So good it feels that there is many possitv responses to gelenya, I was at the doc yesterday and he told me that Gilenya was like my only option besides compaxone that dosent work to the fullest… So I have been searching the web for peopel openions, cus I´m a bit scared, not fun with new drugs, I´m als so paranoid and pesimistic so I think that I will get all of the sideefects at once…
The hardest part is that my doc is like rusching it so they wants me to start on thusday alreddy… I dont think it is that kind of hurry really sence they told med before the sommer that I shuld change the med and I did then take al the tests and stuffs… And they have just come back from there vecation so it feels abit like they just wants al the “summer papers” to be gone as soon as possible…
If you have more intell pleace share, cus I´m still scared even though it feels abit better after reding your coments…
I’m sure they’re not really rushing you as such. They are probably just keen for you to start it so you don’t have any more relapses. That’s just the way with DMDs really. There’s always this long wait while they get all the paperwork and tests sorted and then they get you into the clinic at the next available slot. Try not to stress and just see it as a positive step in the fight against the disease.
Chin up, this is hopefully the start of better things for you (and me, fingers crossed). Perhaps we can share notes in the coming weeks?
I have the same problems walking although I do seem to be getting some strength back in my leg since starting Gilenya. I haven’t felt better since before I was diagnosed and ditching Rebif was like a new lease of life. Like you, my main problem now is wobblyness and balance. I was using a stick, not really because I needed it, but so that people wouldn’t think I was drunk or wonder why I was so slow. I’ve ditched it now as I’m sick of feeling like a victim.
Unless you find out you’ve definitely got a problem with your heart, I would’t worry too much about it. My heart rate dropped a bit after the first dose but I wouldn’t even have known unless they told me. I’m sure you’ll be absolutely fine.
I worried myself sick about Gilenya and my escalating relapse rate but I made a decision a few weeks ago to just stop worrying about it. I no longer think too much about what might happen in the future and I’ve stopped obsessing about my symptoms. I’m focussing on work and family and to hell with MS. Easier said than done but I feel so much better for it.
Please let me know if and when you start Gilenya and how you get on with it, I’d be really interested to know. Send a DM if you like.
I didn’t sleep a wink the night after that conversation with my nurse because I was stressing about the family history but then yesterday I had a long talk with myself (that probably makes me insane but I find it helps!!) and have decided on pretty much what you have just said.
I slept really well last night. If the consultants decide that I am okay to start on Gilenya then that’s good enough for me. The last thing they want is any complications on their hands so I’m sure they wouldn’t let me start on it if there was any risk.
If I cannot have Gilenya, then I will try Copaxone. Problem solved, no more fretting and, like you, I’m concentrating on work, leisure and family.
I will, of course, update this thread if and when I start on my new DMD (whatever it is).
Hi again, just wanted to update, i started with Gilenya yesterday, totaly super boring day at the hospital, but it was okay, my heartrate went down a litel bit but not mutch, just notised it at the first drop, like 20min after I took the pill, as I got tired, but then it was fine. But youst saying, shave your legs, it hearts like h**l to take the sticky things of^^ Today I made chore to get a real sleep before I headed over to school, had loots of energy for a coupel of houers but after like 5 houers at school I started to feel realy tired and thats my curent state, still energetic in spirit but realy tired in my body, cant realy explain, it´s abit frustrationg when the body whants one thing and the mind another…
(btw sorry for the speling, english isn´t my first language and when im tired the spelling gets even worse=P)
I’d be happy with any news right now. My Rebif supplies run out on Monday I don’t want to seem like a nag and be ringing the hospital all the time. I was supposed to be nurse’s top priority when my neuro returned from holiday on Friday but he probably had lots of priorities by then.
Hope your eyes are okay Gary. Again, I’m sure they have to list it as a side effect but it probably doesn’t happen very often.
I’m glad you didn’t have any problems H191 - it seems odd calling you by a number - hopefully you won’t get any side effects either. I’m used to everything making me tired, whenever my GP prescribes another tablet he says it might make me drowsy and I just laugh and say that’s a way of life and I’m used to it!
I had my 6 month check up yesterday and everything was fine. Nothing to report. Boring. Then my MS nurse casually dropped into the conversation that she was worried about the low level of white blood cells and the risk of infections. What??!! But that’s what it’s supposed to do I said. You told me there was nothing to worry about I said. She said the makers assure her there’s nothing to worry about. Yeah THE MAKERS! I said. They’re not likely to say anything else are they? So basically you believed the advert?? So why are YOU worried then? I said.
Eventually she managed to get me off the ceiling and explained she meant that she was worried before she read the data. She showed me some which reassured me a bit but now I’m back to worrying about infections after I had done a brilliant job of not worrying about them :-/
Hi HI91
No one told me about the electrodes. They put them on my chest without shaving it. I’ve never felt anything like it when they pulled them off (and I have tattoos) Tracey, I’m sure you don’t have chest hair but if you do, shave it off before you go into hospital
Good luck both of you. If you’re the same as me you’ll have nothing to report - great
I love it when they tell you not to worry. That’s easy for someone to say when they’re not the ones waiting for something to go wrong! Hopefully you’ll still have nothing to report at your next check up.
I chased the hospital again on Friday as I now have one Rebif injection left for tonight (and that’s only because I missed an injection way back sometime). I waited all day for a call back as promised and, wouldn’t you know, they called back at 4.10pm in the middle of my afternoon nap. The nurse said not to worry about the lack of Rebif as the prescription has been cancelled, I will be starting fingolimod and I will be getting an appointment. As my son said ‘Will?’ No dates yet, no contact from BUPA to arrange delivery etc. As I’m out on a limb here in sleepy Norfolk, they only come out once a month and I doubt they will make a special trip so that’s probably another fortnight yet.
So, yes, I am still worrying. It’s been 3 months since my last relapse and my legs are finally working reasonably well for short distances (up to 500m). I need the stick for anything over that and, on a bad day, even for the last 100m of a 500m walk. There was a 3 month gap between the last 2 relapses while I was taking Rebif regularly and the hospital told me to keep taking it right up to starting on fingolimod as my MS has been so active. So, how am I supposed to not worry now that I have run out of Rebif?!
I’m feeling the same frustration I felt 4 years ago when I was waiting to start a DMD. Sitting around waiting for the next relapse and feeling helpless and powerless to stop it. Rebif has been my safety blanket for 4 years and now I don’t have it. I know it will stay in my system for a little while but I don’t know how long.
I want to stay in bed and sulk and suck my thumb until I know when I can start my new treatment .
I know that’s irrational but there are times when rational thought has nothing to do with it!!
Tracy my ms nurse carries spare injections for this sort of reason, could u ask if they have any. When I stopped one dmd I gave them to her as spares. Xx
I had a month between stopping Rebif and starting Gilenya and nothing happened. I know everyone’s different but this might give you a bit of cause for optimism. I looked on it as a welcome break from injecting and the flu symptoms that came with it.
Easy to say don’t worry but try not to. I’m sure you’ll be fine. Post an update when you start Gilenya and let us know how you get on
My ‘local’ nurse is about 20 miles away and it takes her several days to answer a call and at least a week to come out to me as it’s a bit of a trek for her. I do go to my local MSS branch and I’m not aware of anyone else in the area that has been on Rebif. Most of them have been diagnosed for some years and have never been offered DMDs so I feel like I can’t even moan about it there as I’ve been given the Holy Grail!!
I got excited yesterday as I had 2 letters from the hospital.
Ripped them open in anticipation but … no need for excitement - just the neuro catching up with his letters on his return from holiday. One was a copy of his report to my GP following my MOT in August and his recommendation to switch DMDs. One was to say my ECG wasn’t normal and has been referred to cardiologist.
My partner is in a situation after 2 mild relapses earlier this year, She has been on avonex, once a week. With the new mri results showing legions in the spinal column the neuro has offered either fingolimod or tysabri. So pill or infusion once a month… I’ve read the possible side effects of tysabri… brain disease of some sort… 1 in 1000 or so, no cases in the UK… yet fingolimod hasnt been out that long either even though its passed the trials nearly 2 years back. I’m not sure of the side effects other than possible heart rate changes :\ this is all so crappy for her. Her 2 relapses were VERY mild yet based on this the neuro wants her on different meds. I#m only presuming because theres been no changes in the brain MRI scans since 2011 (GOOD) yet active legions in her spinal area… this effecting foggy hands etc… nothing major.
X
Any help or advice or experience… all greatly appreciated.
My partner is in a situation after 2 mild relapses earlier this year, She has been on avonex, once a week. With the new mri results showing legions in the spinal column the neuro has offered either fingolimod or tysabri. So pill or infusion once a month… I’ve read the possible side effects of tysabri… brain disease of some sort… 1 in 1000 or so, no cases in the UK… yet fingolimod hasnt been out that long either even though its passed the trials nearly 2 years back. I’m not sure of the side effects other than possible heart rate changes :\ this is all so crappy for her. Her 2 relapses were VERY mild yet based on this the neuro wants her on different meds. I#m only presuming because theres been no changes in the brain MRI scans since 2011 (GOOD) yet active legions in her spinal area… this effecting foggy hands etc… nothing major.
X
Any help or advice or experience… all greatly appreciated.
You can read about all the possible side effects by looking on this website. Look in the What is MS? section, then Treatments and Therapies and then Disease Modifying Drugs - Licensed drugs. There are separate pages for Gilenya (fingolimod) and Tysabri. This should help you to understand her choices.
There is another thread on here titled ‘Panicking’ which is about the risks involved with Tysabri and several Tysabri patients have given their stories That may help you as well. I believe the risk of PML (the brain disease you refer to) is only a possibility if you test positive for the JC virus. They should test your gf before you starts on Tysabri if she opts for that.
Although your gf doesn’t have major symptoms at the moment, her neuro is obviously concerned about the lesions showing on the MRI and this is why he wants to treat her with a different drug.
I haven’t had another MRI but as I’ve had 2 relapses affecting my legs I am quite keen to follow my neuro’s advice. However, my neuro didn’t feel that my MS is active enough to consider Tysabri just yet. I’m glad of that as it’s not a decision I would have wanted to make at this point. Obviously if I continue to relapse I may have to make that choice at some point.
It’s odd how neuro’s differ in their approach as I was thinking that some would have left me on Rebif after a couple of relapses and waited to see what else happens. Your gf’s neuro seems to be even more proactive than mine.
Hi al, thought I just shuld chek in and tell you that yet haven´t I had any problems with the gilenya more than the first cupel of days when I got an upset stumic, but thats better, and helps to eat a good and big breakfast before. I fell more energethic but “only” for 5-8 hours of work that needs consentration, after that am I reeeealy tired, not sleep tired just, I dont know tired, drained. My realpse has disapered, I had speling feets al day long at the time when I started gilenya, but if its thanks to gilenya or just that it disaperad, I dont know…
I don’t want to seem like a nag and be ringing the hospital all the time. I was supposed to be nurse’s top priority when my neuro returned from holiday on Friday but he probably had lots of priorities by then.
Tracey, I’m sure you don’t have chest hair but if you do, shave it off before you go into hospital 
