Dentist diagnosis

[NanaFifi]

Hi all, I have suffered with Rheumatoid Arthritis and Lupus for over 40 years. I started having a really dry mouth when I was put on OxyCodone for pain relief. I thought it was just a side effect but my dentist says I have Sjogrens. My eyes can be quite dry by the dry mouth is relentless! I find the pastilles and sprays don’t help much. I carry a water bottles with me always with sugar free squash or water in it. At home I sip fizzy water which I think helps I have other ‘dry’ symptoms but I’ve always thought that was an age thing but I’ve read that vaginal dryness and excessive sweating can also be linked to Sjogrens. Any advice gratefully received. 😊

[dg70]

I had an unquenchable thirst until hydroxychloroquine and pilocapine. Pilocarpine is hard to tolerate though. Gives me terrible wind and diareah if I take too much. The dose is up to 4 a day. I can only tolerate half a tablet now a day which is gutting as it almost stops dry eyes and mouth. Start looking into vaginal moisturiser internal and external but make sure they are pH neutral like balance activ creams. We are prone to tearing and infections from sjogrens which is no fun at all as many will tell you. Keep up the straight water, not fizzy as that can dehydrate as kidney stones are an issue do keep flushing them out. It's a pig of a syndrome with so many more issues than just dry eyes and mouth. Xx

[NanaFifi in reply to dg70]

Thanks for replying 😊 Other than the dry mouth I put all the other symptoms down to menopause. I use Estradiol pessaries for the vaginal dryness and also a topical moisturiser (Sylk) which is very effective when being intimate, I get both on prescription. I’m on 40mg daily Hydroxychloroquine for my Lupus, Methotrexate injections for RA, prednisolone for both 🙈 . . . . . . I’ll have a look at pilocarpine but I have a gut that is very easily upset so . . . . ? I will also have a chat with my GP about temperature control, might not just be menopause that’s causing all these excessive sweats.

[dg70 in reply to NanaFifi]

Oh I forgot for 20 mins after taking pilocarpine you have a massive hot flush! Just what we need. I am on hrt but still sweat like mad some points in the day even doing a little and then doing the same later in the day I don't sweat at all. I can't work it out. Lupus produces low grade fevers I have read. Also I'm looking into Dysautonomia and having a nerve conduction test shortly to see if I fall in that category. It can cause sudden high temperatures. The rheumy said check your temp when you have a hot flush and see if its high temperature. Mine hasn't been so far. Menopause is a annoying as it interferes with this issue. I'm glad you're keeping on it with the down below. I've had horrendous itching, burning and bleeding and have had a staphylococcus infection already down there. Its a juggling act of creams and lotions as you know. I have estradiol to but not sure if its doing a lot. I haven't been on stronger drugs than hydroxy yet but I think I'm close as I'm on max dose and still getting loads of issues. My bathroom cupboard is stuffed with the daily meds. We have to keep going even if its all such a faff. If there is any thoughts from the GP about temperature let me know as its crippling sometimes especially when its hot outside, I can't do much at all when its hot, a tiny bit of hoovering sends me off to the shower after. I guess you are similar.

[NanaFifi in reply to dg70]

I’m exactly the same regarding the sweats, doesn’t make any sense and much worse in hot weather too. Yep, the down below situation is a nightmare but I must admit between the pessaries and the Sylk I’m much more comfortable. Sounds like you’re having a rough time with that but hang on in there, hopefully you’ll find something that works for you.

I saw a post about Dystonomia and am going to bring that up with my GP too (if I can get an appointment 🙄) If it’s the Sjogrens that’s making the sweats worse that would make a lot of sense to me. I’ll also check my temperature when I’m having a full on sweat! I’ll let you know if zGP throws any light on that.

[dg70 in reply to NanaFifi]

Oh thanks it would be good to know if you get anywhere, im glad to find a fellow hot sufferer. Ive had it since i was 38, well before menopause. Im 53 now. . I've had steroid cream Dermovate for mad down below it's the only thing that's stopped it so far. Everything is a juggling act. It's the exhaustion that's toughest to deal with I find. Talking to others it's the sjogrens more than the lupus that is the culprit in terms of constant never ending fatigue. I guess you have it too. Just off to bed now for a bit. Have a good day and keep in touch. Xx

[Haired]

Hi NanaFifi, I also have Lupus and Sjogrens. The dry eyes, mouth fatigue etc can be so annoying and hard to control at times. Sjogrens was diagnose at the same time as Lupus with Skin biopsies. I can only tell you what I use to try and help.

While in hospital they gave me Bioextra toothpaste and Oral Gel. I was told not to use foaming toothpaste and I musts say I really find it helps especially during the night. Recently my lips are so so dry and I find La Roche Lip Balm or Avene Lip Balm very good. Vaseline made it much worse. Try only sip water during the night as it just makes you have to go to bathroom and break your sleep !! I use Hylo Extra drops for my eyes as they can be ver very dry at times.

Hope some of this could help. Best of luck x

[NanaFifi in reply to Haired]

Thank you Haired, I’ll ask my dentist about non-foaming toothpaste. I don’t really have a problem with dry lips but then I do wear lip balm or a moisturising lipstick every day so that probably helps. X