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
Monday, April 4, 2016
Saturday, April 2, 2016
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
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
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