Nosebleeds

[rebekah]

Has anyone had nosebleeds from a cause other than WG or had to stop Flonase because of nosebleeds? I saw my ENT today since I've been having 2 nosebleeds a week for about 2 months now. Nothing major, just little ones, but still...

Even though I've been on Flonase since I was diagnosed, I stopped using Flonase for 2 weeks since I know nosebleeds can be a side effect. However, I was still getting them while I wasn't using it and decided to start using it again because when I stop my ears get worse. My sed rate was 27 the last 2 times I've gotten blood work (normal for me), just got maintenance rituxan last month, and I have no other flare symptoms so I know I'm not flaring. He did the scope and said my nose was really red. He ordered blood work to check for vitamin deficiencies, but asked me stop to using Flonase since it could be damaging the membranes.

I know nosebleeds are usually a sign of WG being active, but please tell me this could likely be something else. I cannot handle another flare. I'm taking a class again this semester and can't afford to drop it.

I hate that I haven't been very active on here lately. Although my manager let me drop to 32 hours a week (the minimum to still keep the benefits), it has just been wearing me out. I really miss everyone and hope you are doing well! :)

[Pete]

Hi Rebekah!

Good to hear from you. Do you rinse your sinuses? I had occasional nosebleeds, but found that rinsing my sinuses helps keep things clean and properly moist -- especially when it's really cold and the relative humidity is low.

[rebekah]

I rinsed a few times before, but I thought it was awkward and weird. But I'm probably just being weird about it... I'll start rinsing again and see if that helps! :)

[drz]

If you have crusts that come off or scabs afterward then rinsing and using some lubricant to keep nasal passages moist will definitely help reduce nose bleeds. If the blood comes from the sinus areas, then rinses should help reduce that and often one can rinse out most of the fresh blood so as to avoid a nose bleed later after it pools up first. Do be too forceful about removing scabs or crusts since that will cause more bleeding. Often and gentle is best approach. I do find for me that the nasal sprays with steroid help speed up the healing in the nasal areas.

[me2]

My sinuses bleed more if I don't rinse regularly. Plus they are very uncomfortable. I look forward to my morning rinse. Ask your doc about using budesonide in your rinse instead of using the Flonase. It is a steroid also

[mishb]

It's great to hear from you Rebekah but don't feel bad about not being on here so often.
Even though you have WG, you still have a life to live, school, work and play, take a lot out of able bodied people, so don't be too hard on yourself.

My nose bleeds small amounts, on a daily basis. Definitely nothing like pre diagnosis.
Every time I sneeze, I get a nose bleed.
I can no longer rinse because of the collapse of septum and scar tissue within my nostrils, but I do use the steam from a very hot shower each morning, to try and keep them clear'ish, and yes, the Flonase caused mine to bleed more, so I haven't used that stuff for years.

I hope it all comes good for you, really quickly so that you can finish you course.

[Alysia]

It's great to hear from you Rebekah but don't feel bad about not being on here so often.
Even though you have WG, you still have a life to live, school, work and play, take a lot out of able bodied people, so don't be too hard on yourself.

My nose bleeds small amounts, on a daily basis. Definitely nothing like pre diagnosis.
Every time I sneeze, I get a nose bleed.
I can no longer rinse because of the collapse of septum and scar tissue within my nostrils, but I do use the steam from a very hot shower each morning, to try and keep them clear'ish, and yes, the Flonase caused mine to bleed more, so I haven't used that stuff for years.

I hope it all comes good for you, really quickly so that you can finish you course.

sorry to be the "one who see black" (this is how we call it in Hebrew) but I am afraid that nose bleeding frequently is an indication for some wg activity. not necessarily a flare but smoldering. when I was in remission I didn't have any nose bleeding. but I hope that I am wrong. just saying so that you, Rebekah and Michelle, will keep an eye on the wg beast (I keep an eye on my eyes now, as it seems that you can flare or be smoldering also without nose bleeding).
I hope, Rebekah, that it is only a side effect of that med. 2 weeks are not enough to clear it, if it is. I remember a doc telling me that it took 3 weeks for the side effects of med to get out of the body. please update us.

[Alias]

Rinsing is slightly awkward and weird until you get used to it, but it's very helpful if your nasal tissues are inflamed. Is it possible the flonase is actually a bit of an irritant? I agree with Me2, you might consider asking your doc about Budesonide to add to a rinse solution. My nose bleeds a bit occasionally, but I don't believe it's due to any active disease. I think it's more related to existing damage. I sometimes slack off on rinsing and that is when I have problems, particularly in the winter. In addition to the Budesonide, my doc prescribes Bactroban to be dissolved in the rinse solution.

[MikeG-2012]

If your sinuses are red and inflamed, see if the moisture from rinsing helps. It is very dry this time of year, and dry nose, especially by us weggers, is a side effect--sometimes.

Make sure you get regular scoping and maybe even photos so the ENT can compare them from visit to visit. If things don't get better, it might be time for more drastic measures. For me, my active disease in my sinuses was the first sign of a flare-up--I had no other symptoms. I know that many of us have been helped by using liquid nebulizer steroids in the rinse bottles.

Keep after it Rebeka! Oh, and after the first 200 rinses, it gets pretty routine and won't bother you anymore!! :lol:

[me2]

Good point Mike. This time of year where I live it gets very dry indoors and it wreaks havoc on my sinuses if I don't humidify. It took me a while to figure it out. Dry air is painful and can cause bleeding. I made a trip to Arizona once and I had to mist my sinuses regularly to stay out of trouble. This may not be true for everyone but it is for me.

After approximately 20,000 rinses I am starting get used to it

[drz]

Rinsing is slightly awkward and weird until you get used to it, but it's very helpful if your nasal tissues are inflamed. Is it possible the flonase is actually a bit of an irritant? I agree with Me2, you might consider asking your doc about Budesonide to add to a rinse solution. My nose bleeds a bit occasionally, but I don't believe it's due to any active disease. I think it's more related to existing damage. I sometimes slack off on rinsing and that is when I have problems, particularly in the winter. In addition to the Budesonide, my doc prescribes Bactroban to be dissolved in the rinse solution.


I also had an ENT prescribe this type of nasal rinse when I had a serious infection that also had a lot of bleeding during the rinses. It was very expensive. There might be cheaper additives that might help if the infection is not too serious. Neil Med who makes the sinus rinse bottles also has a nasal spray to help lubricate the nasal passages.

[Debbie C]

Hi Rebekah,good to hear from you but sorry you are having issues. My mother keeps telling me I should use a neli pot but I'm like you and just can't bring myself to do it. I had an appt. with my ent Wed..but had to cancel ( mom was ill ) but I am going Tues. my nose is killing me like someone punched me and it is ice cold and now the cold travels to my forehead and now my eyes are getting real blurry so tomorrow I go to the optomologist. (sp?) . I am thinking its the weather and being in the closed up house. Can't wait till Spring to get a breathe of fresh air !!! Let us know what happens and try not to be to a stranger, I know its hard when you are so busy through........Take care

[MikeG-2012]

Hi Rebekah,good to hear from you but sorry you are having issues. My mother keeps telling me I should use a neli pot but I'm like you and just can't bring myself to do it.

A netti pot for me was 15 minutes of WATER BOARDING TORTURE!! :angry: Waiting for that water to trickle through the crusts and crud was excruciating!! The Neil Med bottles are 100 times easier and a lot faster. If you do it right, the Neil Med is done in about 45-60 seconds, tops. The pressure also pushes out any residual crud that is lurking in nose and sinuses.

I wouldn't use a netti pot either Debra! (-8 LOL!

OK, I really need to call it a day now. I'm starting to get punchy!! (-8

Have a great weekend everyone!

[rebekah]

Glad to know I'm not the only person who experiences random nosebleeds, but I wish we didn't have to endure all these issues! I know it's difficult to figure out if it's wegs, damage, or something else... After reading that several people use a neti pot, I ordered a new one from Amazon this morning and will start using it again to see if that helps. Even though it may be horrible, I have been through worse things... trying to be positive that it won't be so bad this time around.

[Debbie C]

The Neil Med bottles are 100 times easier and a lot faster. If you do it right, the Neil Med is done in about 45-60 seconds, tops. The pressure also pushes out any residual crud that is lurking in nose and sinuses.




Mike..I never saw the bottle..I've only seen those t-pot looking things. Is it used the same way ?? But I remember you saying you put something else in yours that worked really well...do you still have to use it ?
Good luck Rebekah !!!!!

[Pete]

Mike..I never saw the bottle..I've only seen those t-pot looking things. Is it used the same way ?? But I remember you saying you put something else in yours that worked really well...do you still have to use it ?
Good luck Rebekah !!!!!

You can get the Neil Med bottle at CVS. It looks a bit like Alladin's lamp.

[me2]

I have tried every method known to man. For many years I snuffed water out of a cottage cheese container. The Neil Med bottle is by far my favorite. Costco sells a kit that has little packets of the salt/soda and a couple of Neil Med plastic bottles. One nice thing about this is you are using a new bottle periodically and don't have to worry so much about keeping the interior clean.

Here is an example from online. The Costco kit has more packets and costs about 15 bucks- NeilMed Sinus Rinse Regular Kit | drugstore.com (http://www.drugstore.com/products/prod.asp?pid=142205&catid=59915&aid=338666&aparam=142205&kpid=142205&CAWELAID=120142990000072055&CAGPSPN=pla)

[annekat]

I have never used a neti pot and find the NeilMed squeeze bottle to be to-the-point and effective. (NeilMed also makes a blue plastic neti pot that looks like a teapot; the bottle looks like a bottle.) You may have to do the rinse more than once, even several times, to get stuff coming out, and once you see results, you may enjoy it more. Some people use something with a bigger receptacle, such as a Water Pik with nasal attachment, which would save having to refill a bottle multiple times and might be more effective in other ways, too. I haven't tried it.

As for nosebleeds, anyone within the population can get one whether they have Wegs or not. If there is a pattern of them, or they start suddenly for no apparent reason, then a Wegs flare should definitely be suspected, especially if other symptoms such as crusting, sweats, joint pain, etc. , are present. In my case, if I cough or sneeze really hard, or throw up violently, it can break the membrane inside my nose and cause bleeding. It will usually clear up on its own when I stop having that kind of coughing or whatever. If it continues, I will probably notice other symptoms, too, and the red Wegs flag will go up.

[Debbie C]

Yeah my mother has that tea pot or allidan's lamp kinda thing,but I agree that the bottle would be better since you could push water through faster. Still don't wanta do it !!!!! I seem to remember Phil and Mike were using the water pik and it worked wonders. I see want the ent says Tues. I don't think that is the issue since I don't have anything built up in my nose....it just gets so cold.

[rebekah]

I don't want to do it either Deb! But I bought the bottle-looking one hoping it's easier and less awkward, so I'll be more likely to keep up with it if it helps. Though from what others say, it may take a few thousands uses for me to kind of get used to it. haha!

[annekat]

You guys, it's not that bad. Make sure you use comfortably warm water but not too hot. The warmth can be soothing. Most say to use distilled water, and heat up in microwave, trial and error on amount of time. Also, you can make up your own saline mix with about 1/3 uniodized salt and 2/3 baking soda, that can be varied, more salt for more crusts in nose, but will be a little less mild. Use a little funnel from the dollar store to get it into the bottle, or a folded piece of paper. Heat up and shake before rinsing. And I think you made a good choice, Rebekah, with the bottle vs. the aladdin's lamp. It's simple and direct. I'd love to try the Water Pik. Deb, there may be more in there than you think, and multiple rinses will loosen it up. I've never had the cold nose, though, so am not sure what that is about. Good luck with it all!

[Middlesista]

Hi Rebekah,good to hear from you but sorry you are having issues. My mother keeps telling me I should use a neli pot but I'm like you and just can't bring myself to do it. I had an appt. with my ent Wed..but had to cancel ( mom was ill ) but I am going Tues. my nose is killing me like someone punched me and it is ice cold and now the cold travels to my forehead and now my eyes are getting real blurry so tomorrow I go to the optomologist. (sp?) . I am thinking its the weather and being in the closed up house. Can't wait till Spring to get a breathe of fresh air !!! Let us know what happens and try not to be to a stranger, I know its hard when you are so busy through........Take care

Debra - I also noted my nose is cold more oft than not and not only related to weather, also have nasal pain at times but no nose bleeds thus far. Wondering how you made out wth your eye doc visit?

[MikeG-2012]

I don't want to do it either Deb! But I bought the bottle-looking one hoping it's easier and less awkward, so I'll be more likely to keep up with it if it helps. Though from what others say, it may take a few thousands uses for me to kind of get used to it. haha!

It really won't be that bad Rebeka. One thing I'll suggest is that you hum, exhale slowly, etc. to make sure your palate is closed off when squeezing the bottle. If it's not, the water goes down your throat, and you'll be scared off once again. (-8

I agree to make the water a nice warm temperature. Like a baby bottle, if it's too hot on the soft part of your wrist, it's too hot for your nose. PM me if you have any other questions.

The WaterPik is definitely a better system. The water is more gentle, has more volume, and is much easier to tolerate. My wife loathes the squeeze bottles, but does use the WaterPik quite a bit.

[rebekah]

Thanks for the support guys! The bottle came in the mail earlier, so I will try using it tomorrow and let you know how it goes! :)

[blu4runner]

Hope it works well for you I too have to use the sinus rinse on a daily basis going on 4 years now but it does seem to help me. I keep a humidifier beside my bed each night as well to keep moisture around. Best of luck!!

[LCL2013]

So far, I'm able to get by with the Simply Saline sprays and a humidifier in my room at night. Pre-Wegs I did use a Neti Pot when I was pregnant and had a cold to avoid taking any kind of medication to provide some relief. Everyone may already be aware, but I would caution anyone using a Neti Pot or similar to use only boiled or distilled water. Straight from the tap water is full of little parasites that you certainly don't want to introduce into your sinuses. I made that mistake once. Holy Sinus Infection, Batman!

[Debbie C]

Well Rebekah,are we having fun yet !!!!! Good point Linda about not using water from the tap ( look at Flint,Mi. ) you never know whats floating around.

Well I went to my eye dr and she said I had dry eyes and told me to use drops and then my ent is stumped..has no idea why my nose is cold unless I have rynards disease (sp?) He told me every thing looked good but to let him know what they say at CC so he will know !!! That was a waste of money,I should charge him for any info I get !

[rebekah]

It's kind of uncomfortable, but it has only been 2 days so I'm sure I'll get used to it soon. Good point about using distilled water, not from the sink, Linda!

And I totally feel ya, Deb! Some doctors appointments can be such waste of time... I used to always say the doctors should pay me for making me wait so long to see them. Thankfully, I don't have that issue with any of my current doctors.

[annekat]

Everyone may already be aware, but I would caution anyone using a Neti Pot or similar to use only boiled or distilled water. Straight from the tap water is full of little parasites that you certainly don't want to introduce into your sinuses. I made that mistake once. Holy Sinus Infection, Batman! I haven't used a neti pot, either the plastic ones or the more often recommended porcelain ones. But instinct tells me there might be more places for bacteria to hide in the neti pot, since it is a more complicated shape. NeilMed does give instructions with its products on disinfecting them in the microwave after several uses, and also recommends replacing them every three months. I don't do it quite that often but it always feels good to get a fresh new bottle.

[Alysia]

Well I went to my eye dr and she said I had dry eyes and told me to use drops and then my ent is stumped..

Dry eyes can be wg related.

[me2]

Dry eyes can be wg related.

I've had dry eye but it did eventually go away. Many of the problems we get cannot easily be linked directly to wg but docs with experience have learned to recognize the connection without having to rely on a test of some sort. Many times there simply isn't a way to know for sure

[LCL2013]

I haven't used a neti pot, either the plastic ones or the more often recommended porcelain ones. But instinct tells me there might be more places for bacteria to hide in the neti pot, since it is a more complicated shape. NeilMed does give instructions with its products on disinfecting them in the microwave after several uses, and also recommends replacing them every three months. I don't do it quite that often but it always feels good to get a fresh new bottle.

Bacteria straight from the pot can also be a concern, annekat. For someone using one on a regular basis, I too would recommend either throwing it in the dishwasher every couple of days or sanitizing it in the microwave.

[drz]

Bacteria straight from the pot can also be a concern, annekat. For someone using one on a regular basis, I too would recommend either throwing it in the dishwasher every couple of days or sanitizing it in the microwave.

Rinsing the squeeze bottle or equipment with a mild bleach solution is also recommended to sanitize.

[MikeG-2012]

Rinsing with a mild bleach solution is also recommended to sanitize.

Correction if someone does not read this thread carefully:

"Rinsing the netti-pot with a mild bleach solution is also recommended to sanitize."

[Alias]

good catch - I'd hate to hear about anyone rinsing their nose with bleach!

[MikeG-2012]

It's kind of uncomfortable, but it has only been 2 days so I'm sure I'll get used to it soon. Good point about using distilled water, not from the sink, Linda!

So how is the drowning, I mean rinsing going now Rebekah?? (-8

Are you getting any relief from the rinsing?