Forum

Drugs or not??

Hi all,

Went to see neuro today to discuss treatments. Was dx a month ago…optic nuritis being the main symptom then numb arm and really annoying itching for about three weeks. So not major life altering symptoms at all…I am confused about drugs…should I start them or not? What are the side effects of interferons? How have others got on with taking it? Apparently I will be taking the one injection a week one. I hate injections but if the kids in my class can inject themselves…diabetic children!..then surely I can man up and do it!

Advice please…

Hello, I am newly diagnosed and awaiting my MS Nurse appointment next week. I need her help in choosing my treatment! I understand how you feel and it can only be your choice but I feel I want help in keeping this in check for as long as possible. Have you looked at the MSDecisions website? It is very good and has a great tool which has helped me narrow it down to 2 choices. Here is the link: http://www.msdecisions.org.uk/ Sam x

I’ve just re-read your post and it looks like Avonex is on the cards, is that right? It is taken once a week into the muscle. This is one of the meds on my shortlist. The link I have given will tell you all about it and the others. Good luck. Sam

Hi I started Rebif, three weeks ago and can honestly, truthfully say, it’s nothing like you build it up to be !! It hurts more having your finger pricked for a blood sugar test. No symptoms as yet but am still in titration stage. I chose Rebif because if the rebismart mainly but also, I didn’t want to inject every day and I didn’t want to inject into muscle so it was the only option left really. But I am so pleased with my choice. The rebismart makes it so simple and straightforward. My only complaint would be the colour…it should be pink !!! Good luck with whatever you decide. Xx

I’ve been using Betaferon (every other day but only under the skin, not into muscle) for nine years and my only regret is that I didn’t start it years earlier. Side effects weren’t anywhere near as bad as they’re made out to be - I had flu symptoms for the first few weeks but if I took paracetamol I didn’t notice.

I was having relapses every couple of months before, now it’s less than one a year and when they do happen, it’s all over with much quicker and I’m back at work in a week or two.

Don’t underestimate MS relapses - they can floor you with no warning and cause damage that may never repair. We need to throw everything at it to try and keep some slight control. We’re lucky that we have more choices now.

Good luck with whatever you decide.

Val

Thank you all very much for replies. Have to be honest and didn’t really think about the injecting into muscle business! Will have a look at ur link now Sam…thank you :0)

Mrs H, is rebif taken every other day? and I know I sound thick but what is the rebismart? Is it a bit like an epipen that helps making injecting easier??

Val ur last comment really made me think…control…I don’t feel I have any right now, so the drug thing could be a way to take some back from this b****y disease!!

Wish I had found this site when I had just beed diagnosed…u lot are amazing!:0)

Hi emya The rebismart looks a bit like a mobile phone complete with a screen with a menu to teach you step by step and record info. You place it on your skin, wait for the light to turn green and press. “Simples” !! You inject three times a week, so I do it on a Monday, Wednesday and Friday. And it’s sub-cutaneous whereas the one that you do once a week, Avonex, I think, is into a muscle and I really, really didn’t fancy that !! I’m a total wuss !! Xx

Hate to be negative about the interferons, but they don’t stop progression of MS you know - they reduce relapses by one third but don’t make any difference to the progression of the disease. So they do give you back a little bit of control but not much. That’s why there is a suggestion that Tysabri become a first line treatment - it reduces both relapses and progression by two thirds, on average.

Hi sewingchick I understand that but the choice I was given was between copaxone, Rebif and avonex. And as far as I see it, anything is better than the nothing that I was offered by previous neuro. I want to reduce risk of further relapses, so box ticked !!

If you have tysabri as a first line treatment what happens when you need to come off it, would there then be nothing or standard dmds or does it give longer term protection even when you have stopped it. Thanks

Starting injectable DMDs early makes a significant difference to how disabled people become. I have heard all the anti-DMD arguments and all the “what’s the point” arguments, but I think the above statement alone means that anyone who doesn’t at least try a DMD when they are offered is an idiot. A bit harsh? Maybe. But let’s face facts: there is no cure for MS. All we have is some drugs that help to change things a bit for people with RRMS. So we have a choice of allowing a disease to run its course unchecked, perhaps fooling ourselves that supplements and exercise and diet etc mean that we are making a difference, or we can do all that AND take something that has been proven to make a difference. It is important to remember that relapses and progression are two different processes. BOTH cause disability. The fast-becoming old chestnut “injectables don’t stop progression” fails to address the fact that they DO stop relapses that cause disability. What’s more, they reduce the severity of whatever relapses still occur. Do we still end up disabled? Of course we do. They are not a cure. But how much worse would we have been if we didn’t do those injections? And how about the fact that the people on the drug in the original Betaferon trial have outlived those on the placebo? Keeping us alive longer seems like a pretty decent reason to take an interferon to me, irrespective of what it may or may not do for progression. Sorry if this sounds a bit in your face. I am passionate about our right to DMDs. In a year I had between DMDs, I went from an EDSS of about 1/1.5, building a new, exciting career and competing for GB in taekwondo to a 6, retired and walking with a stick. People go on about progression? What about the damage relapses do? Karen x

Incidentally, prior to that bad year, my relapses had been predominantly sensory and mild. Kx

I am strongly thinking now I should have been offered DMDS s lot soonersince my diagnosis was 2004. It seems now from reading many posts that people who have symptoms, sensory etc etc are offered diagnosed and offered them? Have they done away with the criteria?! Given I’ve had three relapses in over two years and its only now they may look at DMDs?! Sorry to impose on your post but its something I’ve noticed. Hope you get sorted and please keep us updated with the DMD progress! . If tysbari first line treatment is there a possibility I may be offered that ? Its very confusing x

Something I have found over the years is that how we describe our relapses has a major bearing on how serious the neuro believes them to be. I was put on Copaxone after a series of relapses that my neuro did not see. They were almost all sensory, but they led to me being off work for several months. The neuro took me at my word and offered me a DMD. Others I know have had similar experiences.

The other factor is the PCT. The phrase “clinically significant relapses” in the NICE DMD guidelines is sufficiently ill defined for some PCTs to apply all sorts of additional descriptors, including sensory relapses not counting. This is of course utter filtered words because who knows what the next relapse will bring :frowning:

I believe that Tysabri is a first-line option only for people diagnosed with “highly active” or aggressive RRMS, but there is a move to make it more widely available so this could change.

Karen x

I’m seeing neuro Thursday so it’ll be interesting I see what he says as the last two times after a relapse I’ve seen him he has said I don’t need medication and its not progressing so medication really is not necessary. Thinking he’s the expert I’ve never looked into this further. Got a different hat in now given I walk with a limo after a short while, looking at getting a stick and applying for a lue badge…this has all happened since last seeing him in August! Erm thi k you may have got it wrong mr dr man x