Please help with nose bleeds from sjogrens

1604 Views 13 Replies 8 Participants Last post by acard, Feb 1, 2008

macfamily53

Discussion Starter · Jan 20, 2008

Well i am not sure how i want to start this but i have been having a lot of trouble with the sjogrens i have.Okay well i have had trouble with my nose getting dryed out somewhat for two years or more.Well all of a sudden since like last summer it is getting even more dryed out to the point that i am having nose bleeds at night and first thing in the morning.I finally got a humidifier for this like 2 weeks ago and also putting vasoline in my nose every night also.I had like one night that actually had no trouble with the bleeding.What happens is it feels like i need to blow my nose but everytime i do i get like a clot of blood that comes out along with just plain bleeding.I guess what i would like to know is did anyone else ever have this trouble and what did you do about it if anything.My rhuemetoligist told me just to do the two things i already have done grrr.Well if any insight i would appreciate it.

Tammy :hehe:

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acard

· #2 · Jan 20, 2008

Tammy,
I think maybe you should try and see a ears,nose and throat specialist.
I use ocean sailne mist to help with the dryness. I went to the dr. yesterday and I have yet another sinus infection and sometimes I have minor nose bleeds with those.
Bottom line is see your gp and hopefully you can get a referral to a ENT.

Best Wishes and a lot of hugs,
Becca

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Lily

· #3 · Jan 20, 2008

Hi Tammy,

I agree with Becca, an ENT could sort this out for you. I'd ask your GP to refer you to one.

In the meantime I'd probably ask if you have clotting antibodies or are you taking aspirin/anticoagulants? Just thinking about other causes than the Sjogrens?

There are lots of causes for repeated nose bleeds, no doubt your Sjogrens doesnt help and if you have allergy/sinus problems on top of that then it could make it worse. My daughter had repeated nose bleeds as a child and the ENT checked her snoz out and said it was from allergy, the tiny blood vessels were so irritated and inflamed that they broke easily. He said if it didnt settle down with the vaseline treatment that he would have to cauterise the blood vessels. Thankfully that was enough to settle it down for her.

love
Lily

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macfamily53

Discussion Starter · #4 · Jan 20, 2008

First of all thank you lily and becca for taking the time to answer my post.I think you are very right about seeing a EMT for the bleeding.Lily my rhueme has me on a baby aspirin a day she says for the heart but she also told me once that i did test positive for aps but the next time it was negative.I thought about it being a sinus infection awhile back but then thought i have had those before and this just did not feel like that but did not feel right either :lol: Does that make sense.Well i do have an emt i saw about a year ago for thrush and my son just had his deviated septum surgery done by her so i will call tomorrow for sure and see what happens.I will let you kn ow and thanks so much both of you for your help and support.

Tammy

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raggedyann1

· #5 · Jan 20, 2008

Tammy,

I hope she is able to come up with a solution for you. I will be interested to see what the doctor says. I get blood clots like yours when my nose is dried out. It doesn't happen all the time but when our heater (forced air) has been on a lot or when we have the real dry weather my nose dries out like yours. I don't have Sjogrens but at least one of my meds forces me to breathe through my mouth when I sleep and I think that is what contributes to the problem. I still haven't bought a humidifier so I will try that before talking to a doctor about it.

A side note on nosebleeds is to drink a glass of orange juice. It works. I am not sure if it is the vitamin C or what but for plain ole nose bleeds Orange juice can be a solution.

Take care,
Karen

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Maia

· #6 · Jan 21, 2008

Someone I know mentioned a really good saline nasal spray/gel that is supposed to be really good. Available in most drug stores like Walgreens but I can't remember the name brand at the moment. My nose is very dry right now due to our heater running practically nonstop with subzero temperatures so I'm thinking about looking for something myself. I'm also having constant ****** discharge from my nose and the vaseline isn't doing a thing - neither are the humidifiers I have.

I'll let you know if I find it and if it helps...

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mysharonna

· #7 · Jan 21, 2008

Hi Tammy,

My husband recently had deviated septum and throat surgery and he has been using a TERRIFIC nasal spray called Entsol. It is non prescription, but a little hard to find unless you order it online. His pulmonologist happens to sell it, so we buy it from him most of the time.

He also uses Nasonex spray sometimes which has a steriod component and is available through prescription, but not too sure if he is happy with the way that one is working.

There is also one called Simply Saline which is found in most pharmacies and is a bit cheaper. I even use it on my 2 year old, it works well to moisturize the nasal passages and help heal any raw areas.

Funny you say you are taking an aspirin a day, I have just started aspirin therapy about 4 weeks ago, and have had a nosebleed every day for the past week or so. Not sure if it is from dry air or the aspirin.

Either way, hope you are feeling better soon!
Sharon

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lin

· #8 · Jan 23, 2008

Tammmy goood luck hun sending you

(((((((((((((HUGS)))))))))))))) Lin xxxxxxxx:kiss:

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macfamily53

Discussion Starter · #9 · Jan 24, 2008

I wanted to let you know that i have yet to call the ent.One reason why is my rhueme does not think i need to as she says it is only natural for nose bleeds whe you are dryed out grrr.She is not getting what i am saying when i email her i do not thinkso anyway.I am going to call her tomorrow anyway and see when i can get in to see her.She told me when i was in there with my son like right before christmas that the nasal spray will not help with the really dry nose but did not tell her about the bleeding and what looks like clots to me either.Thank you everyone for the support and i will let you know what she says after i get into seeing her.

(((((hugs)))to everyone
Tammy

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Lily

· #10 · Jan 24, 2008

Hi Tammy,

Cant your GP refer you to an ENT?

love
Lily

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lin

· #11 · Jan 25, 2008

Tammy hows it going hun??

Hugs Lin xx

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macfamily53

Discussion Starter · #12 · Jan 28, 2008

Well guys i decided to wait and see with the nose because it is somewhat better now that we have our furnace working and not using the oven and space heaters to keep us warm for like 4 days.Tes our furnace went out on the coldest night

.It all worked out okay other then it of course being very expensive to fix but anyway the dry air seemed to make it worse which really makes sense and the other things is our weather has finally gotten above 32 degrees :lol: yeahhhhhhhhhh.So it still seems to have a little bleeding but only one side ussualy.It was just something i had never had trouble with any other winter,but also i am on a few more meds so that could be the problem also.Well thanks everyone and i will let you know if things continue to get better or not.

Tammy

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LoopyLoo

· #13 · Jan 28, 2008

Hi Tammy, :flower2:

I just read your post, what a horrible time for you! Before my diagnosis I had chronic sinus infections with sores in my nose and constant nose bleeds.

My ENT specialist gave me a cream called Naseptin which was an antibiotic to help the sores. He also gave me a long spouted spray which I could fill myself with saline to help flush out my sinuses and to help prevent reccurent infections. He also suggested vaseline to ease the sores.

I hope you get some relief soon Tammy.

Hugz, :hug:

Pam xxx

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acard

· #14 · Feb 1, 2008

Tammy,
I was checking to see how you are doing. I went out and bought a humidifier because it is sooooooo very dry right now and my sinus issues are not getting better even with a course a anti-biotics and decongestants

Very irritating:hissy: I just thought I would whine a little:rotfl:
How is your son doing after his surgery? I had that surgery 20some years ago and obviously was not a miracle for me. I know now though they have lasers and all the modern technology. I wish him well. I hope you are doing better also and if you are not PLEASE call your gp for a referral.

Take care and Big Hugs,
Becca

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