Forum

Medication ???

Hi Everybody

Is there anyone out there completely medication free?

Interested to hear if it’s possible to live with and deal with MS without taking any medication at all?

Ann Marie

I’m not on dmds. I take pregabalin. Doesn’t get rid of symptoms just maybe dulls them. Do you take anything and how are you coping? Lynn

Hi Lynn

I’m very newly dx though can trace the disease back about ten years.

Have been on citalopram since oct but am in the process of weaning myself off them. Really didnt want to start them but felt a bit bullied by my gp into giving them a go which is why I’m so keen to get off of them again asap.

I’m not on anything else apart from the odd pain killer to deal with back pain, which I don’t know if is MS related or not.

So far I’m coping quite well.

I’ve got nothing against medication but the idea of all the differnet side effects terrifies me.

Really interested to see if there is anyone out there dealing with this disease medication free.

Thanks

Ann Marie

Hi, I do take several meds on prescription. I know that without them, I would be in severe pain. I know this because I have tried going without them.

I do eat a varied healthy diet, but that alone does not ensure a pain free life for me.

Perhaps it is so for johnhunter, so that`s great for him.

luv Pollx

Hi,

I’ve been diagnosed for a few months now and not on DMD’s, but take Pregabalin and Amitriptylene. I stopped taking them as I didn’t feel they were doing anything for me and didn’t want to take meds for the sake of it. After stopping them, I realised that they were helping after all and started taking them again! I did consult my GP at the time when I stopped them.

Fizzy x

The only medication I currently take is ibuprofen (although have taken steroids twice over the last two years.) I have been under two different neuros so far but neither have suggested any DMDs,etc. I was told when diagnosed in 2010 that my MS was benign but he then changed his mind and said that it was RR about 5 months later after another relapse. I do seem to have got off fairly lightly so far - balance problems,focussing problems,headaches, numbness in right foot,fatigue but most of the time I don’t feel too bad. Because my job is very demanding (I am a lawyer) I am finding it very difficult to function at work despite that. Consequently I have decided to apply for early ill health retirement from work because I want to enjoy the rest of my life before my symptoms do get worse - which seems rather inevitable.

Im not on anything but going to discuss DMDs because of frequent relapses, however ive been diagnosed since 2004 so medication free for sometime and was fine x

Hiya

Yup. I’m med free. I was ‘officially’ diagnosed in 2002 but I had hints of MS back in 1995.

Everyone is different with this condition. If you do happen to have a symptom that can be treated without much side effects out weighing any good you get. Then why not pop a pill? Still you don’t have to. It is your choice.

Take care,

Marty

As a general rule, the worse someone’s MS and/or the longer they’ve had it, the more likely they are to take meds. I was med free for many years, but then my MS was very mild. Now it’s not so mild, I take baclofen, pregabalin, spasmonal forte and modafinil and I couldn’t function without them. I had to come off amitriptyline because of side effects, but all other meds’ side effects have worn off after a few weeks and been negligible in comparison to the benefits I now get. Every single thing we eat, drink, put on our skin and even breathe affects our body’s chemistry. Chefs use chemicals in their cooking these days. Fruit and veg are sprayed with all sorts. Unless you prepare all your own food from known-source, organic ingredients, it is impossible to avoid additives. And even then, we are back to literally everything you consume affecting your body. It is daft to take a med that doesn’t work or that you don’t need, but if it helps you have a better life then why wouldn’t you take it?

I understand your desire to stay medication free, but sadly MS does not always co-operate.

The idea of most MS medication is prevention and waiting to get worse before opting for treatment strikes me as being a flawed strategy. If you prefer to gamble on your condition remaining stable, then fair enough, but it is a gamble.

I eat a healthy low fat diet (Jelinek) and exercise at the gym every day, and while this undoubtedly helps, I still take ldn as an insurance policy.

All the best with your tricky choice.

I have been on Rebif in the past but my relapses got so much worse on it so stopped and since have not had a realpse in 2 years 3 months.I have been offered tysbari but refused because of side effects. when or if my MS progresses i will look to medication again but so far doing really well

Hi, I take no drugs for my ms symptoms - I have tried them all (or most) but due to renal failure I had horrible side effects and had to stop. Others I have not been allowed to try. I would love to take some thing that would rid me of some pain and stiffness but preserving the small amount of renal function I have left is more important. (Sometimes doesn’t feel that way though!) I tried Rebif but that tried to rot my liver, not good. I drink tonic water which sometimes helps with leg cramps, but otherwise the strongest think I can tolerate is Panadol which does not really help at all! There are some good options available so if they can help you I would grab them - it seems silly (to me anyway) to suffer unnecessarily ( that sounds bad, not meant to be!)

Hi Ann Marie,

I’m not on DMDs (my choice, but completely supported by my neuro), however I do take symptom relief, and don’t think, at this point, I’d be managing without it.

My main one is baclofen, but I also use diazepam (anti-anxiety, but also boosts the muscle-relaxant properties of baclofen, when it’s not quite doing the trick), and a variety of painkillers for musculo-skeletal pain. I don’t have a lot of neuropathic pain, in my opinion, so I’m not taking anything specifically for that.

I don’t think there’s any virtue in untreated pain - that it’s teaching me to be a better person, or anything like that - therefore I have treated it where I’ve found something that works. My doctor also warned that leaving pain untreated does NOT mean you will eventually adapt to it, or tune it out. You might think that if you live with it for long enough, eventually your brain would turn the volume down.

Unfortunately, the opposite is true. The more pain stimulus your brain gets, the more it is attuned to pain, and on the lookout for it. Thus, pain that goes untreated could actually be fine-tuning your pain circuits, and making them MORE sensitive - so you experience a worsening cycle of pain. Intervention is needed, so you’re not training your brain to turn the volume UP.

Tina

Hi all, I m having a argggh help moment! I was diagnosed in 2011 after five years of symptoms. I was on rebif for a year but had an allergic reaction and came off it in January then went straight into relapse (ongoing now). Struggling a bit with what to do now, I’ve been offered copaxone but concerned of side effects, also read a bit about LDN but it seems hush hush…any views? I’m frequently relapsing remitting. Four relapses per year, just taking pregabalin now and managing but want a bit of life back fom relapses lasting 6 weeks four times per year. Is it suck it and see for everyone on different meds as to what units you? Thanks. Have a good day.

Hi everybody

Thanks so much for all of your informative answers.

I am most definitely not against medication and am not necessarily looking to deal with MS without medication just really wondering whether it is actually possible to do so.

I’m not on any medication at the moment and am not being offered it either so am trying to decide if I’m not being offered because in my neurologist/ms nurse/gps professional opinion i don’t need it or if I just haven’t asked or pushed enough to be given something to help with my symptoms.

To be quite honest I’m completely confused. Is my MS mild enough that I don’t require medication or am I pushing on and coping unecessarily when there may be help out there for me if I ask for it??

Thanks again.

Ann Marie

Hi again,

If you are having symptoms that are painful or bothersome, then I don’t think it is for the medics to decide you’re “not bad enough”. My guess is that you may not have been explicit enough about your symptoms, or how badly they’re affecting you, so everyone’s just assuming you’re getting along quite happily.

I would certainly enquire whether there’s anything that may help you. If you try and don’t like it, there’s no obligation to persevere. In fact, if, having discussed it, you decide you’re NOT bad enough yet, and you’d rather stay as you are, and not mess around with possible side-effects, you don’t have to take anything at all. I certainly think it’s worth a discussion of the options, though.

I didn’t know I needed baclofen 'til after I’d been prescribed it. When it started working, I realised I should have been on it months earlier, and had been suffering for no reason!

Tina

Hi Ann Marie

I take Rebif which I sincerely believe is helping to reduce my relapses. Before going on Rebif I had two severe relapses which led to diagnosis and I was scared that I would continue in that vein. I think I may have had at least one more but, in the absence of much input from MS nurse or neuro at that time, I put those symptoms down to recovering from the second relapse but they were completely new symptoms so it was probably a further relapse. I started on Rebif in August 2009 and had a mild sensory relapse in October 2009. I haven’t had another relapse until now.

At that point I started on amitriptyline for the burning pain in my arm and I have tried several times to wean myself off it but every time I get down to taking it every other day the burning pain returns and I have to go back on it. Apart from that I take painkillers when necessary and am currently on steroids for this relapse which again is much milder than previous ones. My walking is slow but at least I am still mobile and still at home and not in hospital.

All other meds I take are for pre-existing conditions; asthma, migraine, rhinitis. On the whole, I think I’ve kept my medication to a minimum so far and I intend to do so for as long as possible. I already pop way too many in my opinion. I now have a rather large toiletries bag full of medication which is reminiscent of the one my mum used to have for her vast array of medical conditions and I don’t want to go down that route if I can help it.

On the other hand, if I need a little medication to make life bearable when it’s necessary, then I’m not going to deny myself it just to say I’m staying drug free.

Regards

Tracey x

Hi Ann Marie,

Decided to bite the bullet and look at some MS forums. I was diagnosed with RR MS 6 years ago but had some symptoms before. The past 2 years I have had 2 major relapses resulting in me having optic neutitis (spelling sorry) which has left me partially sighted in my left eye. Up until now I haven’t had any treatment and was pregnant when this happened so couldn’t have any. My second episode affected my speech and grip and I had steroids for 3 days which got me back to normal after 2 weeks. As I have had these 2 big episodes my neuro and nurse want me to start treatment (injections) but I’m worried about side effects and the fact I have to admit I am slowly going down hill. I always thought I would remain drug free but now think should I take something to try and combat relapses. If it affects my other eye my vision will be very poor. I’ve always tried to stay positive and have 2 young children, does anyone have experience of the side effects from the injections? I have heard flu like sysmptoms which is putting me off.

Sorry for the rant but I guess the 1st post tells your history.

Regards Clare

Hi Ann Marie,

Decided to bite the bullet and look at some MS forums. I was diagnosed with RR MS 6 years ago but had some symptoms before. The past 2 years I have had 2 major relapses resulting in me having optic neutitis (spelling sorry) which has left me partially sighted in my left eye. Up until now I haven’t had any treatment and was pregnant when this happened so couldn’t have any. My second episode affected my speech and grip and I had steroids for 3 days which got me back to normal after 2 weeks. As I have had these 2 big episodes my neuro and nurse want me to start treatment (injections) but I’m worried about side effects and the fact I have to admit I am slowly going down hill. I always thought I would remain drug free but now think should I take something to try and combat relapses. If it affects my other eye my vision will be very poor. I’ve always tried to stay positive and have 2 young children, does anyone have experience of the side effects from the injections? I have heard flu like sysmptoms which is putting me off.

Sorry for the rant but I guess the 1st post tells your history.

Regards Clare

Hi Ann Marie,

Decided to bite the bullet and look at some MS forums. I was diagnosed with RR MS 6 years ago but had some symptoms before. The past 2 years I have had 2 major relapses resulting in me having optic neutitis (spelling sorry) which has left me partially sighted in my left eye. Up until now I haven’t had any treatment and was pregnant when this happened so couldn’t have any. My second episode affected my speech and grip and I had steroids for 3 days which got me back to normal after 2 weeks. As I have had these 2 big episodes my neuro and nurse want me to start treatment (injections) but I’m worried about side effects and the fact I have to admit I am slowly going down hill. I always thought I would remain drug free but now think should I take something to try and combat relapses. If it affects my other eye my vision will be very poor. I’ve always tried to stay positive and have 2 young children, does anyone have experience of the side effects from the injections? I have heard flu like sysmptoms which is putting me off.

Sorry for the rant but I guess the 1st post tells your history.

Regards Clare