Gilenya Questions?

Question

There is a neuro talk this Monday that I will be attending. It is sponsored by Novartis and the topic is their newest MS drug, Gilenya.

Does anyone have questions you would like to ask about this oral DMD or any other topic?  The signup rate for this one is very small , so I imagine I will have lots of opportunity to ask my questions.

You can add any questions here -.....

Sarahsmom46 · Answer

Like Lu said, I feel that Gilenya gave me a lot of relief from symptoms. The symptoms did not go away, but I was able to cut down my gabapentin dose from 1800mg per day to 1200 and that was good.  The first few months I had lots of hair loss, which I found out from others is a fairly normal side effect and went away about the 4th month after starting.  

There is a Gilenya Support Group on Facebook if you want to check it out.  You are welcome to ask questions even if you haven't started it yet.  There are a lot of very helpful people in the group.  

As far as infections, I didn't notice getting sick any easier, but there is the potential that if you do get sick, it could be worse than normal.  I think Anne has had better luck in this area even though she has the 3 little ones.  Hope she will chime in when she see's your post.  

Again, check out the support group.  I think they will be happy to help with any questions you might have or if you just want to lurk that's ok too.

Julie

Lulu54 · Answer

Deb, those are good questions and I hope Ann and Julie see them and can respond.  I know from talking with Julie she feels that the Gilenya has made a major difference to her health. 

Lu

Deb61 · Answer

Julie, I have been praying for you while in the hospital, and I'm so relieved that you are feeling better.  I know this is very painful because I remember my grandfather many years ago having pancreatitis.  The pain was unbearable.  

I do have a question for you about Gilenya.  The doctor is considering this drug for me and if I don't have active TB and once I start on INH, I will more than likely start this medicine. 

OK, my question is about how you're feeling.  My neuro said that the two MS patients that he has is actually feeling really, really good.  Have you noticed an improvement in regards to strength and energy or anything else worth mentioning?  I guess this may not be a really fair question since you've just got out of the hospital, but thought I'd ask anyway.  

Ann, 
Have you noticed any increase in infections?  How are you feeling on the medicine?  I have been following your posts as well about Gilenya.  It's a huge decision for me (and it must have been for you, too).  I'm am trying to way the risk of infection with the good that the medicine brings to the table.  

Hugs,
Deb

Sarahsmom46 · Answer

I have been on it now for 9 months and have not had any more infections than usual.  In the beginning I believed that I may get sick easier while on Gilenya, but these past several months did not prove this to be the case.  There was some discussion whlie I was in the hospital about my getting pancreatitis, but the docs on my medical team all agreed that it was an infection that was bound to have happened anyway sooner or later.  I had my gallbladder taken out a year and half ago and the cause of the pancreatitis was due to a very narrowed bile duct and not a result from an infection.  So, Gilenya is off the hook on this one.

My WBC was lower than normal but again, I didn't pick up an infection even while in a hospital that we all know can be a petrie dish full of germs.  I do believe that if I get sick it could potentially be worse if my NK T cells don't kick in like they should in order to mount an attack on the bad guys.

Taking this drug is an individual decision as you have already seen from other comments.  For me, it was either Tysabri or Gilenya.  Tysabri is an excellent MS med and I'd like to keep it in my back pocket until I have no other options.

I think you doctor is wise to have you try a different drug beings you were recently diagnosed.  My understanding is that this is not the drug of first choice at this time.

I learned something else that is interesting.  A friend on the West Coast told me the other day that doctors out West are rarely prescribing it at all.  Getting Gilenya out there is very, very difficult. Not sure why though.  

Julie

Lulu54 · Answer

BC - it is very tempting to me to give up the injections but the risk of infection concerns me.  I work in a hotbed of germs (college campus!) and know that I need my immunity to stay UP!

sllowe · Answer

BeachC - Definitely not a dumb question! It's an excellent question!

My personal reasoning is that it's new, and the traditionals have a longer track record and I'm more comfortable sticking w/the injections for now based on that. .Later, I'll probably feel different.
-shell

beachcomber13 · Answer

Julie, my neuro was very hesitant to prescribe Gilenya. He will do it if I make a case for it or am adamant that I want it. He cited the incidence of infection as his primary reason against it. 

Any thoughts? And have you gotten sick more often since you started Gilenya?

Sarahsmom46 · Answer

I agree, that was not a dumb question.  As for me, I would never go back to needles even if my life depended on it. Gilenya has given me a lot of freedom the one most important is not getting injection site reactions anymore.  Future MSers will hear how we had to inject our MS meds and will probably consider themselves lucky.  Oral meds are the future and I'm thankful it was in my lifetime.

gmteach · Answer

I also attended a session by a neuro on the new medication - to me it sounds worth it.   I see my neuro in a couple of months and hopefully will beging the process of switching meds.   Good luck everyone

beachcomber13 · Answer

I see, that makes sense.

Lulu54 · Answer

gmteach, then it sounds like you would benefit by having this discussion with your neurologist and exploring all your treatment options.  good luck, L

gmteach · Answer

I still have side effects from the Avonex and lose an entire day on the weekend to being sick.   After working all week, it gives me a one day weekend.   I would be willing to take the chance with the pill (if there are no flu side effects) because at this point I am planning to stop the Avonex.

Lulu54 · Answer

BC - this is not a dumb question. But I would answer it with another question - why switch ships when the one you are on is keeping you afloat? If the injectable is working, would you want to risk switching to something that might not work as well for you?

beachcomber13 · Answer

This is probably a dumb question but...

Why isn't everyone switching from their injectables to a pill?

(see, I warned you)

Lulu54 · Answer

Oops! I have to go back and correct something I wrote here - now that I have reread my notes the incidences of cancer were not in the two patients - it was in two study rats who had been on mega doses of Gilenya, much greater proportion than a human would ever be given. I'm working on the G writeup now and will post it latter.

gmteach · Answer

I just heard of this drug and am looking for more information.   I have been on Avonex for 14 years and have decided to consider going off.    Has anyone started this drug?

Deb61 · Answer

It is odd that I just saw this message about Gilenya.  I just posted a question on a different thread because my doctor recommended this medicine at my last appointment; however, I have latent TB.

I will be starting INH to treat the latent (not active) TB soon.  The treatment takes about a year.  The question is would I be able to start Gilenya while on INH, wait until I'm through with INH treatment, or not even be a candidate to take this medicine at all?

Doll555 · Answer

Thanks Lulu. That makes me feel better about it. My neuro already sent me to eye dr to test for macular edema. I previously saw a cardiologist and pulmonolgist. My neuro has offered me Gilenya or Cellcept. Do we have members on Cellcept?

Lulu54 · Answer

I should have added there was more I learned and will write something in the next few days to add to this thread.

Lulu54 · Answer

Doll - we talked about your question.  During the clinical trials for Gilenya there were two people who developed melanoma (skin cancer).  It had to be reported even though it wasn't determined that it came from the Gilenya.  The neuro said the adverse effects part of trials include EVERYTHING - and gave the example that if a person had a motorcycle accident, that would be listed as an adverse event. 

There is standard screening that most neuros do before starting a patient on Gilenya and this is spelled out clearly in their materials.  Being checked by a dematologist for melanomas is one of those.

The other checks to be sure of monitoring side effects are
Cardiologist - to check heart before beginning Gilenya
Opthamologist -to check for macular edema which can develp with Gilenya
Pulmonologist - to check lung functions
And a check of liver enzymes.   

I hope this puts your mind at ease a bit,
Lulu

shermay · Answer

My Neuro also wants to put me on Gilenya - I have done research about this drug, but what I would really want to know what the s/e are? as they do appear to be a bit vague:/   as it my Neuro I might add!

I realise that not many members are on this drug, so I'm worried about taking this 'magic pill' that The Pharma is promoting.

Would you be able to ask this question?

Lulu54 · Answer

Doll,  I have not heard that one but will definitely put it on the list to ask.  Stay tuned for Tuesday's report.

Doll555 · Answer

Hi lulu. My neuro just pulled me off Copaxone and would like to put me on the Gilenya. I have more of a concern than a question. I have heard it can increase your chances of getting cancer. That really scares me. I can live with my MS, as difficult as it can be. Cancer is not a fight I want to take on.