Help!!! I have just been diagnosed with MS and my consultant has offered a choice of the ‘gentler’ DMDs to start with. I was admitted to hospital with a suspected stroke, my MRI showed some pretty impressive inflammation of my cerebellum as well as some other lesions which resulted in him confirming I have MS but he can only classify it as CIS as it is my first attack. My mum has very advanced MS (sadly unable to move or communicate any longer) so I was terrified but my Neurologist has kept me very grounded and reminded me how far treatments have come on in the past 20 years and that he will work with me to prevent the damage ever getting to my mums level.
He has offered me the interferon betas or glatiramer acetates. I don’t like needles but was swaying towards the glatiramer acetate because he said they don’t have the cold / flu symptoms. However I saw my MS nurse Friday and she is leading me towards Plegridy because of the frequency. She also said cold / flu symptoms can occur with glatiramer acetate too.
So I didn’t make my decision on Friday and she is going to call me Thursday to see where I have landed. I just feel so overwhelmed and like I am choosing sweets in a sweet shop! I have tried to do lots of research but lots is saying there isn’t much to chose between them although some people are seeming impressed with the lack of side effects of Copaxone and others seem to think Rebif is the most effective in terms of disease progression.
I’d really value your experience and thoughts. Are those on glatiramer acetate getting the flu like symptoms? Has anyone been on both and what are your thoughts?
Your neuro is correct in saying treatments are much more effective today than twenty years ago, so why is he starting you on a twenty year old DMD?
The overwhelming evidence suggests that the harder you hit MS, the better the long term outcome.
Hi there, I can only tell you about my experience with Avonex - one of the interferons and basically like Pledigry but a weekly injection. You get an injection pen and don’t see the needle ( except when you remove it) . It doesn’t hurt at all - except on the rare occasion when , as a result of my own mistake I inject in the wrong area ( must have done getting on for 900 injections now with just 2 -3 mistakes). I’ve never been quite sure why the side effects are described as ‘flu like’ but I get a dull headache and feel a bit rubbish for 24 hours during which I just rest, take paracetamol. For reasons unknown some weeks are better/ worse than others. I suppose it’s just become routine for me now.
When I was diagnosed there were only maybe 3 treatments around and yes since then many more effective treatments have come online . I have talked with my MS Nurse about ‘changing up’ to one of the more recent ones but after around 19 years on Avonex and without relapses I’m not doing too badly so we decided to stick with Avonex.
As @whammel says, thinking these days is along the lines of start early with the most effective treatments. When I was diagnosed the neurologist seemed keen to identify if , other than the then recent optic neuritis, I had any previous episodes of unexplained symptoms. I told him about some tingling in my face and arms late in the previous year - tingling which I had been puzzled by and saw the GP but didn’t think too much about and they went away. At the time I didn’t understand why he was so interested but on hearing about my previous symptoms he said something like ‘ ok , so we can diagnose relapsing Remitting MS’
So - it might be worth thinking back to any unexplained symptoms you have had in the last year or two and telling your Neurologist about them?
Thanks you for replying. That is a really good questions, I will ask. I think he felt because I’ve made a good recovery and relatively symptom free now these were gentler - he said these ‘caused no damage’ to my body. But it’s interesting point that the actual damage is being on a much less effective drug and my MS progressing so thanks for that perspective.
I suspect he will say because I’ve only had one ‘recoded’ incident I don’t meet the criteria for the more effective ones. Though my MRIs (I had 3 in 3 days!) showed quite a few lessons so he said even though I don’t recall them, I will have had attacks previously.
I started treatment on Copaxone GA and stayed on it for 5 years. No side effects but eventually ran out of spaces to inject. (It was a daily injection).
I moved to Beta I weekly jab and that gave me awful flu like symptoms everytime. Lasting 2 days.
Changed to Tecfidera daily tablets and was on it for years.
Due to the generic version giving me GI issues I am about to start Kesimpta which is a monthly injection.
I have had no new lesions in 12 years and so feel thankful that this new stronger treatments are available
Whatever you decide there will always be others to move to.
Thanks, that’s really helpful to know about Avonex and amazing that you are doing so well on it! It really feels like a minefield - its great that we get a choice but at the same time a little alien, I’m not used to choosing what drug I want haha!! Really reassuring to know that the injections are easy and painless too - I am a whimp and dreading them. I have been known to run out of my doctors surgery when having a basic jab in my younger years! But going to man up as I the option of unmanaged MS doesn’t appeal to me. Thank you for your replies
Unfortunately ‘gentler’ is another word for ‘less effective’ when it comes to DMDs.
One of the things that has changed for the better in the past 20 years is that there are more effective drugs than the ones you’ve been offered.
When I was started on Avonex 25 years ago, it was the only show in town, and I was happy and grateful to get it. If I was diagnosed now, it’s not the drug I would choose. But my MS was aggressive from the start and of course I’m speaking out of my personal experience and your situation is your situation, not mine.
A more general point: it is important for the neurologist to know where you stand in terms of the risks and benefits of drugs. If you (like me) want to be on the most effective drug available to you and you’re prepared to take on a little bit of extra side effect risk if necessary to achieve that, it’s useful for your neurologist to know that.
But maybe that’s a discussion for another day. For now getting onto DMD – any DMD – is the priority. And as you say, of the ones you’ve been offered, it doesn’t really matter which.
It strikes me as being a gamble with your health to wait for further damage to be done, before starting a much more effective treatment.
I hope you get the answers you deserve.
Thank you all for your replies, this is all really useful. I think I will go for Copaxone for now, as you have said I have choices hopefully to move to others. Then at least I will be on something for now. I am due another MRI in a few months so presumably once we review that I can ask about moving onto something more effective. I defo want to hit this hard and keep any damage at bay for as long as possible
keep well.