Tear duct obstruction..bloody nose..severe headaches..

[ballfolife23]

new to this forum

recently i found out that my tear duct is obstructed...this is when the tears in your eyes don't drain properly and they just sit there..and when my tear duct started to act up thats when my headache started aswell...I asked my doctor if there is a chance they can be linked together he said that the headache has nothing to do with it...so i don't know what happenin :/

And i have had a bloody nose on and off..mostly on for the past 4-5 months :/

Anyone experienced these kind of affects that im going through? Also i've relapsed..i was diagnosed with weggy when i was 17...im 21 now..

Anyways i hope someone can give some insigh to this...

I have a feeling it could be my sinus but im not sure...

[Dumpy]

Ballfolife,

When all of mine first began I was having headaches along with the nose bleeds and that was the first signs of my Wegs. Are you seeing a Wegs Specialist ? It took almost 2 years to get my sinuses back to close to being normal.
My tear ducts weren't obstructed at first but they both have been that way for some time and my ENT tells me that it is directly assoiciated with my sinuses. We have talked about putting in tubes but he would rather not if they don't get infected and it doesn't bother me to much because it could possibly create more problems with my sinuses as for as the healing.

[elephant]

Hi Ballfolife, sounds like you are flaring...need to see your Rhuematologist. I was going to ask the same question as Dumpy. Are you seeing a Wegeners specialist? You don't want to wait, you really need to be checked out, so that there is no damage occurring. Let us know how you are doing.

[ballfolife23]

As i stated when i posted this..I've relapsed..So yes i've had a specialist for the past 4 years

And when i first had it i was 17 yrs old..my symptoms were red eyes..coughing up/puking blood and shortness of breathe...I was on cyclo and all the other good drugs for about year and a half..it cleared up..than recently last december i started up coughing up blood again and in febuary i officially relapsed ...so yeah..im not new to this at all i've been down this road before...

[elephant]

Ballfolife are you on medication? Glad you have a specialist,so I don't have to nag you on that. :)

[ballfolife23]

Yup...cyclophosphamide...been on it for 6 months now...i might have to switch cuz ive been on it for a long time and theres risk of cancer...
nova trimel for anitbodies for my lungs
10mg prednisone

thats it..

im scared whats gonna happen next..im goin for a bronchoscopy on the 26th to see if there still bleeding in my lungs..somthing i tol my doctor that shud of been done in december-feb..not NOW...really frustrating..but ye..the bronch will either make me or break me...either way im gonna be off cyco and switched to azathioprin..or some other drug he told me bout which is a very powerful and expensive drug

[elephant]

He must be taking about Cellcept, I take that along with other stuff to keep my Wegeners quiet.
Ballfolife, glad you are on here, you can ask any question and will be here for you.
If you start to get worse call your rhuemy, I am sure you are on top of this.

[ballfolife23]

Hmm is cellcept the drug you take twice a year??cuz thats wht i was told by my specialist...Iunno man im so confused...i feel great...but i mean..this bloody nose..coughin up blood..and messed up eye is just annoyin..I still do everything a normal 21 yr old does u no..i work..i go to school...i try to live my life to the fullest...iunno just really confusing

[elephant]

If your coughing up blood you need to go to the emergency room ballfolife.

[ballfolife23]

Been to the ER..seen my specialist...Sadly..he still doesnt have a clue why im couging up blood..Im thinkin of changing doctors cuz this is getting ridicoulous you know?...Its been since last december i been couging up..And it still hasnt stopped...Doesnt make any sense to me...But like i said i can only hope for the best

[Sangye]

Hi Balloflife, it doesn't sound like you have a Wegs specialist but rather a regular rheumatologist. A Wegs specialist would not let you cough up blood for 8 months without discovering why. Waiting another 1.5 weeks for a bronchoscopy is not reasonable. It should be done in the next couple days. Pulmonary hemorrhage is an emergency.

[pberggren1]

Ballfolife:

Where are you from? Do you go to a major Vasculitis clinic? The reason I ask it that a wegs specialist would have done something about the coughing up of blood a long time ago. I didn't have a Wegs specialist until about 2 months ago and it cost me dearly. I have been coughing up blood for about 8 months now and my previous Rheumy just did nothing. Then I came across my wegs specialist and he got to the bottom of it right away.

[Jack]

You are describing all the symptoms of a flare and if Cyclophosphamide is not working for you then the dose needs increasing or you need a change of medication. Also, your dose of Pred seems to be very low for someone still at your stage.
You need the treatment of a specialist urgently before a lot of serious and permanent damage is done. I had similar symptoms and lost my kidneys!

[JanW]

I agree with Sangye, Jack and Phil. It sounds as though your doctor is talking about trying rituximab, based on what you said about it being expensive and dosing. Not every doc knows how to secure this quickly depending on the patient's insurance, but wegs specialists certainly do. Obviously your WG is flaring and you already know, quite rightly, that you can't remain on ctx for very long. Maybe if you tell us where you are located, we could tell you what center you are closest to -- there are centers in Boston, Rochester, MN, Baltimore and Cleveland, and new ones getting started up at the University of Utah and Cedars-Sinai in LA.

[ballfolife23]

i understand your guys concern..I reside in Brantford, Ontario, Canada...

honestly im scared as hell man...What you guys are sayin is prolly true and just made me more frightened..Ive tried my best to consult ith my doctor to give me an appnt asap but they keep on delaying me..delaying me..till the point i'll prolly be dead...like i dont no what to do...I dont no who to talk to ...Yday it got worse cuz i was bleeding from both my nostrils..usually its just the one on the left..but this time it was both...I dont know wtf im suppose to do..If i got ER there just gonna tell me its part of my active wegeners and it'll heal on its own...quite frankly i dont know what to do..im getting very ansy and annoyed that the doctors will not cooperate or listen to me what so ever

[elephant]

ballfolife, call the Vaculitis foundation in canada....Can you call another doctor and ask for help? Your GP? Kidney doctor? Lung doctor? Keep pestering....I wish I could help you more!!! Please keep us updated.

[ballfolife23]

I called Mount Sinai or wtvr it is...they say i need a referral from my doctor..i dont think my doctor will give him the referall cuz i sort of spazzed out at him on the phone earlier today..but i had no choice..hes effing with my life right now..he told me that he can't get my bronch sooner than 2 weeks becuz tehres other ppl who need help...he said that there sick as you..there not losers.im like..well i been coughin up blood for past 8 MONTHS...i dont know...im probably gonna try to get admitted in to emergency and hopefully they'll refer me there...but im waitin on my bronch which happens next week...U guys think i shud wait till nex thursday see wht happens.or what? excuse me for my language btw im just really frustrated

[elephant]

You need to go to the ER and be persistent...I know this is hard and frustrating...but try to calmly tell them what's been going on and how you are feeling and that you need work up done.

[Lightwarrior]

You need to go to the ER and be persistent...I know this is hard and frustrating...but try to calmly tell them what's been going on and how you are feeling and that you need work up done.

I agree with Elephant. Write down all your symptons before you go. Couging up blood for 8 months, bloody noses, fatigue etc. Tell them you are scared, remain as calm as you can but please go quickly.

[Ashley]

You need to see someone ASAP. I've been seeing Dr.Carette at Mount Sinai for 8 years and he is amazing. You should not have to wait over 2 weeks for the bronchoscope...that is not acceptable. Whenever I have needed them due to flaring my doctor has had them booked within 1-2 days.

If I was you I would go to the ER at either Mount Sinai or Toronto Western Hospital. Dr.Carette works out of both facilities and if you can get admitted through the ER you have the greatest chance of getting to see him sooner. It sounds like you need to see him sooner rather than later. If you do get admitted be persistant with the ER docs that you have WG and want to see Dr.Carette as he is a WG specialist. I'm not sure when you plan on going but on Wednesdays he is for sure at Mount Sinai as he runs a clinic there every Wednesday. Also, once you are admitted through the ER you should be able to get all testing done quicker as an inpatient versus an outpatient. If I was you I would not wait and would go to the ER now.

[ballfolife23]

K well this is the update so far
Yday morning i woke up roun 6 am.had a headache.blew my nose and te tissue was all blooody...\This time i had enough and i called my specialist he had me admitted into the E.R..later on i was admitted to the hospital to stay overnight to go thru further testing and analyist

I had some blood work drawn..chest x rays..everything came out normal...everything..So my doctor said that it isnt the wegeners that's flaring up...But the son of a bitch wouldn't give me a bronch cuz he wants one of his colleageus to do it cuz he feels he can trust him better...thus far making me being delayed for another week...But good thing is that everything came out good...i find out nex week when i go thru the bronch wether my lungs are bleeding or not...

Seriously considering changing docs..only fear i have is that if i switch docs my new doc will do the same bullshit my previous doc was doin to me..e.g consantly delaying me...

hope everything goes well for me...i got discharged 2day so im glad to be home

[Lightwarrior]

Did they do a chest CT?? I have had "normal" x-rays and the CT showed much more. Go straight back to the ED if you start coughing up blood. Your doctor may be afraid to bronch you if he is not skilled at bronchs because the risk of perferating (putting a hole in) your lungs is high.

[elephant]

I agree with lightwarrior, you need a CT. This is crazy that this doctor is waiting to see if your bleeding in the lungs? I think Lightwarrior is right.

[Sangye]

My x-rays never look that bad but chest CT's look disastrous when my lungs are bleeding.

Last summer when my lungs were bleeding and the bronch didn't show huge amounts of blood, the pulmy said it wasn't pulm hemorrhage, not Wegs flaring. He said there would be much more blood. When Dr Seo heard this, he said it was ridiculous, that if someone with a known history of pulm hemorrhage is coughing up blood then it's Wegs.

[Doug]

Did they do a chest CT?? I have had "normal" x-rays and the CT showed much more. Go straight back to the ED if you start coughing up blood. Your doctor may be afraid to bronch you if he is not skilled at bronchs because the risk of perferating (putting a hole in) your lungs is high.

Exactly the same with me. Different things show up with different technologies. Though lifetime radiation exposure is an issue, I think most doctors will order up the next level of testing when a patient's issues continue but there is nothing in the tests to support the symptom (spitting up blood!).

[ballfolife23]

Uhhhhhh so pissed...now i guess i gotta request a chest ct...I dont even know whats going on man..fml...I mean i feel great...no joint pain...no red eyes..no shortness of breath...i have a good appetite...the doctors such as the ENT said the blood from my nose is due to dryness so he prescribed me some nasal gell and i mean its worked ...iunno
i just wish you know that this **** would go away...I dont know what im gonna do

[elephant]

Ballfoflife it is best to get the CT scan. Sure you could be coughing up post nasal drip blood, but you just don't know. I use to use the nasal gel at night and it seemed to work. Then I did nasal rinses morning and night. Thanks for keeping us update! Big hug to you.

[ballfolife23]

@Sangye
Correct me if im wrong ..so your saying that the bronch showed that you weren't bleeding from the lungs?? And it wasn't pulmonary hemmorage or flare up of the wegs??If its niether of the two than why were you coughin up blood?? :/...And wht did u do to stop the coughing of the blood?

And @Elephant thanks a lot eh..means a lot ...No one really understands our struggle..Its not easy bein in our shoes..I know its tough but im sure we all will get through this :)

[Sangye]

The bronch showed some blood in my lungs, but not lots of it. The pulmy said if my lungs were bleeding there would be lots of blood. That was ridiculous. My lungs were not massively hemorrhaging, but any pulmonary hemorrhage is Wegs. Dr Seo put me on ctx and later rtx. Ctx doesn't work for me.

[Jack]

Coughing up blood and a bleeding nose say Wegener's to me and we all know how unreliable the blood tests are. That is why the disease is so difficult to diagnose.

[pberggren1]

Well, I am coughing up blood and still have a bloody nose and it is not Wegs.

[ballfolife23]

What is it for you than man?!?!?...Sinus??...Gonna find out friday what it is for me..

[pberggren1]

What is it for you than man?!?!?...Sinus??...Gonna find out friday what it is for me..

Mine is a rare lung disease called Mycobacterium Abscessus.

[elephant]

Do the doctors know how you got it?

[pberggren1]

Do the doctors know how you got it?

They are not really sure but it is in drinking water supplies, especially surface water. So I guess being immuno supressed I was just more susceptible than most people.