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MS in all its glory

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    #1502
    Salmotrutta
    Registered Users Posts: 99 ✭✭Salmotrutta


    kieranfitz wrote: »
    Swollen, can bend or straighten it. Left hips aching too but that might just be from limping. Perfect timing really, I've got an interview on Wednesday about getting disability.

    Without giving medical advice (you really need to see your GP) this doesn't sound like MS, more like a regular knee injury/arthritis. My knee is fecked too but it's sports related, trying to do too much with not enough training...


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    #1503
    JohnMearsheimer
    Closed Accounts Posts: 2,302 ✭✭✭JohnMearsheimer


    My diagnosis became official today when I saw my neurologist. She had held off making an official diagnosis for about a year. My last MRI scan revealed new lesions. I'm starting on Tecfidera next week. It feels strange being put on lifelong medication. I feel perfectly fine. Thankfully my MS has been really quiet since the symptoms that first brought it to my attention last year.


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    #1504
    byhookorbycrook
    Moderators, Education Moderators, Regional South East Moderators Posts: 12,481 Mod ✭✭✭✭byhookorbycrook


    Diagnosis is never fun, but at least you will be on something that wil help. Good luck with it.


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    #1505
    kilco
    Registered Users Posts: 105 ✭✭kilco


    Hi all,
    Can I ask those of you on gileyna, is it available to all with rrms or only if injections have failed? I am on rebif but injection sites are getting very sore , really starting to hate doing it. My nuero has given me info on techfidera, but I'm not happy with the amount of information available about it(the booklet had very little info compared to those I would have got when I chose injection). My gp seems to think gileyna should be available and that has been around for longer. I just want to get my facts straight before I ring my nuero to discuss. Thanks all.


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    #1506
    Blinder
    Registered Users Posts: 243 ✭✭Blinder


    Hi Kilco,
    I think Gileyna is generally given as a second line treatment but some neuros are starting it as a first line treatment.

    The relapse reduction rate for both Tecfidera and Gileyna is around 50%.

    I've being on Tecfidera since June ( Had been on Rebif, but the sides effects were really getting to me, and was like yourself, hating the injections as they hurts so much).
    You should definitely ask your neuro about Gileyna. not sure if there would be more info with that though. I think I got most of my information about Tecfidera online so didn't notice that I had less info on it than Rebif.


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    #1507
    Lollipops23
    Registered Users Posts: 5,420 ✭✭✭Lollipops23


    kilco wrote: »
    Hi all,
    Can I ask those of you on gileyna, is it available to all with rrms or only if injections have failed?

    I just started Gilenya this month- I was only diagnosed in Sept, but my neuro reckoned I had too many lesions to use 1st line treatment.

    So far, so good- I had to spend 6 hours on the ECG machine when I took my first dose, but apart from that it's been plain sailing. You have to be really mindful of taking it at the same time every day in the first few weeks, which is a pain in the backside.

    Good luck!


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    #1508
    Sunny Dayz
    Registered Users Posts: 5,308 ✭✭✭Sunny Dayz


    Hi Kilco,
    Hubbie was diagnosed last December, and recommended Gilenya. He had a meeting with neuro in March to discuss it and himself put off starting it until August (we had a crazy busy year ahead of us until then) and nuero team were ok with that. Himself wanted a bit of time off work and quiet time socially just incase when starting the treatment. It's actually fine, he has no complaints with it. Time will tell though it it's working, I'm not sure yet to be honest.


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    #1509
    kilco
    Registered Users Posts: 105 ✭✭kilco


    Thank you all for the advice ,I'll grin and bear the rebif until Christmas and then speak to nuero again as I'm due to have blood count repeated in Dec as lymphocytes were getting low and see where we stand then .


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    #1510
    byhookorbycrook
    Moderators, Education Moderators, Regional South East Moderators Posts: 12,481 Mod ✭✭✭✭byhookorbycrook


    Lollipops, I have to take the fampyra exactly 12 hours apart so I set phone reminders for myself.Usually does the trick.


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    #1511
    Lollipops23
    Registered Users Posts: 5,420 ✭✭✭Lollipops23


    byhookorbycrook wrote: »
    Lollipops, I have to take the fampyra exactly 12 hours apart so I set phone reminders for myself.Usually does the trick.

    They signed me up to some text message service that texts me each morning to tell me to take it. So far it's worked a treat!
    I think the biggest inconvenience is the fact that I took my first dose at 8am, which means I have to take it at or around the same time- including weekends! :mad::o


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    #1512
    Salmotrutta
    Registered Users Posts: 99 ✭✭Salmotrutta


    Lollipops23 wrote: »
    I just started Gilenya this month- I was only diagnosed in Sept, but my neuro reckoned I had too many lesions to use 1st line treatment.

    So far, so good- I had to spend 6 hours on the ECG machine when I took my first dose, but apart from that it's been plain sailing. You have to be really mindful of taking it at the same time every day in the first few weeks, which is a pain in the backside.

    Good luck!

    I was told this wasn't really important - I asked what if I forgot to take the tablet in the morning as I usually do, and my neuro said as long as I take it sometime that day it would be fine. More important is not to miss a day for the first month. I have often forgotten to take it, or been away and not able to take it until late at night when I got back, and never had a problem.


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    #1513
    kieranfitz
    Registered Users Posts: 592 ✭✭✭kieranfitz


    In a bit of good news, I got the letter confirming my disability allowance today. looks like I'm staying in college.


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    #1514
    cj maxx
    Registered Users Posts: 13,482 ✭✭✭✭cj maxx


    Theres a panorama (bbc 1) programme on MS and treatments on the 14th dec.

    Just seen its been resheduled .


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    #1515
    JohnMearsheimer
    Closed Accounts Posts: 2,302 ✭✭✭JohnMearsheimer


    I got on fine with my first week on Tecfidera. I took a half dose for the first week and I'm on full dosage since yesterday. All seems to be going ok. I get a bit of flushing with it but it only lasts a few minutes and then it goes away. I have to get my bloods taken again in about 3 weeks. My LTI book came through this week as well.


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    #1516
    Lollipops23
    Registered Users Posts: 5,420 ✭✭✭Lollipops23


    I just found out my vitamin D isn't covered under my LTI scheme. I thought once it was in the book, that was it? It's only €22 a pack, but that's for the rest of my days!!


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    #1517
    Sunny Dayz
    Registered Users Posts: 5,308 ✭✭✭Sunny Dayz


    Lollipops23 wrote: »
    I just found out my vitamin D isn't covered under my LTI scheme. I thought once it was in the book, that was it? It's only €22 a pack, but that's for the rest of my days!!
    Is it not? Himself was down for a check up last week, and we enquired into VitD, they said he could take it if he wanted and they said they would check his levels, took bloods and said they would hear back in a couple of months!
    If we didn't enquire, they wouldn't have said anything!

    Lollipops - try Boots chemist for VitD, they often do 3for2 on vitamins.


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    #1518
    Lollipops23
    Registered Users Posts: 5,420 ✭✭✭Lollipops23


    Sunny Dayz wrote: »
    Is it not? Himself was down for a check up last week, and we enquired into VitD, they said he could take it if he wanted and they said they would check his levels, took bloods and said they would hear back in a couple of months!
    If we didn't enquire, they wouldn't have said anything!

    Mine was prescribed alongside the Gilenya. I'm gonna ask my MS nurse during the week; I've been making sure to take it 3 times a day, as directed, but I want to find out how vital it is.


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    #1519
    Sunny Dayz
    Registered Users Posts: 5,308 ✭✭✭Sunny Dayz


    Anyone else get annoyed with the health system? Himself was diagnosed with MS last Dec. The past year/13 months have been a real learning curve for both of us. Luckily he's ok in terms of symptoms etc.
    But I feel like I don't ever know what to expect, not in terms of the illness but just in terms of the treatment and general MS life. Himself had an appointment with his neuro last week, we didn't know what it was for, presumed it was for a check up but we didn't know what it entailed.


    He then had an appointment to see an eye specialist - cos AFAIK you're eyes can be affected by MS. This appointment was made for the end of the week, not the same bloody day as his neuro appt so that was another day off work! We asked in neuro what specifically was the eye appoint about, did he need drops put in his eyes, could he drive after etc. They said they didn't know. So I took the day off and went with him incase he shouldn't drive after. Hour and half waiting to be seen, in with the person 5 mins for a quick look, no drops and away he went.


    In short I was annoyed that we had to drive half way across the country twice in one week for two 5 min appointments.
    /rant over


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    #1520
    Salmotrutta
    Registered Users Posts: 99 ✭✭Salmotrutta


    Sunny Dayz wrote: »
    Anyone else get annoyed with the health system? Himself was diagnosed with MS last Dec. The past year/13 months have been a real learning curve for both of us. Luckily he's ok in terms of symptoms etc.
    But I feel like I don't ever know what to expect, not in terms of the illness but just in terms of the treatment and general MS life. Himself had an appointment with his neuro last week, we didn't know what it was for, presumed it was for a check up but we didn't know what it entailed.


    He then had an appointment to see an eye specialist - cos AFAIK you're eyes can be affected by MS. This appointment was made for the end of the week, not the same bloody day as his neuro appt so that was another day off work! We asked in neuro what specifically was the eye appoint about, did he need drops put in his eyes, could he drive after etc. They said they didn't know. So I took the day off and went with him incase he shouldn't drive after. Hour and half waiting to be seen, in with the person 5 mins for a quick look, no drops and away he went.


    In short I was annoyed that we had to drive half way across the country twice in one week for two 5 min appointments.
    /rant over

    I think most people are the same - neuros are busy and don't spend time counselling patients on what to expect.
    Re the eye check - Gilenya can in rare circumstances cause an eye problem called macular oedema, typically in the first 3 months, so an eye check during this time is important. I'm lucky in that I have a friend whose father is an ophthalmologist - he initially referred me to my neuro when I got optic neuritis - and he has taken care of me since with regular thorough checks. He does the eye drops and full exam but I'm not sure if that's necessary to check for macular oedema. I certainly couldn't drive afterwards for a couple of hours.
    It's sh1t that the appointments weren't synchronised, but that's the health system for you... :rolleyes:


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    #1521
    Salmotrutta
    Registered Users Posts: 99 ✭✭Salmotrutta


    JohnMearsheimer wrote: »
    I got on fine with my first week on Tecfidera. I took a half dose for the first week and I'm on full dosage since yesterday. All seems to be going ok. I get a bit of flushing with it but it only lasts a few minutes and then it goes away. I have to get my bloods taken again in about 3 weeks. My LTI book came through this week as well.

    Will you keep us updated on how you get on? Tec is fairly new here and I'm sure some people will be interested in going on it at some stage.


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    #1522
    fungie
    Registered Users Posts: 688 ✭✭✭fungie


    Lollipops23 wrote: »
    I just found out my vitamin D isn't covered under my LTI scheme. I thought once it was in the book, that was it? It's only €22 a pack, but that's for the rest of my days!!

    http://www.amazon.co.uk/Healthy-Origins-Vitamin-Liquid/dp/B00PLQ6KWA/ref=sr_1_4?ie=UTF8&qid=1449489076&sr=8-4&keywords=vitamin+d+5000iu

    I get this and lasts me over 18 months


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    #1523
    cj maxx
    Registered Users Posts: 13,482 ✭✭✭✭cj maxx


    fungie wrote: »
    http://www.amazon.co.uk/Healthy-Origins-Vitamin-Liquid/dp/B00PLQ6KWA/ref=sr_1_4?ie=UTF8&qid=1449489076&sr=8-4&keywords=vitamin+d+5000iu

    I get this and lasts me over 18 months

    Also here
    https://secure.chemistdirect.co.uk/checkout/signin


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    #1524
    kilco
    Registered Users Posts: 105 ✭✭kilco


    cjmc wrote: »
    Theres a panorama (bbc 1) programme on MS and treatments on the 14th dec.

    Just seen its been resheduled .

    would be very interested to see that ,thanks


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    #1525
    cj maxx
    Registered Users Posts: 13,482 ✭✭✭✭cj maxx


    kilco wrote: »
    would be very interested to see that ,thanks

    Time is changed to 25fh january 8:30 bbc1


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    #1526
    JohnMearsheimer
    Closed Accounts Posts: 2,302 ✭✭✭JohnMearsheimer


    Salmotrutta wrote: »
    Will you keep us updated on how you get on? Tec is fairly new here and I'm sure some people will be interested in going on it at some stage.

    No problem, will do. The Tecfidera is going ok for the most part. I'm on the full dosage since Saturday (they start you off on a half dosage to get you used to it). I still get a bit of flushing but it's not too bad. Twice I have woken in the middle of the night with a burning itch in my legs. My legs rubbing off the duvet or sheets sets it off and it can be a bit uncomfortable. Staying extremely still seems to help but I always toss and turn in bed. I suppose its more of a nuisance than a problem at the moment. Nausea can be a side effect of Tecfidera but it hasn't thankfully been a problem for me.

    Tecfidera run a phone service where nurses will ring you and see how you're getting on with the medication. I have had 2 calls from them and they're calling me again next week. They said baby Asprin can help with the flushing if it's persistent. The nurses said some people on Tecfidera found taking their tablet in the middle of breakfast or dinner helped with the side effects. They recommend that Tecfidera be taken with a fatty food or a food high in protein. In the morning I take it with toast (with real butter) and a Country Nature peanut bar.


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    #1527
    byhookorbycrook
    Moderators, Education Moderators, Regional South East Moderators Posts: 12,481 Mod ✭✭✭✭byhookorbycrook


    John, I have used a Chillow since my betaferon days, well worth considering.


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    #1528
    Lollipops23
    Registered Users Posts: 5,420 ✭✭✭Lollipops23


    Getting a random tingling in the sole of my right foot over the last week, kinda like pin prickles.

    Gotta love brand new symptoms :(


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    #1529
    byhookorbycrook
    Moderators, Education Moderators, Regional South East Moderators Posts: 12,481 Mod ✭✭✭✭byhookorbycrook


    Lollipops, do you use gabapentin or similar?


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    #1530
    Lollipops23
    Registered Users Posts: 5,420 ✭✭✭Lollipops23


    No I'm on Gilenya (Fingolomid).


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    #1531
    byhookorbycrook
    Moderators, Education Moderators, Regional South East Moderators Posts: 12,481 Mod ✭✭✭✭byhookorbycrook


    Lollipops23 wrote: »
    No I'm on Gilenya (Fingolomid).

    Gillenya is a disease modifying drug. Gabapentin is for treating sensory issues like the pins and needles.


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