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

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

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. 

Qualifications

Well, my JC virus antibodies came back positive, which means I can't be put on Tysabri.

Oy, one big, fat, OY!!!

I am going to see my neurologist tomorrow and discuss some other options, though I don't know what will be suggested if Gilenya wasn't 'aggressive enough.'

Any thoughts?  Sorry for the short post, I will have more details tomorrow.
Love all - -

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