Effects of Gilenya

[catmama]

Hi all,

I have been on Gilenya since February 10, 2012. I have reached a level of frustration that has just about caused me to give it all up.

First, I have been going back and forth between Novartis, NORD, Express Scripts and Anthem to try and decern who is supposed to be assisting me with my co-pay. Just going in circles at this point.

So far the side effects that I have experienced are massive diarrhea, daily headaches, nausea, blurred vision, as well as an episode of blindness (apparently related to migraine and not macular edema), chronic cough, 2 ear infections (new to me at the age of 48), dizziness, and what feels like an increased weakness and parathesis in my legs.

I went to several of the Gilenya classes and heard nothing but rave reviews from the Gilenya patients who spoke at the classes. "Life changing" and "Has dramatically improved my life for the better" are just a couple of the comments that I heard. Of course, I have tried to contact my Neuro at UCSF, as well as both of his assistants to discuss these side effects, with no return follow-up, but to be honest, I felt a hell of a lot better before Gilenya.

I should mention that I have PPMS and was willing to try it anyway, hoping for a positive outcome.
I know that stopping G is a personal decision, but I'd still like some input from those of you on G and/or those of you who were on G and chose to discontinue its use, i.e. reasons, side effects you may have experienced, etc.

Thanks so much,
Cat

[catmama]

Let me add....

Let me add to my earlier post the additional symptoms of severe fatigue (worse than before G) an increase in cognitive difficulties, especially word finding and memory.

I also suffered from Rosacea which I was finally able to get under control after many months of a low dose anti-biotic, then since starting G, has come back full force and much worse than before.

Thought I'd throw those in also

Thanks again,
Cat

[batman12]

Sorry to hear that you are having such a rough time.

I have been taking Gilenya for just over a year now - I had some chest pain when I started but other than that I have had no side effects, relapses or progression

[Nick]

Gilenya and PPMS

I too am very sorry to hear about your experience with Gilenya. If I may ask, how did you Catmama, get prescribed Gilenya when you have PPMS?

The FDA has only OKd it for RRMS and most or all insurance companies won't pay for it if prescribed for other than RRMS. And most doctors won't prescribe it for an unapproved use. I know this because I am in a clinical trial for Gilenya and PPMS, although in my case I don't take the medication (long story there).

[catmama]

Gilenya Rx

Hi Nick,

Great question! I actually go to a university teaching hospital here in California, and my neurologist likes to think, "out of the box." In fact, I just arrived home from an appointment, where this subject came up. Several of the neurologists prescribe Gilenya as well as some of the other meds deemed "approved" for RRMS only to their patients after individual evaluation.

For me, I approached my neuro about participating in the trial, but then decided myself that I just wanted to start on Gilenya rather than wait for the trial results. My thinking was, I don't want to wait another 2 or 3 years to find out that I would have benefited from taking it years earlier. Another reason was that I didn't want to risk being given a placebo either. If in the future it's determined not to be benefial for PPMS, and my status supports that finding, maybe I'll stop it, but as long as I can tolerate it and there's a slight chance it may be slowing my progression, I plan on sticking with it.

Now as far as insurance goes, no where in my neuro chart does it read which type of MS I have. I am always very careful when visiting other physicians or with my physical therapist, that I say, "off the record" or "don't record this" before I mention that I have PPMS, because there is always a paper trail somewhere. Basically, I use the, "need to know" attitude. It is so unfortunate that we must do things like this in order to obtain medications or procedures, but I'll do just about whatever I can to help myself.

I've probably provided way too much info for you, but I hope it helps with your questions.

Take care,
Cat

[catmama]

Update on the horror story....

For those of you who read thru my first couple of posts, I want to provide an update on Gilenya.

Back in the early days of my diagnosis, I underwent IVSM 1 GM, on several different occasions, and finally underwent either a 3 or 5 day run (can't believe I'd forget which!) of IVSM, that I did not tolerate very well. It took me almost 6 weeks to recover from the weakness, fatigue, blurry vision, etc.

Now fast forward to mid April and early May, at which times I underwent a steroid injection (intracapsulary under fluoroscopy) to my shoulder and an epidural steroid injection to C4-5 and C6-7 for neck pain.

After putting my nurse's brain to work and confering with my neurologist, it finally struck me, that what I thought were side effects from the Gilenya, were most likely the side effects from the steroids. Didn't tolerate them back then and don't tolerate them now(can't believe I would have ever forgotten those days, but thanks MS for deleting those memories )! Seems as though "roids are roids" no matter what there name is or where they're put in your body ! Some of the problems could be related to the Gilenya, but as I write this, the things I described previously have improved quite a bit.

So my apologies to anyone I may have scared away from Gilenya!

[onlyairfare]

I am surprised that you encountered any doctor other than a neurologist who knows that there re different types of MS.

None of my doctors other than various neurologists or neurosurgeons or neuro-oncologists has ever asked what type of MS I have.

[catmama]

I've always been asked....

Hi onlyairfare,

Even my dentist asked what type of MS I have. I think it may have something to do with them having a friend or a family member with MS. Seems as though they always know someone who has it. I have had to explain the significant differences between the types of MS a couple of times, but that's about it.

Recently I have had to explain how Gilenya works, because, with the exception of my neurologist, most have never heard of the drug. I just carry the prescribing info around with me, to point out different possible side effects that they should be aware of.

An example of this is that several weeks ago I lost the vision in my right eye, of course, my initial panic was that I had developed macular edema from the Gilenya, so when I ended up at an emergency eye clinic for evaluation, I just said my part and handed the on-call doc the prescribing info and pointed out the macular edema section. He went right to work on the appropriate eye exams to rule it out immediately. Turns out it was migraine aura (my 1st aura) and not anything to do with the Gilenya.

I just try and educate as many people as possible with whatever info I have.

[onlyairfare]

That is interesting, thanks Catmama.

I will be starting Gilenya soon and I have my eye exam tomorrow. I'll see if the ophthalmologist asks about what type of MS, what is Gilenya, all the rest. I also will be seeing a new PCP in a few weeks because I moved to a new state, need a new primary. I'll see how familiar she is with MS.

I don't know much about Gilenya either. When I had to go off Copaxone due to the cost I quit reading anything about DMD's. Now I have better insurance, so I will get back on board.

[Cameron]

Gilenya

I started Gilenya last August. At first I had the same side effects as with Avonex. Low grade fever, muscle aches, headache, minor flu-like symptoms. By November I had lost 12 pounds and was having dibilitating panic attacks and hallucinations. My husband and I went to Hawaii in December. While there, I started having more visual hallucinations. When we returned home, they were not only visual they were also audio hallucinations. My sister is a pharmacist and said to stop taking it.

I saw my neuro and she said it was because of depression. I've searched everywhere about hallucinations and cannot find anything about depression and hallucinations. By the way, I am on Cymbalta. I'm still having hallucinations but that's the least of my problems. Now my heart rate is out of control.

I quit Gilenya in March and now I'm on 3 different kinds of blood pressure medications and have been hospitialized twice for my blood pressure. It is either too high or too low. They can't get it regulated. I believe the Gilenya is to blame for all my new health problems. I've had MS for 20 years and have never felt so bad in my life. My family says my personality was that of a different person while on the Gilenya and they said my voice even changed to that of someone they did not recognize. So glad I quit.

Just wondering if anyone else had had anthing like this happen to them while on the Gilenya?
Cameron

[catmama]

To Cameron...

Hi Cameron,

I am so sorry to hear that you are going through this. I have not had any experiences like you describe from Gilenya, Cymbalta yes, G no.

I had what you describe, with the exception of hallucinations, all from Cymbalta, a horrible side effects, including the cardiac problems, but mostly the mental side effects, i.e., worsened depression, anxiety attacks, severe change in mood, and just what I would call the zombie feel.

Cymbalta works in the central nervous system, while Gilenya works on the lymphatic system, so medically speaking, I can't see the connection between G and hallucinations, but I am not a medical doctor, but a longtime RN.

Obviously, I would discuss this with your neuro or psych doctor if you see one, and I would do this immediately.

My other suggestion is that you post a completely new thread about this, and title it "Gilenya and Hallucinations?" My thread has been posted for a while, so many may not be reviewing it any longer. I think if you posted a new thread as I have suggested, you would get a much greater response to your question.

I hope everything works out for you, and hang in there, and I definitely feel your pain, I couldn't get off of Cymbalta fast enough, it felt like poison to me. Obviously, we all react to meds differently, but it was not the drug for me.

Best wishes