Patients ratings of robinul

[Jezza]

Hi there, since there is always a lot of questions about the use of robinul etc; here is a link with experiences of people who use it. It's generally a positive story with the drug being rated 4.1 out of 5 with 47 ratings (1 or two are for IBS though)...although there may of course be some positive selection; people who have success might be more inclined to speak out about it maybe...But there is also some information about dosages etc...So it might be useful

Anyway, here's the link...

ROBINUL: Side effects, ratings, and patient comments

It's the second result you get on google if you search for 'robinul hyperhidrosis' but for some reason, I'd never read this particular site before and these 47 stories together with what I already know about the drug have given me the best idea yet of what you can expect from this drug. It might also be useful if you have a reluctant doc or something you can show this, it's pretty hard to deny the potential of this drug in hh treatment after reading this...

Good to see it gives relieve to many. Shame it's not readily available in Europe.

 

[Jezza]

@release

I see you're in the UK...Is the drug just available there or do you have to import it yourself from overseas?

 

[grimaldi]

release: the effect kicks in after some 30 mins and lasts for about 10-15 hours. better to take it immideatly when you wake up. and eat correct. more about this in other threads here...

 

[margiehope]

Jezza--thanks as usual for your research--found the material interesting.

I'm surprised so many seem to have good results with quite low doses--on hot or active days I need 6 mg. On the other hand, don't have as many side effects as some seem to,

The "facts" about maximum dosage are pretty random, though. Someone said 4mg, I was told "8 mg in divided doses", another poster mentioned 10 mg.

Anyway, anecdotal evidence seems the most helpful, as most doctors are clueless. Have a new derm who asked (in a concerned way) about dry mouth. Sometimes, yeah. Better than splashing sweat from face and head? Oh yeah.

Anyway, once again, appreciate your sharing your research.

 

[grimaldi]

What defines a maximum dose?

The "worst thing" with taking anticholnergics is that you risk a heat stroke because of your decreased sweating. That's what the instructions says for "normal persons". But as a heavy HH-sufferer, I can't see how you would risk a heat stroke, since you are still sweating even after a good 8 mg-dose.

I will start to take heavy doses on certain days the coming wee and see what it does. I doubt I will faint.

 

[grimgolem2]

I have never been to a dermatologist.. can they give you a prescription for this stuff? Sounds like it works pretty well..

 

[margiehope]

I have never been to a dermatologist.. can they give you a prescription for this stuff? Sounds like it works pretty well..

Well, they CAN, but most derms seem negative. Where I live, it's actually OTC, but I get a prescription from my family doctor--means I can claim it on income tax.

So, a derm could prescribe it, but depends on the doc.

 

[grimgolem2]

What do you do in the case of them turning you down?

 

[margiehope]

What do you do in the case of them turning you down?

Well, some people order online. Don't know the U.S. sites, but in Canada it can be ordered through pharmacy.ca . They are quite reputable, will try to ensure you have no contraindications. Oh--the brand name is "Avert".

 

[grimgolem2]

Oh wow, that is very nice. reasonably priced as well it seems. I've found a few other sites but the prices were astronomical.

How do you know how much to take? Do you just start at like 1mg and then work your way up? I'd consider myself an extremely heavy sweater. I sweat all over my entire body. Face, Back, Chest, Armpits, and of course Hands/Feet. I want to try this drug combined with Iontophoresis on my hands/feet.

Thanks Margie =)

 

[margiehope]

Oh wow, that is very nice. reasonably priced as well it seems. I've found a few other sites but the prices were astronomical.

How do you know how much to take? Do you just start at like 1mg and then work your way up? I'd consider myself an extremely heavy sweater. I sweat all over my entire body. Face, Back, Chest, Armpits, and of course Hands/Feet. I want to try this drug combined with Iontophoresis on my hands/feet.

Thanks Margie =)

Hey "Grim"--Price is OK if you don't have big shipping charges.
Any of us would be leery of telling you how much to take--not our job, and it is very individual anyway.

When I got my first Avert, the instructions were "up to 8 mg a day in divided doses". If you want my opinion, (and I guess you do), 1 mg. won't do much for a heavy sweater. On a really hot or busy day, I take 6 mg an hour before eating breakfast.
It usually works well, but like I say, it's really different for each person.

Good luck!

 

[bigchris]

Margiehope, do you take Robinul every day? Have you experienced any loss of effect of the drug? (I'm sure theres a proper word for it but I'm too tired )

 

[margiehope]

Margiehope, do you take Robinul every day? Have you experienced any loss of effect of the drug? (I'm sure theres a proper word for it but I'm too tired )

Hi Big Chris--No I don't take glyco (I'm in Canada, so it's Avert) every day--varies depending on temperature, my level of activity, etc.

I think "loss of effect of the drug" is a good enough description, though "building up a tolerance" might work too. Happily, my answer is no--wonder if I would if I took a fair bit every day. Anyway, have been on the stuff for a long time now, and it still works well for me.

 

[Jezza]

I just don't think building up a tolerance is much of an issue with glyco. I think in the beginning the body may adjust to it a little, but it's not like the body is making antibodies to the med (I would think).

HH is not a viral or bacterial infection (I think, hey who knows, but most likely no), so I just don't see the tolerance thing happening.

I don't know, maybe that's wishful thinking, I know some people disagree with me on this, but personally I don't see any technical reason for it to happen. As you native english speakers say, something like 'if you always do what you've always done, you'll always get what you've always got' oftentimes holds true.

 

[bigchris]

Ahh I see, I had just heard somewhere about people building up tolerance towards it. How have any people in the UK managed to get a prescription for it?

 

[grimgolem2]

margie.. does the glyco stay in the system for a few days? you said you dont take it daily.. whats your sweating like on off days? i took 4mg this morning.. very happy so far. how long until it begins to fade?

 

[margiehope]

Hi "Grim"
No, I don't think glyco stays in your system.

I adjust the dose. If it's cool or I'm not doing much, I don't take it, so sweating just isn't a problem then.

Again, can't give you an exact answer as to "how long until it begins to fade". If I take it an hour before breakfast (important) I'm usually good all day. On a really hot and humid day, I might take another 2 mg. capsule late afternoon--but that's rare.

Reactions are fairly random, though--you'll have to find what works best for you. Good luck!

 

[Uber Schnitzel]

Ahh I see, I had just heard somewhere about people building up tolerance towards it. How have any people in the UK managed to get a prescription for it?

From what I've heard/seen it's unlicensed for use in the uk so not many doctors are willing to prescribe it (or many they just can't) I think I'm gonna just have to pony up the dough and pay for it myself. Not good when you're already low on money but as you will all know if it works it'll be worth every penny