Salagen (Pilocarpine)

[Mrsdoozer]

Hi Everyone ,

I have been Pilocarpine or Salagen as it has been called for over 7 years ,it was prescribed by my then consultant to help with my Sjogren's . i placed my repeat prescription into the doctors as normal only to be told by the pharmacy that they can no longer get it. My G.P has told me that there are no alternatives to this medication and is at a loss as to what to prescribe. Has anyone else had this problem? I am now beginning to feeling the effects of no longer taking this ,its only been a few days and i am feeling quite poorly and struggling with severe drys eyes and mouth returning with a vengeance. Just wondered if anyone else has had difficulties finding it or whether you have found an alternative.Thanks for your help in advance xxxxx

[EOLHPC]

Hello mrsdoozer (great name)

My instinct would be to phone the secretary of the consultant who prescribed salagen to ask about this ASAP. in my experience gps don't know enough to be able to prescribe these special meds. Although my secondary sjogrens is severe, I'm not on pilocarpine because my rheumatologist is concerned it would make my Dysautonomia even worse. But there are several on forum who do take pilocarpine: I hope they reply to you...and I'll be VVV interested in any alternatives too

🍀🍀🍀🍀 coco

[Mrsdoozer in reply to EOLHPC]

Hi Barnclown

Thanks for getting back to me. Trouble is my consultant who diagnosed me with Lupus & Sjogren's and has long retired was in Surrey . I moved from Surrey to Hampshire / West Sussex border a few years ago,but I will give it a go . Its a bit worrying that my now consultant did not question the pilocarpine at my recent review if its something they do not prescribe it always seemed to be a case of "if its not broken dont fix it" sadly its broken now and set to get worse unless i can get some answers and a replacement

Hope to have some positive news soon

Take Care x

[EOLHPC in reply to Mrsdoozer]

I'm glad our footy replied: I knew she was struggling with this too.

I do wish you all the best with this

XO

[Footygirl]

Hiya

I have been prescribed Pilocarpine and have chased my tail, my GP and my specialist but am getting nowhere. When I tried to get the original script filled, not one chemist said they could get it. I was puzzled but your post confirms the difficulty. I wonder if another drug will get prescribed. I too am suffering.

Crossing my fingers with you

⚽️

[jupus]

Thanks for highlighting this problem I have taken Salagen Pilocarpine for about 14 yrs There was production problems about 5 years ago but it sorted I ve contacted my pharmacy who agrees there is a problem but doesnot think they are discontinued I have emailed the drug company for up to date information. I cant contemplate not taking the medication

[Mrsdoozer]

Hi Jupus

Thanks for getting back to me , like you I cant contemplate not taking the medication . Each day that passes it becomes a bit more uncomfortable. I spoke to my Consultant Registrar and he told me that it is an old medication and not one that they prescribe which is a bit worrying on several points . Firstly why was this not picked up on my review a few weeks ago when the consultant went though my barrage of meds , secondly the registrar said that as far as they are aware there is not a problem getting it within the hospital but went on to say its not one they use, surely that means that there is an alternative because they are obviously prescribing something for people with our condition. I Seem to have hit a brick wall with this at the moment soooo frustrating . It was a bit like this with my Zentiva Planquenil prescription recently when they changed its branding. The new tablet formula made me unwell and I was made to feel a bit of a pain asking to have it changed back to my usual brand by my GP as it is more expensive and had to be ordered in specially for me in the pharmacy. People do not seem to understand or realise im not being awkward or a pain on purpose i genuinely do suffer, but once again i look healthy and thats all people see or know with this wretched disease . Ho Hum !

Take Care x

[EOLHPC in reply to Mrsdoozer]

Just an idea: have you phoned the BSSA (British sjogren syndrome assoc) help line? They really should know what's up with the U.K. pilocarpine supply:

The helpline is open 9.30am – 4.00pm Monday to Wednesday and 9.30am - 8.00pm Thursday and Friday. The helpline telephone number is 0121 478 1133. Please note, the helpline is for help and support only, for all other enquiries please call the BSSA office on 0121 478 0222.

Hope you'll let us know how you get on

🍀🍀🍀🍀 coco

[Mrsdoozer in reply to EOLHPC]

Thats a fantastic idea! thank you ,i will phone Monday afternoon when i get home from work. I will let you know what they say x

[EOLHPC in reply to Mrsdoozer]

I got into this BSSA helpline thanks to our heroic 🌟 twitchy who found it vvvvv helpful: credit where it's due 😉😘🍀

[jupus]

Hi Mrs Doozer I agree with all you say and its really annoying messing with peoples lives. I will let you know if I get a reply to my email. If not I will contact my Rheumy/ Dental Hospital and see what they say You take care too x

[Mrsdoozer in reply to jupus]

Hi Jupus

That would be great if you could let me know ,maybe they can throw some light on the situation for us .Fingers crossed !! Have a good weekend x