Author Topic: POLL! How Has Sjogrens Affected Your Tongue?  (Read 289 times)

Binsky

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POLL! How Has Sjogrens Affected Your Tongue?
« on: May 12, 2018, 07:44:11 AM »
Please Respond to this Poll. Thank you for Participating.
I am suffering with a Burning, Fissured, Cracked Tongue and would love to know how prevalent this type of thing is with others.
« Last Edit: May 12, 2018, 07:47:00 AM by Binsky »

cccourt1942

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Re: POLL! How Has Sjogrens Affected Your Tongue?
« Reply #1 on: May 12, 2018, 09:49:27 AM »
Hi Binsky,
    I have to add, today I no longer suffer burning tongue.  The three years prior to my dx I had burning tongue.  I lost about 30 lbs as I could barely stand anything on my tongue...nor could I smell or taste.  No one knew what it was.  Once I was dxed, I was told it was "burning tongue".  Of course it's the extreme sicca.  The first year on meds (well...maybe about 4 or 5 months) I had nothing but a product which "soothed" my tongue...did not heal it.  But I moved, and new rheumy put me on low dose prednisone  (for ALL of it...not specifically for my tongue.)  I took 5mg per day for a bit over a year, and to this day I believe it is what "healed" my tongue.  It took me nearly 1 1/2 years to work up to the pilocarpine dosage I needed for oral cavity comfort...stomach reaction to it....and I realize that helped the saliva feel. But my tongue was ALL you listed.  And hurt.  If I hadn't eaten ice cream, puddings, and cream soups, i'd have lost more weight! 

Don't know your stage, but if it includes this, good luck. 
ccc
Sjogren's, Psoriasis, Hashimoto's, Osteoporosis, Osteoarthritis, Cold hands/feet,  fatigue,  pilocarpine-25 mg , Restasis, Plaquenil, Low dose Prednisone (2-3 mg daily) Xylimelt, Citrucel, Alcon-Naturale, Tears,Omega 3, Vit.D, Caltrate+D3, Fosamax, CoQ10, Zinc, Oxtellar. Levothyroxene

Binsky

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Re: POLL! How Has Sjogrens Affected Your Tongue?
« Reply #2 on: May 12, 2018, 10:06:24 AM »
Hi CCC,
Thank you so much for the additional details!! Very helpful!
My symptoms include:  Fatigue, Weakness, Dry eyes, nose, mouth, tongue, throat, airways and GI tract. For some reason, I find the Fissured sore tongue the most disturbing.  For the last 5 days, I?ve also had a burning on the side of my face....no idea what that?s all about!

I don?t take any medications yet, but I have an appointment with a Rheumatologist in a couple of weeks, and I?m guessing he will recommend some.  I don?t like drugs, so I don?t know what I will do.

Thank you so much for sharing!

Cheers

Binsky

Maria3667

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Re: POLL! How Has Sjogrens Affected Your Tongue?
« Reply #3 on: May 12, 2018, 10:18:02 AM »
Couple of weeks ago I ran out of DHEA and almost immediately my mouth and eyes became so much drier - also the burning tongue took a turn for the worse.

If I soothe my symptoms with proper hormone supplementation, Sjogren's almost becomes manageable instead of incapacitating.

For me there's a profound hormone correlation - especially androgens (male hormones) - somehow they're linked to moisture producing glands - also in my tongue, apparently.
« Last Edit: May 12, 2018, 10:19:38 AM by Maria3667 »
50. Lyme's (1998), Sjogren's (2003), hypothyroidism (2004), osteoarthritis (2016), DES-daughter, GAD. Pilocarpine, natural thyroid hormones, 25mg quetiapine, low dose testosterone, 2.5 mg dhea, supplements. Endometriosis, cherry angiomas, macules. Allergies: nickle, methylisothiazolinone, latex

Carolina

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Re: POLL! How Has Sjogrens Affected Your Tongue?
« Reply #4 on: May 12, 2018, 03:38:52 PM »
I have thrush on my tongue.  It is yellow and fuzzy or covered with a thick layer of gunk.

If I use the prescription stuff, it will clear up.  But it comes back.

I don't think I have developed this because of Sjogren's, but rather from my deficient Immune System, which makes me vulnerable to SIBO (Small Intestinal Bacterial Overgrowth) and Thrush, which is a fungus.

It is so icky.

Regards,  Elaine
Female-76-CVID-pSJS-IC-PN-CAD-Osteoarthritis-COPD-SFN-IBS-Knee/Shoulder Degeneration-SIBO, Intertrigo,Act.Purpura-Anemia-Copper Def-Raynaud's-Meniere's-Hiatal Hernia-Achalasia-IVIG Gamunex-Medrol-Gabapentin-Atenolol-Pilocarpine-LDN-Nasonex-Lipitor-Estrogel-B-12-Iron-D-Mannose-NAC-Co-Q10-D3-FishOil

Pepita933

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Re: POLL! How Has Sjogrens Affected Your Tongue?
« Reply #5 on: May 14, 2018, 12:00:15 PM »
Carolina, thrush is very common in Sjogrens patients.  I've had it several times.  Since I have achalasia it ends up in my esophagus.  My tongue is an issue as well.  Recently with thrush, my tongue was very unhappy.  Right or not I found swishing my mouth with hydrogen peroxide and spitting it out helped.  (Also heard a gargle/swish of salty water helps, but haven't tried it.  I guess I avoid pain whenever possible!)

Recently my Rhumatologist RXed pilocarpine, it is in my brain the equivalent to restasis but for the mouth!  So far it I think is making my mouth moister, and helping with tongue pain.

Have you noticed an intolerance to spicy food?

Ah, on smell, taste is really linked to your sense of taste.  Some folks have better sniffers than others.  Some meds may interfere and I know radiation, and just plain old aging does as well.
Sjogren's Syndrome, fibromyalgia, achalasia, osteo arthritis, degenerative disc disease, hypo thyroid,(no thyroid),

araminta

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Re: POLL! How Has Sjogrens Affected Your Tongue?
« Reply #6 on: May 14, 2018, 01:10:30 PM »
The only tongue symptoms I've had so far are dryness and fairly frequent ulcers.
Dry eyes (MGD),dry nose, dry mouth, labyrinthitis, rashes, dry skin, mouth ulcers, constant but fluctuating fatigue.  Blood tests and Schirmers negative and no Sjogrens dx yet.   Flax oil, multivitamins,  saline nasal spray, Hylo forte, Lacrilube, organic castor oil for eyes.

lorigacc

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Re: POLL! How Has Sjogrens Affected Your Tongue?
« Reply #7 on: May 15, 2018, 06:50:24 AM »
Cracks in my tongue and have had thrush
Secondary Sjogrens, Rheumatoid Arthritis, Antiphospholipid Syndrome, Osteoporosis, Vertebral Compression Fractures, Kyphosis, Hiatal hernia
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susanep

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Re: POLL! How Has Sjogrens Affected Your Tongue?
« Reply #8 on: May 15, 2018, 06:12:26 PM »
Not only have I had sore tongue and cracked tongue with fissures, but right now on my lower right side, I have a terrible ulcer deep split like in my gums. It's painful and hard to eat. I am not sure what to do about it.

susanep
Sjogren's, Lupus, Rheumatoid Arthritis, Hypothyroid, Fibro, Sleep Apnea, Diabetes 2, Asthma, and Gerd.  (Meds I take) Omeprazole, Pilocarpine, Levothyroxine, Effexor, Cpap, Aspirin, Mobic, Prilosec,, Xanax, Restasis, Systane,Vitamin D3, Plaquenil, Gabapentin, Provigil , Advair, Nasonex, and Proventi