Has anyone tried beta blockers for redness or pain, and did they work?
Mouse, I take Propanolol, 10mg TID. I’m not sure it’s helped with the redness, but has helped with the tingling in my hands and feet. The dose I’m taking is rather small, but a larger dose didn’t seem to have any further affect, so we dropped back to the current dose mentioned above. I think it has also helped minimize the daily flares. Evenings are still a bit challenging, but really think the propanolol is helping.
I take Propanolol, 60mg extended release in the morning and 10mg sustained release before bed. Does it work? I'm not sure. It may have a modest benefit. I was still having substantial difficulty while taking it. Then I was put on mexiletine, which had a much more undeniable impact. It stopped my flaring. Improvement was seen after the very first dose and has persisted for over 3 months. I've thought about stopping the Propanolol, but since i'm doing better, I don't want to risk upsetting the apple cart.
I totally agree with Carter. Once you feel you are improving, you don't want to stop anything you've done to get there... I tried to drop back to 10 mg twice a day and started flaring in the mornings again. So strange, as I flare in the evenings no matter what, but seems like the Propranolol is helping with the daily flares. I started Mexiletine today.
Hi there
I was given Meiletine but it made me feel sick did that happen to you if so did it go away ?
I have heard of a few people that got help from that drug . Propranolol make me burn it is a vasodilator . Seems one drug does not fit all
I was warned that the Mexiletine might make me nauseated. Was advised to take it with a full meal and an 8 oz cup of water. I found if I did this, I didn’t experience nausea. I also take a few Roliads or tums and that helps with any heart burn. I’ve only been taking the Mexiletine for 6 days. I think it’s beginning to help. I’m supposed to increase the dose on Monday. For whatever reason the propanolol seems to help some, but I think it’s more with the tingling in my hands and feet. Hope this helps! I think sometimes we don’t stick with the medication long enough to see if it really works. Definitely a disorder that has taught me patience.
Flame said:
Hi there
I was given Meiletine but it made me feel sick did that happen to you if so did it go away ?
I have heard of a few people that got help from that drug . Propranolol make me burn it is a vasodilator . Seems one drug does not fit all
I take 150 mg mexilitene 3x daily. How much do you take Carter? I don’t notice that it has helped me. I’ve been on it 2-1/2 months. Thanks, Beth L.
CarterDK said:
I take Propanolol, 60mg extended release in the morning and 10mg sustained release before bed. Does it work? I’m not sure. It may have a modest benefit. I was still having substantial difficulty while taking it. Then I was put on mexiletine, which had a much more undeniable impact. It stopped my flaring. Improvement was seen after the very first dose and has persisted for over 3 months. I’ve thought about stopping the Propanolol, but since i’m doing better, I don’t want to risk upsetting the apple cart.
Hi please let me know how you do with mexiletine
Thanks much
Flame said:
Hi there
I was given Meiletine but it made me feel sick did that happen to you if so did it go away ?
I have heard of a few people that got help from that drug . Propranolol make me burn it is a vasodilator . Seems one drug does not fit all
How much mexiIetine do you take br/>
Beth L said:
I take 150 mg mexilitene 3x daily. How much do you take Carter? I don’t notice that it has helped me. I’ve been on it 2-1/2 months. Thanks, Beth L.
CarterDK said:I take Propanolol, 60mg extended release in the morning and 10mg sustained release before bed. Does it work? I’m not sure. It may have a modest benefit. I was still having substantial difficulty while taking it. Then I was put on mexiletine, which had a much more undeniable impact. It stopped my flaring. Improvement was seen after the very first dose and has persisted for over 3 months. I’ve thought about stopping the Propanolol, but since i’m doing better, I don’t want to risk upsetting the apple cart.
Carter I was asking about how much mex thanks
Flame said:
How much mexiIetine do you take br/>
Beth L said:I take 150 mg mexilitene 3x daily. How much do you take Carter? I don’t notice that it has helped me. I’ve been on it 2-1/2 months. Thanks, Beth L.
CarterDK said:I take Propanolol, 60mg extended release in the morning and 10mg sustained release before bed. Does it work? I’m not sure. It may have a modest benefit. I was still having substantial difficulty while taking it. Then I was put on mexiletine, which had a much more undeniable impact. It stopped my flaring. Improvement was seen after the very first dose and has persisted for over 3 months. I’ve thought about stopping the Propanolol, but since i’m doing better, I don’t want to risk upsetting the apple cart.
I take 150mg three times a day (450mg total). It seems like my experience with mexiletine is the exception, rather than the rule. I responded to it within 24-48 hours, after just a couple doses. I've been very thankful for it. Things aren't perfect, but they're manageable. I don't spontaneously flare anymore. I haven't had much pain or discomfort. I wish it worked the same for everyone.
It seems like I have atypical EM. I mean, mine's mostly in my knees. That's very different from everyone else's. Even when I flare, I just have to wrap ice packs around my knees. I can walk around with the ice packs on. I can still use my hands. It's a lot more invasive if you're trying to cool your hands or feet. Sometimes my feet feel warm at night, but it's not the same sensation or phenomenon that occurs in my knees. Perhaps it's just not as bad in my feet or maybe it's not the same thing at all. Time will tell.