All I can say is, thank goodness it is Friday! The shorter weeks seem twice as long as the normal weeks, for some reason. I sincerely hope that none of you live in Florida and for those of you who do, I hope you are safe. All I have been hearing about for days now, is the hurricane and how strong it is supposed to be. I mean, they are even talking about closing our office on Monday, and we are far from the coast in the Carolina’s. I do know that in 1989, Hurricane Hugo hit the Carolina Coast and caused a lot of damage to the area that I live in. However, Hurricane Irma’s path is going to hit Florida this weekend, so hopefully by the time the storm makes it to the Carolina’s we will just have a lot of rain and winds. My husband and I are definitely keeping all those that live in the islands and Florida in our thoughts and prayers.
As I mentioned yesterday, I got the green light to start the Tecfidera. I was debating all day if I was going to start the Tecfidera today or wait until the weekend, just in case there were any side effects. I decided that I was going to wait until tomorrow so if I do experience any negative side effects, I would at least be in the comfort of my own home and not at work. Now, I have the weekend for my body to start getting adjusted to actually taking medicine for the MS, as it has been two months since I have taken anything. I am not even sure I will experience anything with the first dose, but if I do I luckily I will have my husband to take care of me and listen to my whining! So, I can officially say that tomorrow will be the first day of my new journey with Tecfidera.
I would like to thank all of you that commented on my post yesterday. I received a lot of support and advice, which was so helpful. I know there is at least one person that will be starting Tecfidera in the next few weeks, so hopefully my exposure to this medicine will be able to help her as she starts it. This person will know I am talking about her and she has been so encouraging since I started this blog.
As always, thank you for reading my post. I appreciate all the encouragement and advice, y’all have been wonderful. I hope you have a nice and safe weekend. Please, if you live in any of the areas that are expected to be affected by this hurricane, get somewhere where you will be safe.
Always, Alyssa
Have a lovely weekend Alyssa 💛 Good luck with the Tecfidera- I only had flushing as a side effect and generally tolerated it very well, hope it is the same for you 😊 xx
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Thank you so much for sending me positive thoughts! I am glad to hear that you tolerated Tecfidera well! How long have you been on it? I took my first dose this morning with a piece of bread with peanut butter on it. The NP told me that peanut butter is good to help tolerate the medicine.
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Hi, I have been on it for a year but will be coming off as just been confirmed as having SPMS 😦 I find that as long as I ate well it is fine, I have porridge for breakfast and usually add some nuts 🙂 x
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I am sorry to hear this. Do they know if it was because of the Tecfidera that you now have SPMS?
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It wasn’t because of the Tec at all (reassuring hugs). I suspected I was from about 6 years ago (I was diagnosed when I was 15 in 1994!) and never should have been offered Tec, but my neuro wanted to see if it slowed progression (there is no proof it does). If I was RRMS I would definitely stick to Tecfidera as it was really well tolerated. Xx
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WOW, you were diagnosed with MS at 15 years old? And the doctor said I was young at 19. I hate that you are going through this now, but I know you are so strong and positive. What still shocks me it, there are so many different medications for MS but yet no cure. I think this disease is just frustrating because there are no solid answers to anything. I hope what they put you on now helps slow things down. Is there anything at all I can do for you? (Lots of hugs for you my dear)
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Thank you! Yes unfortunately I was diagnosed before any of the MS drugs came out and then they decided that I wasn’t ‘bad enough’ for meds so I’ve never taken anything except for the Tecfidera. Nothing proven to help SPMS yet but willing to try anything that’s on the horizon to be tested! Thank you so much 🙂 Writing helps, and ‘meeting’ other lovely MSers 😊
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Well honey, I will keep you in my thoughts and prayers. You are amazing and strong and you will get through this. Please always remember I am here for you. If you ever need to vent or anything at all. You can message me anytime and I will respond as quickly as I possibly can!!!
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Thank you so much! X
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My pleasure my dear!
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Hope it goes ok today. Let me know how you get on. xxx
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Thank you so much! I did take my first dose this morning with a slice of bread with peanut butter on it. So far, I am doing just fine. I will definitely keep you updated. I really have appreciated ALL of your encouragement and support! You are truly amazing!
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It’s not problem at all. Glad so far so good. The peanut butter has obviously done its job. 🙂 I love peanut butter too so am quite happy that’s what people suggest. 🙂 Hows today going? xxx
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Today is day 2 and I am still feeling a little bad. Yesterday, my stomach was pretty uneasy all day and my arms kept itching. Hopefully today will start to get better though. Staying positive is the important part! Thank you so much for asking how things are going! You are so wonderful!!
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I have heard that’s normal. My nurse said 3 weeks is usually how long is lasts but it then settles down. Some people are a lot quicker than that too! Are you on the half dose for the first week? xxx
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Yes, I am on the half dose. I am not looking forward to the full dose! That is what the NP told me as well, 3 weeks. I feel like it might be long 3 weeks. One person told me that stress can make the side effects worse. Lord knows I have had a lot going on in life, so I have been a little stressed. But, I am going to work on getting control over it. I felt terrible yesterday.
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The full dose shouldn’t make too much difference I was told. You’ll just feel kind of the same because your body will have started to get use to the medication. Stress is always bad for everything to do with MS! Find some nice things to do and look after yourself. Know you can get through it. xxx
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Thank you so much for your encouragement! I appreciate all your kind and supportive words! I know how bad stress is for people especially those with MS. I am trying so hard to keep myself distracted. I know I am strong enough to get through this, I am just feeling a little drained right now.
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It is hard, the more I tell myself not to stress because of the MS the more I stress about it….That’s completely understandable. But just remember you’re doing really well! 🙂 xxx
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Thank you so much! I think it makes it harder to not stress when people tell you not to stress. For me, that just makes it worse! It sounds crazy but, hey you understand me!
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I understand. I usually just have to do things that will distract me. Like a puzzle or read a book! 🙂 xxx
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I love reading but I have been unfocused lately. I started James Patterson’s book “Invisible”. It is pretty good but then I get distracted by something! Reading can be a good distraction from pain and what not but then I am so darn tired too. I hope you get to do something that will distract you today! Take care my dear!!
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Good luck
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Thank you!!
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