Has anyone been prescribed this medication for erythromelalgia? My son just was today and I was reading side effects and it has me worried.I want something that will help him with pain but not sure if side effects are worth it?
I was taking gabapentin started at 100mg 3x a day and increased gradually until I was at 900mg a day, the medication helped very little 
I noticed weight gain, mostly water weight. I personally didn’t have many side effects. And no withdraw. Am not taking lyrica 75mg 3x a day and it has been amazing! Best of luck to your son!
I take this. Usually 5 or 6 100ml per day. I take some around 3pm and the rest when I go to bed.
It think it works - well sort of anyway. It does relieve but not cure it. Expect to feel a little sleepy / dozy to start with. The side effects have worn off with me though.
How old is he though?
Simon
I Am On This now with little benefits. However I am still in the process of slowly increasing my dose. I started worth 100 MG 1 a day worked up adding 1 more a day after one or two weeks of the previous dose. I am on 500 MG a day now and have hopes it could still help when my dose is higher. I have had to increase very slow because it knocks me out cold. After a while on one dose I get used to it and can stay awake but then we increase it and I’m back to sleeping or fighting sleep all day.
I haven’t had any other side effects though.
I how this helps your son and with little or no side effects.
I tried both gabapentin and Lyrica, with no reduction in burning pain. I did have a lot of side effects, so had to discontinue both.
Hope it works out for you!
HI Concerned Mom.
While I'm not on Gabapentin (I'm on a cousin called Lyrica which is believed to cause fewer side effects), I suggest that you speak to the doctor about starting your child on a very small dose of Gabapentin (perhaps 1/4 of the smallest dose given in pediatrics). And then gradually increase the dose every 4-5 (or more) days until positive effects are seen or problematic side effects come. If that happens then call doc and reduce the dose.Children are very sensitive to meds (as are some adults), so titrating the proper dose is a much safer way to proceed. The smaller doses can be compounded by a compounding pharmacy, but the meds do cost more, but it is worth it. If that option is not available, then you may be able to split a tablet or capsule into halves or quarters yourself. I had to do this for years with my oldest daughter who started with ADHD at 4 and eventually developed early onset bipolar disorder. Sometimes we started her on 1/8 of the lowest pediatric dose--and on several occasions even that much caused unacceptable side effects. I wish you both well and hope that Gabapentin will provide some relief.
Dragica
Before getting EM, I was already on gabapentin (300 mg/day) and nortriptyline (40 mg/day) for peripheral neuropathy. I've had very mild side effects: dry mouth, constipation (watch out for that--recommend stool softener at least), a little grogginess if I don't get enough sleep. When the EM came on, my rheumatologist said that the medication to increase for the burning was not gabapentin but nortriptyline. So I did increase the nortriptyline, and it helped. Nortriptyline is a very old, cheap, low-impact tricyclic antidepressant. So you might ask the doctor about it.
By the way, both gabapentin and nortriptyline have to be increased gradually, so you don't feel any effect immediately.
Best wishes to you and your son.
Lynn
I wrote asking about Pregabalin interactions but obviously it's very similar to Gabapentin. Interesting this discussion as I was hoping that one day I may risk taking this especially if I could knock off my buprenorphine for rheumatoid arthritis first, but by the sounds of it isn't doesn't sound that great for EM and so perhaps not worth going through the agony of stopping my other medication. Also I notice the low start dose that people are given e.g. 100 mgs 3 times a day. My GP gave me 300 mgs twice a day as a start dose! Perhaps that's why they had the effect they did and not the interaction, although I did find on the internet that there is an interaction between Gabapentin and buprenorphine which can cause a coma or even death! I have a friend who is on Gabapentin and she said that my start dose was far too high so obviously she is correct. I thought she was but it's nice to see what other people are started on.
i took Lyrica [50 mg 2 times a day] it helped with the pain.. my Doctor sent me to a rheumatologist and she put me on Gabapentin, i wanted to slam my head against the wall.. i could not think or function at all. i'm back on Lyrica at 225 mg, 5 years now.. Good luck and God Bless..
Been on Gabapentin for 3 years, 300mg at night and 100mg in case of major pain during evening. No side effects other than weight gain (lots) was on lyrica before but felt
Horribly depressed, which is not at all or becer has been an issue fir me. Had to stop lyrica but got much more help with gabapentin
Good luck, God bless
everyone is different! so what ever works is a good thing..
Thanks everyone for your input!
He's been started on 5 ml's twice a day. The doctors had us do 2 ml's once a day for a few days, then 5 ml's once a day, and now we've been on 5 ml's twice a day for a few days. It's working wonders. I forgot his dose last night and he woke up in pain for the first time in weeks. Only side effects we are noticing are diahrrea (but he could have a stomach bug) and he's been irritable the last week (talking back when he NEVER does that) but he's also getting a molar so it's so hard to tell what is just life and what is the med!
He's 5 years old :)
Dear Sheltielife,
Oh dear! How horrible for you - bless you. Tritation of medications is really important to minimise side effects. Gabapentin is the predecessor to Pregabalin. Many folk find Pregabalin has less side effects - Im one of those people ;). You are correct in that starting dose usually 50 mg or 100 mg twice or three times daily. Some EM'ers just take it once a day low dose (200mg) at night to aid with sleep. Usual effective total daily dose reported ■■■■■■■■ mg. Majority of EM'ers who take Gabapentin/Pregabalin stay around/under the 900mg dose daily. Its really what works for you. Many of us can not tolerate it and therefore do not take it. EMjudy's experience is a pretty common one.
Glad you settling into community. Dont forget to give mod team a shout if there is something you cant find/access.
Biggest hug
God bless
x
I was really tired on it. Didnt help for me since i dont have pain from my EM.
Hi,
I’ve been on Gabapentin since the very beginning (which was aged 12) and I am now turning 21 this year. I think compared to other medications that could be prescribed for Erythromelalgia, Gabapentin is less risky and far less likely to cause more serious side effects than others (doesn’t mean that it won’t, but I think it’s far safer than the rest!). Gabapentin is usually given first I think for this reason!. The only side effect I have had with it is severe weight gain BUT that was only at the major doeses- which is the maximum dose it can go up to (1200mg 3x daily) that was only when I experienced that. I am now on 600mg morning and 300mg at night and this is working fine (been a few years now on that dosage). In the beginning when I started out on Gabapentin the issue was we’d get a dose, it would work for a few months, then my body would build up a tolerance to it and it would stop having affect so an increase would have to happen.
Inbetween I’ve tried lots of other meds for EM and I’ve not agreed with them so Gabapentin was always my better option- even if it didn’t always take my burning away. Good Luck to your son 
Remember, every medication is going to come with an arms length of side effects but the good could out-do that scary list, there just there as a precaution! As long as you are “aware” then you don’t have to worry! x
My daughter went on it at 3.5yrs and it made her crazy…climbing up the walls with no fear of getting hurt. She did / does much better with a drug called Nortriptylne. Alas all drugs have side effects my advice is to give the least amount needed to get comfort. The more given the higher risk of the side effects. We started at a higher dose and slowly brought it down. Best of luck and lots of supporting hugs to u it is not easy dealing with things like this.
We've seen a few side effects but not many so far, he's been a tad more aggressive than he was before but it's so hard to tell what is side effects and what is just normal kid behavior. I guess he is also technically on aspirin everyday as well, but that is due to his heart and alone did not help with his legs.
I've been taking it for almost a year, now. The only side effect I have had is dry mouth. Remember, a side effect has to be listed even if only one patient experienced it. Just because they're listed, does not mean they are at all common.
I'm taking 900mg/day right now -- started out with 200mg/day -- and have not seen anything but the dry mouth. I am an older adult so I'm not sure what side effects may be more common in children. You should ask your pharmacist and prescribing doctor. They obviously didn't fill you in enough on it in the first place.
Good luck to your son!
I started taking Gabapentin about a year ago, and started at a 1x day 300 mg dose. Increased over time to 2400 mg per day taking 600 morning 600 afternoon and 1200 at night. At first the morning and day doses made me drowsy so my doctor ok'd doing less in morning and afternoon and more at night-- since my symptoms were worse at night anyway. Overall it has helped me and provided a lot of relief from the nerve pain/burning and sensitivity of my legs. Other than the drowsiness I havent had other side effects.
I also take magnesium citrate (supplement available at heath food stores) for swelling, seems to help keep my swelling at a manageable level and I do not have to elevate as often.
I think when looking at side effects of medications you really have to weigh wich is the lesser of the evils. As an adult who has felt the nerve type pain associated with this illness I can tell you that personally I made the decision to take this medication, knowing full well the many possible side effects and even experiencing some of the negative psychological effects it can have. The level of relief I experienced was worth it to me. That being said I’m also an adult. I don’t envy you right now having to make these choices. Do tons of research because knowledge is power and I’m sure you will make the best choices possible for your child.