robinul experiences

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Joined: Mon Jun 01, 2009 3:30 pm

robinul experiences

Postby hooloovoo » Fri Jun 19, 2009 10:09 am

Just to share with others...

I got a prescription for robinul from my doctor to try out. He'd never heard of using it for this, but thought it was a novel idea and was game to let me experiment.

Day 1, I took 1mg around 3 p.m. I noticed no effect at all.

Day 2, I took 2mg around 8 a.m. By midday I thought maybe some effect, but not much. I took an additional 1 mg mid afternoon and by evening my hands seemed a bit drier. Laying in bed that night with my lady I still had very slight sweating.

Day 3, I again took 2mg around 8 am on a fully empty stomach and didn't eat again for about 3 hours. Noticed slight bit of dryness but still nothing impressive.

Day 4, yesterday, I took 2 mg around 3 pm. I'd last eaten around 11:30 and had a few hours until dinner. By 6 pm I was dry. Like, really really dry. My girlfriend actually commented that my hands felt like sandpaper. It wasn't a terribly warm day, but still when we snuggled up in a chair together I usually get mildly clammy on skin that is under her skin, none of that. My hands were dry to the point of almost feeling stiff. I'd say on this instance, it worked *too* well.

So overall, hard to give a solid review. It seems some days it works differently than others. Some days 2mg didn't do much, some times it was just perfect and yesterday it worked too well. That makes dosing problematic... Perhaps I just need to make sure to lotion my hands more, today they still feel dry (even though I have the normal mild hand sweating, my skin still feels oddly dried out).

Side effect wise, the most annoying thing was a sore throat. I've had a mildly scratchy throat every day I've taken it. Not bad enough to be a problem, but enough to be annoying. I get no drowsiness or dizziness with it. My eyes seem to do fine (but they're normally watery from allergies). My mouth does get a bit dry. Hard to describe, even though I have saliva in my mouth my lips seem to get really dry and I get a bit of cotton mouth.

Overall, yes, it works and the side effects are tolerable. However, dosing is problematic and the side effects are annoying. In addition 60 1mg pills cost me nearly $70 (generic, still haven't met the deductible on my insurance). My plan right now is to continue on with iontophersis (the hand sweating bothers me more than anything) and hope it may kick in some day, and keep the robinul aside for situations when I know I'll really need extra help.

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Joined: Tue Jul 21, 2009 7:49 pm

Postby bama1295 » Tue Jul 21, 2009 8:01 pm

My doctor gave me 1 mg. strength to try. The first day I took one and I didn't sweat at all and it was a very hot and humid day. The bad thing was that my hands and feet swelled. My feet looked very swollen but I couldn't get my rings on because of the effect on my hands. My hands and feet are the only parts of my body that I don't have hyperhidrosis. It is mainly my scalp, face, neck, back and chest. So, the next day I took a half a pill or .5 mg. I didn't sweat and didn't swell noticeably either.

I'm loving the Robinul because the head sweating has been ruining my social life and my self esteem. I am a woman who likes to fix her hair and wear makeup only to see it ruined by sweating. I sip ice water all day long anyway, so I haven't noticed a dry mouth. I have noticed that I feel very "chilled out" or relaxed, not sleepy. It's almost like having a very slight buzz, so it is pleasant. As long as I have continued success with Robinul, I will continue to take it long term. I have tried everything else except surgery and I don't want that.

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Joined: Sun Jul 26, 2009 11:45 pm

Postby sahar » Mon Jul 27, 2009 10:29 pm

I have been using Robinul for almost 3 years now. I can't live without it. I have sweaty palms and feet. My feet don't bother me as much as my hands. My hands sweat so bad if I don't take Robinul. It is so embarressing. I can't shake hands with anybody. Even thinking about shaking hands with people makes me have sweaty palm. Robinul has helped me a lot but if I am nervous I still sweat, regardless.

My side effects are puffy fingers. Seems like sweat is stuck behind my skin but can't get out. I still think this was a miracle in my life and I am scared of thinking about being out of Robinul even for 1 day.

My current physician has terminated his contract with my insurance so he is an out of network doctor for me and evey time I go to him to get prescription I have to pay my out of network out of pocket. I have decided to change my doctor but no other doctor seems to know this drug. Does anybody know how I can find another physician to get this drug? what specialty should I look for? Does anybody know a physician in Southern California? thanks,

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Joined: Tue Jul 21, 2009 7:49 pm

Postby bama1295 » Tue Jul 28, 2009 1:57 am

I live in the south, so I can't recommend a doctor. I just called my Internist and he called in the prescription for me. We have a good doctor/patient relationship. If you have a Gastroenterologist, ask him or her since it is primarily a drug prescribed for IBS. I would think an internist or even a dermatologist would prescribe it for the hyperhidrosis if you explained your problem with it. You could have your records from your present doctor sent to the new one so they could see that you have been on the medication for a long time. There are lots of options as far as doctors go.

I have noticed that Robinul causes me to retain fluid and swell in my fingers and feet especially. What dosage are you on? I cut my pill in half and didn't have any swelling, but it was less effective on the sweating. Thank goodness for this drug.

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Joined: Mon Oct 12, 2009 7:32 am
Location: PA

Robinul Experience for my Hyperhidrosis

Postby sabola04 » Mon Oct 12, 2009 8:04 am

Wow, where do I begin. I am 23 years old and have been living with Hyperhidrosis since I can remember. I have hyperhidrosis in the hands, feet, underarms and even my face at times. I was always known to have cold and clammy hands when I was a kid and even still. This condition has been a nightmare for myself. I have become good at hiding the fact that I have hyperhidrosis but there is no escaping it. I avoided shaking hands, changed my clothes multiple times a day, constantly buying new clothes and shoes to replace the ruined ones from the sweat, washed my hands a lot. If I were out at the club/bar, I would always hold my drink in my right hand, this way if I were going to have to shake someone’s hand; my excuse for a cold wet hand was from the glass. At work I am constantly meeting new people and handling paper, it’s like a bad dream and cant get away from everything scary. I consider myself very out-going, friendly, and fun-loving and this at times can put a stress on my personality. Hyperhidrosis will take over your life and I think about it 75-85% of my day.
I never have a problem meeting new people or never had an issue with meeting guys, just how do you tell someone you don’t want to hold their hand when your out because of the sweat. I was always jealous of the guy and girl that could hold hands; I wanted that but almost never could do that with my boyfriend or guy I was with. The man I am with now knows about the hyperhidrosis, I don’t think he understands or realizes how bad it really is. I still find myself hiding my hands from him for fear it will be gross to him.

Now to the point of this forum – Robinul. I have been on Robinul for a week now and I don’t think I could ever go without it. I am only on 1g twice a day for two weeks and then will increase to 2g twice a day. I can notice a difference already. I understand the side-effects and understand that if I were to do a physical activity that I could die from not sweating. My doctor and I talked about everything, I understand that a week or two before I compete with my horse next summer that I must stop taking Robinul, just to ensure that my body is able to cool down.
I am now In Control of my Hyperhidrosis. I tell myself when to sweat and when not to, just with this simple pill called Robinul.
I have also used botox in the underarms and will agree that that has helped me out, but I needed something to help all areas affected by Hyperhidrosis. My doctor informed me that I can still receive Botox injections under my arms while I am on Robinul but I don’t think that will be necessary since Robinul has truly worked for me.

I’m sure we all agree that having this medical condition is stressful, can put a damper on self-esteem and will take over your life if not treated. I hope that everyone who has Hyperhidrosis gets the chance to finally know what it feels like to be considered “Normal” and not sweat.

Please feel free to message me and share your story or ask questions.

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