Last reply 6 years ago
Medication?????

Hi all a quck question. Does everyone with MS go on medication? I am now a little concerned about my first neuro appointment. What will happen????

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gav
6 years ago

No, not everyone with MS chooses to go on medication, some are very much pro meds, other anti meds and treat by diet and vitamins and then you get those that go for a combination of the two. It is very much a personal choice, and your neuro won’t expect a definate decision from you tomorrow. If you don’t mind me asking, what is it about your appointment that concerns you? I am heree if you need someone to talk to, or not, its your call 🙂


danrb80
6 years ago

Its my first neuro appt on 15th and really confused, a little worried and ready all at once. I had graves disease 5 years ago so cannot take vitamins and i remember being so ill with that it scares me this MS thing


gav
6 years ago

I think the scared part is normal human psychology, its the unknown, the ‘what if’ and its totally understandable. As far as the whole Graves thing goes, I’ve no knowledge of what having Graves is like, or what it consists of, but I do know this, Graves disease abd MS are two entirely seperate conditions. I get that its scary, but its not the same. MS can be scary, it can be frustrating, it can be difficult, but it can also be silent, unnoticable, weak and small. Don’t let the fear rule your life, you are in control, you may just need to adapt certain aspects.


danrb80
6 years ago

I will be ok i know once i know what it is im dealing with. Just worried about work and health and what to do if i cant work full time. But i will be fine in the end just after being told ive got MS feel like ive been abandoned 🙁 thank you for your time though


gav
6 years ago

You’ve not been abandoned 🙂 Unfortunatly, theres just a LOT of other patients too, the swines. Whereabouts are you anyway?


danrb80
6 years ago

Im just on the Outskirts of Chester in Broughton. Yeah i completely understand there are other people just my impatients hehe


cameron
6 years ago

The received wisdom is that the sooner you’re on drugs the greater their impact. I was told that I should get them but the neuro wasn’t sure if my Primary Care Trust would fund them! That scared me, esp. since I discovered the annual cost is around £10,000… Anyway, they did fund them and the drugs (Copaxone) have really worked. That was 9 years ago and I just wonder – given the state of the nation’s finances – if neuros will be any less keen to prescribe. A friend in another PCT area was not given the same encouragement as I was, even though her MS is pretty similar. I have a suspicious mind!


tr909
6 years ago

At what point will meds be recommended or is this something the patient needs to push for. I’ve had the diagnosis for 16 years and have been okay until very recently without intervention. My leg went numb but recovered and my hand is currently numb. Have some knee joint pain also and tiredness. Just confused about what I should be doing or asking for. Currently waiting on MRI results.
Ps. New on here and if I’ve got the etiquette wrong and should have started a new thread please let me know 🙂


rosieella
6 years ago

Hi Dan, I have chosen not to go on any medication. I have a permanently fuzzy arm and hand, like white noise! i also get a many other symptoms that come and go almost daily but at the moment i can deal them as i keep my head strong. this is no to say i wouldnt ever but while i can deal with it i would rather not. save them for if i really need them. they offer them nearly every time i have an appointment. it’s a prsonal choice though i guess on how much you can put up with and they way that your ms affects you. it’s so different for everyone.


tomtom
6 years ago

Okay, not to go against everyones opinion on not going on medication here.. But personally I cannot understand why people chose not to :S What happens is that you give your nervous system free access to make all the damage it wants. The medication will stop you from having as many attacks, and it’s the attacks that are damaging. I wrote the same thing in a previous post, but I started on medication and was totally fine, then I changed to Gilenya and it only took one week without medication before the attacks started again. Ive been using Gilenya (pills) for one year and I haven’t had a single attack after that. The only apparent symptom at the moment is some degree of fatigue, and blurry vision if I get tired, thats it. One pill every day to stay healthy and attack free, yes please. So my suggestion is that you start taking medications straight away.

I was lucky and was given the best medication very quickly because of my age, you can choose between Gilenya (Pill every day) or Tysabri (Intravenous once a month).. Both of those medicines are absolutely fantastic and has kept me and loads of other people healthy from this extremely destructive illness..

Hope this will change your mind, because it will change your life!

Tom


rdhdbtrfly
6 years ago

I too was immediately started on Disease modifying medications as soon as I was diagnosed. Stayed relapsing remitting for 8 years. Now secondary progressive on Tysabri. I had an old sister that also had MS and was Never treated with MS Drugs. She was in a wheelchair by age 43 and died from complications of MS at the age of 50. I will keep fighting with WHATEVER Works to keep me out of a wheelchair! Not meaning to scare anyone. This MonSter is Very differant for each person. It is very important that you be your Own activate and find a Nuero that will discuss all You options with you and be open and honest with any Treatment you decide to follow.


cameron
6 years ago

I really hope you take note of what tomtom says – he’s dead right! I was dreading doing injections but I was so scared of the MS that I knew I’d do whatever. When it came to it, injecting was so absurdly simple that I (almost) laughed. Given all the rest of the nonsense I was putting up with thanks to MS, it was as nothing. And now I wonder, nine years on, what I would have been like without them. Now that IS a scary thought.


gav
6 years ago

Unfortunatly tomtom, its not that easy for some people, don’t get me wrong, I’m pro DMD, but I’ve not got a family to look after and I’m relativly responsibility free. Some of the DMDs have life threatening potential side effects (Tysabri for one, but also Gilenya too) and while the chances of these side effects are less than a tenth of one percent, they still terrify people. Unfortunatly, not everyone can get on Tysaberi either thanks to the qulifying criteria, although more and more people are being prescribed it and the oral treatment you mentioned still hasn’t been officially rolled out across the UK but I believe they’re getting closer to having it as a sixth option for patients to chosse among the other therapies currently available.


tomtom
6 years ago

Yeah I know what you say Gav.. Ive tasted the destruction the attacks does to your body, and would say that any side effect is better than that. Yes it’s a risk that you can get serious side effects, but you will be very throughly tested the first period your on the medication, they will quickly see changes in your body if anything will go wrong. All im saying is that you leave your nervous system unprotected, which isn’t a smart choice since you WILL get attacks often. The myelin will repair it self to some degree if you stay relapse free for a long period, and the sooner you start on medication, the bigger your chance is to become “cured”. It is of course difference between the age of 50 (have had ms for many year) and 22 like I am. Im mostly speaking to people in the same situation as me, since I know how well the newest medication works. I hope the people in the same situation as me do not hesitate to use medication. Start on avonex or a similar medicine and work your way up to either tysabri or gilenya and hope that it works for you. Because they make a huge difference.. massive in fact


montyclift
6 years ago

Everyone makes their choice for highly personal reasons. I was never offered DMDs but who wants drugs that work for 30 per cent of people giving them a 30 percent chance less relapses. That’s a 9 per cent chance of working at all! You also have to fail on all the DMDs before they will consider Tysabri or Gilenya. It’s a crap shoot. I’m SP now and in a wheelchair but it took 16 years to reach that point: 28 years if you take it from my first symptom aged 21. Other than not walking, I am 100 per cent healthy which I attribute to an immune system that has NEVER been compromised by DMDs or steroids.


tracy
6 years ago

I like how Rosieella said the white noise, my legs are like that!i take Lyrica twice a day for my legs and i have Copaxone. these were given to me right away. we don’t have any oral meds here in Canada yet, do the oral meds work well?


rosieella
6 years ago

thanks tracy, it’s the best way I could describe my arm, its not quite pins and needles!seems to make to sense to people 😀 I got a bit worried reading this thread, those on meds seemed very sure that it is the right thing to do. After reading this, I had to take a moment to consider it as at the moment Im quite against using drugs. I have had lots of conversations with my neurologist and ms nurse and they have always been very supportive of my decision. I was told that the meds i would be given (didn’t really pay attention to names as I didn’t want them!) would not change what damage would happen but that during an episode it may make recovery quicker. I wouldn’t rule them out if I had another bad episode but if they aren’t going to change the damage Im left with, why would I want to put them in my body? like montyclift said, I think its a personal choice. there isn’t really a right or wrong, its what works for you. meds are available should we need them but not everyone will choose to use them. this thread is probably confusing dan more! i know it’s made me do some thinking! (and maybe some research later!)


tracy
6 years ago

so how do you deal with the fuzzies? if i don’t take my meds i can’t walk right. the fuzzies become numb and pain. the meds won’t help the damage done to my legs but i need to keep walking. i am hoping that i can do a 5k run with my 10yr daughter in june.


tomtom
6 years ago

What the meds does is to reduce the amount of attacks yo have. And as long as you can keep the attacks away, the myelin protecting your nervous system can recover.. Unfortunately if you are 50 and have had 2-3 attacks per year, and no meds, the myelin will not heal.. But no matter age, the medication that is being offered, especially Gilenya and Tysabri, will reduce the amount of attacks by 63-70%.. I haven’t had any numbness, any muscle spasms or cramps, nothing in over a year. Because I started on medication right away, my nervous system have a fighting chance to heal up. The medication doesn’t cure you, but reduces attacks.. I was on avonex (injections) for 4 months, and I had an attack.. therefore I could move on to the secondary medicine (Gilenya and Tysabri).. Medication have kept me healthy, along with a healthy diet and working out 4 times a week. Do not hesitate, there is alternatives of medication that will work for you.


cameron
6 years ago

The other point about meds is that there are extremely strict guidelines about when they can be prescribed. You’re only eligible if you’ve had a certain number of relapses within a given period. So if you refuse them when they’re offered, it may well be that if you change your mind you can’t be prescribed them. A friend of mine went on Rebif but it didn’t suit her. She came off it but unfortunately her neuro team hadn’t told her about the eligibility criteria. Later on and having changed neuros she wanted to go on Copaxone but has been told she is no longer eligible because her last relapse was too long ago. Another reason for taking them is that the follow-up is valuable. You get to see the MS nurses regularly and you know that someone is keeping a close eye on you. Finally, when you’re considering whether or not to go on meds, read what the doctors say. You’ll see again and again that it is the first-line treatment. Have they really all got it wrong?


rosieella
6 years ago

this is turning into quite an interesting debate! there has been some thought provoking things said. in reply to tracy, i just put up with my arm! don’t get me wrong, there are times when it p*****s me off and i get alot of other symptoms- too many to name! i don’t want to mask it as im still learning what my body is doing and triggers. also, like someone else said, there are sides effects and im not prepared to take those risks unless i really have to. just playing devils advocate (really don’t want to upset anyone) but ms is so uncertain,its hard to say if those on meds would have been any different if not on them. in response to cameron, does that mean my dr has got it wrong when she agreed to my decision not to have meds? surely if it really should happen, she really should have pushed me more to take them…
sorry for the rambled message, ive just had a little of my own pre-prescribed drugs! works a treat 🙂


cameron
6 years ago

Hi Rosiealla, in reply to your question: I think doctors have to be convinced that you want to go on medication because it is a regime that is long term and requires a certain discipline. If anyone is half-hearted, they are potentially a waste of valuable MS nurse/consultant time and will probably default. I also wonder if they’re just trying to save money (?). As to whether the medical evidence is strong enough, I repeat what I said about not all neuro teams being the same. My first neuro was awful – so much so that my GP decided to refer me to the National Hospital of Neurology (London) which is THE most well known centre for MS treatment in the UK. The neuros you see there do only MS and they’re all involved in MS clinical research/trials. Quite simply, they’re the best and I trust them absolutely. There was no messing about – I was told that I needed to go on drugs immediately but not before I’d attended a course of 6 lectures on Living with MS (organised by them)because they said I had to be in the right frame of mind and know what I was doing. As I said in a previous post, their worry was that my local area wouldn’t fund them.They even said I might have to go directly to my MP and make a special case. It all worked out no problem but I realise, reading your concerns, that I have had the ‘rolls-royce’ of treatment. Sounds as though you haven’t had that level of support, which is a shame but probably not uncommon.

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