Drying up from the inside to the out! 😞 - Behçet's UK

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Drying up from the inside to the out! 😞

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Hi Behçets family :)

I have always suffered with Dry eyes, mouth & have Psoriasis so skin also...Lately inside of my nose & ladies bits are as dry as a desert too!

Ontop of this my breathing has been playing me up & for a couple of months have had a dry unproductive cough mainly morning & night...After 2 wks of peak flow tests, I have now been given Brown & Blue Inhalers.

My GP thinks I have Sjogren's syndrome (Sicca) & has sent a referral to the Rhumatoligists at a local hospital , (separately from the Rhumatoligist at the Behçets Center of Excellence where I’m under their care).

From what I have read about Sjogren's it is rare to have both Behçets & Sjogren's together? My GP also thinks my Psoriasis has progressed to Psoriatic Arthritis due to increased joint pain.

Latley I feel like I'm falling apart 😪 ontop of those bleughh autoimmune conditions, I'm in Perimenopause & suffering from that too! (Hellpp)

I was wondering if anyone can shed any light on the Sjogren's & Behçets please..

To be honest Any advice would be very much welcome & appreciated at the mo 🌻

7 Replies

Hiya , not sure how common it is to have both conditions together but I experienced very dry eyes and mouth for the first time in 1994 which was the year I also had uveitis for the first time . Behcets diagnosis followed along with sjogrens , oral erosive lichen plants and systemic sclerosis . Often difficult to tell which condition is causing which symptoms !! All are autoimmune conditions and treatments are often similar . I found azothioprine worked wonders for me but eventually came off it due to side effects. Colchicine helps with ulceration and joint pain , also continually use hyloforte and hylonight which helps I’ve been through menopause but haven’t had any real change in symptoms other than the uveitis happens less frequently in recent years . Hope you soon get on top of your symptoms , good luck 😊👍🤞

Hi Funhound 😊 Thank you so much for your reply, sorry to hear you suffer with extensive autoimmune diagnosises. My mum suffers from Lichens planus & Lichens sclerosis too! It's a really horrible thing hey! 😞 As you have both Behçets & Sjogren's it's reassuring to know that rare as it maybe to coexist, it does happen.

I'am currently (for last 8 years) taking Colchicine (its my best friend), however the Behçets Center does want me to go on Azathioprine, before trying it I've had to have my 2 Covid vaccinations out of the way (I had terrible side effects/reactions to those too!). So maybe in the next month I will be put on it?

I have never heard of hyloforte either hylonight? I will have a look into those thank you 😊

I totally agree with not knowing what is causing what?? It's such a struggle sometimes hey! I'm sure my GP is getting as confused as I am.

Than you lots again for your kind reply & the good luck 🍀

I will now inform future medical professionals( I have appointments with) that I know both conditions can & do coexist.

Takecare 😊✌🏼

Hi, I have dry eyes, dry mouth, dry nose ( have had it cauterised three times due to continuous nosebleeds after nasal sores), vaginal atrophy and repeated UTI caused by the urethra cracking with dryness. I have not had an official diagnosis of Sjogrens but it has been queried many times. For the dry vagina and UTI’s I have been put on Vagifem ( pessaries HRT) every three days and Hylofemme a lubricating a Hyaluronic acid gel applied three times weekly. It has made a tremendous difference to my comfort and infections. Good luck xx

Just got sicca confirmed with my Bechets. I surprisingly speed tracked through menopause in a couple of months this spring when I started on methotrexate: I was in perimenopause. But now I'm not cold anymore, like all the time like I was before. I was on azathioprine, but it didn't do enough. I have a persistant dry, neuropathic cough that is kept at bay with Lyrica (keeps my migraines away also). Its onset is usually about a half an hour to an hour after going to bed. It seems though, that my cough is somehow caused by spasmodic dysphonia. Can't tell you more about that yet or even what came first, but they think Bechets was a catalyst somehow.

Thank you so much Cecily Parcley & Amy Tenacious1 for your kind replies I really appreciate any advice or common grounds 😊 I will definitely look up Hylofemme,Hyaluronic acid gel & mention Vagifem to my GP (at my Menopause appointment on the 21st 🥴) I will also mention Lyrica to my GP. I now have alot of helpful stuff to read up on, thank you for sharing 🌻 Its really interesting as when you search for Sicca & Behçets it says its so rare to coexist, I suppose that's where lack of knowledge on both conditions with medical professionals fails again ☹ Its like we have to be armed with the knowledge before attending any appointments ourselves. (Whoever said life begins at 40 needs a poke in the eye! At 48 now I'm hoping 50 is what they really ment 😉)

Thank you both for the goodluck ,

& caring support 😊✌🏼

Hi there. This is so interesting. I too believe I have both Behcets ( diagnosed a decade ago) and Sjogrens.

I had been experiencing strange new systems for the last year- dry eyes, mouth, lips splitting in corners of mouth, swollen tongue and lips. I put it down to Behcets. Rheumy has prescribed for suspected Sjogrens though ( drops for eyes, artificial saliva etc).

I have tele appt with Aintree Centre of Excellence next month and in person with my own consultant the next month to confirm for sure.

It certainly makes sense of the random new symptoms!!

Good luck x

Hello!

I, too, have Behcet's, psoriatic arthritis and secondary Sjogren's. My diagnoses were made with the help of a vascular rheumatologist, an ophthalmologist, an oral specialist and a gynecologist.

It is quite the combination of conditions, treatment-wise. I've started Stelara to address the Behcet's and psoriatic arthritis. Many other meds to address the Sjogren's.

I work a demanding job, but swim regularly to help keep the pain and stress at bay.

So yes, Behcet's and Sjogren's can exist together.

Wishing you effective treatments.

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