PDA

View Full Version : nosebleeds



jeriorleans
10-10-2009, 03:23 AM
Are nosebleeds common with Cytoxan? I have a call in to A.J.'s doctor but he has now had two controlled nose bleeds.

Sangye
10-10-2009, 04:20 AM
I've not heard of that as a side effect of ctx.

Nosebleeds are a sign of active Wegs, though, and if they're new for AJ, it may mean the ctx isn't working or something else needs to be adjusted.

Jack
10-10-2009, 05:19 AM
Agree with Sangye.
Not a side effect I have heard of but very common as a symptom of active Wegener's.

Doug
10-11-2009, 12:49 AM
I agree, too. The Cytoxan brings that (Wegs symptoms) into control. This is where having a WG-familiar specialist in charge of you son's care is imperative.

andrew
10-11-2009, 06:20 PM
Yeah I get nosebleeds fairly regularly although they occur much more often when I'm taking Pred.

Jack
10-11-2009, 06:42 PM
Seems to be another example of this disease making no sense.
When my disease was active, I had huge problems with nose bleeds often several times a day to the extent that I started to worry about the loss of blood. After it had been brought under control with medication including large quantities of Pred I had no further trouble whatsoever. These days, I just have a bit of a runny nose.

andrew
10-11-2009, 06:45 PM
Jack I wouldn't be too concerned. I'm a conundrum wrapped in a riddle wrapped in a mystery.

Sangye
10-12-2009, 12:13 AM
Like an eggroll, maybe?

andrew
10-12-2009, 05:30 AM
That's it!!! I was going to compare myself to an Onion but an Eggroll is perfect :)

firecracker
10-13-2009, 03:12 PM
My nose bleeds just about everyday. Im sure my constant nose blowing does not help. I tend to blow my nose way to hard. I am seeing a new rheum tomorrow that my ent got me in to that knows about wg unlike the one i was seeing. Oh and the bone scans came back neg for infection and only showed inflammation on the right side of my face. Back to square one yet again.

Jack
10-13-2009, 09:38 PM
Hard to resist doing it I know, but heavy nose blowing just makes things worse. In my own case, the state of my nose is a good indicator of my Wegener's activity and I would be seeking help if I returned to bleeding and blockages.

Sangye
10-14-2009, 09:11 AM
Jack's nose knows. Nosebody knows better than his nose, I'll bet.

coffeelover
10-14-2009, 01:30 PM
My nose bleeds everyday also. I started to flush out my nose with a salt/saline type solution. ( I put the recipe on this site a while ago) I do this flushing twice a day and should do it more, but it annoys me. This flushing has helped with my nose bleeds. I still have some bleeding, but nogt as severe or as often. This flushing was recommended by my ENT.

I attribute my nosebleeds to dryness in the air....and WEGS of course. I'd love to blame the pred because I hate pred, but can't say that is the cause

coffeelover

Doug
10-15-2009, 01:40 AM
Hey, wegs, dry air, and picking your nose contribute to nosebleeds! I know no one but me does that, but mining sometimes is the only way to open up the airway. Har! My doctor says wrapping your "extraction" finger in a tissue still is nose picking. Thought I should tell you.:):):):)

Sangye
10-15-2009, 01:48 AM
One of my classes on pediatric diagnosis was taught by a chiropractor who'd been a ped nurse for 20 yrs. She taught us ways to get info from shy children. If we had a toddler with frequent nosebleeds, she said "Don't ask 'Are you picking your nose?' because they will always say no. They know they're not supposed to. Ask them 'Show me which finger you use to pick your nose!' Works every time."

It worked so well, I could hardly suppress a giggle every time I saw a little kid actually show me "the" finger.:D:D

Jack
10-15-2009, 02:03 AM
Want to hear something gross? :eek:

At my worst, I used to use tweezers to pull huge, crusty plugs from my nose! They were almost the size of my little finger. The relief at being able to breath for a short time was immense.
The saline washes put an end to all that.

Sangye
10-15-2009, 04:29 AM
I am sooo happy you didn't add that comment on the "Healthy Recipes" thread. :eek::D

I have said it before and I will say it again: I don't know how you Weggies with such nasal involvement cope with it. The only crusty thing I have to deal with is my attitude. :cool:

firecracker
10-15-2009, 01:07 PM
LOL man!! you and I are two peas in a pod lol. I used to spend hours and I have pics of things that are bigger then my pinkie finger lol. gross yes but amazing

jola57
10-15-2009, 03:54 PM
:eek:wow, all I have is just itty bitty bits amd I actually use my hand sanitizer to wash my gold mines. It seems to help in blocking the cold as well:D

coffeelover
10-22-2009, 09:35 AM
A bit off the "picking" path. I flush my nasal passages with the salt mixture at least twice a day and that has helped considerably in regards to feeling the need to clean out the nostrils. Inflamation is still there...but not the uckky stuff.

firecracker
10-23-2009, 12:46 PM
Well, you know when I disappear from here, I am either in bad shape or really good shape. It went more from like... car accident to massive pain in my face.. thanks to smashing my face into my steering wheel and then the horrendous car searching. mine was totalled. doc appts to straighten out my bones again.. which i am still doing. then i went thru last friday thru ..say.. yesterday of huge face which i call "hunchface" from my right sinus going nuts and closing up with "rubber". whatever the heck that stuff is. finally some relief yesterday and today was really good. i went to the ent today. he decided to use the fun ol scissors lol. didnt hurt but he agreed with me.. holding it up and looking at it.. saying "ya... weird for sure" and then agreeing that the clear stuff is "irregular mucus and plazzzzma" you have to say that with the mike myers austin powers voice. plaaaaaazma! lol. anyway.. he says.. keep rinsing with the saline.. as i have been and use the nebulizer at least twice a day. he did say i can mix all three meds at once since it takes 3 hours of my life to do all this crap everyday. he thinks i should be on a higher dose of prednisone and maybe the cytoxin. so does my new rheum but they are waiting on the blood test and for my hours to add up so i can get fmla again. its now going to be closer to the end of december unless i get sick enough to have to go on them. meanwhile, i did get on the seasonique and so far i notice my WEIGHT. ugh. im getting off this soon. lol. well then again.. i have not been so off the wall crazy up and down like i was. im not sure if its helping or not. i havent seen anything worse. i mean i get this face swelling rubber stuff every third month or so it seems. i have stopped the severly excessive nose blowing. probably because of the lack of time i have to do it. so.. that is my new update for the week. at least i have some people that kind of have an idea as to what i have to deal with and understand lol. thanks !!

Sangye
10-23-2009, 12:53 PM
Were you wearing a seat belt? It's hard to hit your face if you are.... I hope you feel better soon!

RCOSSIO
10-23-2009, 01:36 PM
Bloody nose..hmmmm.

Do you suffer from allergies...as you can see its been pretty windy in FLA and today I been experiencing dryness in my sinuses. Sometimes when I sneeze very small streak of blood may come out...had my rheumy look at it and he suggested "along with my oil change"...that I lube once in a while. I told him "beg your pardon" anyway he did recommend I use Ocean Gel to lubricate when conditions warranted.

I still laugh when he recommended I lubricate...the thoughts :o

Doug
10-23-2009, 03:20 PM
:):)Even then, Richard, I presume you apply lubricant to your pinky finger (or finger of choice), then insert and twist it around to get a good coating on the interior of your nostrils.

Technically, this isn't picking your nose, but people observing you will doubt you when you say, "No, really!! I'm lubricating my nostrils!" :):)

firecracker
10-24-2009, 02:00 PM
i always wear my seatbelt but yet again, no airbags. Then again, I am glad they did not deploy. they would have broken my nose and that would have been worse for sure. I was driving northbound when a e250 van pulled out from the right side road about ten feet in front of me. i swerved as much as you can in ten feet.. no much and i ducked down because it looked like the van was going to go over my car. The ducking is what caused me to smash my right jaw and cheek into the left side of my steering wheel. it didnt hurt much but it looked pretty weird for that night then i bruised a little. my knee was pretty bruised up but im doing ok for the most part. i go to the chiro three times a week and that helps my right side drain immediately. its amazing how instantly i get unstuffed up on the right when he adjusts my neck by pulling my head upwards. it looks and sounds scary but really helps.

RCOSSIO
10-25-2009, 10:58 PM
Doug,

I agree, lubing with your pinkie is technically not picking your nose. I am thinking about writing steps on doing this correctly. However wouldn't you agree that using your index finger is much more satisfying as you gain more control?????

.....hahahhaha. :( :D :eek: :)

Sangye
10-26-2009, 12:21 AM
:D If there are any new members worried about asking something embarrassing, or wondering "what goes" on this forum, this will certainly put their minds at ease....

jola57
10-27-2009, 04:44 PM
No comment

Doug
10-27-2009, 05:21 PM
At least one of us was raised well...!:p

jola57
10-28-2009, 04:38 PM
You know I think we all now each other intimately by know, having discussed all the orifices, bodily fluids and other unmentionable problems which we don't discuss even with our closest loved ones.
As to being raised well, hmm I guess being raised in 98% RC country I didn't have much choice:D, also these were the days of whacking our behinds and hands by teachers, not that I ever had that experience (well not to my recollection that is:confused:)he he he

Doug
10-29-2009, 02:11 AM
(Jolanta, as I suspected, was "teacher's pet" all through school.~!:))

Sangye
10-29-2009, 03:05 AM
I bet she earned it by baking yummies like pumpkin bars!

RCOSSIO
10-29-2009, 01:09 PM
OMG...I betcha she also graded papers for the teacher so that she could earn a gold star!!!!!
OMG...I betcha she also was the bathroom monitor
OMG...i betcha she stayed after school to erase and clean the blackboard.
OMG...I betcha she was the one who also reported to the teacher who misbehaved when it was reading time.
OMG...I betcha she also raised her hand and never spoke if she was not chosen
OMG...i betcha she was the one who brought apples to share with guess who....THE TEACHER!!!!!

jola57
10-29-2009, 05:29 PM
1. I wish, then I could have given myself a much better grade
2. Nah, to much cigarette smoke
3. Nope, that was a punishment duty
4. Didn't need to, I swear our Teacher had eyes in the back of her skull
5. OMG, I prayed not to be picked and never ever put up my hand
6. Well not quite, it was flowers not apples:D:D

Sangye
10-30-2009, 01:29 AM
I love #5!

RCOSSIO
10-30-2009, 02:34 AM
omg..LAUGHING REAL LOUD

Doug
10-30-2009, 02:54 PM
I see you watched those goody-two-shoes types pretty closely, Richard! You didn't miss a beat.:)

jola57
10-30-2009, 05:21 PM
I'll be in you neck of the woods Richard at the beginning of december. My hubby has a cruise conference (oh how I love these) from Fort Luderdale to south carib. Just two ports but the prospect of being in sunshine again is making me impatient to get going.

RCOSSIO
10-31-2009, 10:13 AM
Doug,

Can I say enough I hated those "Teacher's Pet" arrrghhhh. In the corporate world we call them "Brown Nose, Kiss Ass" But give them credit they sure move up quickly!!!!!

Jolanta, if you are coming to So. Fla e-mail look forward to seeing you and hubby :D

jola57
11-01-2009, 05:22 PM
will do Richard, my hubby's name is Richard too.

Doug
11-02-2009, 07:01 AM
"Up and out", I always said! The people who did the work stayed behind in every sense of the word. Rather have my soul at the end of this travail than a job in the corporate offices!:):p;):rolleyes: