Just seen my Consultant today and as usual they want me to make the all important decisions. It’s hard to make an informed judgment when you just don’t know.
I’m 52 and got diagnosed in August 16. Not that long ago. I had a scan at that time and the resulting diagnosis was R & R MS. After a few months of denial, confusion et I started Tecfidera. Unlike some, I have had no side effects to the drug, bar the odd hot flush I back of my neck.
I have not had what I deem and read to be a relapse, instead I do feel I have been on a gradual decline. For example, I have to rest more, more wobbly, left hand has started to play silly buggers and for the past 2 months, had horrible back spasms and tight chest pains. On Gabapentin of which I need to now increase the dose. If I could get rid of these pains I’d feel a million times better. Consultant not sure if MS. Related or just muscular…helpful.
Anway, I had another scan which is why I saw the Consultant again. No change to my spine and only a small new patch upstairs, so he doesn’t seem too worried. Because my white blood count has gone down a bit he is recommending a changeover Meds.
the first being monthly infusion. It’s called Tysabri. Cons reckons he has seen some good results from my other patients on this. Or the other is a new drug (tablet)called Cladribine. Apologies if spelling is wrong. He is recommending infusion purely because he has one cases of patients on the new tablet. Apparently only recently come of trial.
i am very needle phobic so possibly leaning toward the newbie for the wrong reasons, especially as I would have to give up one morning a month. That’s sounds stupid doesn’t it. I’m probably talking myself out of it.
The actual point here is does anyone have any experience or advice on this. Particularly if anyone out there is on Cladribine.