Oxybutynin Updates

bigchris

Well-known member
Doctors went really well and I've been prescribed Oxybutynin, which I'm picking up tomorrow. The doctor said take 1 tablet before bed, but I thought you should take it an hour before eating? Should I just take it in the morning?

I've found out that Oxybutynin may cause memory loss. Anyone else know about this? Anybody know how long it lasts once medication has stopped?

Update:
So far I've been taking oxybutynin 4 days and haven't noticed any real change, my hands are slightly less sweaty but my arm pits and back are still very sweaty.
 

bigchris

Well-known member
Been taking it almost a week exactly now, I notice that there is a slight reduction in sweat, it still sweating on my back but not as much, i thought it was because the weathers colder so im not as hot, but i was sat in a hot room today and sweated from my armpits, but not much from my back which I was happy about. Ive been told to take 1 oxybutynin before i go to before every night and can have some in the day. Today I took one to school at had it at 11 and i noticed i felt extremely drowsy around 12:30 ish and my eye were quite dry, but I was quite sweat free from there.

At the time I'm writing this I have a headache and I think its from the tablets, but im not sweating much so i can't complain. Does anyone know if these take time to kick in and will keep getting effective?

Thanks.
 

Jezza

Well-known member
Hi there.

I got my prescription for oxy today. I would have liked to get robinul so I could also crush the tablets and use them for ionto on hands and feet, which is a little more focused and hopefully longer lasting treatment, but apparently that's quite hard to get in the Netherlands and not prescribed that often so at least for the short run, I'm going to have to make due with this.

Anyway, I was wondering what kind of dosages you (and others) were taking or have been taking so I could get an idea about what to expect at what kind of dosage.

I'm not really feeling taking this med for forever, but at the moment I really just need to find something to alleviate HH for the first time in about a decade now, so I know I can fall back on it when push comes to shove/ bridge the time that something better will appear.
 

bigchris

Well-known member
Well I've been given 2.5mg tablets and I take 1 in the night before I go to bed, I've started taking another in the morning, but it makes me really really drowsy so I don't know if I'll carry on doing that. Not seen a great reduction in sweating yet. I am allowed to take up to 10mg a day.
 

Jezza

Well-known member
hmm...

I have been prescribed 2,5mg pills 3 times a day. I took one pill earlier today and at least I can feel some effect...although sweating is still there, I have the (for the moment very subjective) feeling that it's slightly less heavy (still bothersome) and I also have a mildly dry mouth and stomach ache.

At least somewhat more promising than propanolol. I had no reaction to that at all. I guess it's one of those things where it works for some and doesn't for others, but since it blocks acetylcholine, in the end it should at least work a little. Just a matter of how much do you need to take before the results are acceptable (no HH) and how bad the side-effects are at that point.

I'm quite tall too, so it might be necessary to take a little more than standard. I'll just start with what was prescribed, see how it goes and then look if it's worth to adjust the dosage. I'll let you know how it goes.
 

bigchris

Well-known member
Yeah, I'm quite a short guy so I'll probably need less than you. What times of the day are you taking your meds btw? I'm thinking of starting to take 3 a day because I'm getting not that much benefit.
 

Jezza

Well-known member
3 times a day 2.5 now...I have noticed some reduction of sweating, so there's some promise, but the sweating isn't gone.

Particularly overall body sweating seems to be down a little and I'm not experiencing bad side-effects yet so I could probably increase the dose a little more eventually.

Also, I crush the tablets and dissolve them in a glass of milk or juice and then drink it. Otherwise they taste quite badly, and possibly they'll be absorbed by the body a bit better/faster.

In my case I think I get a noticeable reduction in sweating for about 2 hours now, starting about 1 hour after I take them, after that period it's to close to call yet.

Today after taking the med I went to the supermarket and when I waited in line, I got the usual tingly feeling in my hands which is normally accompanied by really, really bad sweating. However, I noticed my hands were red like usual, but the sweating was quite mild. Also, I wasn't sweating badly from the rest of my body, which would always have happened before.

However, then I got home and a few minutes after I got back my hands sweated terribly (like usual going from outside to inside). I don't know if the med was wearing off by then...

Anyway, I think these anticholinergics are definitely having at least some effects, so now I really want to try ionto with glycopyrrolate, maybe in combination with oral glyco.
 

bigchris

Well-known member
Yeah, my sweatings decreased but it's not completely gone, I really want to try oral glyco tablets because I've only heard positive things about them, but my doctor says you can't get them in tablet form. Does anyone know where in the UK doctors can get the tablets from?
 

Jezza

Well-known member
Same here,

For now I'm still optimistic about the oxybutynin, but in any case in time I want to go to glyco, since oxy crosses the brain-blood barrier readily and glyco doesn't. I'm willing to give up a lot of things for not sweating but having Alzheimer's is not one of them.

After that, glyco works longer so you don't have to mess around with pills all day, glyco alledgedly has less side-effects AND you can crush the pills and use them for ionto.

I guess right here in the Netherlands it's about the same medical system situation. With every med you get the generic form and the branded ones are often not available. oxybutynin doesn't cost that much and robinul is probably more expensive, so if they can get away with it, the medical system (and by that I mean insurance companies) will try to give you what costs the least.
 

bigchris

Well-known member
Jezza said:
I'm willing to give up a lot of things for not sweating but having Alzheimer's is not one of them.

Yeah, that is exactly how I feel. :) My oxybutynin is sort of working, still get very sweaty when I run around, but it feels like the sweat evaporates a bit quicker. Still, only a week of school left.

Edit: Can I take 5mg of oxybutynin at once?
 

Jezza

Well-known member
Yeah, it seems that it helps a little in some situations but it can't control the HH when the sweating would normally be at its worst without oxy (ie, transitions from outside to inside, stressful situations).

It feels a little weird too when it's working, your hands still have that usual itchy tingly feeling but the sweating is different and sometimes the hands are extremely dry, when maybe normally there wouldn't be any sweat either, but it still feels weird. If it would be like that all the time though I'd still take it.

In the instructions I got it said the normal dose for adults is 3*2,5mg but could be increased to 3*5mg. I haven't yet used that dose but if you're an adult, you can take 5mg doses. I believe the max dosage was even 4*5mg but I'm not entirely sure on that one, mostly because to me I would go to 3*5mg max. I already get an acceptable but still inconvenient dry mouth now and then with 2,5mg, so I'll probably try the 5mg incidentally to see what difference it makes but if it doesn't completely stop the sweating then it's no use using 5
 

bigchris

Well-known member
Still sweating but very reduced, but still sweating.

I think that's going to be my final verdict on Oxybutynin, it hasn't been as good as I'd hoped, but I guess its worked a bit. I'm only 16 so probably not classed as an adult so best not take 5mg. My doctor says I can't get any glyco in tablet form, it only comes in a mixture for iontophoresis but I know you can get them in tablets. Anyone know where to get them from in UK?

Update: Got a doctors appointment tomorrow night to let my doctor know how my tablets are going. Going to try more to get some glyco even though he said its only in powered form for iontophoresis.
 

HHvictim

Active member
i'm taking ditropan 15mg once a day. is that too much? i'm seeing people using less of a dose. what do you guys think?
 

johnny2009

New member
I have hh everywhere. I had recently used probanthine. It was ok, but was not a great drug. I needed a drug that was mayby twice as strong as probanthine.

I have now been taking Ditropan for over a year. It is a much more effective drug than Probanthine. But, you may need to take ditropan for 2-3 weeks before you start to notice a big improvement. Also, you will need to slowly increase the daily dose untail you get a dose that suits you.

I find it much better than probanthine, and it has slightly milder side effects that probanthine. Ditropan comes in 5mg & 2.5 mg tabs sizes.
I find the 2.5mg tab size easier to swallow, if I cant get water etc to wash the ditropan down.
 
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