Does anyone has had good effect of any medication for dryness (inflammation of salivary and lacrimal glands)? Many thanks..

[rosegardens]

Hello to everyone in SS Community,

I am new to the group. Hope you are all feeling well and not in too much pain. I would like to consult with you and would very much appreciate your help.

*I have PSS, and I stopped taking Plaquenil after 17 years, and I am wondering if anyone used any medication which worked for dryness (mouth, eyes, nose etc and painful salivary glands) ?

Plaquenil worked really well for dryness, despite reports indicating it may not be effective. Presently I don't have muscle or joint pain at the moment, but I have fatigue and dryness.

*Does Prednisolone or Methotrexate help with dryness in low doses or have you used any other medication that worked?!

*Does IPL work for salivary glands?

*Also does anyone know a good Rheumatologist please in Melbourne if not in Sydney?!

Many thanks in advance to you all.

Warm Regards,

Kim

[Tally]

Would love to hear from others re your post

[rosegardens]

Thanks Tally, me too

[SweetJane1]

I would be interested to hear replies too.

And perhaps from someone who has tried low dose Naltrexone?

Since it seems fairly unresearched but reportedly effective?

[rosserk]

Hi I’m having the exact same problem!

They have refused me Plaquenil because I have asthma but I’m taking hydroxychloroquine 400mcg . I’m not really sure if it helps with anything I’ve still got extremely dry eyes and mouth. I am also looking for an alternative medication. Have they told you why they’ve stopped Plaquenil?

I’m scared to ask about methotrexate and I’m not sure why maybe because it’s usually used for cancer patients. Prednisone is a steroid and no one I’ve seen so far will even consider prescribing it not even low doses for short periods. I’m in the UK so can’t help with doctors in Melbourne. I will also be interested to see what others suggest 😀

[Blogg in reply to rosserk]

Methotrexate is worthwhile in combination with hydroxychloroquine

[rosegardens]

Hi there

thanks for your replies; Rosserk, Plaquenil was stooped because I started to her toxicity in my muscles (legs) and weakness after taking 17 years.

Yes me too, I am also afraid of methotrexate. Plaquenil was working very well for dryness. Its a shame. Why there is reluctance about prednisole?

Hope you get a relief soon!

It sounds hydroxychloroquine is not helping with dryness?

We will wait to hear from other, may be there are people out there who found some useful medication, Thanks again for your reply, best wishes

[rosegardens]

Hi SweetJane, thanks so much, I think you are right, this medication may be answer for my problem, thank you so much for your help. Cheers

[maggielee]

I have been off line for a short time. Take a look at the British Sjogrens Symptom Guidelines academic.oup.com/rheumatolo...

Provides rheumatologists guidance in treating sjogrens...

I have various issues, but I have SCLE & Sjogrens & taking hydroxy & mycophenolate which is helping me...Also, recently trying pilocarpine which is licensed for treatment of sjogrens. It is a love /hate relationship to encourage moisture production in your glands. It kicks in in about 20mins & I can feel myself heat up so take it with meals & plenty of fluids... I can feel the build up in fluids/moisture in my mouth. Also, mucus build up in my nose, Eyes a little less.

As my specialist rheumy (UK)said its suppose to help get moisture to places that I can't with drinking - motivated me to try & bite the bullet with heating up suddenly & some side effects... Want to give it sometime to see if my body adjusts to it more. It needs a gradual introduction starting with 1 pill slowing increasing & I am taking it with each meal (3 x a day)....

ML

[maggielee]

Ps. With these meds I am able to speak longer without choking, still need lots of fluids... Also, working 33 hrs a week...ml

[rosegardens]

Thanks for sharing your information maggielee... appreciated, hope it will work better in time and you will feel much better, take care