Hello Gilenya!
 

Looks like my love affair with Ty now has to end. My Neuro has told me that he is very uncomfortable with me continuing on Tysabri after six years with a JCV level of 2.406. Was so good, this makes me very sad.

Hoping it isn't a nasty breakup

Hello Gilenya....I have been reading a lot about you on Facebook. I hope you treat me well........

Good luck with the new med--glad you're well-informed...we need to be proactive health-care consumers!

I must admit I am pretty nervous about this new drug. after six years with little progression and NO side effects, I am apprehensive.

Only time will tell - I have read lots of real accounts from people, some with many side effects, and a few with little. I have also been reading about a 'rebound effect' from Ty, with a very large percentage experiencing a bad exacerbation 3-6 months after stopping.

I know only time will tell, and I may be one of those with no problems at all.

Finger crossed

How can you cross one finger???:D

BTW good luck and good wishes with "G".:hug:

HaHa Sal

Apparently, you don't realise how talented I am (Finger crossed)???? Although I am sure that now you know that I am not a great typist - or proofreader :D

I'm starting with Gilenya soon too. I've been on Copaxone for over five years now and my symptoms are getting worse so the neuro suggested I try something stronger and I chose Gilenya.

I've been through all the pre-testing and my first dose will hopefully be this coming week since I only have two of the 40ml shots left of my Copaxone.

My worst symptoms are fatigue and weak legs and hands. My voice gets weak after a few hours of the day too. I'm hoping it stops all of that from getting worse.

I was on Ty for almost four years and I had no rebound effect when I stopped it and went back on Copaxone, so maybe that will be the same for you when making the switch. And Gilenya is a powerful med like Ty so once you get on it, it should hopefully hold off any bad relapses that might have occurred had you just stopped it without going on another med.

I'll post my updates here and maybe we can compare notes. :)

Good info, Wiz...thanks for sharing!

Sounds like a good idea Wiz

I am still going though all the pre-testing stuff, still have to get the ECG and skin check done (problem with living far, far, away in a country town is that you have to wait ages for everything).

I had the OCT eye scan a couple of days ago - that was fascinating - showed that thickness of my optic nerve was in the bottom 1 per centile band, presumably from loss of nerve axons from optic neuritis in both eyes.

According to the optometrist I saw, OCT is being looked at as a possible means of gauging damage and progression - as well as providing prediction for future disease severity.

Have to wait and see how this technology develops.

Hi Lynn,

I had my eyes tested and everything was pretty normal except for a slight forming of cataracts, which he said was normal for my age. My dad had cataract surgery in his late 60s or early 70s so I suspect I'll need that someday. I've never had optic neuritis but sometimes I get pain in my left eye that comes and goes.

Here in the USA (at least in Illinois) the medicine manufacturer has contracted with a visiting physician organization that comes out to do all of the other testing, then they send a doctor and technician to give an EKG on the day for the first dose and stay here to observe for six hours to make sure there is no bad reaction to the medicine. The thing they watch for the most is a slowing of the heart rate to a dangerously low level. My heart rate is usually in the 70s though so hopefully that won't be an issue.

I had my first dose this morning, at my house. That has to be very expensive for Novartis! :eek: The doctor and nurse technician have to sit here with me for six hours taking my vitals. They'll take a final EKG at 4:30pm before they leave.

I had a job interview while they were here, now I'm doing my chores. The kitties are hiding in the basement, the poor little things! ;)

Good luck Wiz!!! :hug:

Good luck with the job interview - I hope your first dose has been really uneventful, and easy for you.

xxx

So far so good. I took my second dose last night and re-started my Lexapro yesterday. The job interview went well, if I get it it will mean big changes for me!

Good news Wiz

Hope everything works out exactly the way it is meant to ..... something very exciting about reinventing yourself - it feels awesome :)

Do you G" Peeps have to test for PML, regularly?

I have no idea - think the standard is to have an MRI once a year on G - (it is every six months with Tysabri).

However, now that there has been a couple of cases of PML in Gilenya patients who have never been on Tysabri, alarm bells might be ringing that it needs to be monitored more closely.

Kinda hope it changes to six monthly, because since I was told I have to change, I don't want to be caught out.