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
Showing posts with label intravenous medication. Show all posts
Showing posts with label intravenous medication. Show all posts
Monday, April 4, 2016
Wednesday, October 21, 2015
T Minus...
I'm giving it until Friday to see if things improve. T
here is no way this is just pregnancy; it feels too much like the first time, though less severe, which is a good thing I think. I can still walk, but I definitely feel more unsteady, despite the fact that my legs feel fairly normal. The numbness is moving around my feet throughout the day; at night, it's the worst, waking me up and making me panic. In the morning, after walking around, I feel ok and barely notice the numbness. By noon, it's starting to bother me again, ebbing and flowing.
Now it's about 8:15, I have had a very rough day at work, my crazy mother was set off again today and I'm getting hate mail, and my feet feel very funny.
Here's to hoping I can feel them by Friday. If I can't, I will have no choice but to call my neurologist.
And I knew when I went to bed on Monday that my toe felt funny.
MSloan
here is no way this is just pregnancy; it feels too much like the first time, though less severe, which is a good thing I think. I can still walk, but I definitely feel more unsteady, despite the fact that my legs feel fairly normal. The numbness is moving around my feet throughout the day; at night, it's the worst, waking me up and making me panic. In the morning, after walking around, I feel ok and barely notice the numbness. By noon, it's starting to bother me again, ebbing and flowing.
Now it's about 8:15, I have had a very rough day at work, my crazy mother was set off again today and I'm getting hate mail, and my feet feel very funny.
Here's to hoping I can feel them by Friday. If I can't, I will have no choice but to call my neurologist.
And I knew when I went to bed on Monday that my toe felt funny.
MSloan
Tuesday, March 10, 2015
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
http://www.nationalmssociety.org/About-the-Society/News/Second-Case-of-PML-Reported-in-Person-Receiving-Gi?feed=AllNationalNews
Friday, April 11, 2014
Infusions: Fun for the Whole Family!
Today I started the second round of Solumedrol, an intravenous steroid that I will have again tomorrow and Sunday.
Unfamiliar with Solumedrol, or infusions, or the process? Well, let me educate you on some of the things I wish I knew.
An infusion center is a place, usually a little room in the basement of a hospital or clinic, that's express purpose is to deliver intravenous drugs to patients. They have to be open 7 days a week, because some drugs are time sensitive, and you can't just hope that the half-life of your drug will last through your weekend and workday. However, as nice as this sounds, an infusion center may be very far away from somewhere that is convenient. And don't forget that infusions often make you feel like hell afterwards, so organize transportation if you need it. They look like they do in medical tv shows - lots of chairs, relatively comfortable chairs even, in a little room surrounded with IV stands. It's meant to look more cozy than menacing, which makes sense when you consider that people who come in for chronic infusions (even you as an MS patient, or your friend the cancer patient, or your grandfather receiving blood transfusions for his low red blood cell count) need the place to look like a second home to keep from hating their circumstance.
The people who work in infusion centers are some of the nicest people in medicine you will meet. Now, I'm an audiologist, and I think we're high on that list as well, so it's saying something if I mention that the infusion nurses are very conversational and sympathetic. They need a pick me up, so the better your attitude, the better your experience. They people see dying patients every day, and often have to put people in pain to get central line (chest/abdominal IVs) medications directly to the system. The more patient and forgiving you are, the nicer they will be.
If you're lucky, you'll get a nurse that will put a warm, damp rag on your arm to get your veins to stick out. I'm a very skinny person, so my veins are just as small, and the poking process for the IV is less than pleasant. But communicate with your nurse - they'll understand if you tell them that spot hurts a little, or doesn't feel right.
Solumedrol comes in a little baggie, usually a full gram of the medicine (which is apparently a lot, I don't know enough now to disagree). It is given through the IV over the period of an hour to an hour and a half; the time given depends on your nurse and what you tell them. The drug can give you a headache, especially those first few times you get it, so the longer the infusion is the less likely you'll suffer from the foggy pain of the "Solly Headache," as I have so coined.
The drug has some interesting immediate side effects. Solumedrol makes your mouth taste like metal, almost immediately once it gets high into the bloodstream. Bring hard candy with you to make it less weird; it's odd because unlike actually tasting something that is metallic, when you swallow, nothing changes - it doesn't run down your throat, it just tastes funny, gross, icky. Cinnamon candies are my favorite. Drink water. Lots of water, and eat beforehand, because everything will have that weird tinge afterwards.
And afterwards, you may become ravenously hungry. Absolutely crazy hungry. And everything will still taste funny, but you'll be hungry. But, surprise, this drug can and likely will upset your stomach - heartburn central! I already have GERD and suffered from bad heartburn for days last week, so right now, everything hurts to eat regardless of the antacids - but maybe you'll be lucky!
Solumedrol makes falling asleep really difficult. So be prepared to buy a sleep aid. And for me, this drug makes me feel more fatigued than anything in my life. It puts me in a fog of sorts, a delayed reaction, one that makes me a little bit dizzy and a little bit disoriented.
Well, that's my run down. Have you had Solumedrol and want to add your experience? Leave a comment, the new patient readers appreciate it.
- Margo
Unfamiliar with Solumedrol, or infusions, or the process? Well, let me educate you on some of the things I wish I knew.
An infusion center is a place, usually a little room in the basement of a hospital or clinic, that's express purpose is to deliver intravenous drugs to patients. They have to be open 7 days a week, because some drugs are time sensitive, and you can't just hope that the half-life of your drug will last through your weekend and workday. However, as nice as this sounds, an infusion center may be very far away from somewhere that is convenient. And don't forget that infusions often make you feel like hell afterwards, so organize transportation if you need it. They look like they do in medical tv shows - lots of chairs, relatively comfortable chairs even, in a little room surrounded with IV stands. It's meant to look more cozy than menacing, which makes sense when you consider that people who come in for chronic infusions (even you as an MS patient, or your friend the cancer patient, or your grandfather receiving blood transfusions for his low red blood cell count) need the place to look like a second home to keep from hating their circumstance.
The people who work in infusion centers are some of the nicest people in medicine you will meet. Now, I'm an audiologist, and I think we're high on that list as well, so it's saying something if I mention that the infusion nurses are very conversational and sympathetic. They need a pick me up, so the better your attitude, the better your experience. They people see dying patients every day, and often have to put people in pain to get central line (chest/abdominal IVs) medications directly to the system. The more patient and forgiving you are, the nicer they will be.
If you're lucky, you'll get a nurse that will put a warm, damp rag on your arm to get your veins to stick out. I'm a very skinny person, so my veins are just as small, and the poking process for the IV is less than pleasant. But communicate with your nurse - they'll understand if you tell them that spot hurts a little, or doesn't feel right.
Solumedrol comes in a little baggie, usually a full gram of the medicine (which is apparently a lot, I don't know enough now to disagree). It is given through the IV over the period of an hour to an hour and a half; the time given depends on your nurse and what you tell them. The drug can give you a headache, especially those first few times you get it, so the longer the infusion is the less likely you'll suffer from the foggy pain of the "Solly Headache," as I have so coined.
The drug has some interesting immediate side effects. Solumedrol makes your mouth taste like metal, almost immediately once it gets high into the bloodstream. Bring hard candy with you to make it less weird; it's odd because unlike actually tasting something that is metallic, when you swallow, nothing changes - it doesn't run down your throat, it just tastes funny, gross, icky. Cinnamon candies are my favorite. Drink water. Lots of water, and eat beforehand, because everything will have that weird tinge afterwards.
And afterwards, you may become ravenously hungry. Absolutely crazy hungry. And everything will still taste funny, but you'll be hungry. But, surprise, this drug can and likely will upset your stomach - heartburn central! I already have GERD and suffered from bad heartburn for days last week, so right now, everything hurts to eat regardless of the antacids - but maybe you'll be lucky!
Solumedrol makes falling asleep really difficult. So be prepared to buy a sleep aid. And for me, this drug makes me feel more fatigued than anything in my life. It puts me in a fog of sorts, a delayed reaction, one that makes me a little bit dizzy and a little bit disoriented.
Well, that's my run down. Have you had Solumedrol and want to add your experience? Leave a comment, the new patient readers appreciate it.
- Margo
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