Observations about Gilenya

Gilenya

24 February (almost one year!!)

Things are going well. I still have the occassional mouth or tongue sore. I am learning to manage them more effectively with Lysine and UltaClear.

– I had a cold for two weeks, but almost everyone in my office had the same cold, and it lasted about the same amount of time for them.

– I am still going to acupuncture, which I believe is helping tremendously. I was originally going once a week, and I have now switched to bi-monthly. My acupuncturist says that I am doing much better than when I started seeing her about 6 months ago! I highly recommend trying this approach if you haven’t yet. Their ability to decrease and manage pain is incredible.

– My Novartis support is about to run out this month. I’ll have to start paying $200/month for Gilenya.

– This week I started working out again. I have gained weight since starting Gilenya…about 15 pounds. Not blaming it on the medication, just an observation. I have very little, if any back and neck pain. I would like to lose 20 pounds by summer…I have joined SparkPeople an awesome, fun, and free weight loss site online! Feel free to “friend” me under the name LoriHawks522, I’d love to be your SparkPeople partner 🙂 www.SparkPeople.com

13 September (starting Month 7 on Gilenya)

– I have noticed that there is not as much to report…not sure if this is a good thing? I feel like the immediate relief and symptom changes has slowed considerably, and I am pretty much at a stand still. I would like to say I’m symptom free, in remission, but I can’t say that confidently. I am due for my 6 month follow-up appointment with the specialist early in October. I will be having some blood work done before my appointment, specifically my CD4 count and a couple of additional tests in that area.

– I have stopped taking the Zonigran due to extra fatigue…I will revisit this when I see the specialist next month.

– I have stopped taking Ritalin LA – I have less overall fatigue on a daily basis. A cup of coffee in the morning is pretty effective. I still get the afternoon tiredness around 2-3pm, but I have been able to manage that more effectively since the detox diet. I find that if I save some of the protein shake for that time of day I am better able to manage fatigue and hunger through the rest of the day.

– I completed the three week detox using Clearvite, and I have transitioned to a once a day maintenance shake by UltraClear. I like having a consistent nutritional supplement, and I believe it’s helping with fatigue and hunger/cravings.

– I am continuing on the gluten-free, dairy-free, corn-free path. I remember reading no corn and thinking it was strange on the detox list. But once I started reading product descriptions, I realized why…corn products have saturated the market. It is close to impossible to buy packaged foods without corn-something listed as an ingredient. This was very telling. I have “cheated” on the diet a couple of times since the end of the official three week detox by spluring on pizza. One of those times was on 9/11, when I fell. I definitely feel more lightheaded and shaky when I consume dairy products. Pizza is delicious…but…My other splurge has been alcohol – two drinks for my birthday, two drinks the weekend before. The ensuing headache was not worth the drinks. I had a horrible headache and nausea. This had not been the case before the detox. Also, I used to prefer drinking beer – I had no idea that the gluten was having such a negative affect on my body. Now if I do have a drink it’s either wine or a vodka soda.

– I have continued to visit the acupuncturist – Healing Point in RI – weekly. I believe it has been extremely beneficial. I have not had any mouth sores since my last outbreak. I used a Chinese herb mixture with vinegar on the bottoms of my feet – the sores were gone in 24 hours.

– I have stopped taking Valtrex daily. I have been taking Lysine daily to prevent mouth sores from returning. It is an over the counter amino-acid. I also take two Fish Oil capsules daily.

– I want to increase my physical activity. I reached my highest weight ever 4 weeks ago. Since then I have lost 5-6 pounds eating better, and using UltraClear in conjunction with WeightWatchers online. I am still 18 pounds from my goal weight. I really believe that Gilenya has played a role in weight gain. I have gained 12 pounds since starting the Gilenya. That’s a lot over a 6 month time span.

8 July (starting Month 5 on Gilenya)

– Eczema is pretty much non-existent :) Have been taking probiotics once daily for eczema and digestive health.

– Colds and coughs have gone away … weather? Or just used to the medicine?

– Hair loss seems to have decreased and is almost back to normal.

– Heat seems much more bearable than last summer, humidity is still difficult, but still tolerable in comparison.

– Adding Zonigran to the mix at night seems to help with sleeping and has decreased pain in my back and neck!

– Missed two days of Gilenya due to inept doctor’s office – I no longer am a patient there … I was more tired for those couple of days, but I was also very stressed about getting the medication and dealing with insurance.

– I have had mouth sores on and off for the past two months or so. My new doctor has put me on a daily dose of Valtrex to prevent a reoccurence of Shingles (which I had before being diagnosed in 2006) and additional mouth sores. He suggested that all people taking Gilenya may benefit from a daily Valtrex dose.

19 May (Week 10 on Gilenya)

– Eczema on my face is still minimal, but there is more on my arms, back, shoulders

– I have my third cold/cough since I’ve started the medication

– I have just started noticing hair loss (see my post titled No Stranger for a glimpse)

– The weather has been horrible, which I believe has been affecting my symptoms

– I have felt more tingling in my left leg this week

– Sleeping is difficult on and off, but may be stress related more than medication related

1 May 2011 (Week 7 on Gilenya)

– Eczema on my face has cleared up nicely with Eucerin cream. Relieved because I felt like a snake-face.

– Today I took two long walks. It was awesome! Plus I have been doing push-ups and sit-ups without my back or neck hurting me.

– I slept well for the past three nights. I have been taking a Benadryl before bed if I am not sleepy.

– Taking probiotics for digestive system. It seems to be helping a lot.

– I have much less fatigue, and my pain is so, so much better.

– I still have some slight tingles in my legs, and my right hip was sore after my second long walk, but much better than in the past.

27 April 2011 (Week 6.5 on Gilenya)

– The slight rash has morphed into Eczema. I have it on my arms and face. It is a bit itchy and irritating, but seems to be nothing more. This has lasted for about 4-6 days so far. I have purchsed all natural face wash and all natural eczema skin cream to treat it.

– Sleeping has become difficult. But not really in a bad way? I used to sleep 8-9 hours a night before Gilenya, waking only slightly rested. When I started Gilenya I slept 10-12 hours a night, and still felt tired. Within the last week or so, I have started sleeping only 3-5 hours a night. But I am not really tired once I get up. I have energy and a relatively high focus without taking additional medications to help with fatigue.

– I have been having some slight chest “twangs” as others have called them. Nothing very significant, but I can feel them for 1-2 hours after taking Gilenya sometimes.

– My right finger got a bit numb last night. This was a new symptom that I haven’t noticed in a long time, if ever. The right side of my body has been more severely affected by the MS. This morning my finger was no longer numb.

– I used to have lots of nightmares, for as long as a I can remember. I tried Ambien for a couple of years after my diagnosis, but it left me tired and dreamless all together. With Gilenya my dreams are strange still but can’t be classified as night terrors. They are “happier” and more “normal”.

21 April 2011 (Week 5 on Gilenya)

– Benadryl + Gilenya = way more tired than I remember being before when I have taken Benadyl?

– Gilenya + wine = hangover…whereas Gilenya + beer or Prosecco is not nearly as bad?

– Slight itchiness of skin…chest & face area has continued for about a week now…

– Less back and neck pain each day

– Eyes are still blurry, hoping for improvements in this area

– Less tingly legs, feet, fingers

– Have not lost or gained weight (lost 2 pounds, gained it back)

– Overall sleepiness (sleeping 10-12 hours at a time) has subsided. Back to sleeping about 8-9 hours, sometimes less.

– Have gotten 2 colds with sore throats, slight fevers, and coughs since I started…nothing serious, but probably connected to Gilenya

– Noticed tingly tongue during my early days, that is gone now, and so is tingy/numb face which happened during the same week as the tongue

– Now that sleepiness has worn off, starting to crave Ritalin a bit more…I took it today, and it really helped, but overall I seem to focus better and “need” it a lot less

– I have been having some night sweats lately, which may or may not be related : )

– I have always craved sweets, so I can’t really comment on whether that has increased or not. My appetite has pretty much stayed the same since I started it. I think I was a bit less hungry during the first week, but I was also very anxious about starting it.

– I have still been working out 2-3 times a week. Swimming seems to be best, especially with day-after soreness, but I am still adjusting to exercise.

– I have not noticed any hair loss. I did lose lots of hair when taking Copaxone.

– I have had more breakouts, which I have treated with Proactiv…others have reported this side effect on the Gilenya Facebook page.

– Pain from Gilenya “working wonders” is much different than MS pain. I can tell when it is the drug and when it is a lesion acting up.

– I had random shooting pains in my right leg in week 2, this lasted a few days, and resulted in my leg no longer feeling stiff and/or numb.

– I still look forward to taking the pill each day, and I really like the packaging…As you can see, I clearly label it each month.

– I have had some chest pressure, but mostly during the first week. Otherwise, it has been barely noticeable.

– I did have distinct hot flashes during the 2-3 weeks with some chills…hot flashes seem to have passed, but I still get the chills now and again.

9 thoughts on “Observations about Gilenya”

  1. Plays With Strings said:

    I stumbled upon your blog while Googling Gilenya, and reading your experiences gave me a lot of hope. I’m 34 years old and, after a battery of tests that ran the gamut from MRIs to spinal tap, was diagnosed with relapsing-remitting MS two weeks ago. I’ve been seeing an MS specialist since August of this year, so I had a bit of time to prepare myself for the eventual diagnosis and research available treatments. As such, when my neuro broke the news to me, I immediately told him that I want to go on Gilenya. He was very supportive of my decision and agreed that it’s the best course of action for me. A week from today, I go for my final test before my first dose is scheduled. That day really can’t get here quickly enough!

    A couple of questions…I’ve read on a few message boards that relief is noticeable soon after starting Gilenya – has your experience been indicative of this? Also, you’ve mentioned brain fog in your posts. Does Gilenya do anything to alleviate it? I’ve had brain fog for the past few weeks, and it’s absolutely the worst!

    Thank you for the inspiration!

    • Hi there! So happy to help 🙂

      It is wonderful that you can start with Gilenya in my opinion! My MRI after one year of Gilenya showed zero new lesions, so it’s been my best medication by far! Yes, I did experience immediate relief from some side effects, such as pain in my right leg. I also have experienced much lower levels of fatigue. It is much more manageable now, and there are days when I don’t think about it at all 🙂

      The brain fogs have also cleared. I still have them now and again, especially when the weather is foggy or very humid, but overall they have decreased and improved!

      I’d be happy to answer any additional questions you have. I’m have to provide you with hope, as I know how much you need it right now.

      I am still plugging away at writing my book and hope to have a full manuscript completed by next year 🙂 there is just not enough out there about MS for those of us in our 20s and 30s.

      Warmly,
      Lori

      • Plays With Strings said:

        Lori,

        Thanks for the quick reply! I was having a conversation with my wife last night and it hit me that just a few short months ago, MS wasn’t even in my thoughts. Now, it’s what I think about most. Then again, I’m sure that it happens to everyone when they receive their diagnosis. My neurologist is a well respected figure in the field of MS, who frequently gives lectures to new generations of MS specialists. When I first met with him, he told me that MS is no longer what it used to be just a few years ago, especially with the new class of treatments (Gilenya, Tysabri, etc.) that are available now. He confirmed that my diagnosis came very early in the process, which provides a significantly more positive/promising outlook.

        I am very impressed with how quickly research has been progressing over the past several years. With BG-12 nearing FDA approval, I can only imagine what else will be available in the very near future!

        I’ve added your blog to my favorites and will keep an eye on the progress of your book. It’s nice to be able to avoid the gloom ‘n’ doom of various online forums (it seems that individuals whose experiences have been successful don’t bother joining forums) and talk to someone with real experience!

  2. Plays With Strings said:

    Lori,

    Happy New Year!

    I’ve cleared all the tests for Gilenya and will be taking my first dose this Friday (January 11). Any suggestions/warnings as to what to expect during the 6 hour observation and the remainder of the day? I’m scheduled for 8 a.m., so I should be done by 2 p.m. Would you suggest limiting physical activity for the rest of the day? I play guitar in a rock band (hence “Plays With Strings”), and we normally rehearse on Friday evenings. From your experience, do you think my energy levels will be at a reasonable enough level to rehearse?

    Sorry for so many questions! I’m anxious to get started, but I have no clue whatsoever as to what to expect!

    • Hi there! WOW! January 11th is tomorrow!!! I’m glad that I caught your note in time to reply 🙂

      First, yay!!!!

      On my day of dosage I was done by 2pm as well. I had planned to stay at the casino in CT (which just so happens to be right near my doctor) for the night. I wasn’t sure how well I’d feel to drive back to Newport, which is about 90 minutes away. My husband and parents were with me, and we got lunch (although I wasn’t that hungry) and then went to the casino. I think that being distracted for the rest of the day was brilliant. I can talk myself into a panic better than most people. So being active, but not too active, worked really well. I would guess that being in your band would be similar. My heart rate did drop a bit during the observation and I had a bit of a headache and light-headedness, as I noted in my blog. So I would say plan to continue your day as usual with your band 🙂

      I am so excited for you. Please let me know how it goes! I am still writing my book, and I’m keeping it lighter than what you typically read about MS because as you rightfully said, it can be SO depressing, and even inaccurate. It doesn’t have to be all doom and gloom!!

      My plan is to have my book completed in 2013 and to self-publish it to Kindle and Amazon 🙂

      Warmly,
      Lori

  3. Plays With Strings said:

    Lori,

    Today marks my 4th day on Gilenya! During the 6 hour observation, I also experienced the heart rate drop (by about 5 bpm or so), which is in line with what has been reported by many Gilenya users. However, the difference between the way I feel now and the way I felt before is absolutely drastic.

    My symptoms were very minor to begin with – the most noticeable being brain fog and tightness in my fingers – and both are almost completely gone. After the first dose, I’ve noticed that I’m a lot more alert, on point, and able to concentrate effortlessly; in other words, I’m back to my old self. The tightness in my fingers (a big no-no for guitarists) has been replaced by mild tingling, which has been decreasing progressively for the past 3 days. The mild numbness that I’ve experienced in my left leg is gone. This symptom has been an extremely mild annoyance more than anything else, but the fact that it’s no longer there is certainly the icing on the cake!

    So far, the only side effect that I’ve noticed is a feeling that can best be described as something similar to coming down from a marijuana high (in the interest of full disclosure, I haven’t smoked pot since my mid-20s) and lasts for about 2 hours after taking the pill. I attribute it to my body getting becoming accustomed to Gilenya and hope that it will go away eventually. In fact, it seems somewhat less noticeable this morning that it did over the weekend. Either way, this is not a deal breaker by any means. While it may be too early to say with certainty, as I’m cautiously optimistic by nature, it sure seems that this little pill will work wonders!

    Keep plugging away at your book. I’ll be a first-day buyer!

    • I commented below and not sure if you’ll be notified of it. But I wanted to be sure you saw it, as some of my thanks for the hope go to you. All my best as you continue your MS journey.

      • Plays With Strings said:

        Carey,

        I did get the notification, as I subscribe to this thread. It’s been 2 months since I started Gilenya and am very impressed with the results. I feel great! I’ve had no noticeable side effects, other than a cold that I’ve had for the past 2 weeks. I’m not sure if it’s Gilenya or the weather. One way or the next, what’s a minor cold, anyway?

        I wish you luck and hope that Gilenya works for you!

  4. I love reading this. I have my first dose tomorrow and cannot wait to start feeling relief. Thank you for the hope. While also cautiously optimistic, I am excited to start this part of the journey.

    Thank you, both Lori and Plays with Strings.

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