Salagen (Pilocarpine)

[jupus]

I was just wondering if any other Lupus with Sjogren's patients were struggling to get supplies of Salagen again. My pharmacy was saying the next supplies are due in May 2017 now. Is anyone else experiencing problems ?

[Paul_Howard Partner LUPUS UK]

Hi jupus ,

Have you contacted the British Sjogren's Syndrome Association (BSSA) to see if they have any information about this supply issue? Their website is bssa.uk.net/

[jupus in reply to Paul_Howard]

No I haven't but i will email them Thank you

[NannieB8]

Hiya sorry for my late reply.

Try ringing the pharmacy within the hospital where your rheumatologist is based. If they have some then ring your rheumatologist secretary and request a hospital prescription from your Consultant.

It worked for me, I managed to get 80 tablets. Enough for about three weeks and it all starts again!!!!!!!

Hope this helps.

🐝

[jupus in reply to NannieB8]

Hi Thank you for your reply I will have a look into this though My Rheumatologist is quite a way from where I live I have established that there are delays in manufacture and they should be available again from the 1st week in may and will be distributed in the U.K. By Alliance Healthcare Thank you again

[Lupiewarrior]

Yes I've run out and have just tried to get hold of it to be informed that there is a supply issue. I'm going to see if I can get some from the max fax department at hospital who started me on pilocarpine. A bit desperate to get some as already uncomfortable due to running out and I'm going on my honeymoon in a few days.

[jupus in reply to Lupiewarrior]

Hi yes still got supply problems here too I've enough to last till the end of next week The only alternative is taking pilocarpine eye drops orally Your hospital clinic may be able to help you with this Hope you are ok for your honeymoon 🎉 Congratulations 🎉

[ER66]

Hi there,

I've just joined this site and I noticed your post re pilocarpine shortage.

There was a manufacture problem which caused the shortage. Apparently there is no other drug that can be used instead/in place of pilocarpine. However, the good news is it's all sorted and back in chemists now. Yippee!

Can I ask please....do you suffer from any of the side effects? I'm taking 2 x 5mg per day for dry mouth (sjrogens) and experiencing light head and headaches. Very tired too.

Thanks,

E x

[jupus]

Hi ER66

Yes it's good news that the pilocarpine is back in stock.

I have taken pilocarpine for over 10 years I take 3 x 5mg per day In general I haven't had any problems apart from at one point I tried to increase to 4 a day and it affected my sleep.

I find my tiredness is usually to do with my Sjogren's / Lupus. I always take them with food.

If you have only been taking it a short amount of time It may be your body adjusting to it? They usually build your dose up at a bit at a time so you get used it.

Hope I've been of some help.

Take care

J x