@Scramblelina

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Scramblelina

Don't want to start on disease modifying treatments

I'm new to this site, was diagnosed in 2006 with relapsing remitting after optic neuritis which was a complete shock. For several years I had very few problems except for being a little off-balance and struggling with words occasionally. This year it feels like it's all caught up with me, seem to have had nothing but problems and I'm really fed up with it all. My consultant's recommendation is that I should start on disease modifying treatments, I'm not keen on this for lots of reasons. I've never taken an aspirin in the past unless I had no choice and the thought of starting drugs that I'll probably be on for the rest of my life makes me incredibly depressed. I suppose I'm asking what other people in this situation have done, if I choose not to take the drugs then what alternatives are there and would not taking the drugs profoundly accelerate the symptoms? All my relapses so far have been cognitive and whilst I hate this I'm inclined to avoid the drugs unless I being to have motor problems, my consultants view is that if I leave it until then the damage may be irreparable... Anyone got any advice?

Pulpculture

@Pulpculture

Get on the DMD's ASAP. My consultant gets you on them very early.

lightningduck

@lightningduck

Agreed with <a href='https://shift.ms/community/people/Pulpculture/' rel='nofollow'>@Pulpculture</a> The purpose behind DMD's is not to make you feel better now, it's not to make the symptoms you have now better. It's to slow the rate at which you get worse; to slow the rate at which you have the next relapse that will take something else from your life

Lillylilly

@Lillylilly

I agree with the lads- DMD are the way to go! I got diagnosed very suddenly, and within two weeks had so many symptoms that I was put on DMD. Injecting is unpleasant, but at least I know I'm doing my bit for slowing down the progression of this disease. As your doc says, if you wait for motor issues to happen (if they ever do), you may be suffering with such bad cognitive issues that there will be no going back. I know I would prefer to inject myself once a day than to have trouble stringing a sentence together for the rest of my life. MS is progressive- it will only get worse!

Stumbler

@Stumbler

I have a different take on this. Firstly, MS "CAN" be progressive. It's not a definite - everyone is different. Secondly, you have to be comfortable in what you are doing. I refused DMDs at first as I didn't want to have to adopt the disciplined regime. However, it was like taking ownership of my first walking stick, it seemed the right thing to do at the time. That's when I started DMDs - when it felt right to me. So, do your research, get the facts and weigh up what you want to do. Nobody can tell you what tomorrow will bring and you'll never know whether your decisions now will have adversely affected the future. It's your call.

pinkie

@pinkie

I have been worrying about this too; like <a href='https://shift.ms/community/people/scramblelina/' rel='nofollow'>@Scramblelina</a> I had optic neuritis as my entry point to MS, and have always been somewhat unbalanced. I have been on Avonex for 6 months now, and I HATE taking my DMD and find it difficult to see why I'm putting up with the side effects when I'm not that ill. But the way I see it I'm now in the loop, so when other treatments become available I'll be on the list. Degradation has been subtle, but it's definitely happening. And as I'm in the process already, I'll be told about any new treatments that will repair the damage. So I would recommend going on a DMD, but do your research so you know what to expect. And, of course: Good Luck! Julia

sag70

@sag70

Really hard to comprehend what's right and what's not. I got put straight on Tysabri so can't comment on anything else. Think the shock of diagnosis and feeling your body fall apart makes you open to "whatever the doc throws at you". It is frustrating as you wait to feel better and it doesn't happen. For me, I feel it's failing as I worsen but on the other hand gives a little hope that it is doing something to slow down the progression.

lorag

@lorag

I have been on DMDs on and off cause I felt like shit being on them. My MS has progressed and I'm scared now. I prefer natural remedies but expensive and didn't seem to be working. I sometimes wish I didn't feel like shit taken the meds cause Just maybe I wouldn't be where I am now. Its a hard decission but you will know yourself when its right.

Pulpculture

@Pulpculture

My consultant is proactive in getting people onto DMD's as early as he can. As mentioned above, get on them early and you have the chance of slowing any progression. Keeping this thread in balance, injecting for me takes 2 mins of my life (every other day), doesn't hurt at all, and isn't inconvenient in any way shape or form to me. I have no adverse reactions (other than once / twice a year when i hit a wrong spot and get the shivers for an hour - no big deal as I inject just before bed.) I am conscious some people making DMD decisions find the practicalities of DMD treatment daunting or inconvenient. It takes me the same amount of time to clean my teeth. Minor drag is ensuring you have a fridge in your hotel room when staying in hot countries and getting a letter from your GP to carry needles on a plane.

pinkie

@pinkie

Interesting, @popculture: what are you on? I would love to have no side effects ... I have Avonex once a week, and that huge dose of beta-interferon give me flu, aching limbs and, more recently, depression / malaise. I am hanging out for the next stage of meds - particularly Aubagio - it's easier if you are already in the program. Looking forward to just having a little pill!

Pulpculture

@Pulpculture

I'm on Betaferon (inject every other day) Small needle into the stomach legs etc. I was on Copaxone (daily) but it wasn't working for me.

Aesom

@Aesom

The best thing is to get on them when you are offered them. Prevent damage being done and you could save a lot of problems later on. You wouldn't be offered them if they didn't think they would be of any benefit. I was taking Copaxone but this one didn't quite work for me. Just started (about 3 months ago) on Avonex - once a week in to leg with auto-injector and it's sssooo easy! No pain and all I got for a few weeks at the begninng was some aches and a sore head the next day but even that's gone now. Unfortunately I have just had another relapse but i just need time for the medication to start it's magic! I was so scared to go on anything but you will be amazed at how quickly you get used to it and it's no bother... Best of luck with your choice x

travis15

@travis15

I'm on rebif, my neuro put me on them as soon as i was diagnosed I hated the auto-injector learned how to do manual injections, now i feel awful no energy and sore all the time and i cant sleep. I dont think they are all that like everyone else. I'm looking into LDN google it.

beccygreeneyes

@beccygreeneyes

obviously it is your decision. I was diagnosed in May and my consultant wanted me on copaxone but i said no. I am on LDN- have u ever tried it? Been on it since july and no relapse (touch wood) We made a deal that if i relapse again before next may then i shud be on a dmd but he said until then u can stay on ldn! miracle!!! My relapse in may was pretty horrific. I had optic neuritis and lost 80% of my sight in my left eye so think that is why he was a bit pushy to go on copaxone. x

shireen

@shireen

I too had alot of difficulty making this decision. I also had alot of apprehension about starting DMDs. I decided to go on LDN and feel that it has benefited me. I will continue to monitor my MRI's and symptoms and make decisions as I go along but LDN has worked for me so far.

Steadmeister

@Steadmeister

Was going to reply to this yesterday but as I was in to see the MS team today thought I would wait. I too was diagnosed in 2006 and been relapse free until two months ago when admitted with major relapse which wiped me out out waist down. Like you I have been really anti taking any DMDs and totally respect those doing it, I'm such a scaredy cat and have a real thing about needles (specially after a couple of weeks in hospital). Anyway now the team are advising tysabri and I think that 'advice' reads they really think I should get on and take it. I did the MS Decisions questionnaire from the website and that really helped me. I am walking again now - of a fashion - and just feel that I want all the help I can get. Spending nights in hospital staring at the ceiling thinking "sh1t!" I haven't fully decided as I now need to wait for blood tests back but it might be an early Christmas present to myself! Good luck with whatever you decide, scary isn't it but we can read here we are not alone, and that is something.

cameron

@cameron

It depends on who you trust. The consultant who told me DEFINITIVELY that it was the right course to take was Prof G (he of the research blog here). He does nothing but MS, is one of the country's (and probably the world's) top MS researcher and has seen patients at every stage and with every variant of MS. Of course I was going to believe him! Scarily, if I had still been under the fitst neuro team I was assigned to, who were a lot less competent, I wonder if I would have been so sure......? The evidence is all out there if you look for it. Not perfect drugs by any means but the best there is at the moment and the earlier you go on them, the better the outcome. If you haven't already looked at the stats on the research blog here, do a trawl. The actual injecting souinds worse than it is. You get loads of help and once you're on DMDs, you get a lot more attention from the neuros because they have to analyse your response to them (the NHS requires this info). This extra attention is helpful in itself. Relapses are ghastly - do ANYTHING to avoid them.

melissag

@melissag

<a href='https://shift.ms/community/people/Pulpculture/' rel='nofollow'>@Pulpculture</a> just curious as to what you meant by copaxone wasnt working for you? I just started today, but not really sure how to tell if its for me or not..

Gav

@Gav

@melissa.g not every dmd works ideally for everyone else, I know I was on Copaxone for two years and whiles I didn't have any adverse side effects to it I did start relapsing again in the last nine months so I was 'upgraded' to Tysabri. Riskier certainly, but I've not relapsed for the 18 months I've been on it.

Mandela

@Mandela

It's really hard dealing with the diagnosis in the first place/living with the symptoms, then to make a decision on dmd's and which one to take...weighing up the pros and cons of each drug, there's a lot to take on board. I was diagnosed this year in Feb. I went in to see my neuro and he tells me I have ms and I qualify for two drugs; copaxone and tysabri. He then goes on to tell me that Tysabri is potentially fatal. I then do my research and find out about pml and the JC virus and all of that, and it scares me even more-mind you no one is forcing me to take the dmd. I then met people on tysabri for whom the drug worked miracles. I also met an MS Neurologist (my neuro is a general one)who advised me to go on tysabri. I spoke with a doctor who has ms himself and he takes ldn and swears by that and that alone.So to be honest there are conflicting views amongst the medical profession. So the best bet is to do research and continue to ask questions. I know that I too need to go on a dmd but for some reason I am reluctant to do so. My mind is not at ease with this whole drug idea. But to be honest <a href='https://shift.ms/community/people/scramblelina/' rel='nofollow'>@Scramblelina</a>, if your consultants are extremely worried, then I would say you should seriously consider taking it. It's easy to say it, but I am in the same boat as you. I am however seriously considering taking copaxone. Only you can make that decision, trust your judgement, only you know how you feel. Good luck. Peace

Pulpculture

@Pulpculture

@melissa.g Don't doubt your choice :) Copxone worked for me for a few years then I had a couple of mild relapses so they changed me to Betaferon. So far so good. Get on the Copaxone and see how you get on.

melissag

@melissag

thanks <a href='https://shift.ms/community/people/Pulpculture/' rel='nofollow'>@pulpculture</a> im on day 2! fingers crossed it helps :) <a href='https://shift.ms/community/people/scramblelina/' rel='nofollow'>@scramblelina</a> good luck in choosing a DMD, Im trying to look at as a step towards taking the power back from this disease, and making an effort to control it. dont forget that when we do have relapses there is damage left behind, so the less you have the better!

lightningduck

@lightningduck

Certain irony that you won't be sure it works until it doesn't

Stumbler

@Stumbler

As long as that iron-y doesn't cross the blood/brain barrier. :) But, seriously, it's all about positivity and if an injection gives you positivity then that's a good thing..........isn't it?

lightningduck

@lightningduck

Yo know, I think I'm really too fatalistic for this lifestyle :)