Salagen/Pilocarpine

[Mrsdoozer]

Hi Everyone

I am not sure if there has been a post on here recently regarding Salagen. I did one last year when I was having trouble locating it . Well today I learnt from my Rhumy nurse that Pilocarpine/ Salagen is no longer being made and once the stock has been depleted there will be no more. I know it has been extremely difficult to actually get hold of it for the last 6 months. However I was told that the eye drops taken orally are just the same just but in a different form . Sounds strange but I think it is 2 drops = 1 tablet . I am waiting to hear from the nurse what % strength is required, but luckily i have a new box of Pilocarpine so am not in need of any yet. Just thought I would let everyone know in case they were in the dark like I was.

Love & Light

Angela

xxxx

[jupus]

Hi Mrsdoozer

I contacted the manufacturer of Salagen in July 17 who said there are going to be supply problems till the end of the year due to getting pilocarpine from Canada.There are limited supplies available till then Earlier in the year I used the eye drops and they worked fine Just a bit strange taking them Let's hope we can keep getting supplies of the tablets

Jupus x x

[Mrsdoozer in reply to jupus]

Hi Jupus

Thank you for replying. Oh that makes sense ,no wonder they cant get it!! lol

As you say lets hope we can keep getting supplies of the tablets for as long as possible. I gather its to expensive to manufacture and according to my nurse old fashioned :-/. When I asked what can i use in its place the answer was nothing!! Great was my reply! Then she said about the eye drops. I gather they have to be taken with a lot of water so its straight into the system rather than absorbed straight on the tongue. I am a bit hesitant about it to be honest , but if it works I am happy to go with it .

Angela xx

[jupus in reply to Mrsdoozer]

Hi Angela

The drops seemed to work just the same for me They are prescribed off licence so I would have to enquire further if I was to take it long term that way. I have reduced my tablets to 2 a day instead of 3 so they will last longer My mouth is drier in a afternoon but coping with it.

Nobody realises how important these tablets are for Sjogren's patients

Jupus x x

[Mrsdoozer in reply to jupus]

Hi Jupus

You are so right ,unless a person suffers from Sjogrens they dont realise how important they are to us. I was without tablets for a week and continually suffered with such a dry mouth it was miserable. Everybody said I can see you have a dry mouth have a drink. They do not realise I can drink litres of water and it does not make the slightest bit of difference. I got the feeling the nurse i was talking to knew all about Sjogrens on paper but personally not a clue what it feels like for real. I also suffer from continual stuffy blocked nose that drives me nuts!! As I explain to people when you cant breath through your nose, you breath through your mouth, we cant win either way vicious circle.

I spend my time using Otravine , and sea salt nasal wash just to be able to breathe normally.

They joys of Lupus & Sjogrens I am afraid , but i count my blesssings as "touch wood" I have been free of any internal organ complications ..so far!!

Angela xxx

[Hidden in reply to Mrsdoozer]

Funnily enough I was offered Pilocarpine four months ago by my rheum but declined as I was already trying new medications. So, during consultation the other day I asked the doctor if I could try Pilocarpine but he said that all his patients dislike the side effects very much and have stopped taking it - so he thought I really shouldn't bother? And anyway it's out of stock.

I asked my oral consultant about it later and she said it's no good for people like me with abdominal problems because Pilocarpine can apparently make these worse.

However, reading your posts just now, I'm beginning to wonder if there's a conspiracy going on?!

[NannieB8]

Hi Angela

I was on Salagen and found if really helped.

I was told they were no longer manufacturing it but would begin production in May, by the pharmacists and my Consultant.

I managed to get some supplies from other local chemist and hospital but now have hit a brick wall.

Over the last three months my glands and tonsils etc have again become a painful and uncomfortable problem. I constantly need antibiotics and steroids for infections .

I would definitely like to try the eye drop orally if this helps.

Many thanks

Bernadette