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!!

[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