For those who also have Sjorgrens

[Niao]

For those of you who also have Sjorgrens, is methotrexate likely to help with this too, or am I likely to have to have other meds?

Have only been recently diagnosed with RA and Sjorgrens, this week being only my third week on MTX, 4th on prednisolone.

I've only had one meeting with the Rheumatologist so far, will be having 6 weekly meetings for a while, and the Sjorgrens was not really discussed.

I have found improvements in saliva production on the steroids so was wondering if the same is likely when the MTX kicks in?

Also, I will obviously discuss in more detail with the Rheumatologist, but is it normal to get pains on the roof of your mouth, kind of where the bony areas are where hard and soft palates merge? It hurt to touch and swallow. I know this could be something separate but it has also completely improved on the steroids.

[cpt13]

Methotrexate does not really help with Sjorgrens as far as I am aware. I have a touch of Sjorgrens and use dry mouth toothpaste called biotene, generally have to order it at your local chemist. Have you been tested for Sjorgens and how severe is it?

[Niao in reply to cpt13]

Too bad, was hoping to get away with less meds! Nope, no test yet but have only seen Rheumatologist once so far. He diagnosed/said it was highly likely to be, based on symptoms and said that it may or may not respond to meds. I also use dry mouth products. Have had symptoms for about 2 or more years now but very bad dry mouth all of this year, also eyes! Very very little saliva and tongue problems, more acid reflux etc.

I'd been putting it all down to cocodamol and omeprazole.

Also have other symptoms.

[sibilant]

Hi Niao, I've had Sjogren's alongside RA for 45 years and have always had to use eye drops (Viscotears or Carbomer) alongside MTX and latterly biologics. I also use Biotene gel when my dry mouth wakes me at night and in the morning. Sorry to hear you are going through similar painful and uncomfortable experiences. But at least the meds are a million times better now than they were when I was diagnosed - it took me 4 years to get a diagnosis and then another 5 years to get onto DMARDS - I had 5 years on high dose aspirin that wrecked my hearing (and did nothing to prevent me getting serious joint deformities in my early 20s). Really glad no-one has to experience that nightmare any more .... Good luck !

[Niao in reply to sibilant]

Thank you. That is dreadful! I count myself so lucky to have had to have these troubles at this age, 56, and not when younger! Though I have had troubles with chronic pain and fatigue since my 20s, Fibromyalgia and Osteoarthritis. You must have a wealth of knowledge on all aspects!

Yes, medications have come a long way.

Some great recommendations.

I really hope you are not doing too badly now and that the biologics are helping?

[maggielee]

Hi NiaoI recommend familiarising yourself with NICE guidelines for sjogrens, good overview of sjogrens & recommendations to treat. I have attached 2 links and you can also contact or check the sjogrens association website:

bssa.uk.net/

Guidelines:

rheumatology.org.uk/news-po...

academic.oup.com/rheumatolo...

There are lots of issues caused by dry mouths, sores, tenderness, difficulty swallowing, dry mouth, dry cough, etc.

I take mycophenolate & hydroxychlorquine for both sjogrens & SCLE (lupus), I also take pilocarpine for encouraging moisture production & recommended by a rheumy who specialises in sjogrens.

Some folks find the side effects difficult at first & give up, often you have to reduce the amount taken & very slowly increase it. Not easy, but I no side effects now & it helps moisture production which is really important. There are various gels like oralieve, etc. to help with moisture, drinking lots of fluids, etc.

See:

lupusuk.org.uk/dry-eyes-and...

Good to know abit for meetings with your rheumy, if they suspect sjogrens it a really good start to getting treatment for it as dryness can cause all sorts of issues externally & internally.

Wishing you well...ml

[Niao in reply to maggielee]

Excellent advice, thank you! Yes, I have done some research but will be sure to follow the links.

Didn't seem to me, on first meeting, that the Rheumatologist was that interested. He just said maybe the Sjorgrens would respond to meds too, as an afterthought.

I had read about the pilocarpine.

I really hope you're as well as can be with the SCLE ?

I have read quite a bit on Lupus over the years, very tough!

[maggielee]

Your quite welcome... Sjogrens is very much brushed aside as dry mouth & eyes, very frustrating and aspects of difficulties with dryness eating or sores in your mouth even loss of teeth (sadly for me) there are many other symptoms not attributed to this autoimmune condition & often overlaps other autoimmune diseases including RA.Really helps to be self aware if you don't think symptoms are not RA related..it does cause other symptoms that if not treated makes your quality of life even more challenging.

It is possible that your Rheumy feels if he treating RA that it will suppress sjogren symptoms as well ?

Maybe a question at next appt....

I always go armed with questions especially if I am flaring &/or getting brain fog I can get when I've overdone it.

The key is that sjogrens effects or attacks moisture producing glands & can impact our organs, lungs, etc. and our quality of life as well.

Best wishes & best of health....ml

[Niao in reply to maggielee]

Thank you! Wise words. All the very best to you too !