Dear all,
I have been taking Fingolimod for nearly 2 weeks now and apart from my nightly bladder emptying sessions, I have nothing else to report in the way of noticeable changes since I started taking the medication.
I did still need to get up and use the toilet last night, but it was only once, it was becoming more frequent than that - 3 times on Friday night! Still as the Magnesium leaves my system, I believe my bladder is returning to normal. The time is 10:15 am and I haven't had my recent mad dash to the toilet as soon as I have opened my eyes this morning.
Yes that's right, I am still in bed. As soon as I finished taking the steroids last Tuesday, I was up and about and I think (know) I did too much and I am back at square one! I am really not happy about this, so my plan is not to get out of bed for a few days in the hope that I can get some benefit from the drugs before they wear off.
Speaking of drugs, the other day the FDA approved the licence for a new disease modifying drug. Teriflunomide taken orally and can be used around the same stage as the illness as the interferons. This could potentially be the first nail in the coffin of injectable medication for early relapsing remitting MSers.
I have got to go now as I need to use the toilet. Ironic , or what?
Kind regards,
Dan
Hi Dan,
ReplyDeleteI've been on Gilenya for about a year. Sometime around the 3rd or 4th months, I began noticing things. First, my energy is more stable and higher. I don't have the bone-crushing fatigue. I found it absolutely amazing - didn't expect it. My bladder issues haven't changed, nor my cognitive ones. Or my vision. I think the damage done is kind of the damage done, but I'd love to be wrong on that. I am also gluten-free, which made a huge difference for me about 4 years ago.
I can't stand how expensive it is. But I think I'm staying on it as long as I can - this is the best I've done since my diagnosis 15 years ago. And I've done it all - CRAB drugs plus Novantrone plus Tysabri for over two years.
Hi Trish,
ReplyDeleteThere is some interesting information to note there, thanks.
I agree with your view that when the damage is done, it's done, but I did notice improvements after a few months on Tysabri, so let's hope we're both wrong.
Dan