@Phillip

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Phillip

Best Treatment for Relapsing Remitting

I am a 25 year old man from Ireland. I was diagnosed with Relapsing Remitting MS in September 2015. I have been six treatments to choose from 1) Tecfidera 2) Plegridy 3) Avonex 4) Rebif 5)Copaxone 6) Betaferon. If anybody is on any of these and has any advice or recommendations I would be delighted to hear from you :)

Stumbler

@Stumbler

@phillip , the treatments that you have been offered are all "first-line" treatments. Each f the treatments involved a different routine, be it taking a regular tablet or injecting yourself at various intervals from daily upwards. So, you will need to integrate this new discipline into your life. Have a read of this as an introduction to these treatments:- http://www.mstrust.org.uk/shop/product.jsp?prodid=442 There's some more detail here :- http://www.mstrust.org.uk/shop/product.jsp?prodid=90 And there's even a webcast to watch. So, do a bit of homework and see which suits you best. :wink:

Vicky2826

@Vicky2826

Hi @phillip I started rebif in May this year but I am going to change tecfidera in a couple of weeks. Found it a hard decision in the first place but just don't like injecting 3 times a week, the injection sites are sore and the flu like symptoms knocking me about. Just take your time go through all the symptoms and go from there everyone is different might not effect you that way. Don't rush you decision take care Vicky X x

Smackie25

@Smackie25

Betaferon was my first line of treatment, I didn't like the auto injector, it was big and spring loaded, I manually injected, it was still sore, had no side effects but injections were every 2nd night!

Smackie25

@Smackie25

I'm in Ireland also Phillip :)

Phillip

@Phillip

I'm considering going on Tecfidera too. Hopefully I won't get the bad side effects. How do you find Betaferon health wise Sinead? My Aunt has been on it for years. She's in her late 50's and is doing very well on it. Why did you decide to go for Betaferon? I'm actually really interested in it too because my Aunt has done so well on it. Then again I suppose she could have done this well on any treatment.

Smackie25

@Smackie25

I'm actually not on it anymore, I was on it for two years with no problems but had a relapse last August so neurologist decided to change it! I don't think I was really given a choice but I was happy enough while on it, injected at night so any flu symptoms possible in the first month would be slept off!

Walkintothesun

@Walkintothesun

I was also diagnosed this month just last week. Maybe it was easier for me to make being female as I was adviced some can interact with the pill and there was another pill they offered that would have impacted fertility. I couldn't personally inject myself, I'm fine with other people doing it but I can hardly hold a pen with out shaking...I couldn't picture trying to inject! I was also offered a referral to another hospital out of my county to try Lemtrada, I'm not sure if I will be eligible but worth a try. Basically what I'm trying to say is Im sure they would try and point you to a drug that would benefit you the most... They've given you options read up on them the MS trust website and make a choice that suits you, do a pros and cons list if you have to. Make sure it fits your lifestyle not anyone else's :) good luck with it!

Walkintothesun

@Walkintothesun

Also... I wrote two very non bias pros and cons lists in brief on tecfidera and Lemtrada (already knowing my choice) and asked my close friends and family to pick what they have in my shoes and what they thought would suit me. They all picked the one I wanted not that it would have swayed me but it made them come up with new pros and cons I hadn't even though of and now I feel confident and supported in my choice! :)

Phillip

@Phillip

Do you mind if I ask what treatment you're on now Sinead? That's a good idea taking it at night :) I'm not sure if my neurologist didn't offer me Lemtrada because of funding or because she thinks the others would be better. At the moment I think it's because of funding. At the moment I think I'm between Lemtrada (if I am allowed to take it), Tecfidera and Betaferon. I like the idea of just getting it over an done with for the year if I took Lemtrada.

Walkintothesun

@Walkintothesun

Morning @phillip Lemtrada is more of a 5 year commitment as every month for 4 years after last treatment (and after first lot) you have a blood test and urine yest, it is long commitment but once month for 5 years (unless relapse happens) or twice a day for life is kinda a no brainer for me. Short term pain long term gain and all that. :)

Smackie25

@Smackie25

I'm on Gilenya now Phillip, one tablet a day it's pretty handy :)

Phillip

@Phillip

Yeah I like the sound of Lemtrada. It's strange that your neurologist is recommending it as a first treatment but my neurologist didn't. Gilenya sound good too. Get to avoid injections at least.

fily55

@fily55

Hi @phillip, I know this is a bit late but just wanted to get in on this. I was in your shoes earlier this year, very hard to pick a medication. I went for Rebif in the end. I know there are oral tablets which are much more ideal to take than injections. Reason I went for Rebif, is simply because oral tablets don't have enough evidence of long term side effects. I could be completely wrong here, if anyone wants to correct please do because I would love to stop taking injections. I also am from Ireland.

r-jay

@r-jay

I have been advised to start taking gilenia,I have been taking rebif for over two years now,does anyone take gilenya,??, R

fily55

@fily55

If you don't mind me asking, who advised you to take gilenya and why?

Phillip

@Phillip

Hi @fily55, Did you get the same six choices as me? I still haven't made my decision. I was thinking about going for tecfidera for as I wouldn't have to inject. But like you. I'm a bit worried about the side effects. I think I might go for betaferon now. My aunt is on it and has no side effects from it. I found research saying it actually improves the immune while lots of other ms treatments weaken the immune system. I could be wrong so please correct me if I am wrong. How do you find rebif? Why did you go for it over the other injections?

calNFFC

@calNFFC

Hi, I've taken rebif now for the last 3 years. I pretty much hate doing it and just the thought of ive got to inject tonight does get me down sometimes. Since being on rebif ive only had 1 major relapse so for me the drug is working really well so long may it continue.

calNFFC

@calNFFC

Here is a link to a video I made about rebif: https://m.youtube.com/watch?v=GJp8QEzcIa0

fily55

@fily55

@Phillip, The choices I got were: -Betaferon -Aubagio -Copaxone -Plegridy -Rebif I went for Rebif for a couple of reasons. - Smart Device (I'm a bit of a nerd so thought it was cool and really easy to use) - Over 20 years of clinical trials. - Was told it was the most popular by the nurse. - My gut told me too. I've had my 1-2 bad week period which everyone apparently is meant to get at some stage in the medication. Could be the very start, could be when you up the dosage or well down the line (so said the Rebif nurse). I'm okay now but any day after taking I feel like I have the aftermath of a migraine. Also I get redness around injection sites but that is but I have very sensitive skin. The device is so easy to use though, makes everything so effortless. In terms of MS, I was diagnosed with a very light form of it. Any relapse I've had weren't really inconvenient, just noticeable (blurred vision, numbness). Since I've been on Rebif I haven't had any relapse that I know of. I still get migraines though, that will never go away... Only reason I didn't look at oral medications is because there hasn't been as much clinical trials or long evidence of its effects. After doing research and looking around they do seem more effective but again, not enough evidence of its effects. @calnffc - Sorry to hear that. I've only been on it for some months now and find it quite difficult, so I can only imagine how you feel. Thanks for the video too, I was looking for something like that when I was researching medication before. Will be useful for newly diagnosed people. Would you consider coming off Rebif? Could you also speak about why you decided to go with that? Sorry about the super long post!

calNFFC

@calNFFC

Yeah thats why I made the video in the 1st place to show people just exactly how you use the rebif device and hopefully help them. I was given a choice of three DMD's cant remeber one of them but 2 were Rebif and Extavia. I just researched all about them and decided that rebif would work best for me.I would quite like to come off it and try the oral tablets out but if rebif keeps working well for me like it is and can't see me nero pescribing me a different DMD. How are you finding rebif?

fily55

@fily55

It is a bit annoying to take alright but hey, at leas its doing its job. Maybe a little annoyance isn't so bad if it is doing its job. I spoke about it in my last post, but all in and all it seems to be okay now. Injection is a little sore though but I don't know if this is normal or due to the fact that I've lost some weight. My needle depth is set to 8. Do you find the actual injection painful?

MsNYS

@MsNYS

Not sure about this but doctors here (USA) feel that if anyone in your family is taking antidepressants & they work for them take the same one as typically you will do well too. It was true for my family. I wonder if this is the same for these meds? If so it makes sense to take the one your aunt had such good results with right? I take Tecfidera with zero side effects but nothing to gauge if it is working or not. I don't have many MS symptoms & never had a relapse. I didn't want to inject & a couple other meds made your hair fall out. That may sound vain but if I am going to have a tough time here I don't need to lose my hair too. In the end it is such a personal choice because this damned disease is so different for every one. Much luck to you.

Alisonm79

@Alisonm79

hi philip :) when i was first dx'd in 2012 i was put on Rebif. didn't really get a choice tbh! the injections were fine and it was nbd incorporating them into routine. eventually tho, the injection sites started to get lymph something atrophy?! basically killing fat cells so leaving dents where i injected. this only started to happen this year and they changed me to tecfidera there in August. i've had minor skin flushing as a side effect, but that's it. they keep a very close eye on you for the first year when you're on Tecfidera, blood tests every 3 mnths and you register on a support service as well who will check on your progress on the medication via phone. touch wood, i've never had a relapse and hope things stay that way!! tecfidera relapse rate is lower than with rebif and the nurse in the Mater was confident it would be better for me. take your time and consider ALL your options and very best of luck with it mate!

Phillip

@Phillip

Thanks for all your advice. It's great to hear everyone's personal stories :) @fily55 Just out of interest, what do you mean when you say you were diagnosed with a very light form of ms? Do you know if you have many lesions on your brain? My neurologist said I have a handful. Sorry for asking, I'm just very interested as I'm trying to find out as much about ms as I can. @calnffc That's a great video. Very helpful for people trying to decide between treatments. Thanks man. @Mary Yeah that's what I was thinking. My Aunt hates it and wants to get on tablets. Her neurologist won't let her because she is doing well on it. @alisonm79 Thanks for your advice. It's great to hear about someone who can tolerate tecfidera ha

fily55

@fily55

@phillip Well the neuro said that I had a mild case. The MRI had a handful of legions too, (I've had two in the space of 6 months, not much difference in the two). Neuro also said and I quote 'MRI isn't normal but it isn't abnormal'. I haven't had any severe attacks either so I guess that's why he said mild. No worries, ask all the questions you want :)

Pudding11

@Pudding11

Hi everyone. I am also from Ireland. Diagnosed 2.5 years ago but very mild symptoms (tingles/pins &needles from time to time)but my neurologist was eager for me to start something. I was holding out for tablets so I started tecfidera about 3 weeks ago. The first week on the low dose was grand, just some mild flushing. 3 days into the higher dose I started to get really bad stomach cramps that woke me up at night. I tried to stick with it and take over the counter stuff to combat them but got worse and worse to the point I was getting physically sick. I had to stop them and even now over a week later I am only starting to feel well again. I now have to choose an injectable treatment as I had such a bad reaction. I am gutted as I really didnt want injections but I was unlucky with the tecfidera. Other people my neurologist had it on only got mild flushing :-( I am now choosing between rebif, betaferon and plegridy. I know people on the first two but no one on plegridy. Once every 2 weeks does sound handy but I am wary that it must be a higher dose and how that will be after what I experienced with tecfidera. Good luck to anyone else taking it and I hope you get on well! I am just a worse case scenario I think :-)

fily55

@fily55

@pudding11 There are other oral tablets I believe such as Aubagio and Gilenya. Once every 2 weeks sounds amazing but I'd imagine its stronger than other injections. I'm just guessing now. Wish you the very best of luck, would be curious to what you decide doing and how it will go.

Pudding11

@Pudding11

Thanks @fily55. Aubagio was mentioned previously but not an option now, maybe tablets just arent right for me as they are too hard on my stomach! Gilenya wasnt an option but I think they use it more as a second line treatment. To be honest I was feeling so bad last week it changed my perspective on the idea of injections. I know they wont be easy but nothing could equal how awful I felt! I would imagine the plegridy is stronger alright. Think Ill be preparing a list of questions for my MS nurse on all three :-D

fily55

@fily55

@pudding11 Makes sense. To be honest injections aren't that bad. It's a bit inconvenient but it doesn't hurt that much, something that you can cope. Side effects differ on a person then so it's really trial and error. Best of luck and yes have those questions ready!

MsNYS

@MsNYS

@pudding11 I was wondering if once I go to the higher dose of Tecfidera if the side effects would come. Really thinking of being better with my foods. Spicy or acidic foods can irritate your stomach. That sounds so bland to me as I live hot & spicy & acidic foods but I'd rather forgo having them & staying side effect free or at least slight side effects. Only time will tell. Going into a higher dose today & next week the full dose. Scary stuff.

Pudding11

@Pudding11

Best of luck Mary! You have every chance of being just fine as it really does seem to vary from one person to the next. Out of all the people my neurologist put on it, I had the worst reaction by far so you could be just fine. I was just told to make sure I ate them with a decent meal that had plenty of protein etc (so eggs/omelettes in the morning and a decent dinner in the evening) which I followed to the letter! It didnt seem to make a difference for me whether I ate bland or spicy, it just disagreed with me entirely. I hope you get on well with it!

Pudding11

@Pudding11

Thanks for the video @callnffc That is massively helpful in taking some of the fear out of that option anyway!

MelanieMann

@MelanieMann

I've been on Tecfidera since Feb 2015 and still have a flush every now and then but I think it's down to not eating enough when taking it. You can take an aspirin if this happens (I prefer not to). It lasts for about half an hour but it does advise you to eat straight after breakfast and again straight after evening meal. Most people who have been on this site talking about Tecfidera have had the flushing problem at some point and less so with stomach problems but side by side with injecting seems Tecfidera is a no brainer to me. However, I a bit peeved Lemtrada was never suggested to me. Seems it could be about funding but am trying to find out what the criteria, other than funding, would be to qualify for it. I'm numb (with pins & needles) from hip to toe, a weak arm, slight face numbing, banding and can't walk far at all on a bad day, all on left side which impairs life outside of work completely so if I could have the chance of taking Lemtrada I would as this could make this go away in time I believe, whereas all the other treatments are for future episodes only. There is a good blog by Tracy on Lemtrada I'm making my way through to arm me with info before tackling my consultant.

Phillip

@Phillip

@fily55 I had one more legion over a three month period. How was your blurred vision last for? My only relapse so far (double vision) lasted around 10 - 12 weeks. It got slightly worse and then slightly better again. It was really bad for around 3 of those weeks. The day after injecting you said you feel like you have the aftermath of a migraine. So you take it three times per week so that's three days in the week you feel like that? :( @pudding11 Sorry about your bad experience on Tecfidera. I think I'm either going to try it or betaferon or rebif as well. I feel the same as you about plegridy. It seems too good to be true. I was sort of thinking the body could cope better with smaller doses taken more often. Of the people you know on rebif and betaferon, what are they saying? @melaniemann I emailed my neurologist and asked if i could go on Lemtrada. She replied "In relation to the Lemtrada, this drug is not licensed for clinically isolated syndrome (such as yourself). It is licensed for very active MS only." I'm from Ireland, but I think people can start on it in different counteries. If Lemtrada is the best treatment, I hope we are denied it as a result of funding issus.

Stumbler

@Stumbler

@phillip , Clinically Isolated Syndrome (CIS) is a name used as there is no condition called "Singular Sclerosis". You need more than one episode to meet the multiple part of Multiple Sclerosis. Here's some details of CIS which may help :- http://support.mstrust.org.uk/file/clinically-isolated-syndrome-factsheet.pdf

Traceylou

@Traceylou

hi i was diagnosed 6 years ago and have been on numerous dmd's, first line was rebif 22mg that was then upped to Rebif 44mg, tbh i experienced mild flu like symptoms to begin with but then changed my injection time to night so i slept through the side effects, only reason i was changed was it just was not working for me as i have highly active RRMS. i also have tried other injectables and Gilenya. Taking the tablet was a nice change tbh but it did not like my liver at all lol. Personally i would look into all the options you have been offered, facebook has alot of group pages associated with each of these drugs where u can find out the side effects, risk associated etc so you can make a completely informed decision on what is right for you, as with all drugs what works for 1 person will not necessarily work for another.

MsNYS

@MsNYS

@pudding11 Thanks for your reply. I am sorry you had a bad time w/the treatment. I guess we are all at the mercy of any of it. We in the states have always thought Dr.s were god-like & that's a hard habit to break even as the generations change. I never questioned for a minute that my Dr. was right and all I needed to do was choose my meds. I never thought of saying that I wanted to think about it. Now it's a moot point seeing I am 3 weeks into tec treatment. I feel blessed to be doing well but we all know that can change on a dime. If it starts to be a nitemare for me I would stop using it & put much thought into my next treatment. My only additional advise regarding tecfidera is drink a lot of water each day. I read that I should do this & it make sense to me. Peace & love to all with MS. xx

Irish88

@Irish88

Hi @phillip and all, Been on tecfideda for just over a year. Some minor side effects at the start like a few headaches and runny nose (I've been very lucky) but absolutely none now and no relapses thank God.I went with it because the research was positive and I had my annual mri there in August and there are no new lesions. Hard to know if it's working or not but so far so good! Worst part of it is paying for it every month but health is a priority so I get over it! hopefully will get it on long term illness scheme soon. I'm from Ireland too and diagnosed 18 months ago.

jennyn

@jennyn

Hi, This http://sdm.rightcare.nhs.uk/pda/multiple-sclerosis/ is a decision making tool from the NHS to help people decide on the right medication for them - I don't think anyone else posted it, but apologies if I'm repeating what others have said. I also follow a lifestyle programme which I've found is really helping me - see www.overcomingms.org - which advocates healthy eating, exercise, mindfulness and vitamin D, and has a lot of people saying it's working for them - me included! Hope that helps - best of luck and be well, Jenny

Phillip

@Phillip

@Stumbler thanks for that. I didn't realise that. I've had two MRI's the second one showed an extra lesion. I wonder does that count. @traceylou thanks. That's a good idea. Suppose there's no way of knowing what one would work best for me. @Irish88 glad to hear you're doing so well. I though tecfidera was free in Ireland? Hope you don't mind me asking. But how was your first relapse? @jennyn thank you. That's a great help. Always good to look into this stuff. I am also trying to find out more about ms and diet and exercise. Thanks :)

Stumbler

@Stumbler

@phillip , on the basis that Multiple Sclerosis actually means Multiple Scarring, I think that two lesions would equal multiple. Well, that's my view. :wink:

Phillip

@Phillip

@stumbler yeah I was thinking that. I suppose the important thing is being diagnosed so I can start treatment :)

Stumbler

@Stumbler

@phillip, the medical industry is now agreeing that early treatment gives a better chance of a good outcome. But, do your homework about all the options, so that you can have a knowledgeable discussion with your Neuro. As for Travel Insurance, most companies will cover you. You have to declare the condition and they might charge you a bit more. You could also look at this option :- https://www.mssociety.org.uk/ms-support/practical-and-financial-help/insurance/ms-insurance-services/travel-insurance

Irish88

@Irish88

@phillip think it's free if you have a medical card, though it should be covered by the long term illness scheme and I've applied for that. My first one was a few years ago and I wasn't diagnosed then as it was thought I had a bad ear infection. But my last one where i was diagnosed wasn't too bad, mainly my balance, is affected, have bad vertigo and I have some sensory loss on one side of my body. But I didn't know what was happening, or that it was MS. I actually thought it was a boot camp injury so I carried on working etc. Went to the GP about the vertigo and thats when the investigations for MS started.

Ahmed

@Ahmed

Building on what Jenny said, Ms trust recently developed a new comparative guide into different treatments. I would advice the newly diagnosed to have a look at it. It covers all the basic details into each drug https://www.mstrust.org.uk/understanding-ms/ms-symptoms-and-treatments/ms-decisions/decision-aid

Phillip

@Phillip

Thanks everyone :) I've decided to go for rebif or betaferon. I'm ruling out tecfidera because of the risk of PML. I'm going to start a new thread to ask for peoples experiences of the two

cameron

@cameron

I chose Copaxone because of its lack of side effects and also because I thought I'd remember to do an injection daily rather than have to remember it on alternate days. It worked for me for 12 years: in that time I only had three very minor relapses, one of them being so minor they wouldn't even consider giving me steroids.

Pudding11

@Pudding11

Sorry for the late reply @phillip but glad you have narrowed it down to two options anyway! I am much the same myself though I will ask my MS nurse more about plegridy just to have the info. I have two friends on rebif and one on betaferon. The two on rebif have been on it a number of years and gotten on very well with it. There were flu like symptoms at the start but they lasted about 6 weeks and were not severe (definitely no physical sickness with it for them). They do reappear from time to time but very mild as they take two panadol before every injection on the advice of the nurse to combat it. They also do the injection before going to bed so they sleep through anything that might happen. They said the injector is easy to use and they get great support from the pharmaceutical nurse. The other friend is on betaferon for about a year now as she was diagnosed last year. She had no initial side effects but does get the flu like symptoms now from time to time and also follows the advice to take panadol. She also has a rare side effect where she wakes up at 2am the night she does the injections and cant go back to sleep but she has gotten used to it! She also said its easy to use though there is some mixing of a powder and liquid involved. The nurse has also been a great support for her so it was all very easy to get used to. The girls that chose rebif did so as its the same 3 days each week and easy to remember though it does have to be refrigerated. I did read though it can be kept at room temp for up to 14 days if travelling which is handy. The girl who chose betaferon did so because it didnt have to be refrigerated. It is every second day which is more difficult but the injector actually beeps to remind you if you havent taken it. Im on the fence myself now as both have pros and cons but I am leaning slightly towards rebif because of the same days each week are easier to remember I think, and there is no requirement to mix anything though Im sure Id get used to it! To be honest it doesnt sounds like theres much between them! Good luck choosing anyway!!

vdubssy

@vdubssy

Hi @Pillip, I'm a 26 year old from Toronto and was diagnosed with relapse and remitting MS 5 years ago, at the age of 21. I started treatments on Copaxone. At the time there were only injections available. I took Copaxone for 2 years and I noticed two major things right off the bat: 1. Copaxone was making me feel more lethargic, ironically 2. The Copaxone was making me loose muscle mass in the areas I was injecting. As you can imagine, I really disliked the medication as it also hurt a lot! One day, out of nowhere, a very interesting twitter account started following me called MS Diet for Women. I swear to this day that this was not a coincidence. I thank God + Universe every day for this one tiny occurrence. This changed my life :) :) After reading the personal statement by the founder of MS Diet for Women, I related to her very much. She lives in England and could never afford treatment, so she took the alternative root (alternative medicine and nutrition). After following this diet and being inspired by her lifestyle, I went from being exhausted and having chronic pain, to being healthy, energetic and positive. Everyone thought I was crazy for quitting Copaxone and delving into natural treatments, but over time I proved EVERYONE wrong, including my doctor who is shocked by how healthy and strong I am. :) I really hope you give the website a chance. You have nothing to loose. And don't let the name fool you, it's a lifestyle for both genders. I did have to give up gluten and dairy, but I told myself it was worth it. Did I want to eat gluten but suffer with chronic fatigue and pain? Not at all. Plus now I just eat gluten free products. Over the past 3 years, I have cheated on my diet (im only human), but thankfully it hasn't affected me because I don't cheat often enough. Besides the nutrition plan, I also do yoga, breathing exercises and meditation, which has helped me calm my nerves and control any fatigue that may creep up. I also practice positive thinking, which is a major factor in my health. So I guess what I'm saying is, your symptoms are totally in your control :) and there are a lot of amazing alternative resources that I highly suggest you check out. I wish you the best of luck with your journey and would love to hear about the treatments you chose in the near future. Remember, MS is a blessing in disguise. It will only teach you to be healthier and happier :)

TracyD

@TracyD

@Phillip I rejected all of those treatments when I was diagnosed last year. My RRMS was so aggressive I was relapsing every month and it was targeting my sight and my legs. I researched each treatment and then found a damn good reason from my medical history / employment situation and explained why none were suitable for me and then asked for Lemtrada and made sure I could put the same level of explanation as to why it was the only suitable treatment for me as I I could for rejecting the others. The following is my opinion - it's not a medical surety - but in my case it's what's happened Lemtrada doesn't cure MS but it is the ONLY one which stops MS for a time and gives your body a chance to heal. The sooner after diagnosis you have it the less damage there is to heal and the more chance you have of normality. I will be 20 weeks post treatment on Friday - These are the improvements I have had since treatment - I was diagnosed late last year. - All the sensation loss has gone (apart from my thumb and first 2 fingers of my left hand) - foot drop has gone, - collapsing leg has gone - Bathroom urgency has gone - Optic Neuritis has gone - Cog fog has gone (with the help of Oxygen Therapy at the MS Therapy Centre) - Balance has returned - fatigue is gone - Strength in upper and lower body has returned - Stamina is coming back I may have MS still - but MS does not have me any more My advice is don't mess around with weaker less effective drugs 'because it's not that bad yet' because if you let it get 'that bad' you don't know how much damage you're body might be able to work on at a later date xx

insomniacoffeelover

@insomniacoffeelover

Hi @Pillip! i'm writing from ireland also :) i used to take rebif but have switched to Tecfidera. it seems to be much better than the Rebif. the only side effect i have is skin redness that can last about an hour but that's it. when i was on the rebif, i had to inject 3 times a week and i'm very thin so I was just collecting bruises and running out of fleshy bits to inject into so I switched to the tecfidera. i take it twice a day, everyday. i actually had a scan 2 months after being on the tecfidera for almost a year and the scan showed that 2 of the lesions had actually decreased in size a bit (luckily I also had no new white spots) but this could just be coincidental as MS lesions swell and shrink. definitely think about the tecfidera as injecting yourself can be harder than you think, psychologically anyway. i once spent 4 hours with the injector to my leg and couldn't press the button and then spent the same amount of time beating myself up about it afterwards! hope that helps :)

fily55

@fily55

@phillip - Apologies for the delay. My blurred vision happened a couple of years but I remember it being there for a couple of months. It seemed to be very bad after small activity like walking, even if for a little bit. I remember playing soccer and being in goal and thinking 'This is a really bad idea! But if I get hit in the face, it might fix my vision!'. Honestly it's been up and down. For instance, today I was too unwell for work. Most days its fine, my body is getting used to it more. The aftermath of the migraine is not the worst, it fades away pretty fast. Every person will react to the medication differently so you might never get any of this. Best of luck!

Phillip

@Phillip

Thanks @pudding11. Let me know what your ms nurse says :) I think I'm leaning more towards betaferon than rebif, simlply because you don't have to store it in a fridge. The rebif device seems better and it's a lot handier taking it the same day each week. But if I ever went away for a holiday or a few days or anything, i'd have to make sure there would be a fridge in the room and I think it would just be easier not to have to have to worry about that. Although if you can keep it out of the fridge for 14 days, it wouldn't be too bad. Can any rebif users confirm this? :) @vdubssy muscle loss would not be something which I would like at all. We get enough of that when we take steriods. Diet is something that I have been looking into so thanks for that. I'll def look it up :) I was thinking about giving trying to cut out gluten and dairy so I might give it a trial go to see how it goes :) It's great that you are doing so well. @tracyd I asked my neurologist for Lemtrada but she wouldn't let me take it. I also read a lot of good things about it. All us ms patients should push together to make it more available early on to help prevent damage and give us the best possible quality of life :) I'm glad you got it and you're doing so well :) @insomniacoffeelover were you not afraid of the risk of PML? It's the only thing putting me off at the minute. I'm glad it's working so well for you :) @fily55 haha. Yeah my double vision got worse with exercise too. My neurologist said it was because when the body got hot the receptors didn't work as well. Hopefully the side effects are only temporary :)

insomniacoffeelover

@insomniacoffeelover

Hi Philip, I was worried about that but the chances of it are so slim that there will ALWAYS be potential side effects with medication that may or may not happen. You just need to get a blood test every three months when you're on tecfidera to make sure all's ok :). I was on the Rebif but I found the side effects on that worse. But I kept mine cool in a pantry so If you don't have a fridge then don't worry, as long is it's kept out of the sun and warmth really :)

Phillip

@Phillip

@insomniacoffeelover I am starting to think about tecfidera again now haha. Am I right in thinking that the blood tests will tell if we are at risk of pml and if tecfidera is stopped once our white blood count goes down, we should be ok?

insomniacoffeelover

@insomniacoffeelover

Oh good well, I can only speak from personal experience between Rebif and tecfidera but the Rebif had more side effects for me definitely. We get blood tests every three months to measure the white blood cells. I'm not a nurse it anything but I try educate myself as much as possible and I don't think the blood tests tell if you're more likely to develop PMl but they do measure your ability to fight it if you do develop it. We need white blood cells to fight infections etc and if our white blood cell count is low then bacterias etc have more prevalence in our body and will make it harder to fight infections. So I think the blood test / cell count is to measure if our little fighters are too low in numbers. There was a person on tecfidera who died last year but they had chronic low white blood cells from tecfidera which may have been a contributing factor so white blood cells are monitored carefully if that makes sense?

TracyD

@TracyD

@Phillip Unless your Neurologist is able to give a proper medical reason as to why you can't have it challenge them ..... Is you Neurologist an MS specialist or a general 'head person' type neurologist ? If they're not an MS specialist, research the neurologists in your area and request to be transferred to an MS specialist one. They don't get to deny you treatment - it's their job to refer you for it after a full and reasoned discussion about why the others are not suitable and this one is. Nobody should every wait to be offered it, ask and be prepared to discuss the whys / side effects / treatment methods / aftercare etc.

fily55

@fily55

Just FYI, this is from the rebif site. Rebif should be stored refrigerated between 36°F and 46°F (2°C and 8°C). Do not freeze. You should check the temperature of the refrigerator you are using while traveling to avoid unintentionally freezing Rebif. For small hotel refrigerators, store Rebif away from the unit's cooling element and small freezer compartment. If you are traveling and a refrigerator is not available, Rebif may be stored between 36°F and 77°F (2°C and 25°C) for up to 30 days and away from heat and light. Feel free to discuss all your options and be confident with your choice. If it doesn't agree with you, you can always change. It's just good to go into it confident, it'll make it easier.

Pudding11

@Pudding11

Thanks @fily55 thats what I saw also in the booklet. Im definitely leaning more towards that one I have to say. The same days each week just sounds more manageable and at least it can be kept out of the fridge for a period if needed. Best of luck with whatever your decision is anyway @phillip . Once you are comfortable with it thats all that matters. Hopefully whichever one you go with will have only minor side effects if any! Its impossible to be sure how any person will react to them.

Traceylou

@Traceylou

@Philip the blood tests you go through before and during any treatment where there is a risk of PML is to test if u are JC+ which increases the risk of developing PML, there are plenty of people that are JC+ and continue on treatments that present a risk but it's down to each individual. https://www.mstrust.org.uk/a-z/progressive-multifocal-leukoencephalopathy-pml this link may give you some further information, i can't remember if i mentioned previously that with any of the injectables i have previously taken including rebif i moved my injection time to before bed, so i moved it 1 hour from original injection time (as here u inject 1st time with your MS nurse) each time i injected until i got to a time that was around bed time and found i then slept through any symptoms. i travelled numerous times with my meds and as long as you have a letter from nurse or doctor (travel letter) all is fine. you receive ice packs and carry bags with each of the drugs for transport. I used to inject Mon, Wed and Fri with rebif as i then had the weekend off lol

fily55

@fily55

Yep, I do Sunday, Tuesday, Thursday. Another thing about 3 times a week is that you can change it up. For instance say you are on Mon, Wed, Fri and are going away that Friday for the weekend. You don't want to bring the rebif with you or take injections so you can change it up the week before. So do Mon- Wed- Fri- Sun- Tue- Thur. Now you have the weekend all free for your travels :). You can get back to your normal time again when you come back. Just keep two days between injections. Coming back then do Sun- Tues- Thur- Sat- Mon- Wed- Fri. Hope I don't confuse people!

Pudding11

@Pudding11

Makes perfect sense @fily55. I was actually thinking sun, tues, thurs myself as then I dont have to worry about it friday or saturday and can enjoy the weekend! I would do it before bed sunday night then. Handy it can be adjusted a bit as long as theres 48 hours between the doses.

Paula-Sue1983

@Paula-Sue1983

When mine was being super aggressive they gave me mitoxantrone "to grab a hold of it" then rebif to maintain it but about 2 years into the rebif they changed it to gilenya and I haven't had more relapses. Just other annoyances.

Paula-Sue1983

@Paula-Sue1983

I would have stayed on rebif but I'm not able to handle the needles. I welt very badly.

MSTony

@MSTony

I’m on a gluten free diet as I also have Celiac , the MS greatly improved.

doubleo7HUD

@doubleo7HUD

I’d ditch the Man U shirt mate and get thee Sen a Huddersfield Town one you’ll feel loads better ;)