Question 1

how can i cure paroxysmal nocturnal hemoglobinuria?

Accepted Answer

You can not cure it!: PNH is a genetic disease and can not be cured. it is a chronic condition and the treatment depends on the presentation, if you have anemia, you may need blood transfusion and iron therapy. If you have blood clots you may need blood thinners. For prevention of the attacks you can be treated by an IV antibody Ecuzilumab to prevent destruction of your red blood cells!

Question 2

how to diagnose paroxysmal nocturnal hemoglobinuria??

Accepted Answer

Blood test and hx: Most important is the history of blood in the morning on urination for no apparent reason. Other causes of blood in urine must be ruled out. Sometimes blood may be so small or dilute that urine is not red but may just appear dark. A family history or relative with PNH is also helpful but not necessary. Finally a blood test that will test for PNH must be abnormal. Is there a concern for PNH?

Question 3

how can i treat paroxysmal nocturnal hemoglobinuria fast?

Accepted Answer

No easy fix: Anyone telling you otherwise is deceiving you. This is a lifelong health problem though the severity between cases is widely variable. Your physician will guide you if you need transfusion, anticoagulation and/or eculizumab.

Question 4

paroxysmal nocturnal hemoglobinuria: are there many symptoms?

Accepted Answer

Not always: You may not even have abnormally-colored urine in the mornings. Or you may develop anemia or have deep vein thrombi and their complications. If you have pnh, this is a management problem for you with your hematologist, and you'll do best to learn as much as you can about it.

Question 5

waking up breathless once every week or two. not sure whats wrong. how often is shortness of breath seen in patients with paroxysmal nocturnal dyspnea?

Accepted Answer

Waking up breathless: PND is a specific symptom complex indicative of very bad illness, not all nocturnal breathlessness is PND ;this has to be evaluated promptly as to cause.

Question 6

when i sleep on my back (&only then) i awaken gasping for air for a few seconds only. doc doesn't think sleep apnea. is this consistent with nocturnal paroxysmal dyspnea despite the fact that i regain my breath so quickly & it only occurs on my back?

Accepted Answer

Apnea: Have you had a sleep study?  If there is concern for sleep apnea this test should be performed.

Question 7

have obst. sleep apnea but occasionally shoot bolt upright gasping for air during sleep. lasts only a second or two & then totally normal breathing. nt pro bnp 11 pg/ml, no exertional dyspnea or orthopnea. paroxysmal nocturnal dyspnea or just apnea?

Accepted Answer

: What you describe is NOT paroxysmal nocturnal dyspnea which is often due to heart failure and tends to lasted much much longer than two seconds. I am curious to know why you think it lasted only two seconds if you were awakened from sleep.

Question 8

paroxymal nocturnal hemaglobinuia means what?

Accepted Answer

It is a disease ...: It is rare type of blood disorder where the red blood cells(rbc) are not healthy and are prone to intermittent hemolysis(breakdown of rbcs). It often shows up as dark(brown) colored urine especailly when you wake after nights sleep

Question 9

what are symptoms of paroxymal nocturnal dyspnea and can you die from it?

Accepted Answer

PND: Is the need to suddenly sit up due to shortness of breath after being asleep or lying down for a while.  It can be a symptom of decompensated heart failure.  If PND is truly happening, you should get your physician involved or go to an emergency room.

Question 10

i am feeling persistent dyspnoea from last 1 year.... what can be the reason?

Accepted Answer

See a doctor: Dyspnea can be from a lung problem but also can be from nasal congestion, see your doctor and get evaluated to determine the cause.

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Doctor answers about:

Paroxysmal nocturnal dyspnoea

A member asked:

How can i cure paroxysmal nocturnal hemoglobinuria?

A member asked:

How to diagnose paroxysmal nocturnal hemoglobinuria??

A member asked:

How can i treat paroxysmal nocturnal hemoglobinuria fast?

A member asked:

Paroxysmal nocturnal hemoglobinuria: are there many symptoms?

A member asked:

Waking up breathless once every week or two. not sure whats wrong. how often is shortness of breath seen in patients with paroxysmal nocturnal dyspnea?

A member asked:

When i sleep on my back (&only then) i awaken gasping for air for a few seconds only. doc doesn't think sleep apnea. is this consistent with nocturnal paroxysmal dyspnea despite the fact that i regain my breath so quickly & it only occurs on my back?

A member asked:

Have obst. sleep apnea but occasionally shoot bolt upright gasping for air during sleep. lasts only a second or two & then totally normal breathing. nt pro bnp 11 pg/ml, no exertional dyspnea or orthopnea. paroxysmal nocturnal dyspnea or just apnea?

A member asked:

Paroxymal nocturnal hemaglobinuia means what?

A member asked:

What are symptoms of paroxymal nocturnal dyspnea and can you die from it?

A member asked:

I am feeling persistent dyspnoea from last 1 year.... what can be the reason?

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