Nosebleed advice?

I have had ITP that has been responsive to relatively low doses of prednisone since 2000. My hematologist's aim has been to keep me above 25K, and although I would bruise easily, I had no symptoms that were bothersome, even when my platelets would fall into the single digits.

In the past two years, however, I have had unpredictable nosebleeds, and at least two of those occurred when my platelets were in the 30s. Sometimes the nosebleeds have been "logical"---once I had a bad cold and was in a dry area, and I had several nosebleeds within a few agonizing days. Sometimes I have no idea what brings on the bleeds. Twice I have had to go to ER and have my nose packed, and that is a really dreadful experience, as some of you know.

I have practiced "good nose care" religiously--steaming my nose, especially in dry places. (I take my little steamer with me on trips!) I use gel in my nostrils every night; gel sprays in my nostrils in the day. I never blow my nose hard--in fact, often I'm afraid to blow it at all. I always sneeze with my mouth open. (The ENT doc gave me a lot of this advice.)

And yet, despite all this good care and with my platelets at 39K this week, I had a big nosebleed. I managed to get it stopped after 1-1/2 hours. 39K represents a big drop for me right now--a knee replacement had given me 4 months of normal platelets, and they didn't start falling till this month. My hema has decided maybe we should keep me above 50K instead of above 25K, and my pred nose went from 3 mg/day to 10 mg/day the day of the nosebleed.

Does anyone have any ideas or advice about this situation? It is unnerving to never know if a nosebleed is going to disrupt one's life! I am 72. My health is good except for arthritis. I eat what would be considered a healthy diet by most--little meat, lots of vegetables, whole grains, fish, skim dairy, fruits--and chocolate!

I have some advice for other nosebleed sufferers: I have a nosebleed kit that I carry with me, and that has been invaluable. It contains noseplugs (swimmers' sort)--which are very useful because they allow a nosebleeder to stop pressing on his nose long enough to do other necessary things. My kit also contains Afrin or generic decongestant spray, which, if one can get it into a bleeding nose, helps constrict the capillaries. I also have a "Blood Stop" product, which is quite expensive, that I got at a local drugstore. It consists of little hemostatic gauze squares which one can roll up and put in one's nose, pressing. A gel that has a cauterizing effect apparently is released. I used this for the first time in this last nosebleed, when the nosebleed was starting to diminish, and I think it helped. I think my little kit saved me a trip to ER and a nosepacking.

Any input would be appreciated.

Karen - when did you see the ENT last? Maybe you need a vessel cauterized.

These are great tips, thanks for sharing them - Erica

Sandi, I saw an ENT last summer--actually I saw two, the one who removed my packing and another one, with whom I had an appointment to figure out what could be wrong. That one saw petichiae in my nose. The nosepacking cauterizes the whole nostril, I think.

Do you mean that I might have a faulty vessel that one could cauterize without packing? Could an ENT just look into my nostrils and tell? I don't think the nosebleeds have always been from the same side.

I had a brother that got nosebleeds all the time and they cauterized specific vessels in his nose 20yrs ago. So I think that can be done....

My daughter has bad nosebleeds on occasion, even in remission from ITP. (I'm guessing it's inherited. Her dad had them often as a young man, until he had a vessel cauterized.) In addition to the things you mentioned, I would add a bottled water and a roll of paper towels. (We had Afrin in every car, the house, my purse, her bookbag, ...) The blood stop product will only work if your bleed originates in a spot you can reach with the stuff. (Daughter's was too far retro, so the nosebleed sticks with the same substance would not reach her bleeds.) We also found that a good dose of daily vitamin C helped the integrity of vessels, lessening her nosebleeds, bruises, and petechiae. (It did nothing for the count, just the vessels.) If you haven't seen an ENT lately, or maybe want a new perspective, you might get another ENT to consult and advise. Also, is your blood pressure under good control? You might get one of the automatic BP cuffs and take a read at various times of the day for a short period, making a log. You may be spiking at times and not realize it. Those bleeds are horrible events that happen at the worst times. I hope you get it under control soon. Good luck.
Norma

Karen - since having nosebleeds like that is unusual for you at that count, looking into another reason couldn't hurt. Most of the time, recurrent nosebleeds mean that a vessel is faulty and that happens all the time in people without ITP. Couldn't hurt to see the ENT since it's been about 9 months. Things can change in that time.

Thank you, friends, for helpful input and advice. I will get my doc to refer me to another ENT.

Norma, I usually have very low blood pressure, but if a nosebleed happens again (I'm not going to say WHEN it happens again), I'll check my BP on my home machine. That's a good idea.

Once the nosebleed happens, your BP WILL be up, because you are dealing with the stress of the nosebleeds. My thought was to sort of track the BP and see if there is a time of day or circumstances in which your usually low BP is up. Mine is usually low, but there is a time in late morning when it is sometimes elevated. I know this only because it's been up on some late morning doctor visits. I think mine is probably related to morning caffeine and the office chaos. (Bet it doesn't happen when I'm on vacation, but I've never checked to see.) For some reason, my daughter's bleeds are usually between dinner and bedtime. Husband's were almost always right after work. If you log the BP or log the nosebleeds, or both, there may be a clue for your ENT, or at least rule out the BP as a cause. BTW, the water and paper towels I suggested were for the car. We always seemed to have one in the car without being prepared. I have dashed into a gas station too many times.
Norma

Norma, how much vitamin C have you found to be helpful? I'll start monitoring my blood pressure at different times of the day. Thanks for the pointers.

I don't recall if vitamin C is in mg or IU, but the capsules were 500 and I gave her 2 per day. You may need less if your diet has much C. Vitamin C can cause loose stool if you get too much, but if that happens you just cut back on the dose. We used a time release capsule made by Nature's Bounty, which I could then only find at BiLo grocers in our area. The chewable tablets are more common, but can be a bit tart and powdery, so unpalatable to take.
Norma