Lack of responsibility.

[faith12]

I have asked 111 to get a GP to call me. GP called sent me to another phone service for my inflamed eyes. That service says they cannot prescribe and have referred me on to another eye service who may see me in two weeks and they can then refer me to an opthalmologist. I already have that appt. scheduled for October, with an Opthalmologist. No one will help me obtain oral medication and eye drops. Michelle recommended steroid eye drops and Doxycycline. No one will listen and they minimise my symptoms. No one will help. So back to GP. The surgery does not answer phones and 111 will phone them after a while. I had to offload to someone about the misery of having Sweets, and lack of help or compassion from NHS

[Shell567 Administrator Sweet's Syndrome UK]

Hi Faith12,

I think I previously recommended doxycycline for SS-related mouth ulcers. Really sorry to hear that you're being given the runaround. There's been a real issue with UK Sweeties getting appointments.

[faith12 in reply to Shell567]

Did you recommend Doxycycline for inflammed eyes also?

[Shell567 Administrator Sweet's Syndrome UK in reply to faith12]

Hi Faith12, no, but doxycycline is also a general SS treatment, so could potentially help relieve symptoms. I had eye symptoms, and took a combination of prednisone, dapsone, and doxycycline for my SS. Ideally, you need steroid medication - oral prednisone or steroid eye drops. Other meds may be needed for longer term management. dermnetnz.org/topics/acute-...

[faith12 in reply to Shell567]

I had prednisone for two months 2 years ago and stopped because of daily painful stomach cramps. And took dapsone for ages before I became anaemic and stopped. It seems that the meds are worse than the illness. You know more tham I do have you any advice. Thanks

[Shell567 Administrator Sweet's Syndrome UK in reply to faith12]

Hi Faith, unfortunately, side-effects can be an issue. It may take a while to figure out what medication works for you. Some medications, e.g. potassium iodide, tend to have fewer side-effects than others. dermnetnz.org/topics/acute-...