I had the hair loss....bad! It is 10 months now, and it has slowed to mostly normal. I did start using thei Nioxin shampoo and conditioner. IT definately helped! My skin did not change. My fatigue is bad some days, but I do have 3 small children and had a hysterectomy in May. who knows why I am so darn tired all of the time? Oh well...
wildcat2x said that many on the gilenya have started taking it in the evening because of the fatigue issue. When are you dosing yours?
Those of you on Gilenya - be sure to report your problems to your doctors. This drug is new enough that they need to compile patient notes on experiences.
I'm really glad to read the experiences of those of you on gilenya - it's adding a lot to my knowledge base, not that I'll remember it in a few days! LOL
Hiya! Thank you for the update.
I'm on Gilenya and experienced nightmarish fatigue. What I find interesting is that when I asked my Novartis Nurse she said that they didn't have any reports of incredible fatigue in the studies but when I asked the Bioscrip nurse about the numbing fatigue - she said that almost all of their patients complained about the massive fatigue.
About the wash out: I was told by the Novartis nurse that there was a 4 month wash out after Tysabri. When I mentioned that to my neuro, she said that that is what they were saying but she thought a 2 month wash out would be fine.
Now - I have to say that of all the drugs I've been on - the Novartis nurse seemed to be the least informed of all the nurses for all of the drugs I have been on.
Novartis sends a ton of information, which is nice.
I still have some fatigue but it's not nearly as oppressive as it was when I started the Gilenya.
Has anyone mentioned anything about skin changes? I can't say that I've had increased acne (I've always had bad skin) but I've noticed patches of skin that are dry, scaly like with raised bumps. They are approximately quarter sized and the hair is missing in those areas. It might be nothing but I've been gradually getting more.
It's nice to get information since there aren't a lot of people on Gilenya yet.
I know it is not gilenia, but the oral drug I am on in my trial is very similar and I have had a little hair loss. Just thought I would add this to the comments already shared.
Sarah x
Wildcat- did the hair loss stop for you? I think Julie had that problem as well. And the acne? I'm not sure I've heard that mentioned - did it also resolve on its own?
Hello. I am also on Gilenya.
Many of us on Gilenya moved the time we take it to the evening. The first week most of us feel really fatigued but this does lessen or go away. About 6 weeks, there are some of us (myself included) that experienced some hair loss. Others on Gilenya say that this stops around month 5. Another side effect that seems common and I've experienced is some acne around month 2.
The first dose is monitored in a care facility: they take your blood pressure, and monitor your pulse sitting and standing every 15 minutes for 2 hours, then every half hour for 2 hours then once an hour for 2 hours. Also they have a Gilenya facebook page.
Thank you lulu for all you do.
Sincerely,
Wildcat2x
Thank you for this info Lulu. I have a question, and maybe it's in your post- but my brain isn't functioning well today... Is there any info about it's safety in the long term? Is is a safer option than Tysabri for your heart, or otherwise?
I would love to attend something like this, but so far I cannot find one being given in the Seattle area.
Thanks again!
Tammy
As I am rereading this I wish there was an edit function that I could add more information and correct a few typos.
I can't change the typos but here is the addition I thought of -
Because of the rats with Melanoma, most neuros also have patients examed by a dermatologist for skin cancers before beginning gilenya.
I am on Gilenya! My personal experience is this: I have only had one relapse that needed steroids, but it was post-partum. However, I tend to havemore day-to-day symptoms. They are annoying, but they don't stay for long. Here today and gone tomorrow.
The baby is crying, I have got to run. Post more later.
Ann
Lu! Thank you for taking the time to learn about this, and share with us!
This is the user list-post for Gilenya (incase they are offline and so not see your write-up here - we can hit them up):
http://www.medhelp.org/posts/Multiple-Sclerosis/Gilenya-Users-Past-and-Present/show/1469412?controller=posts&action=show&id=#
-Shell
Thank you for sharing all of this!