Gilenya Is Back!

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Monday 5What a way to start the week! It is official, I am back on the Gilenya. I had a doctor at my house a little before 9 am this morning and his assistant came a little bit after that. I immediately liked the doctor that came out, but could have done without the assistant! The doctor was a very sweet and gentle older man who both of my cats even liked. The assistant had a bad start because she got lost getting to my house, even with GPS, and was so frazzled she was just extremely abrupt. As I said yesterday, I was told all I would need to provide was a work space for them, which I did, but she thought she should be able to sit in the living room and watch TV. I never actually said no you can not sit in the living room just watching TV, I just said I was told to provide you a space that you could work in. She ended up being allergic to my cats and left for a few hours to get medication for it and then sat in her car until the last few minutes, which was really okay with me!

The first thing that was done this morning was, the doctor asked me a few question about any medications I was on and if I had any heart troubles. After that the assistant performed an EKG on me and did vital signs. Once everything checked out with the EKG and vitals, I was able to take the first dose of Gilenya. For the first hour and a half my vitals were checked every 30 minutes but then changed to every hour. During the course of the 6 hour monitoring I chatted with the doctor some. I found out that his wife has MS, he is working on retiring, he  once worked at the VA hospital and now works 2 days a week at an Urgent Care. The last part of the monitoring was one last EKG and vital signs. The doctor did have the assistant do the last EKG twice because there was one thing that he said was very active, but the second time everything checked out. Considering I was on this medication for 6 years before, I am really not concerned about any side effects or serious issues. I know that most antibiotics have an interaction and any vaccines can cause serious problems, but I know there is one antibiotic that is safe and I do not get vaccines or the flu shot as is so this will not be a problem for me!

In a way I am glad that I made the decision to go back on Gilenya because I was pretty much flare up free while I was on it previously! I really am hopeful right now that this illness will be under control and stop causing me issues. I do not know and no one can be sure if the damage that the new lesions has caused will get better or they are permanent, but I have to remain positive. I have always been so terrified of not being able to walk asPositive thoughts butterfly normal as I always have and needing some sort of assistance, but there really is no use thinking about any what ifs. I can be honest with myself that right now things are not as I wish they were because I have a lot of pain and my legs and feet do not want to corporate all the time, but there has to be a bright side beyond this cloud of darkness. Life is not always as we planned and there are times when adjustments must be made, but that does not mean weakness or suggest you should feel any shame, it is just doing what you have to do.

Right now I am planning to return to work on Thursday. But for the first two days I am only working 4 hours and next weeks hours will be contingent on how I heal. I know the Gilenya will not work magic in a week but hopefully continuing to be on it will be effective in my progression!

I hope y’all had a good start to the week and are having a good evening! I appreciate all of you that have been encouraging as I started back on Gilenya. I have received many emails allowing me to have great conversations with so many people! I do sincerely hope that my posts help you as much as your comments help me! Take Care!!!

Love 2

 

Always, Alyssa

19 thoughts on “Gilenya Is Back!”

      • Oh goodness, I am so sorry you have to do that this morning. I will be thinking of you! How long do you have to wait for results or are they instant? I know it isn’t easy, but try to stay positive and relax during those 4 hours! If you need anything do not hesitate to reach out to me. I am home all day, so I can respond to comments or emails pretty quickly!!!

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  4. I’m so happy to hear everything went well! I can’t imagine having two strangers in my house for that long 😳 I’m far too much of an introvert for that! But with health issues you’ve got to do what you’ve got to do, right?

    I hope this works for you and you’re able to go back to work again! 🙂

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    • Thank you Robyn! I am definitely an extrovert! I did really like the doctor but did not like or appreciate how the medical assistant was. I have always been a people person so people can really notice when I do not feel well. It is crazy how many people can tell!

      I am sure that things are only going to get better now. Gilenya did keep me flare up free pretty much for a long time!! I hope you are doing well and having a good evening!! Thank you for being so kind!!!

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    • I will do my best. Please keep in mind, this is my personal experience and I am not a doctor or any kind of medical professional. I have not had any rashes on Gilenya. Antibiotics and Gilenya need to be handled VERY carefully because there can be a bad reaction! I had a sinus infection a few years ago and the doctor order an antibiotic. When I went to get the prescription from the pharmacy, the pharmacist said there was a red flag and it was NOT a good idea to take the antibiotic. After that experience I now always check interactions between all medicine and Gilenya. The horrible thing is, one doctor actually saw the “red flag” with interactions and simply said if you have any breathing issues go to the emergency room. Are you still on Gilenya?

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  7. Hi there Alyssa, hoping all is well. I was just wondering if I can ask about something I read in your blog about Gilenya. Is it true most antibiotics can react with Glienya? If so I have never read anything about this and I have had a rash come up a few times and from memory I had had antibiotics at the time?

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    • Yes, it is true most antibiotics react poorly with Gilenya. If you need an antibiotic just always check with the pharmacist first. The pharmacists have way more knowledge about medications and the interactions. They take more precautions than the doctors do, well that has been my experience.

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  8. I understand it is fine, I am on Gilenya but they want me to change to Ocrevus because Gileny can increase BP, sugar and cholesterol and I have since had to have stents and a triple by Pass . Cardiologist is concerned the Gilenya is playing a role in the progressive Heart Disease I now have.
    I do usually check with the pharmacist re meds but I was t aware of antibiotics being of concern but thanks.
    I stopped theGilenya for a few days only ( was supposed to stop 6 weeks before starting Ocrevus) but I then read about Gileny Rebound Syndrome and I wasn’t prepared to take the risk.
    Thank you

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    • How do you feel about switching medications? I am just going to tell you what I wish someone told me, make sure YOU are comfortable with the medication you are on. It is your body and you know your body better than anyone else, including the doctors. Is Ocrevus what you want to be on? Has the Gilenya not been helping your MS? If you decided you did not want to switch, is there something the cardiologist can do for any heart issues? I wish you the best of luck! Just follow your heart and gut instincts, you do know what is best for you and your MS! Sending you love and comfort!!

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  9. Thank you Alyssa, and yes I’m not wrapped in the potential Side effects of the Ocrevus ( malignancies just one potential) the heart disease is quite serious and having a genetic pre disposition isn’t helping. Thank you again

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    • I do not know how much help I was, but you are quite welcome! Dealing with medications and MS are so difficult and a little frustrating. I wish you the best luck! Please know that I will always be here for you if you shall need to vent or want to ask me any questions!!!

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