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

  1. #11
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    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.

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    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.

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    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!
    Jack

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    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.

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    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

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    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.

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    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

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    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.

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    Quote Originally Posted by elephant View Post
    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.

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    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.

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