Crazy decisions and side effects!

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side effectsI have always thought it was a little crazy and extremely frustrating that medications meant to slow the progression of illnesses down, are accompanied by a long list of possible side effects. I know that the Gilenya I take daily is supposed to slow the progression of my Multiple Sclerosis, but it has a really LONG list of potential side effects and at one point that was what pushed me to want to make a change in my treatment plan.

The middle of last year I was having so many issues with terrible sinus headaches and migraines that I wanted to find out what was causing them. After reviewing what side images (2)effects Gilenya posed, I saw somethings that were common was headaches and sinus troubles. I was not just looking the side effects up on Google, but I was on Gilenya’s actual website, so I took this very serious as I am sure most people would. I went to my doctor with these concerns and she pretty much dismissed my thoughts claiming that it was not all that common with this medication and that I shouldn’t be doing this kind of research because it was “false” information. I argued back asking how it could be false when it was on the manufactures real website!? Of course I was frustrated that my valid concerns regarding my health was being ignored and not even willing to discuss more at that oral_therapy02time, so I decided to ignore her medical advice and demanded that I try a new medication immediately. It wasn’t until I told her there was another oral medication I read about that I thought would be better for me she finally decided it was worth her precious time to have a conversation with me. She tried her darndest to use the fear tactic, which of course wasn’t working well with me and only caused me to question her logic further. I know it sounds crazy, but I was completely convinced that she was receiving kick-backs from the drug company and me not changing medications would continue to be financially beneficial to her.

In preparation to change my treatment plan from Gilenya to Tecfidera I discontinued the Gilenya last July. I was required to be off medication completely for 6 weeks, so all the 51WIQmA-fnL._SL1000_Gilenya I had taken needed be out of my system and allow the Tecfidera to be able get into my system. In early September I started on Tecfidera which again is an oral medication. During this time my MS did not get better, but much worse! I guess MAYBE the doctor was correct when she said Tecfidera wasn’t going to be strong enough for me or maybe I had the nasty relapse because of ALL the stress I was under. I was so worried about the headaches and the fact that Gilenya could have been the cause and then even more concerned that my MS was progressing way too soon in my life. Whatever the cause was the MRI I had in early October was HORRIBLE, landing me right back to the drug I was convinced was causing my headaches!

It still doesn’t seem fair to me that we have to make the decision if we would rather deal Gilenya+Fingolimidewith the side effects of these so-called helpful drugs or be disabled. As difficult as it is to deal with the massive headaches/migraines, I would much rather deal with them rather than lose my normal abilities, like walking without assistance. I still do not think it is right for anyone to have to make a decision like this, but I guess it is what it is!

I have been back on the Gilenya for a little over a year now and I do still deal with sinus trouble and migraines, but at least the MS hasn’t to have progressed. I do think that until there is a cure for MS, which I must believe will happen in my lifetime, I will not be changing medications! Now that my husband and I have completed our move, I am ms-research-2013-6-638searching for a new MS Specialist, who will hopefully be more knowledgeable and have much better bedside manner. I know I have already shared this with y’all, but I am NOT a fan of my previous specialist. As crazy as this may sound, I want a specialist that is an older gentlemen because I have found they are more understanding and considerate. Of course going with an older person, I run the risk of them retiring, like two of my previous specialist did and I absolutely ❤ LOVED❤ them! I am sure that with the determination I have, I will find one that is best for me and my personality. I guess it shouldn’t be as important to have the warm and fuzzy with a doctor as it is for the doctor to be knowledgeable, but I need to feel comfortable with them in order to trust the doctor.

I always appreciate you taking the time to stop by my site today and I always love reading your got-hope1comments! I hope y’all are having a nice weekend and you are feeling as good as you possibly can! I must say having a long weekend is absolutely wonderful and I have been able to rest, but still do things that needed to be done! Please never forget that I am always sending y’all LOTS of ❤ love, comfort and many positive vibes!

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❤Always, Alyssa❤

33 thoughts on “Crazy decisions and side effects!”

    • Thank you Meg! I know that MS does contribute to the headaches, but the medicine I have to take might add to it. I am VERY determined to find a better doctor, but it is so hard finding a MS Specialist because there doesn’t seem to be many. I hope you are having a nice weekend! I really appreciate your kind comment!

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  3. Sounds like a good plan to seek out another specialist. I suffer from chronic back pain and the anxiety that comes from it. I have found that the stress of it definitely causes our immunity to be compromised. I started having allergy problems after the back injury. It’s due to the stress.

    However, I have found that zinc and vitamin d3 really boost the immunity. I didn’t have much of allergies for the past 7 months.

    Now, that the weather is changing, I’m finding some allergies creeping up but claritin or benadryl help.

    I know Montel Williams swears by medicinal marijuana. He stopped taking meds and simply uses the cannabis.

    In fact, cannabis is used for so many stress and chronic illnesses. It’s just too expensive over pills.

    Fyi there are doctors that do get kickbacks but a lot of them been busted.

    Be well, xo Emma

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    • Thank you so much Emma! I am really sorry you deal with chronic back pain and anxiety. I know it isn’t easy as my back hurts ALL the time as well. I know without a doubt that anxiety and stress make the pain so much worse. I am doing the best I know how to control my stress/anxiety, but I tend to fail at that.

      I take vitamin D3 everyday and found that it is helpful. The medication I take for the MS makes my white blood cell count lower, so the vitamin D helps a lot with that. I haven’t ever taken zinc though, maybe I should try that!

      Montel Williams is brilliant, but unfortunately the state I live in will not approve medical marijuana, even though it is legal in more than half the states. I have heard from numerous people that it is very helpful. Maybe someday, the state I live in will get with 2018 and allow this!!

      I am so thankful that you made the comment proving my theory that doctors do get kickbacks! I was completely convinced that my doctor was getting them, at least from the Gilenya company. She also pushed a new medication pretty hard on me. I kept refusing because I am so uncomfortable with infusion type medication because I did try that type once and was sick for several days after each infusion.

      I really appreciate your amazing comment Emma and I hope you are having a nice weekend! Please always stay the wonderful person you are!!!

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    • You are far too kind sweetie! I really do appreciate your comment because you did make me smile! I am so happy that my post made you smile!! I honestly do think the medicine I am taking is helping the MS, but I wish it didn’t have so many side effects. Honestly though, the side effects are easier than that “what if’s”. I hope you are having a nice weekend and feeling well. Again, thank you so much for reading and making a comment on this post!

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  7. Hi Alyssa, I don’t have MS but I do take awful medications (infusions) for sarcoidosis. I also have to deal with neurologists because it’s mostly in my nervous system. I find for the most part that they have terrible bedside manners except for my current one who is marvelous. But I still get this terrible feeling every once in a while that even he might think I’m exaggerating or downright nuts. I hate that. I also wonder whether the size effects of the meds which lower my immune system and can lead me to get deathly ill are worse than the disease. But I guess in tour case I’d be making the same decision you made. Thanks for your blog. Julie

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