Wednesday, September 14, 2016

MS Decisions...



As I walked into my neurologist's office yesterday at 4pm, I still hadn't completely decided what medication I was going to go on for my MS. 

Honestly, none of the choices are all that appealing....

If I went back to Copaxone (three times per week injections), the possibility was very good that I would experience the symptoms I did when I initially started this drug so many years ago (because I have been "off" it for almost a year now!).  Those lovely side effects included at site swelling/itching/pain and flushing as the biggest offenders.  And, I have had breakout lesions while I was on this medication before.  I know that nothing is foolproof but it doesn't make me happy to go through injections to not have any results.

But...the new oral medications have their own set of lovely issues too!

One in particular (cough cough! I'm looking at you Aubagio!) can cause significant hair loss (!) and I would need to have an IUD implanted because my neurologist said I could absolutely positively NOT get pregnant while on this drug.  Even though I don't plan on getting pregnant and use condoms (sorry TMI), he told me that wasn't good enough.  The risk is too high.

The second possible oral (Gylenia) would interfere with one of my other medications and has the highest risk of something called PML (progressive multifocal leukoencephalopathy).  Basically it's a scary ass brain disease that can progress to coma and death.  Now, I will admit that the risk isn't crazy high but still high enough to make me nervous.

All this leads me to Tecfidera (the last choice in orals).  It has the lowest risk of PML over the course of its existence.  However, the first month of being on this medication can be sheer hell.  The biggest side effects are flushing and GI  issues (mainly diarrhea) which will eventually taper off.  But, before it tapers off?  From what Papa has filled me in about it (I started to read about this stuff but began to freak out so I left it up to him to research as usual), it's not very pretty.

Oh and, with all three orals, I would need frequent bloodwork since my kidneys and liver have to be monitored as well.

Yup, I wasn't excited with my choices one little bit.

In the end, it was down between the devil I know (Copaxone) and the devil I don't but seems to have the least risks overall (Tecfidera).

I chose the Tecfidera - mostly because we were questioning if the Copaxone was even working anymore when I was on it.  But, I wish I felt better about my choice.  Truthfully though?  I don't think I would be comfortable with any of the choices completely.

Maybe I am just having a hard time because the fact that I am "sick" is glaring at me again....even though I feel pretty damn good. 

I wish I had a crystal ball.  I wish someone could tell me if this is the right choice.

I guess only time will be able to tell us right?

After I drop the Guppies off at the high school, I'm off to get my initial "baseline" bloodwork done.  I'm hoping that, after a couple of days, I can shake this mood of mine off!



9 comments:

  1. For what it's worth, I probably would have made the same decision. It seems like the lesser of all the "evils".

    Maybe make a fall bucket list and choose some simple things to improve your mood? (Stroll through the neighborhood with your honey one cool evening, bake an apple pie, carve pumpkins with the guppies)

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    1. Thanks Stephanie! I think I am just having a hard time with going on medications at all again anyway. MS is a strange disease in that it affects everyone who gets it very differently. There is also a theory that it is vastly under-diagnosed because sometimes people ignore the symptoms and the disease doesn't stay active for a lengthy amount of time. Although not likely, it is possible that I will never have another lesion again. BUT, taking that risk wouldn't be fair to my family. I have to stay proactive and do whatever I can medically to insure this as well, you know?
      I think this will be the best choice for me in the end - barring any major complications from the medicine. I love your ideas for my bucket list! And, until I know how I respond to the medication (and its side effects), I will have to plan fall activities close to home (and a bathroom!) No long hikes for me until I am sure I won't have an issue! LOL

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    2. I should have written doesn't stay active for a lengthy amount of time in SOME people! It can go dormant but it's never "cured".

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  2. So sorry you are having a hard time with this. I can relate even though I don't have MS I have heart issues that freak me out all the time. Especially when they want you to add yet another med. or (God Forbid) Change meds because one quits working or isn't approved by the insurance co. any more. I have had 3 pacemaker Defibrillators and open heart surgery and once again have a leaky valve. Most of the time I don't feel "sick" except for low energy or feeling down.

    I will keep you in my prayers as you start your new med. I think it was a good call to start with the one with lowest side effects. Get some good books or magazines or some craft you like to do. I loved that Stephanie suggested fall activities. Anything you can do to get yourself out of your own head. Because then a person tends to worry. Oh, and treat yourself really well - baby yourself with something that makes you feel good like a bubble bath or pedicure or something else. Give yourself grace and don't be hard on yourself if you don't feel up to doing everything. Remember most of these things pass after the first week or month on a new med. and if not then it might not be the right med. for you.
    Take care.

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    1. Thank you so much for your uplifting words, Crystal! And I will be trying to take better care of myself/be less hard on myself/get out of my own head. The less stress I have at this point the better.
      I will keep you in my thoughts as well! I'm sorry you are having yet another setback/complication with your health! Keep me posted okay? ((( Hugs )))

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  4. That was weird my post triple posted so I'm going to try again. Taking any kind of a medication for maintenance of a non-visible illness is stressful to our minds and our bodies. I know that you and Papa fish will make the right choices to keep you happy and healthy. Keep your chin up, keep a log of any side effects and as one of your other realtor said try to find little things to do that will make you happy and at peace.

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    1. Sigh. Realtor is supposed to be reader. But as you know my typos give you giggles so enjoy

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    2. Yup! You know me well! Haha! And, the side effect log book is a great idea! Thanks! I even already have a notebook that is the perfect size to carry around with me so that's a frugal win! =)

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