Dear all. i am positive that i have not asked this before, but please forgive me if i have (lets face it, very likely that my memory is playing tricks on me!). i have an appointment with my neuro next tuesday and will be discussing medication for my condition. does anyone have any particular suggestions for medications that they’ve found to be good (or bad)? if so please could you let me know as i’d appreciate any perspective on this. hope all is well with everyone, and that we’re all fighting this as best as we can, fluffy x
Fluffy, if you do a search within the forum you will find a host of threads on the different DMDs and people’s experiences on them.
My own experience: lucky enough to get on Avonex back in 2000, less than a year after dx - my MS was aggressive from the start, so boy did I need it. Did well on Avonex for a good number of years - best part of a decade. It is a good drug, and I am very glad to have had access to it. Once a week injection, then you forget all about it for another week. Suited me well.
Finally, my MS changed up a gear. Luckily for me, stronger options were available by then, so I’ve been on Tysabri for the past 3 years and am doing well on that, fingers crossed.
There are more and more DMD options available as the years go by, and that means more choice but also more complication. I have always tended to ask the neurologist what he thinks I should be on, and go for that. It’s not my area of expertise, and I generally prefer expertise to guess-work. If you feel the same, don’t be afraid to ask the neuro for a clear steer.
Good luck.
Alison
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Hi Fluffy
As Alison said there are quite a number of options avaiable for the first DMD now, the injectables and the newer tablets. You can find out about them by looking at the ‘What is MS?’ tab on this website, then the Treatments & Therapies tab, then the Disease Modifying Drugs one.
I started on Rebif in 2009 and it worked well for 4.5 years. When it stopped working for me (my neuro’s words), I switched to Gilenya which is a daily tablet. I’ve been on it for almost a year and so far, so good.
The nurse at hospital went through my options and demonstrated the injectables and their auto-injectors with me. She left me with a huge information pack and gave me some time to mull it over before I made a decision.
Tracey x
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Hi Tracey and Alison. many thanks for taking the time to get back to me, it is really appreciated. i will look into these and take the advice of searching the forums for other posts on the subject. i hope no-one minds me asking, as judging from the leaflets i’ve been given its a mindfield of different opinions, ideas and solutions. thanks once again, and my very best wishes, fluffyollie
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