http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1719230/
I've made this profile for my girlfriend who was recently diagnosed with EM. I've been trying to help her cope with this.
I have never seen anything about sodium nitroprusside as treatment for EM. How interesting. You have taught me a new line to explore already.
I look forward to seeing what some of our more knowledgeable members will know about this.
Nel
Hi Tyler,
Welcome to the LWE family. I have experience and knowledge of Sod nitropusside in the treatment of EM. It is a vasodilator, and given via infusion. It has had fairly good results for erythromelalgia that is resistant to' aspirin therapy' - notably in pediatric patients.
What is it exactly that you wanted to know Tyler?
God bless
mads
Hi guys!
@ dkel9307: Thank you, I've been researching a bit. Thanks to this site and a few other sources on the internet I've gathered some information on how to deal with it.
Since she has been recently diagnosed with EM and that too in its nascent stage(hope it remains there), Ultracet is helping her pain.
@ Nel: Hey Nel, glad I could. :)
@Mads: Thank you Mads. Yes, my girlfriend was resistant to Aspirin. It showed no difference to her pain or other symptoms. We're both 23, so not exactly pediatric. Haha. Her dad was diagnosed 5 years ago with Peripheral Neuropathy(because of his diabetes), so I'm guessing its Primary EM.
What was your experience with Sod nitroprusside exactly mads? In terms of pain relief, any remission of some symptoms(I know I sound a bit desperate), side effects etc.
I'm really glad this community is so helpful to each other.
At my age so does 49. Still a spring chicken:)
I haven't tried this myself but I have tried Diliazem in pill form. This is a vasodilator and it only made mine worse. I know it sounds crazy to even try a vasodilator being the excessive dilation is the problem but I know it does help some people. It depends on the root cause of the EM which is often difficult to determine.
I say it is worth a try and if it doesn't help or makes it worse just discontinue it and move on to the next possible treatment.
I wish I could of been more help.
Take care,
Alina
Hi Tyler,
what medications are you already taking - if anything as there are quite a few meds you could try. You need to have a polypharmacy approach in order to better manage EM symptoms. One medication - will not suffice as a rule. Its really case of trial/error. I assume you have been offerered Sod nitropusside? Or are you just interested on the basis that it seemingly works well in aspirin resistant sufferers;) . Not everyone requires a vasodiliator medication. Like Alina , Diliazem didnt help me. The basic medication to start taking is Aspirin, which usually works fairly well in Primary. Thats a real shame your girlfriend is resistant. Have you started taking it?. Aside the vasodilator route there exists CCB and SCB ,immunesuppressives, SNRI ......etc.
What have your blood tests shown? Any lupus? RA? Please let me know what exactly you/girlfriend are taking/have been prescribed and Ill get back ito you with other medications that EM'ers take or try /information/links OK.
Glad you found us!. LWE will do their utmost to offer you and your girlfriend support.
I sent you the XENON link re: research study. Might be good idea for you and girlfriend to apply. If lucky you could get DNA .Its free!.
Also- the 'information for new members' post has wealth of information
Wishing you both a 'comfortable' night
God bless
mads
Tyler said:
Hi guys!
@ dkel9307: Thank you, I've been researching a bit. Thanks to this site and a few other sources on the internet I've gathered some information on how to deal with it.
Since she has been recently diagnosed with EM and that too in its nascent stage(hope it remains there), Ultracet is helping her pain.
@ Nel: Hey Nel, glad I could. :)
@Mads: Thank you Mads. Yes, my girlfriend was resistant to Aspirin. It showed no difference to her pain or other symptoms. We're both 23, so not exactly pediatric. Haha. Her dad was diagnosed 5 years ago with Peripheral Neuropathy(because of his diabetes), so I'm guessing its Primary EM.
What was your experience with Sod nitroprusside exactly mads? In terms of pain relief, any remission of some symptoms(I know I sound a bit desperate), side effects etc.
I'm really glad this community is so helpful to each other.
Hi Mads,
Before I reply to your previous message, I want your advice/take on this. Yesterday she'd consulted a dermatologist for 2nd opinion and he said there was a chance of it being EM but he wasn't 100% sure. Hence my girlfriend had to undergo a battery of tests for Hep B, Hep C, P-ANCA, etc. the results of which we will know only after a week(They had to be sent to a nearby city). Doctor wasn't sure because her symptoms were a partial match. Though the bottom of her feet looked pink (earlier, she was fine when she visited the doctor though), there was no pain when poked at the area. The doctor said that there would be pain when the pink/red area is touched.
So my question is in the very early stages of EM does your feet hurt when poked at the area which turns pink? Also, she complains a lot about muscle pains in the legs, and very rarely about them burning. 90% of the time its just horrible muscle pains upto her thighs without burning. Is this usual in EM cases?
Yes, Aspirin/Disprin have had no effect on her. Also Pregablin, which only made her sleepy. For now, she's using just Ultracet(composition: acetaminophen and tramadol), which keeps her almost pain free, about 90%.
I was asking about the nitroprusside because I was researching about this on the internet and sod. nitroprusside and Licodaine IV with Mexilitene therapy cured EM. So, I was just hopeful.
We haven't explored anything else. Rather, we don't know much about the condition as well. So, I came to this community for help and information :)
I'm not sure if the blood tests checked for Lupus or RA. I'll have to ask her( We're in a long distance relationship).
I've read somewhere in this community itself that in some cases SCBs and CCBs have made EM worse. I have no idea what immunosuppresives, SNRI means? I'll google that :)
Yes, I'll enrol her for the Xenon drug test right away.
Thanks a lot Mags and everyone! Really appreciate that everyone is helping us out!
Thanks Alina. So when you say it has made the condition worse, do you mean it made EM worse only while you were on it or forever?
Alina Delp said:
I haven't tried this myself but I have tried Diliazem in pill form. This is a vasodilator and it only made mine worse. I know it sounds crazy to even try a vasodilator being the excessive dilation is the problem but I know it does help some people. It depends on the root cause of the EM which is often difficult to determine.
I say it is worth a try and if it doesn't help or makes it worse just discontinue it and move on to the next possible treatment.
I wish I could of been more help.
Take care,
Alina
Hi Tyler. It only made it worse while it was in my system. it went back to my normal EM Within a day of not taking it. I took it for a few days even though it seemed worse because I could of just been having a bad day but it was consistently worse for me so I stopped. after a day or two you never would of known I took anything. It is worth a try and if it doesn't help or makes it worse just stop the meds. I know others have found benefits from vasodilators.
Take care,
Alina
Just a short reply to the question: does it hurt to poke the area which turns pink/red? Speaking for myself only it doesn’t hurt to prod at it though if I step on a little Lego brick in my bare feet it seems to hurt disproportionately. As for the muscle pain, I don’t have that. My muscles jump and jerk wildly but not painfully.
Nel
Hi Mads,Before I reply to your previous message, I want your advice/take on this. Yesterday she'd consulted a dermatologist for 2nd opinion and he said there was a chance of it being EM but he wasn't 100% sure. Hence my girlfriend had to undergo a battery of tests for Hep B, Hep C, P-ANCA, etc. the results of which we will know only after a week(They had to be sent to a nearby city). Doctor wasn't sure because her symptoms were a partial match. Though the bottom of her feet looked pink (earlier, she was fine when she visited the doctor though), there was no pain when poked at the area. The doctor said that there would be pain when the pink/red area is touched.
So my question is in the very early stages of EM does your feet hurt when poked at the area which turns pink? Also, she complains a lot about muscle pains in the legs, and very rarely about them burning. 90% of the time its just horrible muscle pains upto her thighs without burning. Is this usual in EM cases?
Yes, Aspirin/Disprin have had no effect on her. Also Pregablin, which only made her sleepy. For now, she's using just Ultracet(composition: acetaminophen and tramadol), which keeps her almost pain free, about 90%.
I was asking about the nitroprusside because I was researching about this on the internet and sod. nitroprusside and Licodaine IV with Mexilitene therapy cured EM. So, I was just hopeful.
We haven't explored anything else. Rather, we don't know much about the condition as well. So, I came to this community for help and information :)
I'm not sure if the blood tests checked for Lupus or RA. I'll have to ask her( We're in a long distance relationship).
I've read somewhere in this community itself that in some cases SCBs and CCBs have made EM worse. I have no idea what immunosuppresives, SNRI means? I'll google that :)
Yes, I'll enrol her for the Xenon drug test right away.
Thanks a lot Mags and everyone! Really appreciate that everyone is helping us out!
Thank you Alina, she is able to manage the pain with Ultracet for now. We'll try vasodilators etc if the symptoms get worse after consulting with her doctor. I really appreciate that you took the time to help us.
Alina Delp said:
Hi Tyler. It only made it worse while it was in my system. it went back to my normal EM Within a day of not taking it. I took it for a few days even though it seemed worse because I could of just been having a bad day but it was consistently worse for me so I stopped. after a day or two you never would of known I took anything. It is worth a try and if it doesn't help or makes it worse just stop the meds. I know others have found benefits from vasodilators.
Take care,
Alina
Hi dkel, thank you for all the advice. Yes, she has been taking pictures right from day 1. That's how we have shown it to the doctors.