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

And it goes around and around and around -

Well, I have an MRI scheduled for Saturday morning, bright and early.

My neurologist was very kind and immediately got the ball rolling to get it scheduled, which I really appreciate considering the fact that he has only met me one time and he wasn't my diagnosing physician.

That being said, I am still hopeful that I am somehow very wrong and this is due to my pregnancy - but according to him, that usually happens because of weight gain and water retention, and neither of those things have really happened to me yet.

I am not gaining enough weight for my pregnancy.  I know I am very stressed out, and I am worried about what that might do to the baby.  I read that it can cause behavioral abnormalities and even possibly autism - it's just terrifying to think that even without smoking or drinking I could mess my kid up before they even get here.

Le sigh.  But a doppler is coming tomorrow in the mail, so when I get to bug my squishy and hear the heartbeat, I will try to upload a quick mp3 file!

I did a lot of reading today on what drugs might be viable during pregnancy.  I know Copaxone is, but I am not at all wanting something I have to inject if I don't absolutely have to.  I know Solumedrol is a viable treatment for relapses during pregnancy, but it makes me feel so damned lousy; my neurologist said that many pregnant women decide not to be treated if they have a relapse.  I don't know what that might mean, considering the last time I was treated during a relapse, my lesions still tripled in size, I had terrible issues with word finding, optic neuritis, dizziness, and L'Hermitte's Sign.

For kicks, I read about Acthar, as that seemed to do the trick last time, but read that it is known to be "Embryocidal."  WOW.  What a freakin' word.  Definitely not doing that one while I'm pregnant.

I will give another update if I get my doppler tomorrow, otherwise probably not until after my MRI on Saturday.  Keep your fingers crossed that I'm wrong and the MS is still sleeping!

MSloan

Star Wars

Today, I got a call from my neurologist.  Turns out, they were able to get my brain MRI results despite my insurance not covering the cost - I suppose I will get a big bill for that later, but I'm glad that they saw them, as it turns out my last round of steroids was, yet again, unsuccessful.

My MRI shows that my lesions are not necessarily getting bigger, but now there are new ones.  This is not a good sign.  Though it is somewhat amusing to consider that my body's inflammation 'laughs in the face of steroids,' muahaha!

I have done a little research on the drug they are going to put me on next.  Let's learn about it together!

1) What is it?

The name of this drug is 'Acthar,' which reminded me an awful lot of Star Wars, hence the comic at the end of this post.  I hope you find it mildly amusing :)

Acthar is called an Adrenocorticotropic hormone, or ACTH.  It is meant specifically for acute exacerbations of MS (though I don't know if I could call this an acute exacerbation if I've had this for three months and it just isn't getting better.  I don't feel good about that, but let's move on!)

2) What makes Acthar different from the steroid injection treatment?

Acthar is not a steriod, but it acts something like one.  It forces the body's adrenal gland to go on hyperdrive and produce a hormone called 'Cortisol.'  You might recognize that as a word you hear in diet pill commercials as the 'stress hormone,' which increases body fat in certain places and in general just causes all sorts of problems.  Well, Acthar wants to use those crappy side effects of Cortisol to treat your MS!  It basically tells your immune system and inflammatory response to STFU.  It is essentially a natural steroid.  It can increase body fat, increase fluid retention, decrease your body's ability to process glucose, increase your likelihood of stomach ulcer - lots of problems.

Acthar is also not an intravenous drug, meaning it is actually given in the muscle, like you would a flu shot.  It shouldn't be taken intravenously because it can spread through your system at too fast a rate; this is why heroine addicts prefer a direct vein to shooting themselves in the leg.  You have to give this drug to yourself in a syringe for a number of days when you receive it.  I will not be doing that, I will be checking into my neurology office every day for 5 days until this is over.  I have put on a brave face this whole time, but I really do not like needles, and I don't know if Steve has the strength to do this for me right now.  I haven't told him yet.

It will be a fun ride for sure.

3) Why do you need this drug?

You need this drug if you have 'failed' steroids, which means you are still having an exacerbation and inflammation after being treated.  I have failed steroids twice now, and have new lesions, which means somebody, somewhere, needs to tell my inflammatory system to STFU.  That is where Acthar comes in.

My insurance company should cover this now that it is a justified use of the drug, you have to fail it twice for the company to give it to you as these little vials cost about $50,000 (that is straight out of the horse's mouth, the neurologist, when telling me about this a few weeks ago as the next option). 

4) Okay, so it should halt the progression.  What are the downsides?

It can cause wicked bad mood swings.  There's a huge paragraph warning about this; I already suffer from mood swings with my depression, so I'm sure I'll be way pleasant in the next couple of weeks.  General body swelling is another side effect.  This is the sort of drug that you absolutely cannot accidentally become pregnant while on, too.

I'm going to go grab my laundry now, as my life cannot stop though my brain clearly wants me to take a break!  I hope this helps someone out there get a better idea of what is up ahead.  I will continue to update as a know more.  Thanks for listening.

Let's hope Admiral Ackbar isn't right this time...