Forum

Drugs

I keep reading that when people have been diagnosed they are put straight onto one drug or another whereas I have not been offered a thing. Was dx 2 weeks ago roughly so is this too soon. Have been regularly tested for around 3 yrs with MRI scans which immediately showed up a lesion, but as it was only one, no definate dx was given at that time. Whats the deal with the drugs thing and how do i get hold of vit d3 that people have talked about? ATB Tony

Hi Tony. Most of us get our vitamin D3 on-line - it’s very much cheaper. Do shop about - the prices vary a lot. If you can wait 2-2.5 weeks, you can use my “loyalty” code for iHerb.com. They sell 360 x 5,000iu vitamin D3 capsules for $14.95 so that with the post and packing it costs less than £12. The loyalty code gets you $5 off your first order, so it’ll cost you under £10. The code is EVU885. The link to the pills is: http://www.iherb.com/Healthy-Origins-Vitamin-D3-5-000-IU-360-Softgels/18335?at=0 VERY IMPORTANT: Do not order more than £18 of goods or you will have to pay import taxes and an admin charge of £8! (The post & packaging doesn’t count in this. I normally stick to less than $27 of goods to be safe.) You can buy the same pills on ebay and through sites like Amazon too. Now DMDs - the disease modifying drugs that some people go on when they are diagnosed. These are NICE criteria for being allowed them: People with relapsing-remitting MS should be offered interferon beta (any type) or glatiramer acetate (Copaxone) provided that the following four conditions are met: • can walk 100 metres or more without assistance • have had at least two clinically significant relapses in the past two years • are aged 18 years or older • do not have contraindications (see specific summary of product characteristics (SPC) for details). I’m in a rush right now, but if you want to know more, please post and I’ll get to it later on. Karen x

What is the Vit D3 for?

More and more research is being published that shows that vitamin D3 has an important role in developing MS in two ways: your mother’s vit D3 exposure while she is pregnant and your own D3 exposure while you are growing up. On top of that, most MSers have a low D3 level (RRMS tend to be best, RRMS but having a relapse are worse, PPMS is the worst). There is also a growing number of studies that show that taking D3 actually reduces the number of relapses that RRMSers have. A lot of neuros and MS nurses are now recommending that MSers take D3 supplements, often 5,000iu a day. They don’t know precisely why it’s so important, but D3 seems to have something to do with lots of autoimmune diseases. It has some sort of interaction with certain genes. If you want to know more, google vitamind3uk and vitamindcouncil. These websites have loads of info. GPs are almost all completely in the dark about this, but they can get you a blood test to check your levels if you want one. Please note that the recommended levels in the UK are very out of date. Neuros working in this field recommend that MSers keep their D3 levels very much higher. I can’t remember the numbers at the moment, but you can get more info on the websites. Hth. Kx

very much, thanks K. Is this a full time occupation for you? Tony

Oscar1 wrote:

very much, thanks K. Is this a full time occupation for you? Tony

LOL! It’s my “self-imposed day job” :smiley: I first came on the site when I was feeling very low because I was going through a bad relapse - that was in April/May 2010. I’d been diagnosed for a long time, but never really engaged with the MS community. I was quite overwhelmed with the support and information that I got on here so I’ve stayed. I noticed quite early on that there were only one or two already diagnosed people who came onto the Limbo forum - and that meant that a lot of people weren’t getting answers. So I started “helping out” a bit. And it’s grown into something I do most days - it’s nice to be able to put my knowledge and experience to good use. I don’t work any more, so as I already said, this is my kind of “day job”. Karen x

Keep going your doing a great job. When I have a little more knowledge I would like to help support others in much the same way. Until then I can only offer a distant arm round the shoulder. Tony

Oscar1 wrote:

Keep going your doing a great job. When I have a little more knowledge I would like to help support others in much the same way. Until then I can only offer a distant arm round the shoulder. Tony

ty :smiley: Arms round shoulders are really important :slight_smile: Karen x

Think I need one today. Got up this morning and having real problems walking. Managed to just get in the shower and get myself dressed. This is taking longer by the day. On top of that England lost at rugby and Wales won. Not a good day!!! Tony

Oscar1 wrote:

Think I need one today. Got up this morning and having real problems walking. Managed to just get in the shower and get myself dressed. This is taking longer by the day. On top of that England lost at rugby and Wales won. Not a good day!!! Tony

((((hugs)))) for the walking - I hope tomorrow is a better day xx Absolutely no sympathy for the rugby - I’m Scottish :wink: Kx

chris wrote:

Ok I’ve probably been naive about my diagnosis until this point, but I was a bit shocked when my consultant started talking about when I was going to be going on drugs (other than Vitamin D). I’ve got RRMS, 1st attack Dec, 2nd attack & diagnosis May. Both attacks have been sensory. I’ve changed diet and reduced stress, so we’ve agreed we’re going to see what happens over the next 12 months. Reading the DMD factsheet after the appointment was very depressing. I’m not keen on taking drugs - particularly having to inject, and the possible side effects. Can someone tell me that it’s worth it / whether there’s an alternative to injections / that people don’t always get side effects. What else do I need to know. As the symptoms of this attack have started wearing off, I’ve started putting my head back in the sand and trying to forget I’ve had the diagnosis. Now it’s like it’s back to square one and I just want to cry. Help. Thanks. Chris

Hi Chris. I remember my version of that conversation very well. Felt like a ton of bricks had hit me right in the stomach :frowning: My MS was REAL. The thing is, once you think about it, it’s actually a really positive move - it’s DOING something about the MS; fighting back. There are all sorts of groups who swear that diet and oxygen and alternative remedies etc can do the same job, but the fact is that DMDs are the only treatment with scientific evidence to back them up. Are they worth it? In my experience, 100% YES. The 12 months before I started on Copaxone I had 4 or 5 relapses - mainly sensory. The next 3.5+ years I had a couple of very minor blips, but nothing that would count as a proper relapse. Then in January 2010, my fatigue started to get very very bad and in April 2010 I started relapsing properly. My neuro decided that Copaxone wasn’t working for me any more and took me off it. That relapse turned into the worst one I have ever had. It was followed by several more. My EDSS score (the disability score thing) went from about 1 to 6 in less than 12 months. I now use a walking stick and a wheelchair. I have double tinnitus, cognitive problems, digestive problems, spasms, tremor, vertigo, autonomic problems, and loads of other things that I didn’t have before April 2010. I kept asking to go onto something else, but my neuro kept telling me, “Wait for fingolimod. Wait for the pills.” But the approval date kept being put back. He finally accepted that I needed something while I waited and I started on Rebif in July 2011. I would give just about anything to go back to April 2010 and change his mind about Copaxone. Get some knowledge into my (then) too-trusting and naive head so I would argue to stay on it - scream at him; beg; hit him if necessary! You see DMDs don’t just reduce the frequency of relapses, they also reduce the severity of the ones that you still have. So, OK, I would still have had that relapse that started early 2010, but perhaps it wouldn’t have been as bad? And perhaps I wouldn’t have had those steroids which screwed up my digestive system? And perhaps I wouldn’t have had some of those subsequent relapses? Perhaps I would be back at Uni, back in training, back walking the dog in the woods,… Sorry if this is a bit full on. It’s something I feel very passionately about (for obvious reasons!). Back to your questions… Alternatives to injections? There is a new pill called Fingolimod (AKA Gilenya) that is believed to be about to be approved by NICE. It should (hopefully!) be available sometime in Spring 2012. However, there will be criteria to be able to get it. These are likely to be that the patient has relapsed while on a standard DMD or that they have highly active MS (i.e. are relapsing frequently). Fingolimod (like everything that we put in our body!) has side effects too though. Side effects? The injectable with the mildest side effects is Copaxone. The interferons (Avonex, Rebif, Betaferon) can cause flu-like symptoms. A lot of people find these wear off after a few months. Some don’t get them at all. Some never get rid of them. They usually respond well to paracetamol and ibuprofen though. All of the injectables cause bruises and red blotches in the injection areas. Copaxone can cause lumps and indentations too. Injecting is an absolute doddle though - please don’t let the fact it’s injections put you off. And if you don’t like needles, you can use autoinjectors so you don’t have to do the injection manually. The Rebismart (for Rebif) is designed so you don’t even need to see the needle! One final thing on the “is it worth it” question. Something else that DMDs seem to do is delay the onset of progression IF they are started within the first couple of years after diagnosis / before mobility issues have started. You can get loads of info about DMDs on the msdecisions website. There’s bound to be some on here too, and on the MS Trust website. I would avoid other sites - some of them will be full of scaremongering rubbish! I’m not enjoying Rebif btw. The side effects are beginning to wear off at last, but Copaxone was definitely easier to live with. The Rebismart is very cool though, and the Rebif needles are ridiculously thin so the injections are pretty painless. I could stop Rebif because of the side effects, but I won’t. There is no way in hell that I am ever going to willingly go DMD-less again. I guess I’ve seen the consequences so I can do the cost:benefit analysis very easily. Some “flu” vs losing my mobility. No contest really. Karen x