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Julie  Stachowiak, Ph.D.

Learn about Gilenya

By June 29, 2013

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Lots of people have asked me my opinion about Gilenya. The truth is that I really don't have an opinion about Gilenya. I am glad it exists for the people who need it, however, I am not going to switch, as my Copaxone is working just fine for me (plus, I have low blood pressure, which would worry me a little if I were thinking about trying Gilenya).

I put together the following article in an attempt to compile the facts that I think interest most of us.

Read the full article: Is Gilenya Right for You?

For any of you who have tried Gilenya, please help us out and write a comment about your experience in the comments section below. Tell us the good, the bad and the ugly about this drug, so that people who are trying to decide have some information from people with real experience with GIlenya. Thank you.


July 7, 2013 at 1:36 am
(1) MJ says:

I have been on Gilenya since February 2011. My MS was diagnosed in March 2010 – my doctor started me on copaxone, but it didn’t work well for me (multiple relapses and new symptoms). I also had injection site reactions (like being stung by a wasp). I was fortunate to be seen at a university medical center that had been involved in some of the fingolimod trials, so they had some experience with the drug before it went on the market. Due to the data on lower relapse and disability rates, my doctor recommended that I try Gilenya. I’m an otherwise healthy individual in my 40s and am working fulltime (so I wasn’t eager to have to deal with the flu-like symptoms of the other injectables). I passed all of the pre-screening and went on Gilenya.

It has worked great so far (fingers crossed). After about a month, I stopped developing new symptoms from my MS (which hadn’t been the case when I was on Copaxone). I have not had a relapse while on Gilenya (I’d had 2-3 while on Copaxone in less than a year). While I haven’t gotten better, I have not had any progression in the symptoms I had when I started on Gilenya. My MRIs have shown that a few of my lesions have gone away.

I have not noticed any side effects of the medication. My lymphocytes are lower (part of how the drug works) but my neutrophils and other numbers are all good.

It’s definitely an individual decision and isn’t the same for every person. But for me, I’m extremely happy and plan to stay on Gilenya, until there’s a cure, or something with a better rate of reducing relapses and disability comes out, or the Gilenya stops working for me. Good luck to all.

(FYI – your link above to the article doesn’t work)

July 8, 2013 at 11:37 pm
(2) RS says:

I started Gilenya in March 2012 and have had no issues or ms progression so far. My heart rate and blood pressure never changed during the observation day. Fortunately, my only Gilenya complaint has been minor lower back pain that happens once a month or so and is treatable by stretching. I haven’t had much reduction in symptoms but my MRI shows no enhancing lesions vs my Rebif days when every MRI I had showed new lesions. So far I am satisfied with my doctor’s recommendation that I switch.

July 10, 2013 at 11:10 am
(3) Brenda B says:

I have been on Gilenya since February 2012 and loving it. I was previously on Rebif and had every reaction imaginable. I was miserable for 2 years. I don’t like Novartis assistance plan. For those who have monthly copays of less than $800 it is great they get meds for free up to $10k per year. For me I have to pay $4100 out of pocket before insurance picks up. In September I will have to pay that minus the $800. Someway or another that $10k needs to be redefined so those or us with enormous deductibles can have some relief. Paying that one time $4100 is far less than their $10k max.

July 10, 2013 at 11:17 am
(4) Leslie Poe says:

Was diagnosed with MS in 1993, after using all of the injectables, Dr put my on Gilenya. Have had no problems at all. MRI’s show some of my lesions have actually decreased in size & no NEW ones! LOVING IT!

July 10, 2013 at 11:17 am
(5) Eric says:

My wife has been taking Gilenya for 2 years and it has worked well for her. Similar to RS comments she has had no reduction in symptoms but her MRI showed it not getting worse. She loves taking pill form compared to needle everyday for the 21 years she has had this. She uses a walker and the heat like everybody is the worst part, it locks her body so she can’t move. It is a horrible disease and we live in a small Cape in CT and our bedroom is upstairs so that is tough as well.

July 10, 2013 at 11:23 am
(6) Lori says:

I was diagnosed two years ago and I have been on Gilenya for six months. Recent blood tests have showed a very low white blood cell count. Am now being monitored by a hemotologist. The first thought is that it is the drug. No other real issues. My concern is long term at this point. I’m considering going off all meds and looking at a more holistic approach. I’ve been reviewing the MSDietforwomen.com site lately. Does anyone have any opinions on this route?

July 10, 2013 at 11:38 am
(7) Denise says:

I have been on Gilenya since May 2012 and love it! I was previously on Avonex for 7 years and had all sorts of side effects, the major one being depression. Within 6 months of starting Gilenya I was able to come off of my antidepressants and have never felt better. My fatigue is better. I don’t have the weekly flu feelings like I did with Avonex, so have no need for high doses of ibuprofen for the aches and fevers. No more stress over weekly shots, which were so hard to give myself. My entire physical outlook has changed, I have energy! I am able to keep up with my kids and husband now. I honestly have nothing bad to say about the Gilenya, for me it is a wonderful fit!

July 10, 2013 at 11:47 am
(8) Dan says:

I’ve been on Gilenya for over a year now (June 2012) and I’ve had no issues, heart rate and blood pressure is good all my blood work over the year has been excellent, eye tests have been good as well, I had an MRI with no new lesions. I got diagnosed with MS in February of 2011, and I started taking Rebif and all was going great until 6 months later, I started getting these massive headaches that would last for days, they were so bad I couldn’t even go to work, so I stopped taking it and after that I felt great then my neroulogist put me on Avonex and that medication was going great, 6 months later the same thing happened again I started getting these massive headaches that would last for days, so I stopped that and my neroulogist wanted to put me on copaxazone and I flat out told him no more injection meds either put me on the new pill or no ms meds I’ll take my chances with no meds. So he put me on Gilenya I was a bit nervous at first because of the first does rules of bring monitored for 6 hours but everything went really good I had no issues and the Gilenya group was really knowledgeable and answered all my questions. So all in all I think Gilenya is a good drug, and I found out that these MS Meds are a trail and error you have to keep trying till you find out what is right for you, and you may getting lucky on your first attempt.

July 10, 2013 at 11:58 am
(9) Mike says:

I’ve been on Gilenya for only two months, beginning right after I was diagnosed the first week of May. So this is my first MS med, which means I have nothing to compare it with. But I haven’t had any new symptoms, and it doesn’t feel like there’s been any side effects. But like I said, I have nothing to compare it with. I’m sure thankful to have a daily pill rather than an injection, though!

July 10, 2013 at 12:01 pm
(10) Joan W says:

I started Gilenya in Oct 2011, and am doing GREAT.

I had been on Copaxone for 12 years, but in 2010-11 started seeing increasing disability plus increasing ‘hot spots’ on MRIs. Decided that the Copaxone was probably not as effective as it had been, plus I was having significant injection problems, so I switched.

- My First Dose Observation was a non-event, no problems at all.
- I had two weeks of loose bowels (minor) but no other side effects.
- My liver enzymes spiked to 2x over the max level for six months, then went back to normal.
- My lymphocytes are low, as expected, but I haven’t gotten sick (other than seasonal allergies).
- MRIs are showing no new or active lesions.
- I no longer need a rollator or cane.
- Fatigue is still my worst symptom.

At the same time as starting Gilenya, I started physical therapy. In the past, PT produced unremarkable results, but this time I saw measurable improvements in my strength and stamina. My neuro suggested that the Gilenya may have reduced inflammation enough to allow the PT to be more effective. My MRIs continue to show no new or active lesions.

I am no longer using a rollator or cane, and my scooter is collecting dust in the garage. I am now able to stand with no support while carrying on a short conversation. Unfortunately, fatigue is still problematic.

With my physical improvements, I had the courage to take a vacation to France this year. I had to rely on energy-conservation techniques quite heavily, such as getting a wheel chair for airports, but I used a cane on only two days of the vacation, and I did a lot of walking.

July 10, 2013 at 12:20 pm
(11) Kim says:

I’ve been diagnosed since 2000 and had a relatively mild course so far. I took copaxone for years but had injection site reactions. I took rebid for about 8 months but had bad depression and “flu like” symptoms which made me feel terrible all the time. On gilenya for maybe two years. It’s a non- issue drug, no side effects and easy to take. I joke that opening the blister pack is the hardest part of the treatment .mei looks fine. No relapses since starting . I’m 46 and otherwise very healthy.

July 10, 2013 at 12:26 pm
(12) Rhonda says:

Hi everyone, My name is Rhonda and live in Idaho on a 60 acre ranch alone, with hay fields, horse’s and breed German Shepherd dog’s!
Yes, I have MS, with 49 lesion’s! I was diagnosed 2 years ago this year, which would of been in 2011, after an injury to my neck. They feel I have had MS for over 30 year’s. The Doctor’s do not understand why I do so well, except the act I work hard!
I tried Copazone, the needle did not like me, had 4″ bruises where I gave myself the shot, I was only on it for 2weeks, and took myself off it when I could not get answers over the phone, because it was a holiday the 4th, so much for the 24 hour hot line!
Told the Doctor after research I wanted to try it! Yes, it was scarey the first 6 hours, did exercises, during the process to keep my heart rate up, like squats, push ups, etc.. Since being n Gilenya, I hardly ever get tingling, my numbness is gone, and being in the heat or sun, I try to conditions my self! Need a new MRI, but last time lesions were diminishing, especially a 2 ” one was gone! so will wait till fall to get my MRI, against my doctor’s wishes, am to busy working my ranch1 So fall will be a better time! Good luck! I do have slight problems, so far no relapses the I am aware of!

July 10, 2013 at 12:29 pm
(13) Sherri says:

After extensive research, I will not take Gilenya for three reasons:

1) I have benign PVCs (premature ventricular contractions) of the heart and a family hx of heart disease;
2) Cardiac arrest has been associated with brainstem lesions, which I have;
3) I tested positive for the JC Virus antibodies, which can lead to PML (progressive multifocal leukoencephalopathy) a deadly brain infection. PML has been found among patients who take Tysabri as well as the new oral medications, Gilenya and BG-12.

All I can say is do your research and don’t get pushed into any medication without doing your due diligence.

July 10, 2013 at 12:37 pm
(14) Bh says:

I’ve been on Gilenya since Jan 2012. I’ve been on Copaxone (twice) but eventually the injection site reactions got intolerable. Tried Rebif but couldn’t get past the flu-like symptoms. Tried Tysabri for 3 infusions, but ended up with a couple of serious infections shortly after the firs infusion. My spouse said the Tysabri seemed to almost instantly make me worse.

I’m having no problems with the Gilenya and like it (except for cost – but all the MS drugs are way too expensive). Not sure it is doing any good, though. Never really had much in the way of relapses in the 26 years since my diagnosis. I fear I am deep into SPMS now as I am just slowly losing function. Recently had to move to using a wheelchair for work. Doc says keep taking it as it can’t hurt and is one of the more effective drugs at relapse prevention. Since I don’t seem to be having any side effects from it, I’ll keep taking it.

July 10, 2013 at 12:46 pm
(15) Natalie Wichard says:

I was initially on Rebif when I was diagnosed in 2009. I did very well on Rebif but wanted to try Gilena when it came out. So I went on Gilenya in September 2012. I did not tolerate it well at all! I had fatigue that was only rivaled by the fatigue I felt in my first trimester of pregnancy! Also, lots of tingling, weakness and jerky walking. Once I stopped Gilenya and went back on Rebif, all those things dissapeared. Everyone is different!

July 10, 2013 at 1:09 pm
(16) TJS says:

I’ve been on Gilenya since Jan 2011, was diagnosed with RRMS in Oct 2010. I chose this as my neurologist and I wanted to use potentially more effective even if more risky drug from the start. Luckily, I have not experienced and serious adverse events and I have been relapse free since starting the drug. I do worry however if there are any long term effects (especially in regards to my heart). But for now it’s working, and I’m definitely sticking with it. My insurance has a max out of pocket per year of $1500, so after February of each year I have no payment to make. Luckily, for Jan and Feb, Novartis is currently picking up the co-pay for me. So I’m lucky right now in that I pay exactly $0 per year for Gilenya.

July 10, 2013 at 1:20 pm
(17) Theresa says:

I have been on Gilenya since December 1, 2011. The only symptom I had during the first dose observation was some mild nausea which never came back. I had been on Copaxone and having flare-ups of MS symptoms every other month and chronic skin reactions to the injection sites. I was on Gilenya for about two months before I really saw the improvement. I’ve had no more flare-ups or progression of my disease. My follow-up MRI showed no further lesions. I do have my residual symptoms from before the change. But, I spent this last year working out with a trainer (initially) at the local gym and totally improved my physical capabilities. I went from not being able to push the peddle down on the elliptical exerciser to training for a 50 mile bike ride at the MS Ride coming up in September. Last weekend I rode 42 miles and I can ride the elliptical exerciser for 50 minutes till I get bored. I lift weights with the young people (I’m 55 yrs old) and I push myself. It works. I finally feel like I have control of the MS; it does not control me. This medicine changed my life. I was spiraling downward until I switched. I have no side effects. I receive it by UPS every month through mail order specialty pharmacy. I take it with my morning breakfast smoothie. Best wishes to anyone who tries this medicine.

July 10, 2013 at 1:28 pm
(18) Susan says:

All these comments were SO helpful!! My sister was diagnosed with MS in 2010 (we suspect she had it loooong before the diagnosis!), and has been on Copaxone. MRI’s have been very good, however, we are noticing her disabilities increasing (poor walking). Meeting with her neuro this week and will be bringing up the possibility of switching to Gilenya. Pill form would be so much easier than daily injections! Thanks again for the feedback – it is so helpful to those trying to make decisions on their treatment protocols!

July 10, 2013 at 2:00 pm
(19) Lisa says:

I was diagnosed in January 1998. I was first on Avonex which didn’t work very well. Next, Rebif which left huge lumps wherever I got the shot. This resulted in me not being very good about taking it 3 times a week. I was soooo excited when my Dr. said I could go on Gilenya in Oct. 2010. I thought it was great, no noticeable side effects! Then on a follow up visit to the opthamalogist, it was discovered that I had macular edema!! Ugh, I had to go off of Gilenya. I took a break and didn’t take anything for almost a year. For the past year I have been in a drug trial called the mirror study. I have been doing very well and haven’t had an attack in over a year and a half. I have also changed my diet which I believe has helped tremendously! I took gluten out of my diet and started incorporating daily green smoothies. My husband asked me if I think it is because of the drug or the changes in my diet. I’m really not sure but I feel better than I have in years!

July 10, 2013 at 3:01 pm
(20) Michelle E. says:

I was diagnosed with MS in December of 2006. Since my diagnosis I’ve taken Rebif, Tysabri, Copaxone and one Novantrone treatment. I failed all those therapies, meaning that I had enhancing lesions and continuing relapses with all. I was nervous about taking Gilenya because of all the warnings associated with the drug, so I stalled for a couple of years (also had 3 back surgeries during that time and couldn’t start Gilenya in the middle of that). I finally started Gilenya in June of 2012. Since beginning Gilenya, I’ve had stable MRI’s with NO enhancing lesions and no relapses for the first time since my diagnosis!! I feel like a few of my symptoms, like dizziness and fatigue, have improved a little since taking it for a year. I haven’t had any side effects and it’s a breeze to take vs. shots and IV treatments. I love it!! I will continue taking Gilenya until it stops working or a new treatment with steller results comes out. :-)

July 10, 2013 at 3:28 pm
(21) Octavia Abbott says:

I was diagnosed with MS in November 2009. I was first on Rebif, but had a really bad reaction to it. As most of u that are on Rebif may already know, that medication burns really badly as u inject it. Well, I had 2 major burn from the inside out on both my legs @ the injection sites! I went to my internal medicine doctor and he took me off the medication. Well I went to my neurologist and she talked to me about getting on the Gilenya. I went home and talked it over with my husband and decided it would be a better option for me. The tests that they make u get are very necessary. I had to get an ekg and I had to see my eye dr before I was cleared to take the first pill. Well I
have been on it for almost 2 years now and have not regretted it:-) I have to go to the eye dr every 3 months,
but I’d rather do that than take those shots! The only reaction I’ve had to it is a migraine that lasts quite a while and I’ve only had it twice since I’ve been on it.
I have no complaints with this medication. It is costly, but with the right insurance and help from the drug company, I pay nothing!:-)

July 10, 2013 at 3:37 pm
(22) Amber says:

I talked to my doctor about trying it out, but he is hesitant to switch me because the Avonex is working so well. I would love to see if Gilenya would help my fatigue like it did some other commenters. I honestly am a little afraid because of the people who’ve died, but I’m beginning to change my tune about that.

July 10, 2013 at 4:36 pm
(23) Michelle says:

I LOVE Gilenya. I was diagnosed 2006 and started immediately on Rebif. That work great until my skin started reacting to the shots and I was starting to get panis attacks about injecting yet again. It was a pain in the butt to get started on Gilenya. My dr’s assistant was AWESOME and did all the work to get it going. Now I take a pill a day and haven’t had a single exacerbation (knock on wood)

July 10, 2013 at 10:52 pm
(24) Tom B. says:

I was diagnosed with MS in February of 2008. I am a true believer that everyone is their best own doctor because you know exactly how you are feeling. Being human and especially male, we a lot of times are not totally honest with doctors. “Something about being Macho”. Anyways, I was diagnosed only about eight months after my first symptoms. I started on Copaxone, had fair results. Then I went on Rebif and still only fair results. Finally my doc had me go on Gilenya. I hated shots so I was very happy. But, here recently, I started having problems. I became even more lethargic than before and then I had an experience where I felt like I went into shock (may have been totally unrelated). So, it was time to see my good doctor. He ordered a battery of blood tests. And I found out what I was hoping not to, my WBC (White Blood Cell count) was very low. Unacceptably low.

So, I see the good doc in a week and we’ll try to figure out what is our next step. I titrated off the Gilenya for a week and stopped completely. Since Copaxone and the interferons did not work well, I am hoping for FDA approval of BG12 soon.


July 10, 2013 at 11:24 pm
(25) Denise G. says:

I was diagnosed in 2009. At that time my neurologist put me on Copaxone. Other than having 1-2 relapses a year, my cognition decline, my decline on my left side, the continual tingling in my hands/arms/legs, and the reaction to the injections I tolerated it fine. lol My dr asked me if I wanted to be a part of a clinical trial for Gilenya. I agreed. The first drug I was put on was Rebif. I did not have a good reaction to the Rebif. The injections were painful and I had all the side effects. I had to stay on this drug for 3 months before I could try another drug. I finally was able to try the Gilenya. My first pill was 6-27-13. I had to sit there for the 6 hr observation. They took my blood pressure and pulse every hr and an ekg before I took the drug and 6 hrs after I took the drug. I also had a series of questions I had to answer. Since then I have been having an increase in low back pain and pain in my feet and legs. I get fatigued easy and I can’t walk or be on my legs for long periods of time. I do have to monitor my blood pressure and heart rate because I have low blood pressure and there is family history of heart disease. So I will see how long I can tolerate this drug.

July 10, 2013 at 11:47 pm
(26) Tim says:

I have been on Gilenya for 6 months, after Rebif for 6 years. The difference is night and day. I used to get injection site reactions with Rebif, and had numerous MS symptoms every day. After Gilenya, most or all of the symptoms have disappeared, and the once a day pill vs injections is life changing.

July 11, 2013 at 8:01 am
(27) Cynthia Mull says:

I began taking gilenya in Oct 2012. I have found it to be very helpful. I have had less fatigue, I have felling in most of my body again. I have not had any of the heart issues that come with is drug so far. however I do experience some of the typical side effects. nausea diarrhea that is the worst. but i feel you have to take the bad with the good. I am able to work 40 + a week. Take care of my daughter and my aging mother. I do thing for myself and have started being able to go on walks. I am also remembering things sometimes. Not the short term. but the long term is coming back. I have had MS sense 1997. This is the best I have felt yet. before I had went all the way to a walker left leg and arm did not work. So neither could I. I am the soul provider for my home. This is an awesome fix and my manager tells me he can see the differences. not only fiscally but he side I seem happier and look better. His wife has MS as well so he is trying to get her on this. I hope this blog helps people to understand the pros and cons of the drug. I like it. I hated to give my self a shot once a week and feel really bad for 2 days. Then try to work.

July 11, 2013 at 10:27 am
(28) Colleen says:

I was dxd in 2/08 and put on Avonex. Last year Dr. thought Avonex might not be working as well and put me on Gilyena. It’s great taking a pill instead of that injection. Other than the hassle of sitting in the hospital for 6 hours after the first dose having my heart rate monitored, I’ve had no inconvenience at all! No symptoms. It’s thought I have “silent lesions” rather than relapses so I won’t know how things are until I get my next MRI. I have low blood pressure too and in the hospital my heart rate did drop into the 50 range but it’s bounced back up to normal.

July 11, 2013 at 3:26 pm
(29) Darla says:

I have been on it for almost 2 years. I am very happy with the results . I had tried 4 of the 5 others with horrible side effects from them. Except Tysabri. liked that one but was on as long as recommended.I have done well , I work part time, take care of my family do Yoga ( yes.. Yoga) I wouldn’t have thought that possible 3 yrs ago. I know there will be relapses and I still have those days when things aren’t as good as they should be but so do most women of my age. I am hopeful with this drug.

July 12, 2013 at 11:41 am
(30) Ronni says:

I started the Gilenya (Fingolimod back then) clinical trial in April 2008 and am still on it and doing well. I have nothing but good things to say about it. It has slowed my progression, I’ve had improvements in symptoms and no more shots! I am sensitive to medications, so I’ve been thrilled that I have tolerated it so well. If your MS drug isn’t working for you, I highly recommend it!

July 12, 2013 at 11:48 am
(31) Deedle says:

There’s lots of information on the Gilenya User’s Support Group page on Facebook. Many current users and clinical trial participants on there have answered all my questions about Gilenya. So far, I’m very happy with the results and no side effects! Yay!

July 12, 2013 at 3:01 pm
(32) Diana says:

I was diagnosed in 2000. I have used copaxone with no issues besides the ugly injection sites. I have used nothing for 6 months due to insurance changes, I really want to change to a non injection drug.
Seriously thinking of starting up Gilenya

July 12, 2013 at 6:09 pm
(33) Chrystiana says:

I waited and took Gilenya as soon as it came out . . . BIG mistake! The first pill – no problem, next day, same time second pill and 15 minutes later my husband was calling 911. I was having severe seizures and unable to understand or communicate. I have never had an allergic reaction, seizure or the likes so this was a surprise. I did recover and was able to go home the next day. It looks as if I am allergic to Gilenya – go figure. You just never know, happy I tried it but not happy for the outcome. :)

July 16, 2013 at 9:38 pm
(34) Ellen says:

I have been taking Gilenya since June 2011, and things are going great. I was diagnosed in 2009, and started on Rebif May 2009. Had multiple relapses while on Rebif, but have had none since starting Gilenya. My lymphocyte count is low, and ALT (liver enzyme) is elevated, but neither has caused any problems. I feel Gilenya has been very effective for me. My neurologist told me that if I continue to do so well, we’d think about stopping the Gilenya…but honestly, I don’t care if it’s the Glienya or just the natural course of my disease, I don’t want to change anything :)

July 18, 2013 at 7:39 am
(35) G Reef says:

I was diagnosed with MS on December 5 of 2011 so Gilenya is the only medication I have taken. I will admit that the MRI’s that were taken after being put on the medication were good, no new lesions, however, my white blood count became so low in which it caused the ” other serious infection” to occur, (HSV 1 and 2) I didn’t know what the other serious infection was because my doctor didn’t warn me about it. I had to do extensive research myself. I found that during the trial study, people have died from a herpes infection. The doctor took me off the medication immediately after I was tested for it by another doctor. Before I found out what the infection was that I had, I was really at my breaking point but I’m doing a little better. The doctor wants me to take the new pill that just came on the market and I’m very skeptical about taking it because I don’t want to keep being a guinea pig. All I can say is, just be careful taking the medication and do research.

July 26, 2013 at 4:22 pm
(36) Lisa says:

I was on Copaxone for a few years with no side effects. However, the whole once a day shot was causing me not to sleep due to stress about giving myself the shot and I started skipping the shot. So doc had me try Gilenya. Not the drug for me. Every side effect that was possible I got to include what they thought to be a heart attack. At one point I got so disoriented at work I didn’t know where I was at. Does not mean its bead just didn’t work for me. I am now on Avonex and every side effect possible to that one too….I am hoping to find a therapy that does not make me totally sick and non functional…

October 13, 2013 at 9:49 am
(37) Sunny says:

I was diagnosed this year with MS and I started gilenya on June. I was on a laser treatment for depilation, and i’d like to know if someone, has tried this, and if any reaction is possible. Doctors said to me they don’t know about fingolimod photosensiblility, but i’d like to know about someone experience. I haven’t had any more laser session since i started treatment.
Thanks in advance.

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