Glycopyrronium Bromide tablets - UK (NHS)

StanleyUK
Posts: 2
Joined: Fri Mar 19, 2010 9:19 am

Glycopyrronium Bromide tablets - UK (NHS)

Postby StanleyUK » Fri Mar 19, 2010 9:37 am

Hi all,

This is my first post on this site, and firstly I want to say a big thank you to everyone for the information posted so far. I have suffered with HH for most of my life, but without the knowledge of what the problem actually was, I just put it down to being a generally sweaty person.
My main issue was Palmer HH, but still suffering with sweating from other parts of the body, but not on such a frequent or dramatic level. Having spent a little time researching this problem over the internet, I came across this site, and have now been able to address the issue with my GP, and subsequent referral to a Dermatologist.

Being in the UK, this was done through the NHS, and the Dermatologist I saw during consultation first wanted to put me on a once-weekly Ionto course, but after a little discussion (due to work commitments I couldn't really be available for once-weekly treatments), he agreed to prescribe Glycopyrronium Bromide tablets, at a dose of 2mg daily (2 month initial course of treatment). To my relief, the cost of this was just standard NHS presciription charges (GBP 7.20!). Something of a good deal compared to the cost in other countries.
The rub of this being, at present, as the treatment is unlicenced in the UK, there is much more paperwork to be done before I can actually receive the tablets. I should be able to collect them in aprox 1 week from the date of this post.

I will use this forum as a journal of my progress, and note whether the NHS will allow me to continue on this course after the initial prescription runs out (as it is unlicensed, the cost to the NHS is very high).

More posts to follow, and thank you again for everyones sage advice and experiences in helping other suffers like me see the light at the end of the tunnel!

__________________________________________________
Symptoms of my HH are as follows:
Palmer HH, and very cold hands for much of the time.
Minor Auxillary HH (Mostly able to be controlled by Mitchem / Dryclor)
Very occasional sweating at top of thighs (mostly during time of anxiety)
Partner says I radiate heat at night (other suffers on here have noted this, too).

All above symptoms will be monitored and reported on during my post updates.


If anyone needs any information regarding the referrals etc, please feel free to PM me.

StanleyUK.

pinker1
Posts: 14
Joined: Wed May 28, 2014 7:53 am

Re: Glycopyrronium Bromide tablets - UK (NHS)

Postby pinker1 » Wed May 28, 2014 8:10 am

I've recently started on glycopyrrolate tablets too (Robinul 2mg). It is unlicenced in general practice but my prescription was done through the hospital itself.

In the past I've also tried glycopyrrolate solution 0.05% which is used in iontophoresis. This is very very effective, however, I've changed doctors and it's a rigmarole to get hold of it. Robinul is imported from the US but glycopyrrolate solution is made over here by a company called Nova Laboratories. I think it costs the PCT close to £1000 per prescription (Robinul around £200), so I doubt I'll be able to get it again.

Anyway...

I've been taking robinul for a few days now. It hasn't really made a massive difference to my hands, but I've had the familiar 'cotton mouth' and a dry throat. I'm not aware of if it needs to build up in my system, but I'll continue to take it anyway. My prescription is 1mg a day so I'm meant to cut the tablet in half.

I'm still using iontophoresis and I don't see robinul being a cure for me. Hopefully I'll be proved wrong.

With regards to iontophoresis, it hasn't been working well for the past few months and I'm currently starting again with treatments. I've even been experimenting with rain water on the advice of another forum member. No success thus far...

pinker1
Posts: 14
Joined: Wed May 28, 2014 7:53 am

Re: Glycopyrronium Bromide tablets - UK (NHS)

Postby pinker1 » Wed May 28, 2014 8:19 am

Just noticed the topic was made in 2010, sorry. Hopefully stanley isn't still waiting for the prescription!


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