosed, had the worse side affects and quickly got put off. It took me 15 years to go on a treatment and had a few episodes here and there, I got a yucky one, my right leg was playing up. So went to a new neuro and he suggested try gilenya and I did 3 months ago. I feel like a new person, I can walk again without a limp. Walk faster . It's up to you. I love it my gilenya!!

Cazzzzzy

@Cazzzzzy

Trials with Gilenya & PPMS will finish in September so I am looking forward to hearing the results of that! Wondering how you are getting on with Gilenya @tonyb as a PPMSer!? Hope all's well! xxx

r-jay

@r-jay

Hello again,the other issue I have with taking rebif,I have a viral wart on my left index finger under the nail(lovely not),i had it removed then eventually it's come back,the doctors are saying its coz of the rebif I'm. Taking. So now I'm deciding to stop taking rebif coz I'm having the op in couple of days time again,I want to see if it comes back and then try a different meds What do U think,good or bad idea Coz it seems pointless and a vicious cicle,one thing stops the other,anyway that's enough moaning from me but I still don't know what to do,considering I'm gonna have my nail ripped off,then burnt then scraped 1-2mm deep(ouch)then it will come back coz of the f in injections,wot shall I do r-jay

Stumbler

@Stumbler

@r-jay , your Neuro should be involved in this viral wart situation too. Yes, Rebif, as a Disease Modifying Drug (DMD) does play around with our compromised immune systems, which can cause problems when the body tries to deal with something else. The Neuro/MS Nurse should definitely be involved if you're thinking of stopping your DMD.

Anawith1n

@Anawith1n

So gilenya is still on trials in Uk? Shame though, why ? Come to Australia!!!!

Cazzzzzy

@Cazzzzzy

@Anawith1n ... They are still trialling it with Primary Progressive MS ... Trials with RRMS are finished and it's available to RRMS.. I think some people with PPMS are able to get it if they have a neuro willing to prescribe... xxx

tonyb

@tonyb

Here in Australia my Neuro has me 'classified' as RRMS so I can access the DMTs. Reality is that I have PPMS. I've been on Gilenya for 6 months and had Brain / Spine MRI's done yesterday. I don't think that Gilenya has helped and may have made things physically worse. Interesting to see what the MRI reveals.

Graham100

@Graham100

Hi tony. Good luck with MRI just had one myself, so she could compare last years, turned out to be no change? Ok so why am I so much worse, not same as I was? Far as gilenya, some say great, I think got to get some, you say mabe not, I think don't go there, (confused.com)

Cazzzzzy

@Cazzzzzy

Cheers for the update @tonyb ! ... Yes good luck with the MRI results, it will be interesting to see! Have you been offered any other DMT's in the past? ... I think you are lucky to be "classified" as RRMS as I think these drugs stand just as good a chance to help in PPMS but will take longer to show results in PPMS... That's just my opinion anyway! Good luck! xxx

Anawith1n

@Anawith1n

Hello, as I said before we r all different. RRMS SPMS PPMS BENIGN I must say we have one thing in common. W. E. H A V E M. S. HAVE A NICE DAY remember to smile www.artistana.com.au