Hi
I have inflammatory dry eye. Moderate Dry mouth .
Since last 6 months when i sleep to my left with in 30 second my left nostril gets blocked. If i turn to my right, my right nostrils gets blocked in 30 seconds and my right nostrils open up. This happens even if i use a saline nasal spray. Is this what early dry nose behaves like?
Pls share your dry nose symptoms in the early stage.
Many thanks.
Hi happylife,
That happens to me all the time, especially in the winter months when the heat is in and air is drier. The thing that I find helps the most is putting my face right in front of the personal humidifier that I run beside me on my bedside table. I use saline rinse and Flonase spray as well.
Of course, I end up falling asleep and moving away from the humidifier without knowing it, then wake up stuffed again in one nostril. It can be maddening, I agree. I'm looking forward to spring and summer when the air isn't as dry and I can breath at night.
I'm not in the early stage of Sjogrens either. I've been diagnosed since 2004.
Liz D.
I use a saline spray/rinse and also Nasonex, twice a day. AND generic Mucinex, twice a day. If my nose is blocked that forces breathing through my mouth, which is a disaster, even with 20 mg of Salagen a day.
I have chronic post nasal drip, and the Mucinex keeps that from turning to 'glue' and choking me.
My major problem at night is shoulder pain, but I must keep the various nasal medications going in order to be able to sleep at all.
Regards, Elaine
Quote from: Carolina on March 27, 2018, 06:31:32 AM
I use a saline spray/rinse and also Nasonex, twice a day. AND generic Mucinex, twice a day. If my nose is blocked that forces breathing through my mouth, which is a disaster, even with 20 mg of Salagen a day.
I have chronic post nasal drip, and the Mucinex keeps that from turning to 'glue' and choking me.
My major problem at night is shoulder pain, but I must keep the various nasal medications going in order to be able to sleep at all.
Regards, Elaine
Hi Elaine
Please let me know at what age did you develop dry nose? And has the dry nose remained stable or kept getting worse every year?
What symptoms of sjogren did you develop in you first 2 years of the onset?
How often do you get fatigue?
Are you on restasis for eyes? Since how many years? If you use restasis is that enough for dry eyes or additional medication is needed?
Thanks.
Quote from: Liz D. on March 27, 2018, 06:03:43 AM
Hi happylife,
That happens to me all the time, especially in the winter months when the heat is in and air is drier. The thing that I find helps the most is putting my face right in front of the personal humidifier that I run beside me on my bedside table. I use saline rinse and Flonase spray as well.
Of course, I end up falling asleep and moving away from the humidifier without knowing it, then wake up stuffed again in one nostril. It can be maddening, I agree. I'm looking forward to spring and summer when the air isn't as dry and I can breath at night.
I'm not in the early stage of Sjogrens either. I've been diagnosed since 2004.
Liz D.
Hi Liz
What symptoms did you develop in the first 2 years of sjpgren?
Amongst all the symptoms which one troubles you the most and how do you manage it?
Thanks
Yes, i have experienced this for years. At the pain clinic i went to, they said it was normal. In our breath training we learned to choose which side or both as part of our training. I do this with my meditations. If my allergies are acting up or i am in a flair I take an antihistimine.
I once read a study that showed that the eye we sleep on becomes dryest.
I imagine same goes for the nose since tears drain into the nose.
Try sleeping on your back.
My first symptoms were extremely dry mouth with lots of decay despite meticulous cleaning. It felt like I had cotton in my mouth all the time. I also had very dry, incredibly itching red eyes that felt like sandpaper when I'd scratch. I had chronic sinus infections and just never felt well. Very achy in joints, etc.
For me, the worst is the dry mouth. I take Evoxac to try to give me some saliva but I'm usually miserable with my mouth. I've had several abscesses and all my teeth are root canaled and crowned. Yet I'm always at dentist with issues. Lack of saliva affects digestion, etc. Literally, the only time my mouth feels ok and not sore is if I purposely stay home alll day and not talk or answer phone etc. But you can't live life without talking.
Liz D.
I've found my nose does the same, though I've been lucky as with treatment (cevimeline) and weight loss/diet improvements, my symptoms have slowly gotten better since my first brutal introduction to the dryness symptoms.
I do find my nose is more apt to do this when the air is dryer (e.t. hotel room during a business trip and I didn't bring a humidifier), so certainly keep your sleep space humidified.
At the height of the worst symptoms, I'd use a nasal gel (nasogel) prior to bed, and sometimes in the middle of the night if I woke up for something else. I also started using a corticosteroid allergy spray (nasacort) at the recommendation of my rhuemy.
One of the best things I've used (and still do - it's become habitual) is sleep with a breathe right strip, though it doesn't completely prevent the see-saw nostril thingy.
Quote from: Pete0211 on March 28, 2018, 04:57:19 AM
I've found my nose does the same, though I've been lucky as with treatment (cevimeline) and weight loss/diet improvements, my symptoms have slowly gotten better since my first brutal introduction to the dryness symptoms.
I do find my nose is more apt to do this when the air is dryer (e.t. hotel room during a business trip and I didn't bring a humidifier), so certainly keep your sleep space humidified.
At the height of the worst symptoms, I'd use a nasal gel (nasogel) prior to bed, and sometimes in the middle of the night if I woke up for something else. I also started using a corticosteroid allergy spray (nasacort) at the recommendation of my rhuemy.
One of the best things I've used (and still do - it's become habitual) is sleep with a breathe right strip, though it doesn't completely prevent the see-saw nostril thingy.
Hi pete
Can you please share the symptoms you developed in the first 2 years of sjogren onset?
Also what is the status of ssa, ssb, ana, ocular stain score, lip biopsy?
Thanks
Dear Happylife,
Please let me know at what age did you develop dry nose? And has the dry nose remained stable or kept getting worse every year?
My 'dry nose' developed at age 65, more or less. My nasal problems have gotten worse, and I have to be very consistent with my nasal sprays: Simply Saline and Nasonex. I also take Mucinex twice a day. Right now it is Spring (more or less) where we live, and we took the large humidifier out of the bedroom, since the furnace doesn't run as often. HOWEVER, the bedroom as been dry, so I am having more problems. These will get better once it really gets humid here, which is how our summer is.
What symptoms of sjogren did you develop in you first 2 years of the onset?
The first symptoms were: extremely dry eyes (ulcerated corneas), and dry mouth, I have to carry water with me at all times. Additional problems did not start until about 3-4 years later, so I thought I had a very normal, mild case. I took Evoxac for the dryness, and used Restasis drops, as well.
How often do you get fatigue?
I did not associate my fatigue with my Sjogren's (by the way, I don't have a 'technical' diagnosis of Sjogren's since the biochemicals that attack my organs/system are cytokines, not autoantibodies). Later, I had 'flares' with the three difficult symptoms: profound fatigue, total body pain, and depression.
Are you on restasis for eyes? Since how many years? If you use restasis is that enough for dry eyes or additional medication is needed?
I used restasis for 8 years, and stopped when I moved and my supply was overheated during storage. I stopped to see if I noticed any difference and I did not. I use Nature's Tears to moisturize my eyes at night and when I wake up in the morning. My eyes are often painfully dry. And some times my eyes 'run with painful tears' first thing in the morning. Weird.
I first developed very dry eyes (ulcerated corneas) in 2002, at age 60. Since then I have developed a progression of conditions, the most difficult are the various neuropathies, one of which, Peripheral Neuropathy, disabled me by 2010.
However, very few of those who start with Sjogren's, and dry eyes/nose/mouth, go on to develop more serious neurological problems.
Regard, Elaine
Thanks Ealine for sharing the details.
So mine also should be caused by cytokines. Because i have ssa,ssb,ana,rf,esr,crp....all negative.
But since last 15 months i have
Inflammatory dry eyes (taking restasis)
Dry mouth since last 1 month
Dry nose ( chronic rhinitis) since 6 months
Chronic folliculitis since last 6 months
Fatigue ... On random days....but has increased to like 50%days in a month.
Since last 20 days my left palm wrinkles after taking bath.
Does this sound like sero negative sjogren to you?
Thanks
Quote from: happylife on March 28, 2018, 06:08:49 AM
Hi pete
Can you please share the symptoms you developed in the first 2 years of sjogren onset?
Also what is the status of ssa, ssb, ana, ocular stain score, lip biopsy?
Thanks
I'm just approaching my 2 year mark.
To the blood tests, I'm seronegative. I don't recall an ocular stain score, but the shirmer's test showed a 0 in one eye, and 5 in the other. Lip biopsy was negative.
Symptoms - the month prior to my "heck week" of symptoms, I started getting a feeling of fluid in my ears and what I thought was post nasal drip. At the sudden onset of the symptoms (heck week), I had severe dry throat/mouth to the point I couldn't eat solid foods or sleep, and spent the day drinking ~2 gallons of water). The feeling of post nasal drip was overbearing (though I don't think it was actual post nasal drip). My nasal passages were (or at least felt) absent of any mucus, and were very sensitive to colder air and air movement. I didn't really notice my eyes being a problem until a couple of weeks later, but I think this was simply due to being overwhelmed by the not eating/sleeping part. Eyes were gritty feeling, bloodshot, sometimes painful, especially upon waking.
Hi Pete,
You are : Seronegative, lipbiopsy negative, occular score not checked......
So has the doctor confirm Sjogren for you or not?
Thanks
Hi Pete,
Have you check your anti-ccp and anti-centromere blood status?
Thanks
Quote from: happylife on March 29, 2018, 04:38:09 AM
Hi Pete,
You are : Seronegative, lipbiopsy negative, occular score not checked......
So has the doctor confirm Sjogren for you or not?
Thanks
I haven't been back to my Rheumy for a year now. At our last visit, I don't think she found my symptoms interesting enough for her time (She just started practice again after being in clinical research for decades). At our last appointment, she fully believed I am in the early stages of Sjogren's, and was treating me as such. After that meeeting, I had the lip biopsy (negative) and the eye test (positive). So do I have an official diagnosis - I don't think so (it's not like they give you a card for these). What I really need to do is schedule a trip / appt with the Rhuemy.
Quote from: happylife on March 29, 2018, 04:53:23 AM
Hi Pete,
Have you check your anti-ccp and anti-centromere blood status?
Thanks
Probably, but it's not something I have burned into my memory. From all the tests we did back then, there were zero indications of any autoimmune (or similar) issues.
Hi Pete,
I hope that you do not have sjogrens as reflected in your blood tests and lip biopsy.
Most research papers say that lipbiopsy has very high specificity and sensitivity. So if that is negative, most sjogren experts will consider you case as non-sjogrens.
Pls do check your anti-ccp and anti centromere status if you can and post it here.
Thanks