Hi Everyone
It’s been awhile since I have logged on. I have had my dosage of lyrica upped to 50mg four times a day. I am getting blisters forming on my toes, heat seems to be moving up my shins, still effecting my hands. I have noticed that since being on Lyrica that I struggle to find the right words when speaking to someone. I also feel like my head is in a fog. Does anyone else take Lyrica for their EM and do you experience any of the same side effects?
I tried Lyrica, it didn’t help my EM at all and caused me to be extremely forgetful and foggy in the head, even more so than just my fibro fog, I stopped it due to how cloudy it made my head.
If symptoms are no better, I would ask your doctor to try other treatment options. Technically, you’re taking Lyrica off label already unless you’re taking it for neuropathic pain due to diabetic peripheral neuropathy, postherpetic neuralgia, or epilepsy. Those are its approved uses. Nothing has been approved by the FDA for the treatment of erythromelalgia. Thus, if your doctor is unwilling to try other off label treatment options besides Lyrica, you should find a doctor who will.
I’ve been on Lyrica for a year or so. Yes, my brain is a total fog and I can’t remember simple words. The other day it was the word “process”. I can be embarrassing. My head is in a fog. I use to write but I just can’t now. My memory sucks and work takes 2-3 times as long to do anything BUT there is definitely less pain. It doesn’t do a lot for the flares, it just helps me not feel them. So as much as I hate the side effects, I would be really miserable and in uncontrollable pain without Lyrica. I have also been taking CBD oil and that has helped reduce the number of flares. Nothing solves it all though, I still have plenty of flares every day and lots of pain.
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I have been on lyrica 75 mg 3x a day for 2+ years now and it has been highly effective. I take it with an aspirin and sidenofil. Lyrica makes such a huge difference - fewer flares, they hurt less and are usually of a shorter duration. I did have the zombie symptoms with neurontin but, ironically, can think must more clearly on lyrica than off it because it shuts down a lot of my anxiety.
I have gained about 20 pounds, though. not sure if that is just age or the lyrica.
BTW, one of my doctors said that very high doses of vitamin C can stop the progression of EM if it hasn’t yet stabilized. Maybe something to look into. Something about binding and getting rid of oxalates.
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Do you mean sildenafil? Do you find that effective? Sildenafil isn’t typically prescribed for EM because it is a powerful vasodilator.
Lyrics for me was terrible I got off it pretty much instantly!
I did mean Sildenafil. I also thought it was an odd choice (and no insurance plan will pay for a woman to take it three times a day). It was the second blood flow drug my doctor tried. Her explanation was that she approached EM from two angles - chilling out the nerves and getting the blood that flows into the capillaries to flow back out (hence the Sildenafil). She does specialize in treating EM and so far so good.
Interesting. Has the Sildenafil reduced the frequency and/or severity of your flaring? How soon did you notice a difference?
I honestly cannot separate the impact of the three meds I take - since I started them roughly around the same time. Overall, the flaring is less common and less painful. Each flare lasts for less time. One data point - apparently different formulations of pregalabin effect people with neuropathic diseases differently. Two months ago CVS used a different supplier and I was effectively taken off of lyrica. The impact, after a few weeks, was severe making me wonder if the alleviation of most of my symptoms is a function of the lyrica.
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