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