Antocholnergic Guide (Robinul, Probanthine etc.)

[grimaldi]

Hello,

I have been hanging around ETS & Reversals for a while, and am new to this forum, which probably suits me better since I didn't have ETS albeit I was considering it. I have recently been diagnosed with an ANS disfunction/imbalance, were my Sympathetic Nerve System is overactive and causes blushing, palpitation, "fight and flight" etc. On top of that I have Generalized Hyperhidrosis, which make me sweat profusely head/chest/back/butt/legs in nervous situations, hot/humid environment and exercise. And I mean profusely. I guess you all can relate to the problems, so I don't have to give any examples of to which extent this can destroy lives.

What a wish to create here is a thread were everyone can share experiences with different kinds of Anticoholnergic drugs, i.e. Robinul, Probanthine, Ditropan etc. I am currently living in China and the hospital here didn't manage to provide me with Robinul as I wished, but instead they gave some Probanthine. It has been useful to a certain extent, but far from the relief I was hoping it to be.

A website I use to look up is "ask a patient", were patients using the drugs can rate it and give short comments about its effect. As for there, the Robinul seems to be way more effective than Probanthine. Is there anyone here who tried different kinds of antocholnergic drugs, and found one was more effective than the other?? Because I still have hope for Robinul, even though Probanthine didn't work as I hoped.

ROBINUL: Side effects, ratings, and patient comments
PRO-BANTHINE: Side effects, ratings, and patient comments

I also have some thoughts after for about a month. What I am eating is Probanthine, which might works in a slightly different way from other Anticholnergics (AN).

* First and foremost, most people are recommended to take AN morning, afternoon and before bed. In my opinion, this is a mistake of the Doctors, that as we all are aware of might not be that educated when it comes to HH. AN is originally to be taken for other problems, such as bladder disfunction or headaches, for which the body needs a constant refueling of the AN. In our case, what is the idea of taking the AN before sleeping?

Since most of AN is effective some 5-7 hours, the effectiveness would just have left the body when we wake up. And at least for me, sleeping is the only time ever when HH does not bother me. Therefore I've come to the conclusion that it's better to take a larger dose in the morning, a smaller dose in the afternoon and nothing before bed. That will keep you drier during the day when you need it, and still expose you to the same amount of medicine.

* I read in a post somewhere: "I haven't heard about anyone using AN the same way as Beta Blockers, only taking them before business meetings, shopping in hot weather etc." My questions is; why not? The medicine have about the same kick in and lasting time as Beta Blockers. Moreover, as we all know, body tends to build up a resistance to AN after period of usage. If you only take AN in the morning and the afternoon, your body will not be affected by the AN for abut 12 hours per day (sleeping, and late evening when afternoon dose effectiveness is gone. in the evening, the weather is cooler and one is usually at home relaxing). By not having AN in your body 12 hours/day, your body would most likely have a harder time building up this resistance.

* When the resistance is eventually being built up, would it not be an idea to switch AN agent? Taking Robinul one month, Probanthine one month, Robinul one month, Probanthine one month and SO ON. By doing this, the body would not have time enough to build up this resistance, since Robinul and Probanthine works in different ways?! This are mere ideas and thoughts. Comments, anyone? I have now the last days taking 2 pills morning and 1 pill afternoon and no one before bed. It makes me drier daytime, and no change when I am sleeping.

Please comment on your experience and let's get the best out of the AN drugs!

I also have a question: do anybody know about getting hand of Robinul in Hong Kong? Is it possible to ship Robinul to Hong Kong, or would it be available to purchase at place?

Thanks

 

[Jezza]

Hi there.

I too am having some problems getting robinul. It's not really available in Europe in oral medication form. I have tried oxybutynin, but I didn't like taking it because it's a tertiary anticholinergic, which means it crosses the blood brain barrier, whereas quaternary ANs don't...Also, it didn't work that well at reducing my hand and feet HH, it did had some effect on other generalised hh...but I didn't want to keep taking a 2nd rate drug with the unnecessary cognitive side effects.

I've been to docs trying to get other ANs, but they're really not eager to prescribe something (the ones I've seen so far that is, ironically they are willing to give me older tertiary ANs like oxubutynin and trihexifenydil that give a lot of side effects but are scared to give me newer ones with less side-effects because they have no experience with those...and they don't understand this irony I guess). Another quaternary AN that to me seems hopeful is tiotropium bromide. It's long acting (12h), it's quaternary AND it mainly affects M3 acetylcholine receptors, which are the important ones for sweat secretion, while M1 and M2 receptors remain as uninhibited as possible (which is what you want, because by inhibiting M2 receptors, BP rises for instance). However, tiotropium is administered with an inhaler to minimize side effects, so I don't know how that would work out and/or if it's possible to just take it orally. I'm thinking about contacting the manufacturer about this (Pfizer together with boeringer-ingelheim). They market the drug under the name Spiriva.

I think what you (and by that I mean we all) want in an AN against HH is that it's a quaternary AN, and that is has a high affinity for M3 muscarinic receptors. A long working period and fast kick-in would also be nice, but sencondary to the first two criteria I think.

There is apparently a possibility of ordering robinul from a drug store in canada, www.pharmacy.ca. I have to tell you though that I haven't ordered anything from them yet. I don't know how/if/at what price it would come through customs or anything and the whole buying drugs online thing puts me off a little, since I think I should just be getting this from a doc in my country, both because I financially pay for it by health insurance and taxes but also and maybe more important, because I feel it's a moral right. Anyway, maybe some people with expierence from this store can chime in on it.

 

[margiehope]

If anyone does decide to check out pharmacy.ca, just be aware that their brand name for glycopyrrolate is "Avert". I live in the city where they have a standing store, so just go there.

I'd be leery of ordering meds online as well, but be assured they are quite reputable.

 

[grimaldi]

Is Probanthine crossing this blood/brain barrier?

 

[Jezza]

Nope...probanthine is a quaternary anticholinergic...It is however reportedly not the most effective one against HH, and has relatively severe side-effects (not cognitive, but dry mouth etc)...

 

[grimaldi]

So which is more effective than Probanthine in your opinion?

 

[Jezza]

Robinul

The only ones that are used a lot and where enough research exist for are robinul and oxybutynin...Other ones might be even more effective, who knows, but just aren't being prescribed.

Like I mentioned before eccrine sweat glands are innervated by M3 muscarinic receptors...So what would logically help the most is an M3 receptor agonist (a lot of anticholinergics are nonspecific, ie they act on all muscarinic receptors 'equally'). To limit side effects you'd have to go for a quaternary anticholinergic.

Other than robinul there are for instance trospium chloride, tiotropium bromide, ipratropium bromide, darifenacin and some others...The availabilty might be troublesome though, some of these are relatively new drugs.

 

[teandtoast]

Nope...probanthine is a quaternary anticholinergic...It is however reportedly not the most effective one against HH, and has relatively severe side-effects (not cognitive, but dry mouth etc)...

I use probanthine and it works quite well for me for axillary HH.
Also I dont notice any side effects at all.

 

[grimaldi]

Jezza: how can you say that Probanthine is reportedly not the most effective, and then state that there isn't research done concerning it?

Whatever. Good news: my Doctor in China found Robinul for me. Will try it.

What about mix Robinul and Probanthine? As we all might know, they work in different ways. So a small dose of both instead of just using one, might be a perfect answer??

 

[Jezza]

The 'there isn't enough research' comment is a technical issue...Just because there isn't. However, I've been scouring the web for some years now and I've read many many comments from people who take probanthine and robinul.

From what I've read probanthine gives worse side effects while also not being as effective as robinul. But of course some people use probanthine and are happy with it. Basically give ANY anticholinergic to someone in high enough dosages and they'll stop sweating for a while (with varying amounts of side-effects, that some will find acceptable and some won't) unless somehow they engineer an anticholinergic that completely doesn't effect M3 receptors and therefore doesn't affect sweating too much (too simple, but basically true).

Anyway, I have a study about the use of robinul for HH on my home computer that actually mentions that some people in that study (n=around 20 if I remember correctly) were previously prescribed probanthine, stopped due to side effects, but later found robinul to have acceptable side-effects...You can probably find it online and if you can't I can look up the complete title...similar studies exist for oxybutynin, but not for most anticholinergics because they haven't been used a lot for HH (either because they are relatively new, obviously because most aren't intended to treat HH in the first place and probably because nobody bothered).

EDIT --> Study is called 'Use of oral glycopyrronium bromide in hyperhidrosis' by V.Bajaj and J.A.A.Langtry July 2006, 24 patients 9 generalised, 9 axillae, 6 palmoplantar. I got it from wiley science.

Right here in the Netherlands I've suggested many times to doctors to prescribe me other anticholinergics, but they are just to scared to do it eventhough I explained the situation time and time again. They usually don't really understand HH and the disadvantage of a state welfare system is you change the power from the buyer (the patient) to the seller (the doc). Obviously that is necessary in some cases when it comes to medicine, but very annoying if you have HH.

About the mixing; I think you probably know a medic would tell you that's a no go. Also, they basically DO do the same thing (I don't know what you mean by they work differently?). My personal opinion (again, technically I have to tell you, my opinion) is you probably won't die from it (but I can't guarantee you that, of course)...but I don't really think there will be incremental gains. I would say I personally wouldn't not do it because it would be 'dangerous' but I just wouldn't do it because I don't see the benefit...

Most importantly though; Good luck with the robinul and if you can let us know how it works out for you...By the way I don't really buy the whole you get resistant to the med thing. It's not like we're dealing with a virus or bacteria here...the med works in a mechanical way, maybe the body adjusts to it somewhat initially, but I see no reason why it would get to be ineffective after some years of usage.

 

[grimaldi]

Jezza: As for the meaning of "working different" I will paste a part of a mail I wrote my Doctor:

"Moreover, I also read something about the anticholinergic medicine Pro-Banthine which I am taking now. It is explained that Pro-Banthine works in 'Blocking action of acetylcholine at postganglionic parasympatehtic receptor sites'. Another and even more popular anticholinergic medicine is Robinul. Robinul is explained to work like this: 'Acts in smooth muscle, CNS, and secretory glands to block action of acetylcholine at parasympathetic sites'."

Therefore they work slightly different, even though the result (decrease sweating) is the same. Moreover I must (unfortunately for us all) disagree with your thought that the body will NOT get resistant to AN. It's been told by several members on this and other forums that so is the case; the AN stops to be effective after a couple of months. There has also been reports from people taking AN for years without building up this resistance. So it's like usual with HH; it's individual. But the chance (or rather the risk) of building up a resistance is there.

Anyway. If I get this resistance I will try to switch drug for a couple of weeks. Because soon I will have Probanthine as well as Robinul in my shelf...