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.