Problems with secondary Sjogrens: Has anyone had... - NRAS

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Problems with secondary Sjogrens

catwoman4 profile image
16 Replies

Has anyone had increased problems with secondary Sjogrens? I have RA and both are controlled with MTX and Hydroxy. Just lately the dry mouth is back with a vengeance, has anyone had this happen and if so, anything done to help? Hospital said see GP but that doesn`t seem right to me

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catwoman4
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16 Replies

The past 2 months have been really bad for me with the eyes and mouth. My GP does the mouth and eye scripts for me so I can get a lot on one script as such. I was also recommended on here biotene and just started this too for my mouth and seems to be good. I really feel it has escalated the past 2 weeks and not sure why if connected to flaring so hence bad. I wait to start biologics on Sunday as not been on any RA meds since Sept due to side effect issues.

cpt13 profile image
cpt13 in reply to

If you have not been tested for Secondary Sjogrens then request a full test. I also have been infected by dry eyes and found the ordinary eye drops useless. You need the High Intensity eye drops. Its worth noting with my myself as I work in an air conditioning office, and sit in front of a computer, my eyes get very dry. Since I have been working from home a lot because of Covid that problem has eased considerably. If you work in a similar environment please take plenty of breaks and take in the fresh air at lunch time.

Yes my sicca comes in flares. I don’t think the masks help I’m much drier after a day wearing them also central heating plays a part. An ice lolly can help in the evening I also have a portable humidifier . I use biotene gel it’s long lasting All so use an eye bath in the morning and evening as well as drops and night gel. What works for one doesn’t for another. I do relate to the discomfort.

in reply to

Does a JdHoney ice lolly come under this bracket🤪

in reply to

If it works ... who am i to knock it 😂😂😂

Brushwork profile image
Brushwork

I have secondary Sjogrens too. It’s a difficult thing to control. I know that sugar and dairy make mine worse.

Pands profile image
Pands

I know that wearing a mask doesn’t help my mouth dryness or my ears/throat problems. Try your GP and see what they say. I think it is a case of managing the symptoms. Are you under the case of an ophthalmologist for your eyes yet? I have been under the corneal clinic for about 12 years now (though not been seen for 10 months for obvious reasons!) but I was referred because of my eye dryness and vision problems. Best wishes.

Niao profile image
Niao

I hope, and will be interested to see if ,you get some answers. I was very happy to hear that you had been getting along well with regards to Sjorgrens and that the MTX and Hydroxy had had good effects. Being relatively new to all this, I had posted asking whether I was likely to get any relief for this as well on just the MTX. My first 2 weeks on prednisolone had a really good effect on the dry mouth, eyes etc but it has started to worsen again, on tapering down the dose. It's too early early to tell how I'm going to get on with the MTX for the RD and I think my Rheumatologist does intend to add in the Hydroxy, so am hopeful now from your experience, that I too will find some relief for the secondary Sjorgrens.

All the best.

catwoman4 profile image
catwoman4 in reply toNiao

Many thanks for your reply, I shall post if and when I get any help

Niao profile image
Niao

Thank you, appreciate that. My Rheumatologist hasn't really spoken to me in any detail on the Sjorgrens yet but to be fair is just focusing on getting my RA under control.

allanah profile image
allanah in reply toNiao

Good idea speaking to them. I have sjogrens, it's a nuisance but biogel helps my mouth and I always have a glass of water beside the bed and eye lubricant ointment , havent found a specific one of those but its putting it in regularly helps. I got the biogel mouth gel on repeat prescription from the gp too. Saves money if you buy a prepaid prescription.

Niao profile image
Niao in reply toallanah

Thank you, I will try and ask more at my appointment this week. That is, if my mouth isn't so dry I can't prise my lips away, do you get this? It's quite embarrassing at times, feel like I look like I'm snarling!And I must get some biogel, I had used other things before but this seems to be a good one.

allanah profile image
allanah in reply toNiao

Yes!!! But when your RA gets more controlled it eases a little so I can now manage with the gels. One thing though when it's possible the dentist might want you to get a yearly salivary gland check to check for blockages. It's a simple scan I get. Check it out after pandemic! Oh the joy's x

Niao profile image
Niao in reply toallanah

You're right there! Thanks for that about the dentist, I had no idea the dentist could do that

Niao profile image
Niao in reply toallanah

Sorry, slipped finger onto reply. I definitely will ask as I had thought this could be a problem. I hope it does ease when the RA gets under control, I felt like it might as it did ease a bit straight away on the prednisolone. x

allanah profile image
allanah in reply toNiao

Good , well when the dmards kick in it should help xx

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