scleraderma

[kimpush]

I have had scleraderma for years i am 61 and my eyes are dry my mouth is so dry i feel like its chocking me my sinouses also close at the same time ,been hospitalized no news anyone feel the same

[GGhere]

Hello Kimpush, I have scleroderma too and get the dry eyes and mouth. Doctor has prescribed a mouth spray but I find keeping a bottle of water handy helps too, especially in the night. Some days are worse than others. The dry mouth and eyes is called sjogren's syndrome I'm told and all part of the systemic sclerosis thing. Not much fun is it. Hope you have some better days soon.

[tall-tim]

Hello Kimpush,

Sending you compassionate thoughts. What were you hospitalised for?

Hoping you'll be feeling some relief soon.

T

[kimpush in reply to tall-tim]

5 days out of 7 my throat gets so dry like I said it feels like iam choking, for breathing the you add fatigue ,no fun not being able to breath is very scary

[kimpush in reply to tall-tim]

like I said breathing be comes ery scary add fatigue, no fun

[tall-tim in reply to kimpush]

I have not had these symptoms (yet). What medicines are you on?

[kimpush in reply to tall-tim]

amlodipine 10mg to create saliva pilocapine 10 mg

[kimmo]

Hi. Just read your post and I suffer too from scleroderma and sjogrens amongst other things. I was on tablets for dry mouth but these are no longer manufactured. My GP prescribes Glandosane Synthetic Saliva Spray 50ml which is available in 3 flavours and can be used as necessary. I also have Salivix salivary stimulant pastillas and bioXtra Dry Mouth oral gel 40ml. The gel and the spray give instant relief. It is very frightening to be woken during the night with the choking sensation or your tongue stuck to roof of your mouth but if you have these items to hand, and don't panic, you will have peace of mind. I do! I hope this helps. Regards, Kim.

[Duttie in reply to kimmo]

Hello, I also used to have the tabs for dry mouth, Pilocarpine, which are no longer available. I was told that they are now made by a Dutch company and they may not (yet) have a UK license. Do you get your Bioxtra gel on prescription. I was told by my pharmacist that his was no longer available and the GP has changed it to Biotine gel, although the pharmacist has not managed to get that yet!

[kimmo in reply to Duttie]

As at February this year I did but may be on re-ordering I might find myself in the same position as you! I tend to use the spray more as don't really like the texture of the gel! I traced the manufacturer of pilocarpine to Switzerland and spoke to them via email. They told my pharmacist they expected manufacture to recommence in May but we have heard nothing yet. On reflection I can't decide whether I actually feel better in myself without the tablet even though the symptoms of dry mouth are still a problem.

[Duttie in reply to kimmo]

Thanks, I may ask my pharmacist again about the Pilocarpine. I have just been referred to Oral Med as my Rheumy consultant is not happy about the amount of Nystatin (for oral thrush) that I take. I will ask them about the spray when I get an app as my mouth is always sore and limits what I can eat.

[kimpush in reply to kimmo]

yea this condition is very tricky kimp

[kimpush in reply to Duttie]

that really sucks pilcarpine does work sorry kim

[Thelma]

Sorry to hear of discomfort and frustration which I can certainly acquaint with. I too have Scleroderma and Raynauds. I endure the dry mouth and sometimes dry eyes. Drinking water through the day and at night helps and I have eye drops from my Eye Doctor that I take in the mornings. Many medicines are know to cause dry mouth as well. There are options to get through a little easier with less discomfort and I hope that you will be blessed, along with your Doctor's advice to gain more relief and less discomfort more frequently. I am also the same age as you.