@tonyb

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tonyb

Gilenya weakness / fatigue

Hi everyone, I started on Gilenya about 2 weeks ago. I had no side effects for the 1st week but over the last week I've felt very weak. Less strength in my legs and somewhat fatigued. I see that these are reported as side-effects. Has anyone else experienced this on Gilenya ? Did it pass ?

apemery

@apemery

Hi I started gilenya about five weeks ago I was very positive about it and very soon seemed to feel better, unfortunately the last couple of days my legs seemed to have got weaker and I feel quite fatigued and I am just hoping that this will pass I a very interested how you get on with this treatment

MustStopMS

@MustStopMS

I have been on Gilenya since February and i haven't had any issues at all. Hopefully they go away! Keep us posted.

Pulpculture

@Pulpculture

I started on Fingolimod late August / early October. To start with I thought I had made a mistake in coming off Betaferon to go onto it. The first month or so I really felt awful. Fatigue and loss of general power. I really wanted to go back and try to get back on Betaferon but stuck with it. I was feeling concussed and struggling to think straight for the first month. After a couple of months everything settled and I think it's just the best thing. I am almost symptom free and my energy levels are back where they were years ago. Stick with it if you can :)

tonyb

@tonyb

Thanks everyone and particularly yours Pulpculture ! I feel very encouraged by your experience. I'll stick with it and see how things pan out. Fingers crossed :)

minnieee

@minnieee

Yes I'm feeling like this too, I started almost four weeks ago. I had an appointment with my neurologist yesterday though, and because I haven't been on medication for a few months and my MS is quite bad, he said my body is going to take a while to get used to it. He just told me to keep at it and to try and get into a good routine to help the side effects. Keep us posted about how you're feeling on gilenya!

shadows

@shadows

Yup Gilenya, been on it for 1.5 years. 6mo. After being on it had an MRI. And this was different.. Keep in mind that since '05 taking everything meds possible from the A/B/C's to tysabri and chemo with NO improvement (my MRI's all these years where at best pictures of "connect the dots" a past time, I have taken at least 15 MRI'S in the history of my MS. OK Back to Gilenyia......for over a year now there is now "spots". No active MS..... THAT'S ALL I CAN SAY ABOUT THAT MED...

tonyb

@tonyb

Well I'm pleased to report that it seems to be slowly passing. For the last few days I've been feeling stronger each morning. I've also noticed that for the first time in a few years, the 'brain fog' seems to have lifted. I spoke to the MS nurse yesterday and she said she wouldn't be concerned unless it didn't improve or got worse. Hope this post will reassure others starting on Gilenya :)

tonyb

@tonyb

Hi everyone ! It's been a while since I posted on this. I've seen the MS Nurse and she's got me to get the follow up pathology done. I'm seeing my Neuro on Tuesday. As things stand at the moment , after 8 weeks on Gilenya, I'm fatigued and my legs have remained weak. My health hasn't returned to the pre Gilenya state. Since the pathology was taken, I've 'experiemented' a bit. What I've found is that if I stop Gilenya for a day my legs improve on the second day. This has happened 2 times out of 2. I'm not taking the tab again tonight to see what happens tomorrow. I don't think Gilenya agrees with me.

Tabbycat

@Tabbycat

Hi @tonyb, I would be wary of coming on and off it like that. Remember if you miss too many tablets you have to go through the whole blood pressure procedure. It is strong stuff that massively suppresses your imune system, so it might take some time to get used to. I have been on it for nearly a year with no side effects but my muscle cramps and walking are getting slowly worse - so def talk to you neuro and take her advice. I actaully met and talked to the head honcho at Novartis who over saw the development of Gilynea and when I told him it had not stopped some symptom slowly getting worse for me, he said I probably had secondary MS and that he considered that was a completely different disease to RR MS. make you wonder what they really know. Take care!

tonyb

@tonyb

Thanks tabbycat. Yeah I know not to stay off it hence the just skipping a day only. I've lived with Type 1 Diabetes for over 40 years which has been all about adjusting medication to maintain good control. It's a hard habit to break when it comes to MS :) I've got PPMS but my neuro still believes that the meds may make a difference. The alternative is to do nothing.

Cazzzzzy

@Cazzzzzy

Gilenya is something I wouldn't mind trying but as a PPMSer I've been told it'd be unlikely I'd be able to! ... You are lucky you have a neuro @tonyb who believes it may help ... I am still waiting to see my MS Specialist but when I do I'll be hoping they have the same belief that yours does! An MSer that lives near me (RRMS) has had great results too taking Gilenya and she had another MRI recently that showed reduced lesions and she feels good! Hope this weakness passes soon for you xxx

tonyb

@tonyb

I had an interesting appointment with my Neuro on Tuesday. He believes that the real issue I'm experiencing is Fatigue. He doesn't think that Gilenya is the direct cause but there may be some involement. The plan is to infuse me with Prednisone 3 times over 3 days. He thinks this will give me a boost. If that doesn't resolve the problem then we'll stop the Gilenya and see what happens. I've never had a relapse, hence the PPMS diagnosis. Apparently even PPMSers can have a relapse and this may be what's happening. The only thing certain about MS is the uncertainty :)

tonyb

@tonyb

Well I had 3 days in hospital last week to get the 3 infusions of methyl-pred and it's done. I've been home a week and the steroid made no difference :( The fatigue and strength in my legs did seem to improve over the 3 days but then things went backwards again. The next step is to stop taking the Gilenya and see what happens. Anyone got any other ideas before stopping ? Ciao, Tony

lorag

@lorag

I wason Gilenya for 6 months and just felt soo weak. I felt better when I stopped it. I felt much better being off it. It has made me scared to try other tablet meds. I have tried many MS meds all me feal weak. I tried tysabri for 6 months but was just a hassle for me to get to the hospital. so on nothing now. thinking about another med but will see.

Stumbler

@Stumbler

@tonyb , High Dosage Steroids are given to help you overcome a relapse. They're not a quick fix, although you might get an immediate improvement, which will be followed by what is referred to as the "steroid crash" a day or two later. But, the role of the steroids is to help your body to recover. It's a kick-start to your recovery. So, steroids are a medium term treatment and they'll be working for you over the next 6-8 weeks or so. So, be patient and allow your body to do its thing.

Cazzzzzy

@Cazzzzzy

Hi @tonyb ... Just picking up on what @Ally mentioned about hormones, all very interesting, I also read recently about how testosterone helped and found these ideas to help increase levels naturally http://fitness.mercola.com/sites/fitness/archive/2012/07/27/increase-testosterone-levels.aspx Could be worth a shot, you've nothing to lose and it's all healthy but yes go easy on the exercise! It is very interesting how hormone levels affect how we feel ... Vitamin D also being a hormone .... I do hope you feel better soon! :) xxx

tonyb

@tonyb

Thanks for responses everyone. I wish my Neuro had told me more about the effect of steroids now Stumbler. Your info wasn't mentioned, so I guess I was expecting too much too soon :) He did tell me that it was to kick-start things, but he didn't talk about how long, so I assumed it was a quick thing. No mention of the 'steroid crash' either. That was a bit of a none event for me although I recognise now that it did impact my moods. Interesting about the hormone levels too. I'll chase that up.

Lind8

@Lind8

Hi bemsaware, hope I got ur nick right. I just started gilenya 4 weeks ago. Did u have any relapse in the beginning? I am having one now, Iam classified as rrms but the aggressive type. I am undergoing cortisone therapy ,my legs feel super weak. Will gilenya help anytime soon ,or like other MSer taking months to see the effect of this med?

tonyb

@tonyb

Well good news! My recent MRIs show no new lesions on Brain or Spine since I started Gilenya over 6 months ago. Previously Copaxone wasn't working hence the move to Gilenya.

Cazzzzzy

@Cazzzzzy

@tonyb ! ... That's great news - good for you!!! ... Maybe there is hope for us PPMSers yet! How are you feeling now? Have the weakness side effects gotten any better? Good for you! ;) xxx

Caterpillar

@Caterpillar

@tonyb so good to hear that your MRI looks better! I hope you also feel better :-), please let us know how things are going. I have just started Gilenya ( day 3). Feeling OK, though my heart rate dropped to 50/minute. I also feel a bit more tired/my legs feel heavy/ it is difficult to exercise. This can partly be explained by low heart rate. BTW, there is a funny app for monitoring pulse from iPhone camera - it is called "vital signs" by Philips. It seems to be fairly accurate. all the best!

drag0nsparks

@drag0nsparks

Hi Everyone, Let me just introduce myself a little. I'm a 24 year old from Singapore diagnosed 2009. Was on rebif for 2 years and then finally gave up because I'd alot of issues while taking it particularly - depression, fatigue, fever/chills/pain. HORRIBLE TIMES. To be honest I felt horrible all along while on Rebif. Anyway just sharing with you guys, I'd just stated on Gilenya last Friday, 22nd Aug. My heart rate dropped till 40 somethin' and then it was back to normal after a day. I'd felt weakness and fatigue like some of you did so I spent my whole weekend laying in bed just because I do not have the energy to perform normal activity around the house. And so I tolerated these side effects till yesterday (Tuesday) that I realized I can't continue this way anymore. For some reason I feel so scared and kind of phobic about having the side effects of these strong medications. I consulted the doctor of course and he claimed that my "fatigue" was due to an inflammation which he'd found in an MRI scan on that same Friday. He said it was all a coincidence which of course I feel like it is the medications' side effect that made me feel so horrible. Anyway, I think that is the end of me and Gilenya. Even up till now (2nd day of withdrawal), I still have the tiredness and headaches and backpain and dizziness. Maybe I am not meant for Gilenya, or any other medication perhaps.

Caterpillar

@Caterpillar

Hi @Drag0nsparks, we are all different and our reactions to medications are different, that's for sure. I have been on Gilenya for three weeks, fatigue is not any better since I started taking it. But I was dead tired before I started taking Gilenya. Heart rate was low for the first two weeks, but is better now. It is not a sugar pill and is certainly doing something - my white blood cell count dropped like a stone just two weeks after starting Gilenya. Maybe some other MS drug will agree better with you - luckily, there is some choice now! Talk to your neuro - it is tempting not to do anything at all - but if you are RRMS then there is a chance that medicines can help.

Rhymenocerous

@Rhymenocerous

Hi Tonyb, This is a reply from your post in Feb, so apologies if it's not valid anymore, but just wanted to stress be very careful about missing Gilenya pills, as having gaps and restarting could put pressure on your heart - hence why if you're off it for a week or more (I think that's the timescale...?) you must be monitored for the first 6-8 hours of restarting by an ECG to check your heart is doing it's job properly. Best Wishes Mel x

Anawith1n

@Anawith1n

Omg I was so so excited with "G" gilenya and now not so happy it's been 6 months now, first 4 half months I loved it, it gave me strength, energy, I looked good felt good. And now well My legs are in pain My body is in pain I'm so so tired cause I don't sleep. One stage my fingers whee swollen, that's because I over cooked myself at night cause it's winter here in Sydney and I rugged up tooooo much. Seeing my neuro next week to discuss my symptoms. Oh well I feel like this :( But I have to smile :)

MsTanyaSmith819

@MsTanyaSmith819

I hope you are feeling better TonyB , I myself am starting Gileyna in about 10 days so I find it very refreshing to be able to come to a place where we can help each other through it, I am super excited about the fact that I no longer have to take a needle ( 18 years of them) But we all react different to the side effects ya know for example with rebif which I thought was a great drug for me I had flu like symptoms but after a week it had passed, and with the tysabri( fantastic medication ) I have never felt better for about 6 months then this level of fatigue set in, so now I chose Gilenya, side effects happen they generally go away pretty quickly, but that is fantastic that your brain fog has finally lifted. Now I am just going to hope beyond hope that that happens for me. But thanks or sharing your journey with us Tonyb

tiredas

@tiredas

Just wanting to bring this topic back and ask contributors how their fatigue and weakness is going now. I have been on Gilenya for a month now and increased fatigue (esp. cog fog) has been major. Hoping it will ease. Btw, Is there anyway to search the forum for a topic. I had to use google to find this one.

Kali

@Kali

@tiredas, re searching the forum There is a magnifying glass icon up on the top on the LHS, which I use to search. Hope that helps

tiredas

@tiredas

OK, great! Thankyou Kali!

Tabbycat

@Tabbycat

Hi @tiredas . I have been on gylinea for nearly two years and feel pretty good. I have had no relapses. The shooting pains in my limbs and the tingling have almost completely gone . Numbness is better in some places and my ability to use my hands to do delicate things has improved. Weakness on one side has got a little worse, but I am so much more hopeful about life since taking this drug. It takes time to realise that it is helping, so try not to be impatient and after the drama of the first dose, I have had no side effects or discomfort what so ever! I hope you have the same experience and happy 2015

nemo

@nemo

I started on Gilenya the 9th of January. My neuro was not happy with how I progressed on Copaxone. After two years of the needle, I made the shift. Before starting, I read a lot of very positive reports from other RRMS people. It has now been three weeks and I have never been so bad. Sleepy, weak legs, irritable and "down". A lot like TonyB from this tread. I want to go back to Copaxone! I am tired. How long should I have to wait for good result?

tiredas

@tiredas

Nemo, I have now been on Gilenya for 2 months and the weakness and fatigue has been major. It also caused me some GI problems. Have been having some very unusual bladder problems for the last month or so. Just currently trying to tease out what the problem is right now, as I can't be sure that it is all Gilenya. So for now I am still staying on the drug. I will update when I have more info.

nemo

@nemo

Thanks, tiredas! I live in Norway and where I live info about Gilenya is, well, a bit difficult to find. Today I took the pill three hours later than normal (it's Saturday after all) and I felt quite good when I woke up. It's now 14:50 and I am dizzy, my legs are stiff and I am, as usual now, very, very tired. This is stressful. I don't know what to do. On Monday I have to go back to work after a week long sick leave (licenced teacher). Guss I'm just frustrated.

Caterpillar

@Caterpillar

Hi @Nemo, for any info about drugs try Felleskatalogen : http://felleskatalogen.no/medisin/gilenya-novartis-571139 for info about Gilenya from Novartis, they have a Norwegian site : http://www.msnytt.no/ I have been on Gilenya for nearly 6 months, tiredness is still there ( but I was tired before I started Gilenya). I am happy that it is a tablet ( I was so sick of needles!), I have not had any major relapses since I started. Try to persevere a little longer, maybe things will get better soon. If things don't get better there are many treatment options other than Gilenya. Good luck! :-)

tiredas

@tiredas

Nemo, Yes, I understand. I have been more than just frustrated on this drug, but my options are pretty limited, so I have persisted for now. I have had severely worsened stiffness on this drug, and I have heard others report stiffness too. I already have stiffness terribly badly in my right leg as a usual symptom that affects my mobility ALOT, and that was worse. Unusually, however, I was also getting bad stiffness in my hands affecting my ability to type - and usually they are more likely to go very limp after some time, not stiff! The stiffness seems to have eased off. I am getting some pathology results done and will decide after that if I am staying on it or not. We can be struggling so much with this disease that we really don't need anything to be making it worse. Very hard when you have to work. I would be discussing with your neurologist any side effects that seem serious, but otherwise I would suggest staying on the drug for at least a full 4 weeks, to assess how it affects you personally. Make sure you are having your white blood cell count and liver enzymes checked regularly on this drug. My neurologist intends to do it every 3 months. Watch for Lymphopenia.

Cleofitz

@Cleofitz

Hi, have been on Gilenya since oct. I used to take the tablet at breakfast, but after 6 wks of bad nausea and always mega fatigue from 2pm onwards , my ms nurse suggested pushing it out by an hour a day, until I was taking the tablet with evening meal. Now I have no more nausea and most of the tiredness comes at 11pm, which is perfect really for sleep. So worth trying to take it nearer nighttime? Might work. Don't get me wrong, I suffer MS fatigue still, but not as bad as oct.

nemo

@nemo

Thank, everyone! Cleofits that was a great suggestion! I'll report back. So greatfull I found this site.

nemo

@nemo

Tiredas; I'll aske my neuro this next visit. In Norway it is like this when starting on Gilenya: You get check up's one month after start up. Then three months, six months, one year and then every year. I have to guard this schedule myself.

TheBeeOfNW

@TheBeeOfNW

Hi all, I really appreciate this thread. I started Gilenya on 1 February 2015, yes a Sunday and in the United States it was Super Bowl Sunday (biggest game of the year for American football). An MD and RN came to my house to monitor me, it was a bit surreal because my family was getting ready to watch the game on TV -- but apparently this is the new USA "Gilenya at Home" program, and I had had such trouble getting the drug that I took the first appointment they offered. My heart rate dropped within the first 15 minutes but was back to normal the next day. However day 3 (yesterday) got really rough again -- unbelievable GI symptoms (I took an anti nausea med but the bloating and diarrhea make it hard for me to go out although fortunately I work from home), nausea, increased numbness and stiffness/cramping like I'd forgotten to take Baclofen. I even felt like I was having a tremor in my left arm that hadn't been there before. I am usually very sensitive to drugs so it didn't surprise me to have those side effects, but I wanted to mention that I went in desperation to my acupuncturist yesterday evening and felt 80% better after the treatment (and my legs were so numb I could barely feel the needles but the treatment still helped -- my acupuncturist said he has been able to help a paraplegic patient so you don't have to be able to feel the needles to get an improved sense of wellbeing). If you have the option to try acupuncture as you adjust, I wanted to mention this. Reading through, I see that the jury is out on how long to wait to see if the med is working, anything from 4 weeks to 1-2 years. I was given a diagnosis of RRMS unexpectedly 3 months ago but I have not had my first remission yet. It seems like some of the side effects of Gilenya are hard to differentiate from MS symptoms which is kind of a head trip. If one is feeling brave enough to put up with the side effects...how long has it taken for Gilenya to help, so that I can set a goal for myself and cross off days on the calendar? If anyone who has previously posted has time for an update, many thanks...

tiredas

@tiredas

Update! I have quit this drug after 9 1/2 weeks. I experienced stiffness, bad cog fog, severe abdominal cramps and headache during the first six weeks of taking this drug, all of which mostly disappeared by this stage. Milder GI problems persisted as did extreme weak episodes and severe unexplained bladder/kidney problems which is the main reason for stopping, even though they may have not been caused by Gilenya - it is currently still a mystery and being investigated further.

nemo

@nemo

Hey, again! I see a few of you have put up updates. This is such a great tread, so let's keep it aliwe. Last time I was here a member suggested I'll take the pill in the evening. I have to do this change one hour later each day. I'm now at 15:30 in the afternoon. The leg stiffness is bad still, but the fatiges are almost gone. I am now starting week four on Gilenya and even though there are good things so far, I am really hoping for a bigger change. I was recommended not to go back to Copaxone just yet.

Cleofitz

@Cleofitz

Hi, it was my tip to start moving the tablet towards evening. Glad it helps a bit. I still get wiped sometimes, but not as much as before. I have bad brain fog - do u?

nemo

@nemo

Yes, Cleofits you gave me that tip. I haven't had brain fog due to MS in a long time. I am struggling getting enough sleep, so I think that is the main reason for a bit of headache and brain fog. My legs are worse than on Copaxone. Tomoorrow I have a telephone appointment with my MS doctor. I'll report back. Stay tuned.

tiredas

@tiredas

Worsened cog-fog and headache were HUGE for me on Gilenya in the first 6 weeks, but fortunately wore off after that. I did come off Gilenya after 9 1/2 weeks but for other reasons.

TheBeeOfNW

@TheBeeOfNW

I have a follow up question for those who stopped Gilenya for other reasons if this isn't too personal. Two people in my local support group said they adjusted to the side effects, then came off Gilenya because they got shingles after about 4-5 months. Has this happened to anyone else? What are some of the other reasons that affect whether you can continue? I'm hoping that two people in one support group with shingles is a coincidence!

tiredas

@tiredas

thebeeofnw, No, that is not a coincidence. The last thing my neuro said to me before he sent me on my way to commence Gilenya is to watch out for a rash that looks like shingles. It is one of the more common serious side effects. Not the reason why I stopped. I think earlier in the thread I said why I had stopped after 9 1/2 weeks. It was due to episodes of profound weakness often accompanied by some new bladder problems. I am not sure if Gilenya has caused this but it all started following commencing Gilenya. I persisted believing Gilenya was not the cause. The bladder issue is terribly odd. Not only is it incontinence (easily attributable to MS) but it is extreme excess urine production ( can be 4 - 6 litres ) continuously over 6 - 13 hrs!!! It is literally pouring out of me but with NO thirst!!! I have usually drunk VERY little and despite the constant urine excretion, I am not thirsty! This doesn't seem like MS - more like an endocrine problem than a neurological problem. I have had numerous things checked on blood and urine pathology and nothing abnormal. What is also inconsistent with most possibilities is my normal to low blood pressure. Anyhow, I stopped Gilenya in case it was part of the problem. I have seen a major reduction in the bladder problem since quitting Gilenya a couple of weeks ago. Gilenya would still be in my system and requires a three month wash out period. Next I see a urologist to try to get to the bottom of the mystery. I just hope the problem disappears. I am not kidding when I use the word PROFOUND when I describe the weakness episodes that I have been experiencing since beginning Glenya - which are sometimes accompanied by the bladder symptoms. The weakness is as bad, even if the bladder problem has become milder. My MS worsened when I tried Tecfidera and the progression has remained. My MS is worse since beginning Gilenya and I just hope this is not a permanent worsening this time. Maybe SPMS is just SO different that for some of us the drugs make things worse, not better.

lorag

@lorag

I agree with you tiredas, I have SPMS and none of the medications agree with me if anything feel worse. Just going natural and take vitamins that make me feel good.

TheBeeOfNW

@TheBeeOfNW

Thank you tiredas. I didn't make the shingles connection even though the label mentioned issues with vaccines and that infections can be more serious -- no one explicitly mentioned shingles until you and the local support group. I am so grateful for other people with MS who explain this stuff, my docs did not. The bladder issues sound exhausting. I hope you feel better after the washout. This is such a strong drug. If you have time to post an update after you see your urologist it would be good to hear how you are doing.

tiredas

@tiredas

You're welcome thebeeofnw. Yes, I will update, It has been a particularly weird problem, yet I think that I may have worked it out myself. I actually think that I have adipsic diabetes insipidus, which would be quite rare, but the only thing that will really fit. Central diabetes insipidus can be caused by brain damage, lesion or inflammation in the hypothalamus, so possibly caused by and MS lesion in my case. Nephrogenic diabetes insipidus can be caused by damage to the kidney possibly by a drug - sometimes an antibiotic. I did have to have a course of antibiotics (not for a UTI ) just prior to the bladder symptoms, so I think either nephrogenic or central is plausible. Although I am more inclined to think it is Central. However, I could be totally wrong!!! I am just keeping my fluids up now because adipsic diabetes insipidus has a chance of mortality due to the lack of thirst. Sipping Gatorade. I am expecting getting the situation diagnosed will be long and drawn out, so I am doing my best to ameliorate things as best I can in the meantime. Yes it is definitely exhausting and I am also sorting out a divorce settlement right at this moment too. Not a great time to have a condition that can increase confusion and cog -fog. I do have an appointment with a urologist, however, I think that it will also require an appointment with an endocrinologist too before I have a definitive answer. The way I am experiencing this in an episodic (coming and going way) I think may make diagnosis tricky. When my electrolytes were tested, they were apparently fairly normal - potassium just being a little low. I have not had ADH tested however, which may be at the heart f the problem, if I am correct in thinking it is diabetes insipidus (not a blood glucose problem , btw - it is very different from the more common diabetes mellitus - types 1 and 2) Anyway, as I have said this is just me stabbing in the dark and I may be totally wrong. When I finally know what it is, I'll let you know.

mdfishinggirl

@mdfishinggirl

Out of curiosity, for those who have tried Gilenya or are on it and live outside the USA, what is the dosage? I assumed it was the same everywhere (.5 mg/day), but now not sure. I've been on Gilenya since 2009 (was part of the clinical trial) and no issues. After reading all this...I am feeling very lucky. But it has got me to thinking about dosages outside the U.S.. I had my first relapse in 1998, dx'ed in 2004 with RRMS. Thank you in advance.

tiredas

@tiredas

That is the same dosage here in Australia also. It would be bizarre if it differed around the world!

mdfishinggirl

@mdfishinggirl

Tiredas , yes it would be! Had to ask though. Of all the people I know on G, I've never heard of all these issues with it. But...we are all different :). Glad it is still working for me...for now. Thanks for your response! Have a great day!

TheBeeOfNW

@TheBeeOfNW

I've made it to 5 weeks on Gilenya and want to give up but am going to try to stick it out. It helps to see that some people have been helped, thanks @mdfishinggirl and @bemsaware -- my goal is to get to 6 months. Maybe we are more likely to post if we are having problems. So if anyone else has an encouraging story to tell about Gilenya it helps to hear that. @tiredas I hope you are doing better, it was interesting I had UTI symptoms this week but when I went to get checked there was no UTI. Nothing as bad as what you were describing but not something I had had before, although of course it could be the MS.

TheBeeOfNW

@TheBeeOfNW

I need to read about Lemtrada but in the meantime your story helps me feel better about choosing Gilenya over Tysabri. Gilenya made me less scared but then I thought maybe I had made the wrong choice, to go through side effects I could have taken the allegedly more effective drug. But they're all hard drugs and Tysabri would not necessarily have been any better or more effective.

WayneXXL

@WayneXXL

I am glad that I checked in today and found this post. I too have been on Gilenya since July 2013, immediately after being diagnosed. It's the only med I have been on , so nothing really to compare it to. MBRSINC above mentioned fatigue and the back/hip pains (crushing YES!). I really don't know what to think - are these exasperated symptoms due to the medicine or is this my new normal? Can we ever really feel 100% better? Last summer, my MRI showed no new lesions and I felt pretty good, but started relapsing in August - the heat, a lot of stress, you know the normal triggers. After some financial difficulty (I lost my job after that round of relapsing) it took forever to get back on the Novartis assistance program, since Gilenya is so expensive. I was stretching my meds out to make them last (every few days or so) - I do NOT recommend doing that, it seemed to make things worse. I fortunately was able to get more before being off the full two weeks; didn't want to have to go through that whole 6 hour monitoring thing again. Anyway, I'm a little nervous to try something else, but it may come to that. I definitely have not been feeling all that great. Any suggestions on what I should ask for? thanks Wayne

Pulpculture

@Pulpculture

Some good and meaningful thoughts from mbrsinc above. I am assuming mbrsinc doesn't work for the manufacturers of Lemtrada (although I am struggling to convince myself this person doesn't, having read and re-read their posts 20 times, as this would be a very powerful marketing tool for a company to push their treatments on a website viewed predominantly by it's potential customers. Let's assume they are not linked, but tread carefully!) Just to put things in the balance there are some HORRIFIC side effects to Lemtrada and not only are they horrific they are statistically quite likely to happen to MANY users of the treatment. From what my MS nurse tells me, MS will be a walk in the park compared to some of the side effects. Some of the statistics are the equivalent to holding a loaded gun to your head and praying the chamber is empty when you hear the click. When my nurse went through the side effects it was the probability of getting them that shocked me (plus I wouldn't swap my MS for any of these side effects.) Do your homework and make the right decision for you. My suggestion is forget about convenience of tablets versus needles / hassle etc. My thoughts are - use as many of the treatments as you can along your journey. If you jump to something like Lemtrada too quickly there isn't a lot left in the armoury after that as many PCT's don't let you go back to the early stage DMD treatments. Remember many people who have issues with treatments tend to have louder voices than people like me who are quietly getting on with life and grateful for the medications that work for me and are provided to me under the NHS. I don't have an axe to grind therefore I am not on here going on about issues and problems with my treatments, as I don't have any. Also remember all DMD's will have a lifespan with your body. None are going to be a panacea forever for you. They will generally work for a period of time and then lose the effectiveness (in my opinion) and then you move on to the next one. Keep safe and have a peaceful day.

kimiblanc

@kimiblanc

Hi everyone, Hope you are all well. I've been reading all of your posts with interest as I can't seem to make my mind up on taking Fingolimod or not... I started Rebif in June 2013 and I had pretty much no side effects but I had to stop it in Oct 2013 as my bloods showed it was impacting on my liver function. I moved back to London a year ago and have been getting more symptoms from my MS and my neuro referred me for Fingolimod. I feel very fortunate that I am able to take this drug but with everything I have heard, I am not sure what to do! During the trials, they had two deaths and my heart rate is only 60/minute anyway. I am really worried about the heart thing and the fatigue that has been described following taking the medication. They did not really highlight this when we had the consultation. If anyone would be happy to share their experience of taking the very first pill and staying in hospital for those 6 hours, I would be really appreciative! I have to make a decision by 5th June :/ Thanks so much, Kim

Stumbler

@Stumbler

@kimiblanc , any DMD that we take is not without risk. The Rebif had a risk, but you were monitored for that risk. That risk began to get bigger and more real for you, so a treatment review was made. The risks with Gilenya are known, so you will be monitored to ensure those risks are mitigated. The six hour monitoring after your first dose is all about mitigating risks regarding an immediate reaction to the drug. We have to trust our medical team that they are on our side. They wouldn't knowingly put us in a risk situation. :wink:

Tabbycat

@Tabbycat

I have been on this thread a couple of times to tell people about my positive experiences with gilyenia . I have had no fatigue issues at all. The heart thing is only the first time you take it, after that it causes no problems at all. After two years of taking it my MRI showed no active leisons and no new relapses. I have health insurance problems and have been so convinced that gelynia is good for me, that I was preparing to move countries to keep on the drug. Everyone is different, but that is my positive story. Good luck!

drag0nsparks

@drag0nsparks

Hi All, how is everyone doing? I thought I should come back and update on what happened between me and Gilenya. After my first post in August 2014 on my experience with Gilenya, I stopped the medication after 4 doses (days) upon my doctor's approval. And when I got another relapse in April 2015 this year, which was right hand numbness, this incident made me think of all the endless possibilities on if I were to start back on the Gilenya. So I did. And for the first 4 days again same thing I experienced severe fatigue but this time I knew better what I should do to work around the fatigue and not feel so miserable all along. So what I did on the first few days of having severe fatigue, I kindly force myself out of bed, walk about although I was tired. I did not just succumb to the tiredness or lie in bed all day. I fought it off by doing small tasks like washing the dishes, sweeping and changing the bedsheets. Simple tasks I was able to complete with no issue, although I frequently sit and rest for a while before continuing. After 4 days I realize fatigue was a little better although I have problems waking up in the morning as I took the meds at night before I sleep. Well, about 7pm in the evening. I feel better if I take at night cause I sleep off the side effects which is actually immediate! I would feel tired and sleepy easily. Oh and I realized when I take at night, I barely wake up in the middle of the night and slept through 10 hours MINIMUM. I sleep like a log! The minimum typical sleep I need is usually 7 hours only and I will automatically wake up by then. On Gilenya, I sleep so much better! That's one thing I appreciate about the med. I refrain from excessively enjoying life (by that I mean I don't GO OUT and socialize that much) cause I am afraid I might get tired easily and won't be able to wake up for work on time. I can't compromise while on Gilenya for sure. After weeks passed, I feel that the fatigue was getting better. UNTIL a month passed and I woke up one afternoon after a nap and developed DOUBLE VISION! Can you imagine the horror of getting sudden double vision after you woke up from a harmless afternoon nap? Coincidently, the day after I first got double vision, was my appointment with my Neuroscience specialist. So the next day I saw him and he was quite shocked that I could have gotten double vision a month after I got right hand numbness. He didn't think it was Gilenya cause it would take more time for the Gilenya to actually work on my body. So yeah, I told him that on Gilenya's website, there is an article on 'macular edema" which I have doubt about. So while he put me on 5 days of IV methylprednisolone, he sent me off on an eye check that concluded NO SWELLING behind my eye. So this double vision wasn't caused by Gilenya. And I would have to just continue taking it. "Phew" Next problem was, my vision wasn't getting better at all even after the 5th day of methylpred! So they sent me hope on a tapered dose of prednisone steroids. That's when life's changed. COMPLETELY. HORRIBLY. You know how the side effects are like if you are an MSer and you totally can relate. But to cut the story short, double vision slowly subsided on the 5th day when I was on a 40mg dose. As the day goes, I was better and double vision subsided by the time I came back to work from hospitalization leave. Today I am seeing normally and no more double vision. I am happy and blessed that I am taking Gilenya and it is definitely a hassle free medication unlike the jabs and injections. Oh by the way I was on Rebif for 2 years but stopped due to depression, flu-like symptoms and fatigue. I hope my story pushes anyone who wishes to give Gilenya a try. Please do take note that different people will develop different side effects while on Gilenya. Do not think that you would have the same side effects as me. SOME experiences I read about, they were really lucky because they do not have side effects at all! Anyway, I've been on Gilenya for about 6 weeks already and I have no more complains about this medication. (but this is also because halfway through Gilenya I was taking steroids which could have altered some possible side effects of Gilenya, who knows?) Good luck and Cheers guys! All the way from Singapore.

drag0nsparks

@drag0nsparks

Hi tabbycat, how lucky it is for you not to have fatigue as side effect. Or have no side effects at all while on Gilenya. Are you active in sports? And from your experience, it makes me more confident to pull off any Gilenya side effects. I have also heard of experiences whereby, 6 months later everything is back to normal for them! Which I am looking forward to this too! Very much. Keep it positive <3

Charliegirl

@Charliegirl

Has anyone come off Gilenya? I have come off Gilenya been a week now after being on it for 2.5 years. Am going on to Lemtrada after a 5 week washout from the Gilenya. Being drug free is making me so yuk in the stomache. Have gone from sleeping 3 hrs a night to last night....12 hrs! MS has been with me for 23 yrs....half my life....the last 5 yrs have been the worse....stopped driving, working and use a w/chair when I am out....that was my biggest fear when I got diagnosed. i have had to go off the Gilenya as I have had 2 relapses....almost 2 yrs to the day apart. Tysabri gave me the anti bodies so I had to come off it. Lemtrada is my last thing to try. Am so scared this is my life now.

nemo

@nemo

I feel for you, Charliegirl. Hope the switch will do you good. How to you know you have a relapse? I have RRMS and I have bad days, but I think I am juset exausted. The only thing that helps is food and sleep. When I wake I am "connected" again.Is that a relapse?

Disien

@Disien

Hi Nemo I have RRMS - have had it for 32 years. Bad days where you feel exhausted and then have a huge sleep and recover are not relapses. I've always regarded those super exhausted episodes as a warning that if I don't ease up and rest I'll be in much bigger trouble. They're like a warning shot across the bows. There are a couple of other things that happen that are also warning shots (right eyelid drooping, getting the shakes and a flashing out the corner of the eye). They always coincide with a busy time in my life - work, family commitments etc. And the best thing is to do exactly what you're doing. - lots of sleep, rest, good food. However, if you don't come right after seven days, then it could be a relapse. I am on week 7 of Gilenya. Weeks 1 - 4 were fine, but after that weakness and fatigue started. So I've just swapped to taking it at night and I'll see if that helps. I think it's a case of hanging in there until my body adjusts to the new drug. It's way better than that horrible stingy Copaxone (the WELTS, Nemo, the WELTS - they were diabolical). And I was on Avonex before that which used to make me feel like a truck had run me over, reversed up and run me over again. I'm still walking after 32 years of MS too, btw. And I didn't get on disease modifying drugs until I'd had MS for 20 years. By then some damage was compromising my walking - but not stopping me. And the DMD's have kept the MS largely at bay. I'm convinced that if I'd been able to access the DMD's earlier than I did I'd still be wearing high heels and dancing! So stick with your DMD's and you'll be doing the tango for years and years!

BourbonRose

@BourbonRose

Hello everyone, I'm just now getting to know about this site. Began Fingolimod last year around September 20th. Luckily, I haven't gotten a lot of colds this season, but I'm experiencing the same thing as Tonyb, which is what brought me here via an internet search. I was on Tysabri for the longest time, and it kept things at bay, and helped me have tons of energy. Unfortunately, I had to be taken off of that because of the JC levels that I had. They were through the roof, said my neuro. My experience with Tecfidera was a horrible one and I could not tolerate that drug whatsoever. While the Gilyena is a bit better, it seems to have sucked every bit of energy out of my body. I take Nugivil on a daily basis because of the fatigue. However, with my fatigue being this bad, it's not making a dent in it anymore. This is leaving me very distraught. Going without any medication at all seems like such a good idea to me, but my neurologist won't have that at all. IS THERE ANY GOOD NEWS ABOUT GILYENA and fatigue after I've been on it for a while? Thanks.

Stumbler

@Stumbler

I'm glad you found this thread, @bourbonrose , as I was going to direct you to it. :wink:

salinawee

@salinawee

Hi @tonyb, how has the 2 years been for you? I am considering Gilenya and this will be my first treatment for ms. Also to @drag0nsparks, it is really great to know someone from Singapore, where the disease is quite rare and almost unheard of! I am from Singapore too and I am certainly interested to hear from you on how you are coping with the condition. I hope a breakthrough in finding a cure will happen soon.

drag0nsparks

@drag0nsparks

Hello @salinawee !! Nice to hear from you! I'll be sending you a private message so we could talk more ^^

DarrenL

@DarrenL

Hey everyone, Just wanted to have a little moan about my Gilenya experience. I was on Tysabri for two, successful years but JCV+ with a high titre made me with switch therapy about four months ago. The first month was pretty uneventful but I've started to suffer awful fatigue - which I've never had previously. My sleep is very disturbed; my spasticity seems to be worsening. I'm feeling generally 'unwell' and seem to be suffering with some depression too. All-in-all, not great. I have an MRI scan in September, and will review the results with my neuro and see if I can make another switch - possibly Lemtrada. I don't want to 'throw in the towel' but life seems to have become a lot harder in the last few month. I've just re-read that and see that it sounds a bit melodramatic! Sorry! Can anyone offer any advice? Thanks, D.

salinawee

@salinawee

Hi @darrenl. Just saw your post today. How did your MRI go? I've been on Gilenya since March this year. I am not sure if it's working or not. Generally I feel weaker than before I started. Never went back to pre-Gilenya state, but too afraid to quit the drug due to uncertainties of what's to come. I'm hoping and waiting for the day I would feel good as some people have been on this drug. Do share your MRI results if you don't mind and tell us if you're still on Gilenya. xx Salina