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 infusion. Show all posts
Showing posts with label infusion. Show all posts
Monday, April 4, 2016
Thursday, October 22, 2015
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
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
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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