So DRY!

[arina83]

Ever have mouth, eyes, nose and lungs so dry you can't sleep? Got woken up by my mouth being so dry...and realized how dry everything else is. Have run out of my Restasis trial, and am waiting to hear if my insurance will cover it. So, back to the dryness until then, I guess. Haven't found anything else that works as well as the Restasis.

Desperate enough I'm contemplating going to see the PA I've been seeing who is really bad or even the rheumy who was also pretty bad.

Biotene is helping a little, as are the drops I have....but I don't know what to do about the dryness in my lungs.

Will resume my search for a new PCP in the morning.....thing are so dry and uncomfortable that I'd go to the ER if I thought it would do me any good.

[gilth]

Reading this I though: YES! -The lung thing is very new to me, but I actually have had dry lungs (I dont even know if its possible, but it sure feels like it), dry ears and sinuses, to the point where I get stingy nerve pain from it shooting to my face, dry mouth and dry nose. It feels like a complete and utter dryness in the entire body tbh.

So sorry you are feeling this, I know its hard! -Just know that it does turn! Even though we never heal from this, ther ARE better and worse days. And the better ones are there to let you know more will come and its worth the agony when they do arrive! *hugs*

Btw, when you get the dry lungs thing, does it feel like coughing the whole lining around your lungs is dry and sore? Mine does.

[Duchess]

Try a humidifier. If you don't have one, I have found that putting a large pot of water on the stove on low helps some. You may want to try some over the counter saline spray for your dry nostrils - also a sinus rinse .

[lolo1979]

Ugh, I know how hard that is.  I would recommend a couple of things. First, I would definitely get to a doc who will prescribe plaquenil or some other DMARD for you.  Plaquenil has helped many of us with the dryness issue, myself included.

Second, I see you are taking turmeric. Something that has helped me tremendously with the dryness is taking turmeric in combination with sea buckthorn. I take 3 turmeric and 2 sea buckthorn with lunch and dinner.  If you haven't tried adding the sea buckthorn, I would give it a shot.

And then of course addressing the symptoms with some of the great things already suggested.  I also try to distract myself as best I can when the dryness hits hard.  For me, it helps to at least take my mind off it.

[arina83]

Thanks for the idea lolo1979. I'm on 1200mg a day of turmeric. How much do you take? How many milligrams of sea buckthorn?

Contemplating right now if I want to go back the the PA I've been seeing, lay out all the symptoms I've been having and how they match with at least Sjogrens, and maybe RA too, and politely demand to be started on plaquenil. Only reason I'm even contemplating going back to her is that things are so bad, and I can probably get in to see her within the next day or 2 The other place I'm thinking about going instead, it doesn't sound like I can get in until December/January.

Distractions do help a lot. Found a new online game called dragonvale that I've been playing.

Anyone know of any good website about being Seronegative, sjogrens and RA? The big issue is that the PA (and rheumy too) don't seem to know about Seronegative, which I am.

[KellyG999]

Arina,

OH YES. I know the feeling. I need to invest in a new humidifier as mine gets so gunky and I got tired of the arduous cleaning and scrubbing process every day. There has to be a better way!

I noticed there is no pilocarpine/salagen or evoxac on your meds line. Will the doc not give you a trial of a real wetting medicine like these since you are not sero-positive? I am not either but I have pilocarpine. It seems relatively benign as far as drugs go and it really increases my "fluids." (eye, mouth, etc.) It does cause me to sweat/flush a bit but I can live with that.

Good luck.

KellyG

[arina83]

Hi Kelly,

Think part of my mission today will be to find a humidifier, so hopefully I'll be able to sleep. Have only 4 days of Restasis left, and I'm using one now. Eyes are happier, but my mouth is so dry. Biotene and drinking water just isn't working.

My PA doesn't seem to think I have something autoimmune, which is why she hasn't prescribed any meds. Had to get the Restasis from my eye doc, after she saw I have NO tears. Found some good information from the National Institute of Arthritis and Musculoskeletal and Skin Disease (NIAMS) about RA and Sjogrens, and I'm planning right now on writing her a letter and including this information, plus information from the ACR about plaquenil, and now salagen and exovac. Hopefully, I'll be able to convince her to prescribe this stuff.

Actually, sweating & flushing sound kind of good to me right now! Was in the 30s here this morning and I woke to a bit of snow & ice on the ground.

[4Kids]

Can you find some saliva producing lozenges in the meantime? I use Saliva Sure and have heard good things about therabreath? There are saliva substitute sprays like MouthKote that help to lubricate, and Biotene makes an oral gel which gave me the willies, texture wise, but works pretty well.

Another thing you can do is get a bowl of boiling water and do an old fashioned steam. Breathe it in and out. Get some fresh air, repeat. I did the saline rinse of my nose and there is a squirter from Rhinarious (sp?) that is just saline and some other things to put moisture in my nose which helps it from getting too dry. They also make a nose gel which helps a lot.

I have Systane Eye drops and Restasis has a program if you can't afford to buy it.

Other than that, I would desperately beg for Salagen and Plaquinel. Salagen took a while to work for me, like 8 weeks to see any difference and 12 to see a good difference, and now I am 90% give or take to what I was before my big attack. I will take that. I was surprised at the difference with Plaquinel after 6 weeks.

My iron was low as well, and that can cause a dry mouth and some of the other problems I was having. I take Ferramax as well as Floravit? and am seeing a remarkable, dramatic improvement.

hth and I hope you feel better soon.

Jackie

[arina83]

Thanks for the ideas Jackie. I do have to be careful about what I use, since I tend to be very sensitive to artificial sweeteners (especally sorbitol). I do have some ginger candies and fruit candies too, which help a little. Except for that one place in my throat nothing seems to reach.

Got a humidifier today, and I'll see how it works tonight. And I do have information on that program Restasis has, but I'd like to see if my insurance will cover it before I go that route.

Begging for plaquenil and salagen or exovac are on the agenda. Writing a letter to my PCP... Outlining my new symptom (arthritic pain in my hands and joint swelling), giving her information abut Sjogrens and how it's possible to be seronegative, and then going into begging for the meds (and mentioning I'm prepared to find another doctor if she won't give me the meds).


Gilth, the dry lung I get is having the dry feeling I have in my mouth, but in my lungs (kind of like being dehydrated, but no amount of water helps). And a little "sticky" feeling, a little pain, and varying degrees of difficulty breathing.

[4Kids]

Saliva sure is sugar free, just has xylitol which helps stimulate saliva.

[newhorizons]

It might be helpful to put your new humidifier close to your bed until you begin to feel 'moisturized'!

Have on occasion put a pan of water on stove and put a towel over my head to keep moisuture from escaping. Be careful not to burn yourself.  Nowdays, I have a personal humidifer that I put my nose and mouth in and breath in the warm, moist air.

Use this when in a flare... Can usually make it otherwise with humidifer running 24/7 in my room during cold weather part of year

[newhorizons]

Just thought of something else. Are you drinking lots of water each day?

[arina83]

Yes. Drinking lots of water. With my mouth so dry most of the time, I don't really know any more if I'm actually thirsty or not. Usually end up drinking so much water my urine is clear.

Humidifier is next to my bed. I was hoping to take a nice shower, but I need to wait for the grout repair in my shower to dry. I just remembered that I have a little steam inhaler thing, and I'm going to give that a try to see if I can get some relief in my lungs.

[Skylar]

I used to wake up as a little kid in the middle of the night unable to breathe because I was so dry and every breathe hurt. I found running very hot water in the sink and sticking my head over the tap with a towel over my head to allow the steam to go through my nose helped. But I also found that if I keep my room humidified while sleeping, I can avoid that horrible feeling. In a pinch, while traveling, I'll place a damp washcloth on my face while I sleep for the humidity. My feeling is that you have to keep on top of the problem and don't let the dryness get out of control.

[drylady]

I am curious lolo1979 has Seabuckthorn oil helped with your dryness?