Health Organization for Pudendal Education

Dorothy, I had just the same as you with the sjogrens with dentist, optician and even a rheumatologist saying I had it but no one willing to test for it because they said " We only treat the symptoms anyway". They seem to think it's nothing but dryness when in fact it can cause lots of other problems. I'm waiting for a biopsy on the roof of my mouth because I've developed a large lump there; right where my tongue sticks to the roof of my mouth at night. It's a confounded nuisance. I really don't want to take pregabalin if it's going to make it worse but we shall see. I have enough added dryness from oxynorm as it is.

Hi all,
I'm going on holiday so I thought I'd post how I'm getting on with the Pregabalin. The jump to 150mg a day was no worse and probably better than the incremental 25mg weekly. I still get a little woozy about 1 1/2 to 2 hours after I take it in the morning. I'm getting a bit of benefit. My husband says I'm not screaming out in pain as I was. Going to the loo a bit less often. But awful constipation - which was a problem before and I can hardly take anything else - or more fibre. Dryness not too much of a problem and hot flushes problem went away completely. But the Raynaud's disease is so bad that might stop me taking it in winter.

Anyway, bye for now,
Dorothy

Poppy,
I've just seen your last post about Sjogrens. It is difficult, isn't it? My rheumatologist (Dr Wood) for osteoporosis, guessed I had Sj cos of the bottle of water I had to keep drinking to speak to her and tested for it - blood test - and I came back with 2 antibodies when one will diagnose it. I refused the saliva gland removal to confirm! I'm sorry you have to have this lump removed.

Dr Wood suggested Salivix pastilles (prescribable by dentist) which last for ages tucked up behind the top teeth. And I've found Aquafresh EXTRA Tingling Mint mouthwash - from Tesco v helpful. When at home I use it several times a day. It refreshes the mouth and keeps it moist for over and hour. I'm finding it better than the mouth gels which are always sweet and yucky.

Must go.
Dorothy

HI, thanks for those suggestions. I've now been given two mouth gels and a spray all of which are horrid so am chewing gum and sucking honey and lemon pastilles. I'm finding the dry throat and difficulty swallowing the worst thing and dry nose yet I have constant post nasal drip and a clear cough. Hoping the dental surgeon will have more suggestions in 2 weeks. One thing I just got which is excellent is HYLO tears. They are preservative free and last a lot longer than the usual ones. My chemist couldn't get lacri lube at all this week- totally out of stock. Our medicines are being sold to Europe as they are much cheaper.