Hey, this is a question for the gents out there using minoxidil (foam or liquid)
I was wondering if it causes any flare ups to occur in the hands specifically because you have to apply it to the scalp with your fingers. I know that it is a powerful vasodilator, so I am kinda weary of using it, even if it will only touch my hands for a short period of time to apply the stuff, and then wash it off. Am I just too paranoid?
Thanks in advance
I know I'm not a man and I don't know what minoxidil is but could you try applying it wearing rubber gloves to protect your hands touching it.?
Thats actually a really good and simple idea...I didnt think of that! Minoxidil is the active ingredient in Rogaine actually, and it "is a nonprescription medication approved for male pattern baldness and alopecia areata. In a liquid or foam, it is rubbed into the scalp twice a day. This is the most effective method to treat male-pattern and female-pattern hair loss." (WIKIPEDIA)
Ah, I guessed it was some form if hair treatment, I think like with most things with em it’s a bit trial and error. Maybe you could give it a go
And see if it has any effect. If it’s chemical based and goes into your skin you might find it gives you a flare without even touching it and I guess you need to ‘weigh up’ the pros and cons. Let us know how you get along if you do decide to try. Good luck.!
Hey Terminator,
As its a vasodilator- might even help hands. I agree with laura - give it a go. Why shouldnt a vasodilator be topical rather than orally ingested. Topical lidocaine is readily prescribed and helps some Em'ers manage symptoms - albeit briefly. I would be very interested to hear what happens.
Good luck with medics
God bless
mads
Very encouraging words! There doesnt really seem to be any forums dedicated to the question when I do a google search, but there are with minoxidil and raynauds. Apparently minoxidil as a topical vasodilator does not significantly help as a treatment, although I dunno if I would advise it as it can grow hair almost anywhere on the body. SO, you have to be very careful with the stuff, apparently!
Hmmmm dont know John - we could just call you John YETI Conner instead lol!
God bless
mads
I'll Be Back...with a thick coat of fur! :)
Hello John
Very, very interesting question. Because I asked myself the same one. I've been on minoxidil for décades, in particular on high doses since 01/2006 (rthe equivalent of twice 18% a day). I decreased the dosage three years ago (to twice 14%) and in may 2013, pushed back to 2x18%. My EM symptoms began in june2013. NO PAIN, like you, and my hands are by far the worst. Only difference with you: I don't apply minox with my hands, but with a dropper.
last december, as the symptoms were getting worse, I stopped minox cold turkey. I had some improvement within a month but put it on another thing I took: revivogen. Do you take revivogen?
I'm on 2,5g of finasteride as well. Are you on this too?
After stoping minox, I had of course an awful shed then resumed both high dose minox and revivogen. Got the hair back. Upped finasteride from 2 to 2.5. Dropped since reivogen. No improvement.
I've roamed through the internet for possible links between minox and erythermalgia with not much of a result. That's why I didn't drop it. Did you try?
Please, can you tell me what your situation is now.
brm.
Woah, I didnt know they made minoxidil that strong haha. I bought the KIrkland Foam 5%, but have not gotten around to starting it yet cause I am afraid of the initial shedding phase, as well as the affect it could have on my hands when I would apply it (triggering a flare). And, I have tried ketoconazole shampoos in the past and have had allergic reactions to it (trouble breathing, irregular heart beating, brain fog), so I am weary of what I put on my head from now on. Once I get the nerve to try it out, I will let you know what happens. My receding hairline has always been very slow, but is starting to become particularly annoying of recent, so I will try to do something about it soon.
I am actually curious to know how finasteride has been working for you! I am too chicken shit to try it out. I got a prescription from an MD for the stuff, but am afraid to try it. Potential sexual sides scare me the most. But I guess you will never know until you try right.
And I have not tried Revivogen, but have heard of it. Is it basically keto shampoo and minoxidil in a set? I have tried Nisim shampoo and their their Hair growth extract, which I used for a number of years with no results. Just a waste of money, like most hair loss "solutions".
But onto the EM situation, I went to a dermatologist in Toronto who knows about EM and how to diagnose it recently, and he has told me that I DO NOT have EM. He says it is autonomic dysfunction, which basically means he doesnt know. EM is an autonomic dysfunction, but I guess not the one I have lol. I will be trying other doctors to verify this.
The flaring in my hands is definitely neurological and gets worse when exposed to changes in temperature. I have reason to believe it is also genetic because my dad has similar symptoms to me, but not as bad. I have had it ever since I hit puberty, so have been dealing with it for over half my life. Anyways, I can either have really cold clammy, off colour hands or hot hot sweaty red hands, but it is all dependent on temperature (has never brought me pain of any kind...I will upload some pics of them when I take a hot shower).
People on the site mention that they get flares when exposed to heat, so they move to colder climates, but this would not work for me because then I would get the other extreme. Its like a seesaw, and there is a tipping point in each direction that I am always weary of. I have considered a sympathectomy, and im almost sure it would help, but I feel like it is too risky, and is not a solution or cure for anyone by any means.
You may want to go to a doctor who knows about EM and get diagnosed! There is a directory on this site so you can find a doctor who can actually help.
Hey Tizzy!
Its good to hear that minoxidil is helping you! You may want to try minox foam instead. Apparently it is not as greasy, but because you have longer hair, it may be a bit of a a hassle to apply directly to the scalp.
I guess I will not know if it triggers my flareups until I try it myself. Not looking forward to the shedding phase haha!
Also, I saw that you are living in Queensland! I moved from Toronto to Melbourne recently to get some teaching experience. Its interesting to know that you are also in Australia!!
@John Conner
Thank you for responding.
Your photos give a good picture of ... my hands. Though I think mine are worse. I am now practically sure that I got this condition from minoxidil. It all started with bloated veins. Didn't pay attention first, then did. I stopped minox altogether and got only minor improvement within a month. So I laid it at revivogen's door (topical antiandrogen (saw palmetto)). And after 4 more months: no result. I have no pain, but I think that the whole process worsened my up to then mild Raynaud's.
If you don't mind too much your hair's receding line, stay away from finasteride for sure (sexual sides are no legend and represent a way higher probability than Mercks prétends), and possibly minox too as you're liable to have some vein dilating effect. If you try this one, begin with 2% every other night or so.
Have you tried anything for your hands (aspirin? maybe alpha lipoïc acid?)
Thank you! Yes, it is good to have loved ones around you to help you back up when you are feeling down! Too bad I dont have any family here haha, but I am starting to make some good friends, and the kids definitely help brighten my day :)
Pretty soon school holidays begin so I will be doing some travelling! Have a friend in Sydney so I think I may hit that up!
Tizzy said:
Welcome to the other side of the world-have met a few Canadians here and in NZ. You seem a friendly lot,so I guess there shouldn't be many problems fitting in with us Aussies. I was haveing fantasies of moving to Canada and living in as cold a climate as possible untill I got reynauds in my hands and feet. Also I suspect central heating and fireplaces may not be ideal either! Husband thinks Hobart or Melbourne - not so sure about Tasmania ,butthen again could quite fancy myself as a fly fisherman....icy streams , nice scenery not too strenuous . Then again all those coffee shops in Melbourne. Hope your teaching experience here is useful. I have two sons 18and 20years who alternate between being very adult and being 2 year olds! Empathy not fully developed yet but they are hilarious so that is help enough on a bad day! Tizzy
John Conner said:Hey Tizzy!
Its good to hear that minoxidil is helping you! You may want to try minox foam instead. Apparently it is not as greasy, but because you have longer hair, it may be a bit of a a hassle to apply directly to the scalp.
I guess I will not know if it triggers my flareups until I try it myself. Not looking forward to the shedding phase haha!
Also, I saw that you are living in Queensland! I moved from Toronto to Melbourne recently to get some teaching experience. Its interesting to know that you are also in Australia!!
No problem brm, we both have very similar interests in mind, so I definitely don't wanna miss the opportunity to talk to someone like me!
I have tried Aspirin but it only made my hands extremely cold I found (like way more than normal), so perhaps it would help with EM patients, but it only seesawed me from one side to the other. Do you also get deathly cold hands in colder climate? lol. I have not tried Alpha-Lipoic Acid supplements of any sort, but I do eat my spinach, potatoes, carrots, tomatoes, etc, so it could be helping, but not to any desirable extent. I also take Omega 3 supplements, now Krill Oil, and I found that slightly helps too.
I am thinking of going to a neurologist when I get back to Canada, and then to a homeopath, cause you never know right. I know mindfulness practice or meditation also help to keep me calm, and regular exercise also helps in the long term, but not the long long term if you know what I mean.
So its interesting that you say minoxidil started everything for you. Mine started at adolescents, and I was nowhere near minoxidil, however, my parents said that I used to wash my hands a lot when I was a kid, to the point where they would turn red. I think that Jim Parsons, from the Big Bang theory (Sheldon), also said that he used to be OCD about washing his hands when he was a child too, and his hands basically look the same as mine. It could be a possible link, but I wouldn't even be able to start to guess. Next time you watch the show, take a closer look...I actually wouldn't mind discussing it with him, because he is self-conscious about it too (he has the makeup department put coverup on his hands so they aren't as bad apparently).
Anyways, I digress lol. Would it be possible to post some pictures on your wall? I would be curious to see...that sounds creepy haha!
P.S. Yes, I have tried Saw Palmetto as a supplement, and it made me feel very similar to the Keto shampoos, minus the heart palpitations...but the shampoos both had Saw Palmetto, so I am not 100% sure the Ketoconazole is the issue. I will be using a shampoo with Keto as the only active ingredient soon, but I am weary cause the last stuff really messed me up for a day or two :P
brm said:
@John Conner
Thank you for responding.
Your photos give a good picture of ... my hands. Though I think mine are worse. I am now practically sure that I got this condition from minoxidil. It all started with bloated veins. Didn't pay attention first, then did. I stopped minox altogether and got only minor improvement within a month. So I laid it at revivogen's door (topical antiandrogen (saw palmetto)). And after 4 more months: no result. I have no pain, but I think that the whole process worsened my up to then mild Raynaud's.
If you don't mind too much your hair's receding line, stay away from finasteride for sure (sexual sides are no legend and represent a way higher probability than Mercks prétends), and possibly minox too as you're liable to have some vein dilating effect. If you try this one, begin with 2% every other night or so.
Have you tried anything for your hands (aspirin? maybe alpha lipoïc acid?)
Hello John
Yes, definitely super cold hands very often, even in summer.
Lipoic acid is used in Germany to help with neuropathies. Some people have success: they seem to regain one "step" on the neuropathy scale in a few months.
What kind of meditation do you practice? How often?
I'm also used to washing my hands very often. But generally not the back of them. Only the Inside.
I should post pix soon.
To this day I remain convinced that minox is the culprit. Minox does'nt seem to be a calcium channel blocker but it is a antihypertensive drug. And antihypertensive drugs come first line in drug-induced EM.
Time will tell...