Gilenya

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Three months on Gilenya

Last post by NHE « Tue Sep 16, 2014 11:53 pm
Replies: 4
by pballer76 » Fri Jun 06, 2014 12:59 pm

First post

Well I have been on a Gilenya for 3 months.
No flares or anything. Easiest med I have been on for MS.
My neuro wants 1st blood work between 3 & 4...

Last post

Hi
I was on Tysabri for 3.5 years but bloods came back with a positive to the JC Virus. Neurologist has taken me off that and said Gilenya will be...

4 Replies

4919 Views

Last post by NHE
Tue Sep 16, 2014 11:53 pm
Gilenya Side Effects?

Last post by simonelea « Tue Aug 12, 2014 9:16 pm

by simonelea » Tue Aug 12, 2014 9:16 pm

I have been taking Gilenya since March 2013 and after 9 years on Betaferon it's been brilliant. However this year it seems like the side effects have...

0 Replies

3133 Views

Last post by simonelea
Tue Aug 12, 2014 9:16 pm
Gilenya & Pregnancy

Last post by masterofpuppets101 « Mon Jul 28, 2014 12:52 pm
Replies: 1
by mm430 » Fri Oct 19, 2012 6:48 am

First post

I've been off Gilenya for a few months, in the hopes of starting a family.

We've been unsuccessful thus far. I've been fine, off the medicine, and...

Last post

you have to stop gilenya 2-2.5 month before getting pregnant because it has a teratogenic effect on the baby

1 Replies

3376 Views

Last post by masterofpuppets101
Mon Jul 28, 2014 12:52 pm
Wider use of MS drug Gilenya approved in Europ

Last post by MSUK « Thu Jun 12, 2014 1:29 am

by MSUK » Thu Jun 12, 2014 1:29 am

The European Commission has endorsed the recent Committee for Medicinal Products for Human Use (CHMP) positive opinion recommending the expanded use...

0 Replies

3774 Views

Last post by MSUK
Thu Jun 12, 2014 1:29 am
Gilenya appears to slow brain volume loss in relapsing patie

Last post by MSUK « Thu May 01, 2014 2:06 am

by MSUK » Thu May 01, 2014 2:06 am

Novartis International AG ( NVS ) announced new data showing that more patients with relapsing multiple sclerosis treated with Gilenya (fingolimod)...

0 Replies

2689 Views

Last post by MSUK
Thu May 01, 2014 2:06 am
CHMP issues positive opinion to expand EU label for Gilenya

Last post by MSUK « Tue Apr 29, 2014 2:46 am

by MSUK » Tue Apr 29, 2014 2:46 am

CHMP issues positive opinion to expand EU label for Gilenya in RRMS

Swiss drug giant Novartis said that the Committee for Medicinal Products for...

0 Replies

2513 Views

Last post by MSUK
Tue Apr 29, 2014 2:46 am
Starting Gilenya soon

Last post by pballer76 « Sat Mar 22, 2014 8:44 am
Replies: 3
by pballer76 » Sun Jan 05, 2014 10:48 am

First post

I have been on Avonex, Rebif, Tysabri, Tecfidera & Copaxone. I am currently on Copaxone. I can't wait to start Gilenya. The lumps and itching drives...

Last post

Well I started on 3/17, it was a boring 6 hours.
My heart rate fell from 95 to 63. It was up to 83 when I left six hours later. So far I haven't...

3 Replies

2986 Views

Last post by pballer76
Sat Mar 22, 2014 8:44 am
Gilenya and increased frequency of urination?

Last post by julierobinsonOT « Thu Mar 13, 2014 1:53 pm
Replies: 2
by julierobinsonOT » Tue Mar 11, 2014 4:20 pm

First post

Hi -
I just started taking Gilenya a month ago, and thought I had developed a UTI. Cultures are negative, but I have been using the bathroom at least...

Last post

No changes. My doc thinks it might actually be a relapse but I'm not convinced... thank you!

2 Replies

2239 Views

Last post by julierobinsonOT
Thu Mar 13, 2014 1:53 pm
Gilenya and rash

Last post by jenf « Wed Feb 19, 2014 12:55 pm

by jenf » Wed Feb 19, 2014 12:55 pm

Hi everyone,
I started Gilenya on January 20th. About two weeks ago I noticed a rash that has now spread all over my body (small itchy bumps that are...

0 Replies

2403 Views

Last post by jenf
Wed Feb 19, 2014 12:55 pm
Gilenya appears to have an effect on B-Cells in MS

Last post by MSUK « Tue Feb 18, 2014 3:25 am

by MSUK » Tue Feb 18, 2014 3:25 am

Differential effects of fingolimod on B-cell populations in multiple sclerosis.... Read More -

0 Replies

2189 Views

Last post by MSUK
Tue Feb 18, 2014 3:25 am
MS-UK Gilenya Diaries

Last post by MSUK « Fri Jan 31, 2014 1:52 am
Replies: 16
by MSUK » Fri Mar 01, 2013 2:59 am
1

2
First post

MS-UK Gilenya Diaries

Dan has sent in a new entry for his Gilenya Blog

You can read it at

Last post

MS-UK Gilenya Diaries

Dan has kindly sent in his latest Gilenya Diary update for Pills, Thrills and Bellyaches for Week 73,
16 Replies

7372 Views

Last post by MSUK
Fri Jan 31, 2014 1:52 am
Been on Gilenya for 3 weeks

Last post by sophie447 « Sun Dec 29, 2013 7:30 pm
Replies: 2
by sophie447 » Wed Oct 16, 2013 6:54 pm

First post

After debating it for what seemed forever, I finally decided to do it! Figured Gilenya is an acceptable option right now. Far from perfect, but still...

Last post

Hi Theresa,

sorry I missed your post! No, I can't say I feel more tired than before the Gilenya. For me, the effects still are on my heart rate and...

2 Replies

2551 Views

Last post by sophie447
Sun Dec 29, 2013 7:30 pm
So far a positive experience

Last post by amberfer « Thu Dec 19, 2013 8:40 pm

by amberfer » Thu Dec 19, 2013 8:40 pm

Disclaimer: I have only been on Gilenya for about two weeks. But in the midst of all the scary stories, I want readers to know that I have no side...

0 Replies

2257 Views

Last post by amberfer
Thu Dec 19, 2013 8:40 pm
FDA continues to investigate possible Gilenya link to PML

Last post by CaliReader « Thu Nov 14, 2013 12:32 pm
Replies: 2
by MSUK » Mon Oct 21, 2013 12:17 am

First post

FDA continues to investigate possible MS drug Gilenya link to brain infection death

The FDA is continuing to investigate a possible link between the...

Last post

See this thread, discussing the details.

Yes, additional immune suppressing drugs, but no not Tysabri. I won't be taking steroids while on Gilenya.

2 Replies

2462 Views

Last post by CaliReader
Thu Nov 14, 2013 12:32 pm
Upset stomach

Last post by ariehs « Tue Nov 12, 2013 10:23 am
Replies: 1
by katzeg22 » Mon Oct 28, 2013 9:55 am

First post

I'm on day 4 of Gilenya, yesterday I started with an upset stomach. I can't shake it, anyone else have this?

Last post

Hi Katzeg.

I don't have a lot to add, other than I know a few (3) people on Gilenya IRL, and I've been on it since January. None of us have noticed...

1 Replies

2278 Views

Last post by ariehs
Tue Nov 12, 2013 10:23 am
About to start

Last post by sophie447 « Wed Oct 16, 2013 6:31 pm
Replies: 5
by sophie447 » Mon Aug 26, 2013 8:14 pm

First post

This is much of a post on another forum. Please forgive me if you read it twice.

I took Copaxone EOD for the past year or so. It was not what was...

Last post

Thanks AZStevo.
I started Gilenya 3 weeks ago.
My blood pressure has also risen. Probably due to the decrease in my heart rate that is not yet gone.

5 Replies

2195 Views

Last post by sophie447
Wed Oct 16, 2013 6:31 pm
Short survey for my school leaving examination work :)

Last post by wylerj « Wed Oct 09, 2013 1:55 pm
Replies: 4
by wylerj » Fri Sep 27, 2013 6:00 am

First post

Dear MS-Patient,

Twelve years ago my mother came down with MS. The nescience about this theme has really employed me. That’s why I decided to make...

Last post

Yes that's correct!
But that's the reason why I postet also my email adress. So everyone can answer my question anonymous!

4 Replies

2167 Views

Last post by wylerj
Wed Oct 09, 2013 1:55 pm
Gilenya® shown to reduce MS relapse rates

Last post by MSUK « Thu Oct 03, 2013 12:19 am

by MSUK » Thu Oct 03, 2013 12:19 am

Gilenya® shown to reduce MS relapse rates compared to interferons or glatiramer acetate

Novartis announced today findings from an international...

0 Replies

2102 Views

Last post by MSUK
Thu Oct 03, 2013 12:19 am
Novartis confirms long term benefits of Gilenya in MS

Last post by MSUK « Wed Sep 25, 2013 12:04 am

by MSUK » Wed Sep 25, 2013 12:04 am

Novartis International AG has announced that new data showing the benefits of Gilenya on patient outcomes in multiple sclerosis will be presented at...

0 Replies

2089 Views

Last post by MSUK
Wed Sep 25, 2013 12:04 am
passed Gilenya screening waiting for appointment

Last post by CaliReader « Fri Sep 13, 2013 8:52 pm
Replies: 4
by CaliReader » Sun Apr 07, 2013 5:16 pm

First post

Hi,

At our last conversation in March, my neurologist opened up the universe of MS drugs for me to choose one, including Tysabri.
That was a...

Last post

Hi,

I took my follow up Gilenya tests. WBC was lower than when I had started, but not below normal and
no lower than it had been a couple years...

4 Replies

2716 Views

Last post by CaliReader
Fri Sep 13, 2013 8:52 pm
Patient taking oral MS medication Gilenya developed PML

Last post by sruasonid « Sun Sep 08, 2013 1:09 pm
Replies: 6
by MSUK » Tue Jul 30, 2013 4:42 am

First post

A patient taking Novartis' multiple sclerosis pill Gilenya developed a rare and potentially fatal viral disease, the Swiss drugmaker said on Tuesday,...

Last post

I just posted the following on another thread that was asking anyone if they got infections since taking Gilenya. (This is just part of my answer...

6 Replies

4252 Views

Last post by sruasonid
Sun Sep 08, 2013 1:09 pm
immune compromised?

Last post by sruasonid « Sun Sep 08, 2013 12:33 pm
Replies: 5
by mmpetunia » Sat Aug 10, 2013 6:00 pm

First post

i was reading about the mechanism by which gilenya works-- trapping white blood cells in the lymph nodes. also that gilenya reduces your ability to...

Last post

I've been on Gilenya for over 18 months now. About 8 months ago I started getting HORRIBLE herpes outbreaks. I contracted herpes in 77 but had not...

5 Replies

4892 Views

Last post by sruasonid
Sun Sep 08, 2013 12:33 pm
MS Drug Takes a Feisty Approach Aimed at Younger Patients

Last post by MSUK « Wed Apr 03, 2013 11:52 pm

by MSUK » Wed Apr 03, 2013 11:52 pm

An MS Drug Takes a Feisty Approach Aimed at Younger Patients

The Swiss drug maker Novartis is taking a sassy new tack to win converts to its oral...

0 Replies

2400 Views

Last post by MSUK
Wed Apr 03, 2013 11:52 pm
Gilenya rebound

Last post by CaliReader « Fri Mar 29, 2013 9:28 am
Replies: 2
by NHE » Wed Feb 27, 2013 3:25 am

First post

It may be harder stopping fingolimod (Gilenya) than starting it

Neurologists from Florence in Italy have reported the histories of a series of...

Last post

After six months of refusing injectables, I will be starting Gilenya in April.

I am wary of the rebound effect but 1 out of 6 is not as bad as it...

2 Replies

3388 Views

Last post by CaliReader
Fri Mar 29, 2013 9:28 am
Gilenya® Demonstrates Consistent Benefits..........

Last post by MSUK « Mon Mar 25, 2013 11:30 pm

by MSUK » Mon Mar 25, 2013 11:30 pm

Gilenya® Demonstrates Consistent Benefits In Reduction Of Relapses And Brain Volume Loss In Relapsing-Remitting MS

Data presented at the 65th annual...

0 Replies

2188 Views

Last post by MSUK
Mon Mar 25, 2013 11:30 pm
Oral MS drug, Gilenya, Slowed Brain Loss in Study

Last post by MSUK « Thu Mar 21, 2013 2:47 am

by MSUK » Thu Mar 21, 2013 2:47 am

Novartis AG said its Gilenya drug to treat multiple sclerosis helped slow brain loss, a measure linked to the severity of the disease.

Patients...

0 Replies

2017 Views

Last post by MSUK
Thu Mar 21, 2013 2:47 am
Gilenya and Erectile Disfunction

Last post by ariehs « Tue Feb 05, 2013 1:54 pm
Replies: 2
by ariehs » Fri Jan 25, 2013 4:55 pm

First post

Since being diagnosed I've had a varying mild-to-moderate case of ED and anorgasmia. I tried cialis and viagra to treat, and while they certainly...

Last post

I wasn't supposed to have a waiting period between tysabri & gilenya, but the hospital f***ed up and I went a week past when I would have normally...

2 Replies

3514 Views

Last post by ariehs
Tue Feb 05, 2013 1:54 pm
Warning! Cancer after 6 months of taking Fingolimod(Gilenya)

Last post by NHE « Sun Jan 27, 2013 2:30 pm
Replies: 24
by Rici » Tue Feb 01, 2011 11:11 pm
1

2
First post

Warning! Cancer after 6 months of taking Fingolimod (Gilenya).
Hi,
Please find attached the photographs of skin cancer caused by Fingolimod ($48,000...

Last post

They have also found a matching donor for the bone marrow transplant so that should be taking place in early March if all goes as planned!

That's...
24 Replies

18581 Views

Last post by NHE
Sun Jan 27, 2013 2:30 pm
MSRC Launch Gilenya User Diaries

Last post by MSUK « Mon Jan 21, 2013 12:09 am
Replies: 7
by MSUK » Wed Mar 28, 2012 6:23 am

First post

MSRC Launch Gilenya User Diaries.

Following on from the success of our Tysabri User Diaries in providing personal experiences of MSers on a drug,...

Last post

MSRC Gilenya Diary Update

Toots Mstruth has sent in her latest Gilenya diary update

You can read this at

7 Replies

3280 Views

Last post by MSUK
Mon Jan 21, 2013 12:09 am
Physical benefits on Gilenya

Last post by civickiller « Mon Dec 17, 2012 2:01 pm

by civickiller » Mon Dec 17, 2012 2:01 pm

i have been on gilenya for a month(30) days so far, I am not feeling any differences besides maybe a little more energy.

so my question is, what are...

0 Replies

2451 Views

Last post by civickiller
Mon Dec 17, 2012 2:01 pm
Day 4 on Gilenya

Last post by Aprillynn « Wed Oct 24, 2012 7:49 am
Replies: 4
by mandamurr81 » Wed Nov 16, 2011 8:03 pm

First post

I started Gilenya on Saturday. I don't know what I was expecting. I was a little fatigued the first couple of days. Other than that nothing has...

Last post

I started Gilenya on Saturday. I don't know what I was expecting. I was a little fatigued the first couple of days. Other than that nothing has...

4 Replies

5131 Views

Last post by Aprillynn
Wed Oct 24, 2012 7:49 am
Gilena (Fingolimod) levels of phosphatase

Last post by MHP « Fri Oct 19, 2012 11:01 pm

by MHP » Fri Oct 19, 2012 11:01 pm

Hi there

I was wondering if anybody on Gilena (Fingolimod) has has experienced high levels of alpha phosphatase ALP.

0 Replies

2094 Views

Last post by MHP
Fri Oct 19, 2012 11:01 pm
Gilenya reduces brain loss in Multiple Sclerosis patients

Last post by MSUK « Mon Oct 15, 2012 11:13 am

by MSUK » Mon Oct 15, 2012 11:13 am

Pooled data from two large Phase III studies have demonstrated a significant early treatment effect of Novartis' multiple sclerosis pill Gilenya on...

0 Replies

2251 Views

Last post by MSUK
Mon Oct 15, 2012 11:13 am
Glienya causes Rebound it's poison

Last post by stillfighting « Wed Oct 10, 2012 7:54 pm

by stillfighting » Wed Oct 10, 2012 7:54 pm

0 Replies

2587 Views

Last post by stillfighting
Wed Oct 10, 2012 7:54 pm
Scottish MS patients finally given access to oral MS drug

Last post by MSUK « Mon Sep 10, 2012 5:07 am

by MSUK » Mon Sep 10, 2012 5:07 am

Scottish MS patients finally given access to oral MS drug Gilenya®

The Scottish Medicines Consortium (SMC) has today announced that Gilenya®...

0 Replies

2107 Views

Last post by MSUK
Mon Sep 10, 2012 5:07 am
Rethink on MS pill Gilenya gives hope to Scots sufferers

Last post by MSUK « Mon Sep 10, 2012 12:23 am

by MSUK » Mon Sep 10, 2012 12:23 am

Multiple sclerosis sufferers in Scotland will learn today if the world’s first oral pill to alleviate symptoms of the condition is to be prescribed...

0 Replies

1882 Views

Last post by MSUK
Mon Sep 10, 2012 12:23 am
Gilyenia and PML

Last post by civickiller « Sun Aug 26, 2012 10:36 pm

by civickiller » Sun Aug 26, 2012 10:36 pm

Has anyone got PML from gilyenia. Ive read of a couple of cases but both cases were where the patients took tysabri first so im wondering if anyone...

0 Replies

2363 Views

Last post by civickiller
Sun Aug 26, 2012 10:36 pm
Rebound and Gilenya

Last post by RedPepper « Mon Aug 13, 2012 10:31 am

by RedPepper » Mon Aug 13, 2012 10:31 am

What do you think? Are these high-tech drugs designed to be impossible to stop taking? Do they make the disease worse?

0 Replies

2839 Views

Last post by RedPepper
Mon Aug 13, 2012 10:31 am
X-Rays and Gilenya?

Last post by CureOrBust « Wed Aug 08, 2012 3:45 am

by CureOrBust » Wed Aug 08, 2012 3:45 am

From my rough understanding, Gilenya has an associated increased risk of cancer. Is there any information regarding it and X-Rays? (apart from...

0 Replies

2476 Views

Last post by CureOrBust
Wed Aug 08, 2012 3:45 am
Oral MS drug piloted in North East is available on the NHS

Last post by MSUK « Thu Jul 26, 2012 12:50 am

by MSUK » Thu Jul 26, 2012 12:50 am

NHS funding for a groundbreaking drug piloted in the North East for patients with multiple sclerosis is now mandatory.

The National Institute for...

0 Replies

1956 Views

Last post by MSUK
Thu Jul 26, 2012 12:50 am
MS drug Gilenya prescriptions slowing

Last post by MSUK « Wed Jul 04, 2012 12:29 am

by MSUK » Wed Jul 04, 2012 12:29 am

MS drug Gilenya prescriptions slowing due to lack of monitoring facilities

Novartis’ multiple sclerosis (MS) pill Gilenya faces slowing...

0 Replies

2244 Views

Last post by MSUK
Wed Jul 04, 2012 12:29 am
Oral MS drug Gilenya slows brain inflammation

Last post by MSUK « Mon Jul 02, 2012 11:55 pm

by MSUK » Mon Jul 02, 2012 11:55 pm

The multiple sclerosis medication fingolimod (Gilenya) led to rapid and sustained reductions in MRI-documented inflammatory lesion activity,...

0 Replies

2074 Views

Last post by MSUK
Mon Jul 02, 2012 11:55 pm
Gilenya® shows long-term efficacy and safety - study

Last post by MSUK « Sun Jun 10, 2012 10:55 pm

by MSUK » Sun Jun 10, 2012 10:55 pm

Gilenya® shows long-term efficacy and safety in extension of phase III head-to-head study

New long-term data for Gilenya® (fingolimod), the only...

0 Replies

2279 Views

Last post by MSUK
Sun Jun 10, 2012 10:55 pm
FDA issues new advice on oral MS drug Gilenya

Last post by MSUK « Tue May 15, 2012 1:00 am

by MSUK » Tue May 15, 2012 1:00 am

As their European counterparts did last month, the FDA has recommended continued use of the Gilenya multiple sclerosis pill sold by Novartis, but did...

0 Replies

2504 Views

Last post by MSUK
Tue May 15, 2012 1:00 am
cost?

Last post by CureOrBust « Fri May 11, 2012 7:03 pm
Replies: 1
by andieincalgary » Thu May 10, 2012 10:24 am

First post

Hello all

sorry.. as i am sure this has been addressed before- but this is a new topic to me--what does everyone pay for gilenya--
seems to me here...

Last post

In Australia its is subsidised by the public (ie Govt) health system, and therefore only costs $28.00AUD per month. On the box it says the full price...

1 Replies

2359 Views

Last post by CureOrBust
Fri May 11, 2012 7:03 pm
New MS oral drug, Gilenya, still not available in Eire

Last post by MSUK « Tue May 08, 2012 12:56 am

by MSUK » Tue May 08, 2012 12:56 am

A new oral drug to treat the symptoms of Multiple Sclerosis, which has been licensed and deemed cost-effective here, remains unavailable to...

0 Replies

2291 Views

Last post by MSUK
Tue May 08, 2012 12:56 am
first (and last) dose

Last post by yammerschooner « Thu May 03, 2012 12:41 pm

by yammerschooner » Thu May 03, 2012 12:41 pm

I just took a dose of Gilenya in Los Angeles. Background: I was on ABCRs for seven years, dropped Avonex around New Year's due to a breakthrough...

0 Replies

3209 Views

Last post by yammerschooner
Thu May 03, 2012 12:41 pm
EU supports oral MS drug, Gilenya, with stronger warning

Last post by MSUK « Fri Apr 20, 2012 4:43 am

by MSUK » Fri Apr 20, 2012 4:43 am

European regulators have endorsed the continued use of Novartis AG's multiple sclerosis pill Gilenya, one of the Swiss firm's top new drug hopes, but...

0 Replies

2179 Views

Last post by MSUK
Fri Apr 20, 2012 4:43 am
7 year extension data for Gilenya

Last post by MSUK « Fri Apr 20, 2012 2:53 am

by MSUK » Fri Apr 20, 2012 2:53 am

Extension study data for Gilenya® shows patients successfully treated for up to 7 years

New data will be presented at the 64th annual meeting of...

0 Replies

2117 Views

Last post by MSUK
Fri Apr 20, 2012 2:53 am
EU to rule on safety of Novartis's Gilenya MS pill

Last post by MSUK « Wed Apr 18, 2012 3:21 am

by MSUK » Wed Apr 18, 2012 3:21 am

Europe's drug regulator will likely allow Novartis AG's Gilenya to stay on the market without asking for much stricter safety warnings as it...

0 Replies

1865 Views

Last post by MSUK
Wed Apr 18, 2012 3:21 am

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