Update On Salagen Pilocarpine Saga

[Mrsdoozer]

Hi Everyone, Just thought I would update the situation regarding being unable to source the much needed Salagen. First a big thank you to Barnclown for pointing me in the right direction and giving me great advice I am very grateful for both her advice and fellow Autoimmune members support & advice well done members of Health Unlocked you rock !! As advised I called the British Sjogren's Society and spoke to Bridget on the helpline who was very helpful. Bridget is a fellow Sjogren's patient and has had the same problem getting these tablets , there is no alternative prescription available for it in this country It seems this is indeed a general problem but should be resolved soon and be available again by the end of the month. Salagen is now being manufactured and distributed by another company called Merris Laboratory Luxumburg. In the meantime Bridget tells me that you can get Pilocarpine (Salagen) in the form of eyedrops of 1,2,3, &4% , a bit strange but it does make sense when i explain what she told me . She said that the 4% one is needed in my case as i am on 5mg 3x daily , place 3 drops on top of the tongue so its easy to count and you can be accurate with the dose that way, have a large glass of water to hand to wash it down . 3x 4% drop is equivalent to 1x5mg tablet. I did say to Bridget that's a bit strange she went onto explain that is how it is administered for people who can not swallow tablets i.e people in palliative care etc. As eye drops when put in the eye, normally drain into the nose and throat its actually no different to taking the tablet apart from it being liquid rather than a tablet. I went straight to my GP today and explained and he has given me a prescription for 2 bottles to tide me over until the tablets can be located and sourced. I did check with the Pharmacist and he tells me that is correct its the same thing just in different form. I collect my prescription tomorrow!! YAY

Thanks Again Everyone xxxx

[EOLHPC]

YAY IS RIGHT 💥💥💥💥👍👍👍👍🌟🌟🌟🌟👏👏👏👏‼️‼️‼️‼️❤️👭👭👫👭👫👫👭❤️🍀🍀🍀🍀 coco

[Hidden]

Great news and very interesting to me as a sufferer of primary SJS. Bridget has been excellent for me too. We discussed Pilocarpine but she warned me it might not suit as I have high blood pressure and am prone to palpitations - which apparently this med can exacerbate. I plan to ask though as the awful taste and eye dryness and other drying issues are really getting me down at present. And when the central heating comes on again I'm doomed!

[Mrsdoozer in reply to Hidden]

Hi Titchytoes

I totally understand and agree about the central heating,also air con in cars, planes and buildings make it really bad for me. I also end up with a bunged up and dry nose due to air con and end up trying not to breath through my mouth which proves to be interesting to say the least lol so as you say we are both doomed !! I did go to the docs at one stage as I had a few palpitations but touch wood they seem to have settled, but as i say I have been on it along time it just seemed to be a bit of a blip for me...hopefully. I wish you all the best and hope you get some answers and help for all these wretched drying issues it makes life very uncomfortable.When I hear people complaining because they have a cold and cant breath through their nose and have a dry mouth i have to bite my tongue, if our condition was due to a cold and only lasted a week or so and knew it would get better it wouldn't be so frustrating!!

Hope you get some relief soon , take care xxx

[Mrsdoozer in reply to Mrsdoozer]

Sorry Twitchytoes i realised i misspelled your name in my post. xx

[Hidden in reply to Mrsdoozer]

No worries I didn't notice! My real name is impossible to spell for many so I'm well used to it!

The thing I'm finding so hard to convey to everyone apart from others with full blown Sjogren's, is that when our moisture production is so reduced - it can impact on our entire bodies including all internal organs, nervous system, joints and muscles and brain. I treated myself to some easy to clean water bottles today which I can fit in my bag. I'm at the stage where food can only be swallowed with water added to every bite. Otherwise it's panic stations! X

[jupus]

Hi again Thank for you useful information. I have confirmation from the manufacturer that it will be available at the end of the month. Fingers crossed! Hope the eye drops work for you x x