Starting a New Medication

What a week, man.

Okay, well I am scheduled to start an infusion medication for the Crohn's disease next week; it's called Entyvio.  I don't know much about it, other than it won't flare my MS unlike other Crohn's meds like Remicade.

Am I shocked I have Crohn's?  Not one bit.  But I don't really have Crohn's symptoms, so I have to take their word that the inflammation is consistent.  I am hoping that the med will reduce things enough, but I am feeling like the surgeon on Wednesday is going to tell me I need to go under the knife and have a resection.  I might need to have surgery in any case just to fix the bladder fistula, which I would probably welcome at this point, with the only exception to that feeling being that I am trying to get started at a new job here very soon and am anxious about the time frame for recovery.  On the plus side, this particular location is notorious for taking a long time to "get in the system" (goodness knows it has already taken me a month to finalize everything, though I am expecting my offer this wee), so I am praying that it will take just a little bit longer and work in everyone's favor!!

I also had a meeting with my neurologist this week.  I mentioned my struggles with spasticity, which have been particularly bad this last year (remember the foot attack at the Safeway incident?)  So, she put me on Gabapentin.  I'm slowly tapering that up, but probably won't take a huge amount as I am not really in need of that much of a change to be honest.  Though I have not had the "eek I am about to have a spasm" feeling for the last few days since taking it, which is great, because I had three incidents of it in one night less than a week ago!

My neurologist was none too pleased that I was unmedicated for so long.  I know that I made that decision for two reasons - 1, I couldn't afford the Gilenya with my Kaiser insurance for some reason, and 2, Steve and I were thinking that we might have a baby again this year.  So being unmedicated made sense, as long as nothing bad happened between now and August.  Well, that clearly did not happen!  So she talked me into getting started with the Copaxone generic, called Glatopa, which is a daily injectable.

OY.  I did it tonight, and man, this one hurt.  I remember doing the subcutaneous injections with the Acthar years ago, but don't remember anything hurting this bad.  I do recall one side of my abdomen hurting more than the other, and I feel like the left side was the better side, but I could be wrong and will need to go back and look.  But it's been two hours since my injection and the site is still pretty painful.  I am glad I did not get the heart-shattering, painful, "sense of impending doom" that some people get with this, haha, but pain is still no fun.

I will continue to update, and might give a video about doing the injectables one of these days.  The best highlight of my weekend was a new baby - - I brought home a 2 month old ball python.  I love her so much!   Her name is Kaa.  I haven't had a snake in years, and I just adore them.  2 year old daughter had a healthy sense of hesitation regarding the snake, but warmed up when we were putting her away - let's hope they grow together to love one another :)

Love to all,
MSloan

ChatMS 4/4/2016

Hey all!
I wish I could have participated live in this one, since it relates directly to my last post!  I have some decisions to make about new medication.  Here's tonight's ChatMS from twitter!
Feel free to copy/paste the questions to your own blog - and keep the conversation going!
...
Q1 - We will dive into details shortly, but have you experienced any negative side effects due to an MS treatment?

Not a DMD (disease modifying drug), but I have had many side effects from acute treatment such as steroids.  Solu-Medrol gave me the usual (headache, altered taste, altered textures from food, slight nausea, fatigue during the day and insomnia at night), but I also had strange side effects on an oral steroid in conjunction with Solu Medrol (heart palpitations days later) and a couple from Acthar (tense muscles).

Q2 – Some have answered, but There are 13 FDA approved treatments now. Which treatment(s) caused the worst side effects for you?

I had absolutely none on Gilenya.  I really loved Gilenya.  I hope I can get back on it.  Worse was Solu Medrol.
 

Q3 – What would you say your worst side effect was? How did you get past it?

Just... had to breathe through it.  I thought I had no choice.  Now I'm not so sure, since not only did the steroids make me feel like shit, but they seemed to do exactly shit for me.

Q4 – Have you purposely avoided selecting a treatment due to its potential side effects? If so, which one and why?

Yes.  First, Tysabri because I am JC Virus positive and don't want to get PML, and Tecfidera next because of the flushing and nausea.  I was steered away from interferons because of the depression risk - now I've heard they cause flu-like symptoms and that is a big no-no.  I am afraid my doc will want to steer me away from Gilenya because it isn't a "heavy hitter" and because it's a pain for them to get me started on it... I think it's worth sitting in their office for six hours, personally.

Q5 – Have you ever stopped a treatment because of the side effects experienced? If so, which one and why?

Nah, none here.

Q6 – When asking your neuro about side effects, did they offer assistance or just explain to you that “its normal”?

Yup.  Was pretty much told that any side effects I experienced...well, it's just the way it is.  I got the impression they thought I was a baby for not wanting to go on Tecfidera just for the nausea factor.

Q7 – For those who stayed on a medication despite side effects, did you find they went away over time?

I hope this is true.  Still looking for more answers - so if you're on a drug with heavy side effects, I would really appreciate your input here!

Q8 - What tips or advice would you offer to MSers in regards to starting a medication that may have severe side effects?

Do your research... you can trust your neuro, but also trust your gut.  If you really feel that the side effects would be worse than what MS would do to you, then re-evaluate and don't give up!
I certainly hope I can follow my own advice when it comes to this later this month!

Love all, MSloan

At The Bitter End -

Happy Saturday, Everyone!

I'm having a bit of a dilemma.  I need some advice on MS meds to start after pregnancy.

I know I've gone through all of them that were offered to me before, but now that it's been over two years, there have been many changes.  Since I started taking Gilenya, there was research out about it causing PML, and you now can't miss even a single dose before you get dragged back in for monitoring.  Now they can monitor you from home, but that seems so unnecessary to me.  Back then, I could have missed my pill for almost a month before my doctors would freak out.  I loved Gilenya, I didn't have any noticeable side effects from it, and it was so easy as a once/day pill - - but I don't know if my neurologist is as committed as I am to getting the pretest stuff completed so that I can take it.

I am not up for taking Tecfidera, because I am already prone to nausea as a result of my MS, and the absolute last thing I want is a drug that could potentially give me that side effect for a long time, as well as flushing.  It just seems like more of a pain in the butt than I am willing to deal with.

I was initially recommended for Tysabri but I am JC virus positive.  Not sure I want to risk PML and there's the 2nd pregnancy question, which affects the next one, too.

I looked into Aubagio, and while it seemed appealing at first, finding out that I would have to stop it a full 2 years before planning to get pregnant again scared me.  Granted, I may not ever get pregnant again, this has been an incredibly stressful and painful experience and the fact that I can't protect my brain or my baby with medication while pregnant  just terrifies me too much.  I was told up and down that there was so little risk to both of us with me getting pregnant because my MS could be expected to fall dormant, only to experience several distinct flares.  There's no way to know if I would happen again ... but seeing as I literally cannot see effectively out of my right eye anymore, I'm not sure it would be worth it.

This is going to be a hard call, because I know many of my other options are shots.  Needle fatigue scares me, but I'll do what I have to do.  Any advice on experience for these things is so appreciated!

Whew.  At 37 1/2 weeks pregnant, right now I am noticing how bad my eye is doing today.  I am getting off/on feelings of numbness in my left calf.  I will be having an MRI shortly after my daughter is born, and I'm putting it out there right now that I will be beyond shocked if I don't have any active lesions at that time.  But I could be wrong, I hope I'm wrong, and that I'm just having recurring symptoms.

In audiology, people who have bad vestibular neuritis and don't receive treatment often have permanent hearing loss.  This is essentially the same thing that happened with my eye.  I am not at all happy about this end result, but I have to admit that there is a little bit of "I told you so" that I feel towards the folks who kept trying to assure me that my eye would go back to normal because their "friend with MS had the same thing and it went away after a few weeks."  No, my MS is not vanilla flavored, I have fucking Eggnog flavored fat free MS that's on limited supply and it is very different from your friend's disease.  That's great that she had ON and it got better, but mine didn't.  This wasn't because I had a poor attitude, it was because I didn't get treatment!  There is a real consequence to not acting on bodily inflammation, I didn't freaking make it up to make you feel bad.

Oy.

So back to square one.  Advice and experiences from your medication experience is welcome.  I know I will get to discuss all options with my neurologist but as I got the impression he wasn't on the same page that I was, some ammunition with more information will really help me out.  And prayers for the babe, she's due on the 20th but I hope she'll arrive any day now :)

Love, MSloan

My, how things have changed...

It has been a strange last few months.

Can you all keep a secret?

In May, I went off my medications.  I stopped taking Gilenya, the Lexapro.  I didn't have side effects coming off the Gilenya - so that's great news for any users out there, no withdrawal symptoms.  The Lexapro was another story.  As a seratonin uptake inhibitor, it can really affect a number of systems all at once because of withdrawal alone.  So I weaned.

Oh.. but weaning is so hard.  I broke my pills in half and took then every other day for weeks.  When I finally stopped taking them, I got bad sweats, terrible dizziness, disorientation, overall feeling of 'ickiness' and felt my anxiety coming back like a freight train.  It's worse now than it's been since I started the pills, which I guess is a great sign that they were working, but in any case it's important to note that side effects with certain drugs only happen when you stop the medications (that is, unless my high cholesterol really was from the Lexapro to begin with).

I went off the Lexapro for a few reasons, and I want to see what happens to my cholesterol when I take another blood test next week.  I have been spending so much time at the lab in Kaiser that they all know me there.  It's that sad, haha, but I would rather be known in the lab than in the infusion center for MS steroids.  GROSS SOLLY HEADACHE.

Well, I might as well get to the point then, shall we?

A little over a week ago, I took a few days off work.  I was staying at home to get some mental health time in as I was continually feeling exhausted at work and was worrying that I might be on the precipice of a flare.  I really needed some time to myself and to think.  But on my first day of my little vacation, I took a pregnancy test.

:)

It turns out that we are expecting, though the whole experience so far has been more than a little nerve-wracking.  I have been spotting for a coupe of weeks and was very concerned - this is why I keep going to the lab.  Nothing at this point is certain.  Well, except for the fact that my B cup breasts have doubled in size and I've gained 10 pounds - and the exhaustion and hot flashes are just nightmarish, let me tell ya.  However I feel immune to a lot of the nausea because of my MS, and otherwise am feeling well enough to go to work and get things done as usual.  The biggest disruption thus far has been my hormones making me super touchy - the strained relationship I have with mom is only that much worse with this kind of news.

I really want to tell her - but I'm worried at the same time, because I need her to be supportive and happy and I am not sure she is capable of that.  Which is such a sad thought.  I have worked so hard to make my family happy and have not succeeded.

I am tired and she is, of course, berating me over email about the same old thing.  I guess she won't find out today that she will (most likely) be a grandmother in April.

Love to all, please send prayers and good thoughts, and keep it to yourself :)
Margo

Gilenya Lookout -

Glad I read this - I'm on Gilenya and couldn't take Tysabri because I'm positive for JC.  We'll see what comes of this!

http://www.nationalmssociety.org/About-the-Society/News/Second-Case-of-PML-Reported-in-Person-Receiving-Gi?feed=AllNationalNews

361 Days of MS

Hello all!  It's been a while!

I apologize for not giving frequent updates - but that is a GOOD thing.  It means I haven't been experiencing TOO many problems, and that's the goal, isn't it?

Since November, I have had strange stomach pains that I thought were MS hugs, and now I am not so sure.  Initially thinking it was possibly appendicitis and/or ovarian cysts, I have had a few ultrasounds and a HIDA scan, and it turns out my gallbladder only works at 25% - which is likely one of the reasons for my stomach pains.  I can't quite figure out which pains are due to this issue and what I can attribute to the MS - which is somewhat disconcerting.  Anyone who has experience with MS hugs or other abdominal issues is welcome to comment, please!  As I type this, I have a nagging pain in my lower right, the same one I had when I initially started getting worked up - it is not my appendix, so who knows what else could cause that?

It has been almost a year since my MS really 'began.'  I put that in quotes because I know my symptoms really started about 5 years ago, but on February 26th last year, my left leg went numb.  It no longer was an ignorable problem.  After many months of Solumedrol treatments and no improvement, continued lesion growth, five shots of Acthar, beginning Gilenya and anti-depressants, moving to California and starting a new job - - - there are many changes.

I no longer have constant numbness in my left leg.  I can work out now without any tinglies as well.  For the most part, I feel back to 'normal'!  It's a great improvement.  But I am aware that things aren't perfect.  My left toes occasionally go numb and tingle.  My forearms have the most numbness, though it never lasts an entire day.  Sometimes it is there, sometimes it is not.  The most recent symptom is a constant ringing in my right ear - I would assume that is a serious issue doing what I do, but I attribute that to the MS and my existing hearing loss on the left side means it would be unilateral.

My mood has improved dramatically since last year as a result of the anti-depressants, which makes me happy and sad at the same time.  My husband and I want to have a family, but this particular anti-depressant, along with the Gilenya, are very dangerous for a pregnancy.  To go off the medication at this point puts me at a number of risks that we have to weigh.  I was hoping at this point in my life that I could secretly go off my birth control and let nature take its course, but now I have to be more vigilant about my pill than ever.  Combining all the abdominal pain symptoms with some other issues I have been having, things point to such sinister things as ovarian cancer - so it's a scary time as much as it is a relieving one.

In the meantime, since about September of this past year, my family has gone through a huge change.  My father was accused of murder early in 2014.  My mother, who I am already certain has a myriad of psychological issues, has gone off the wire in regards to the crime and is now convinced my father is stalking her.  I consistently tell the joke that everyone loves my father but my mother - but that really is true.  Meanwhile my sister and I are getting bombarded with daily emails about how not ill she is, which only makes us feel more and more confident that she is, indeed, disturbed.  I have always told people that watching "Mommy Dearest" is very close to watching an autobiography of my childhood.  I know this is a bit off topic from the MS, but seeing as it tends to be heavily influenced by stress, I figure it is worth mentioning in this medium.

So how is everyone else doing?  Have any of you had any new symptoms, treatments, or issues you need to get off your chest?  I'm all ears (or eyes, as it were).  Love to all!

Updating on the Times -

Funny how when things are going well, you are less likely to update on things like that.  But I think it is even more important than when reporting poor condition!

I have made a huge change in my life in the midst of being diagnosed with MS.  I have moved cross-county with my husband and three kitties.  I have started an anti-depressant and the MS medication, Gilenya.  My husband and I have had some tough talks about what the future will be like, as he was hoping we would have started a family by now.  I don't know how I feel about it, as I'm only in my late twenties, but now the medications complicate things a bit.  We shall see how that pans out.

I'm giving an update on what it's like to get your scripts!  When you get MS medication, it comes through a specialty pharmacy, which delivers directly to you.  If you're like me, you'll be lucky and have no copay.  This makes seeing the $3000.00 bill that comes with your medication less shocking - your insurance is already taking care of it.  So heaven forbid you are ever not covered!  But Gilenya comes with a four-week supply, making it all the more baffling that people could 'forget' to take it for three weeks.  Come on, people.

Though I do understand how the scripts can be mixed up; whenever I call the automated service, it never recognizes my number, so I have to wait the agonizing minutes for an operator, who wants all the information under the sun from me every time I re-order.  This can be frustrating, as it is supposed to be an easy process, but being in the Pacific time zone complicates things!  So there's that.  But it's doing it's job (I think) so I can't really complain!

I'm so happy I took the leap to an anti-depressant.  We really have to start talking about mental illness as a sickness that can be treated instead of sweeping it under the rug.  I am very vocal about what my experiences are and have been, which seems to be mostly well-received by those I speak with.  So if you're suffering, speak out!  And do something, even if you think your problem is mild.  If you downplay your own illness, and tell YOURSELF that it is nothing to worry about (even though you are suffering), this is NOT ok - so go do something!

Love to all!  And a good song I posted, hope you go listen.

https://soundcloud.com/margo_aries/trouble-cat-stevens-cover

Relocated

Hello all!  I know it has been a while since I posted, but that is a good thing for sure.

The last time I wrote, I was doing some art therapy.  I completed some more of the commissions my friend wanted from the Marvel character series - I will post those eventually.  But right now, I'm just excited to feel well enough to create again.

I made the big move, and am now in California, very far away from the place I called 'home' my whole life.  I spent many hours in the DMV getting my license and car registered in this state; next is my professional licensure, but they want to make absolutely sure that the process takes as long as possible, so I am not holding my breath.

On the MS front, I have been on Gilenya for over a month now.  So far I have not noticed many nasty side effects, except that boo-boos do not heal like they used to.  If I get a scratch, a zit, or heaven forbid a gross sore anywhere else, it doesn't go away quietly.  I also think my anti-depressant is working; last week I would have normally been biting my husband's head off with PMS, but I didn't have any real mood swings at all.  Which is AWESOME.

I started work this week, and I am so happy that I ended up where I did.  Of course, the process is just starting, so most of my current schedule involves training and very, very boring reading - but I know that it is good for me in the long run, and I am so excited to just be working again.  I am beyond lucky to have chosen a career that allows me to do things that I love, both at work and at home.

So, there you go, world.  Right now, that's where the MS train lies.  I have not yet found a new neurologist out here, I have not yet figured out how my body reacts to the Gilenya, and I have the trouble of feeling like I'm keeping a secret from my coworkers because all of this is so recent.  But I will prevail - and so will you!  :)

Picking Poison Again

Well, saw the neurologist on Friday.  Or, the PA rather, who is very nice.  Though it seems to be a running theme that people either never meet their doctor, or their doctor doesn't care - this is very frustrating.

I felt like they forgot why I was there.  The whole point of the last three weeks was because I had failed the first round of Solu-medrol, and had to be put on another dosage of steroids for over a week.  Then, we were going to re-do the MRIs, and start Tysabri.  When my JC virus antibodies came back positive (which they were weird about telling me, like I had HIV, which it is my understanding that the JC virus is common) - they had to scrap Tysabri, which was saddening as there is nothing as 'aggressive' at preventing relapses as that drug.

So we are back to the drawing board.

The doc wants me to get on medication ASAP, because the type of symptoms and lesions I have show that my disease is progressing quickly.  Not enough to reclassify me as anything other than R/R, but enough of a concern that we can't just wait to get me treated.  This really upsets me that I feel like I don't understand enough about my own disease to figure it out, and they can't or won't communicate that with me.  It is disturbing to me that when I move my neck forward I have tingles, noticeably worse tingles, running down the back of my legs for as long as I hold the position.  I have a stiff neck, but never had that before the last round of steroids.

This tells me that the likelihood of my failing the second round of steroids?  Might be pretty high.  I feel like crap, my numbness keeps changing in my feet - yesterday I could have walked on hot coals (or worse, loose legos!) and wouldn't have known it.  I don't have any set lesions in my cervical region, at least not on the last MRI, so why I have this problem when my neck is moved is just scary.

They are going to start me on Gilenya for the time being because I'm about to move out of state.  I just love getting guilt tripped by my doctor about how much of a pain in the ass it is because they can't get me started on daily injections if I'm about to move.  Gee, I'm sorry that where I got a job is a pain in the ass FOR YOU.  Here, let's switch places, I'll be the doctor that never meets her patients, and you'll be the broke brand-new AuD with NO MONEY, gross medical bills, and a condition that causes you to not feel your feet and numbs your hands - and you're supposed to move.

Again, sorry that this sucks for you.  But I'm the one with no place to live when I move, no money until I get paid 2 months from now, and a disease that is heavily affected by stress.  ::sarcastic thumbs up::

I ran into a very old friend who I haven't seen since my wedding five years ago - and I am so happy that she is someone I can trust and talk to.  She is getting her PhD at UNC (Carolina) and works in an Immunology lab, after transferring out of an MS lab.  I told her what was going on - she treated it like I do, very scientifically, and went off about a study she once looked at for T-cell receptors and myelin.  I'm so happy that she didn't give me the ridiculous pity look.  If I had seen her more often, I might have broken down in tears over the day's events and being chastised by my doctor for moving - but it's enough to know she knows if I need someone.

That's it for now.  Have to be on the 'weak' drug because it's better than nothing - the PA looked almost panicked that I still wasn't being directly treated.  Will have to hope my insurance will accept another round of MRIs.  And I'm not bringing mom to another appointment - I just can't right now.  Love to all. 

Making Decisions

I decided to go with Gilenya.  I called my doctor to let them know so they might get the paperwork going; we set an appointment two weeks out - for this drug, I have to go in for an entire day to be monitored because of the potential heart issues.  It's the day after my birthday, FAN-TAS-TIC.

Right now, I'm struggling with the decision of telling people about my diagnosis.  You know how the internet is, well, a semblance of anonymity?  I have always been a very active person with social media, and I probably have way too many accounts to keep track of.  So there is something different about sharing this sort of thing online, on my tumblr and this blog, even on my art page and twitter.  I know about three "real" people from my life on those sites, and as may be clear by it's slight ridiculousness, I don't use my real name.

In real life, however, having a chronic illness can be very different and difficult to share.  You are not always greeted with sympathy or care; the attention one receives from this kind of revelation can often be negative, or a negative-kind-of-positive attention, I'll shorten it to 'NKOPA'.  What is NKOPA?  The kind of response that is overly sympathetic, like pity, or even the kind that is immediately drenched in suggestions.  As I stated in my first post, this is often declared in the form of what food one should/should not eat, or what deodorant one should/should not use.  My mother was quick to share it with extended family after I told her (which I did not ask for) and I then got a flood of emails about how I should 'cleanse my body of toxins' and things of the like.

The problem with these suggestions is that people are inadvertently telling you that you can prevent your problem, which in turn, means you could have prevented it from happening at all.  If I could have kept my legs from going numb by eating more grapes, I would have.  I would have drowned myself in grapes (and I don't even drink, haha!)  But that is not reality.  Science shows that many of these theories are invalid and anecdotal - which basically means that because everyone has a different 'flavor' of MS, you can't predict when relapses will occur whether or not someone has a particular diet or habit.

By the way, do you want to know how to tell if someone is Vegan?  Don't worry.  They'll tell you.

So today I am asking for some responses.  Did you tell people in your immediate circles when you got your diagnosis?  Did you tell anyone at all?  How did the people in your life respond?  I have basically only openly told the people I work with as it has seriously messed up my work schedule (see how now I have another MRI and a full day at the doctor's office ahead).  I would love to hear some real-life experiences of what you went through when you were first diagnosed.

Thanks all,  Margo

Pick Your Poison

Right now, a week + 1 day since my official diagnosis from the neurologist, I am staying up reading about treatment options.

What are they?  Well, it helps me to write things down, so let's go through them!  ::plays corny music::

Let's begin by discussing what treatments really are.  There is no cure for MS, and there are no ways to guarantee that any treatment will work for my 'flavor.'  Everyone is different, some people have 'flare ups' (a series of worsening symptoms for more than 24 hours indicating new lesions or damage) when they get their period, some get them randomly for no reason at all, some people have a single bad flare up and then never have one again.  As much as I would like to think I'm in that last category, the mere presence of several different lesions on my MRI suggests otherwise.  That's why the blog is titled as it is: when a radiologist sees a lesion on an MRI, they often describe it as 'a focus of restricted diffusion.'  What that means exactly, I do not know, I'm not a neurologist, stop asking so many questions!  :)

But these treatments are meant to 'slow down the flare-up relapses,' reducing their likelihood by essentially telling your immune system and T-cells to STFU.  It can make you more susceptible to other infections, diseases, etc.  Some cause stomach issues.  Some are pills, some are injections or infusions.  Some cause major birth defects.   All of these ones are meant to treat the type 'relapsing/remitting,' which is the most common form. 

It's a game of 'which is worse, the medication, or your MS?'

1) Tecfidera
This first option comes with a 'schwag bag' of sorts, and has the information packet neatly enclosed in a green mesh zippered bag.  Clearly a ploy to make the product more interesting, but let's take a look.

This treatment is a pill version, taken twice a day.  Causes common side effects of 'flushing' and 'stomach problems,' starting at the beginning and getting better - since I already have GERD and chronic stomach pain, I'm gonna say this one isn't looking so good.

Hmm, people taking this in a 2 year trial had 1/2 the relapses than those on placebo.  I feel for the placebo patients.  It apparently also delays 'physical disability progression.'  Well FAN-TAS-TIC.  I LOVE reading about how my body could slowly deteriorate with this disease.  Did I mention that I'm 25 and an active artist who now has numbness and tingling in my hands?  Yeah, this is not terrifying AT ALL.

Slows development of brain lesions.  Damn, I thought I could get that merit badge for '100 myelin sheaths destroyed' this month.  Guess I'll have to wait for that next year, Tecfidera!

All joking aside, this is a helpful little booklet, and it teaches the different names of lesions on an MRI (for example, my foci are described as FLAIR/T2 lesions, which are apparently long-term impacts of inflammation, which is essentially all that MS is in the brain).  This drug does, however, have warnings on every page about possible white blood cell count loss (meaning you are more likely to be at risk for other bad things like infection - and I work in a doctor's office) and the risk to potential pregnancies.  Since I am at the age of conception, and I have existing stomach issues, I think this one is pretty low on the list.

2) Tysabri
Oo, another totally unpronounceable drug.  NIIIICE.  OOO again, a sleeve with lots of little brochures tucked inside.  This doesn't look tedious to read at all.  I am already excited.

Tysabri is immediately different because it is a monthly infusion.  What this means is I would have to take time once a month to go to an infusion center or hospital to receive this drug intravenously for at least an hour.  Some of these things make worse symptoms while the infusion happens; for example, the infusions they gave me after the ER visit made everything taste like metal for an hour and a half but for a week I couldn't taste salty things, and soda wasn't fizzy (which is a big deal when you drink soda all the time like I do).  But it's good because until Tecfidera, this is not a steroid, but an antibody - it basically tells white blood cells to STFU without killing them off.
 
Tysabri can put you at risk for a particular brain infection, it's a virus they can test you for, but the risk is there nonetheless.  Apparently some places put all their patients on this drug even when some test positive for the virus - sounds risky to me, but whatever floats your boat.  Has a better rate of less relapses compared to the other drug so far.

This one has the same thing about reducing the timeline for physical disability.  Love reading about that every time.  But this one has a new risk for liver failure - I don't drink, so knock wood my liver is as healthy as it can be, but we'll see.  Common side effects include headaches, UTIs, lung infections, pain in arms and legs, vaginitis, stomach pain, fatigue, joint pain, depression... I already suffer from many of these things pretty regularly.  I am not afraid of needles, but I don't look good with the 'I look like I could have heroine tracks' look, either.  I say - PASS!

3) Gilenya
This one is new, and I remember seeing it advertised a lot when Jack Osborne was on DWTS.  I admit, I thought about MS a lot when that came out, because I have suspected this problem for some time.

Now, let's examing Gilenya.  It is a once/day pill that has to be taken diligently; if I were to start, then miss it for 14 days, I would have to go back to the hospital to be monitored when I took it again because it can cause heart problems.  WHOA.  Sounds like a much bigger problem than my legs being numb, doesn't it?  But really, what idiot takes a pill then forgets to 2 straight weeks?  You don't 'forget' that crap.  Really, you do that on purpose or something.  But I take The Pill, so I am used to a daily dose.

Yeah... all the side effects about this one are all about the heart.  No history of heart attack, unstable angina (giggle if you wanna), stroke or warning stroke, heart failure... oy.  Bigger problem?
I would need to hang out in a hospital hooked up to monitors the first time/two I took this drug if I chose it to make sure my heart wouldn't stop.  FAN-TAS-TIC.

This one includes information about how an insurance company might cover it.  Since I am broke, and finishing graduate school as we speak, this is very important and puts it on the table.
Lowers the number of white blood cells ... they all do that, I've seen.  Macular edema can also be a side effect - it's essentially the same thing that MS does when it inflames the optic nerve (optic neuritis) but might be progressive.  Should check eyes before taking this drug (which I need to do anyway).  Also may 'harm your unborn baby.'  Ironic, since many ppl have told me that pregnancy will put MS at bay, often causing mothers to crash after giving birth.  So we'll see how that goes.

Did I mention no one knows how these drugs work, they just kinda... do?
All the options suck!  I'm going to bed.  I'll decide tomorrow.

Love, Margo