Gilenya

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  • For me sometimes. A few weeks ago I started having trouble sleeping. I got valium and my body clock reset. I felt like Superwoman and resumed normal activities. Now I'm back to my tired old self:(

    I tried Nuvigil last year , but it causes me night time insomnia , something I try to avoid like the plague! Unlike other MS'ers I am unable to nap during the day.

  • Hi Karen, I have been on gilenya since 2008 and I am not having any problems. I have not had a relapse since then either.

  • It only just got FDA approval , were you on a drug trial?

  • Yes, I was involved in the clinical trial.

  • I wanted this pill. however, about 3 days after I requested it, I had my first flair and was unable to take the new oral med. I am so sad. I lost my job as an RN . You cant drive, you cant work as an RN, and I was a Hopsice Nurse. Life seems pretty grim righty now. Sorry for my pitty party. Every thiny was going so good . bless all of you! Karen

  • I understand...I worked in research for 25 years and within 5 days...NO CAREER, unable to walk, talk or write. It was a long road, I had a wonderful support team in my family and friends. See if you can start Gilenya once you are released.

  • My mom is going to start Gilenya in March. I am very worried for her. Can someone please give me a little more information. My mother has a walker, can't drive, had to retire, etc.. Does Gilenya help w/ walking or any type of mobility, or does is solely help with relapses? And are there any success stories or blogs that I can read about?

  • Here's what I got from wbmd , a great resource for all things health related. I only pulled the info on what Gilenya is and what it does. I'm going on it myself. I'm getting more brain lesions while on Copaxone. My doctor is recommending this drug for me , he's already following 4 patients on Gilenya and they are doing well. I'm not sure if the drug reverses any MS damage , but it does better at reducing lesions.

    Gilenya treats the relapsing form of MS. The drug significantly reduces MS attacks. However, it has serious side effects, with possible heart, lung, and eye toxicity and increased risk of infection. Patients must be closely monitored, and regular eye exams are advised.

    In MS, white blood cells attack the myelin sheaths that protect nerve cells. Gilenya, the first drug in its class, keeps white blood cells penned up in lymph nodes by taking away the chemical key they need to unlock the lymph node door.

    Fewer white blood cells mean fewer MS attacks. But it also means less protection against infections. Novartis will set up a careful program for educating and monitoring patients taking the drug. Moreover, the company will continue long-term studies to look for side effects that may occur with longer-term use.

    Gilenya was invented as a new way to prevent rejection in kidney transplant patients. But at the necessary dosage, the drug was far too toxic. The dose that would be used to treat MS is five times lower than the lowest dose tested in the transplant studies.

    Even at this dosage, Gilenya can have severe toxicity. In clinical trials, side effects linked to Gilenya included:

    Elevated liver enzymes

    Macular edema (swelling of the central portion of the retina, causing distorted vision)

    Elevated blood pressure

    Shortness of breath

    Bronchitis

    Diarrhea

    Bradycardia (slowing of the heartbeat, seen only upon first treatment. The FDA panel recommended that patients be required to receive their first dose under medical supervision).

  • thank you so much,this info has helped a lot.

  • I started Gilenya last December & thought I was doing great. Started having an exacerbation about a month ago but trying to ignore it.

    Has anyone experienced depression while on Gilenya? I am prone to this and have been struggling the last few weeks. Can't tell if it's emotionally or physically related. Maybe just upset that I wanted this to be the miracle drug since it's my only choice. My skin & heart react to Copaxone, Avonex affects mental state, LOVED Tysabri but my body built up anti-bodies to it after 3 yrs. Love just taking a pill each day but worried about my mental health......

  • Here are the side effects of Gilenya:

    Elevated liver enzymes

    Macular edema (swelling of the central portion of the retina, causing distorted vision)

    Elevated blood pressure

    Shortness of breath

    Bronchitis

    Diarrhea

    Bradycardia (slowing of the heartbeat, seen only upon first treatment. The FDA panel recommended that patients be required to receive their first dose under medical supervision). Some of these side effects can be pre existing medical conditions. To rule out some of them , pre screening tests are required. I aced all mine , so I'll be starting Gilenya next week.

  • I started Gilenya 6 weeks ago and since last week the tiredness and generalized pain have increased a lot. These are symptoms that I've always had like the infamous "pseudo-attacks" (hate that name). But my real "attacks" last for 4-6 weeks. So I really hope and pray this is not the beginning of another one because changing back to Copaxone is not an option. And Nuvigil is not doing anything right now to overcome these symptoms.

  • Hey everyone, I am just diagnosed and really want to take Gilenya, but my insurance only covers 75% making it an unaffordable ~900$/ month? I am going to call the company itself today? Are there any other places I can call to make this affordable?

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