Florinef & Nose Bleeds?

[MightyMouse]

Hi everyone, I've been having nosebleeds about once a week now for a month. The only thing new for me has been the addition of florinef to my daily routine. Friday night I had a terrible bleed that lasted 3 hours. We're on holiday in Mexico, and Teri ended up taking a 60$ cab ride to get some Afrin nose spray for me, which finally stopped the bleeding, and save me a trip to an foreign ER that wouldn't be covered by my insurance. (er, next trip, I'm buying travel insurance!). I will be going to my ENT doc when I return home, but wondering if my meds might have provoked the new nose behavior?

Nina

[mkoven]

Interesting question. I know that prednisone and other gluco-corticoids (sp??) can thin out tissues. Florinef is supposed to be a different type of beast, but maybe a similar effect for you? Have you noticed anything else? Thinner skin anywhere? When I've taken nasonex, so an inhaled nasal steroid spray for allergies, it does feel like my nose bleeds more, but then that's applied right to those tissues. It sounds plausible. In the interim, I'd keep your nose moist. Can you use a neti pot with some saline, till you figure out the florinef connection?

[flop]

I have had longstanding problems with nose-bleeds. I had a really serious one the other year and ended up having 6 units of blood transfusions. When I went to A&E (ER) my nose wasn't actually bleeding at the time and they didn't check my bloods (I had lost a LOT of blood) but I did ge yelled at by the doctor for being on Florinef - he said that it had raised my diastolic pressure too much and that my BP (120/105) was the cause of the bleeds, he told me to stop the florinef immediately.

I did as I was told but the next day felt dreadful - lightheaded, dizzy, tachycardic, breathless. I managed to see my cardiologist that day and he told me to go back on the florinef right away. He said my symptoms were caused by low BP and severe anaemia (Hb had dropped from 13.8 to 8.2 g/dL).

I carried on having lots of nose bleeds and saw an ENT surgeon. He took me off my steroid nasal spray and has told me not to use topical nasal steroids again. He wasn't bothered about the florinef as a steroid but wanted me to occasionally check my BP to make sure it wasn't too high as that might trigger a bleed.

After about 6 cauterisations I agreed to have surgery on my nose (septoplasty and sub-mucous diathermy + antral washouts). This fixed the problem for about 4 months but now I am back to daily minor nose bleeds.

When I saw Prof Grahame and was diagnosed with Ehlers-Danlos syndrome I asked about the nose bleeds (I bleed and bruise very easily) and he said that capillary fragility was part of EDS and the likely cause of the nose bleeds.

I hope your nose behaves itself for the rest of the trip and you can see your ENT doc when you get back home. Maybe having it cauterised will do the trick.

Flop

[corina]

oh nina, i am sorry this happened to you!!!!!!!!!!!!!!

i have only had nose bleedings during both my pregnancies, had to go to the er late at night because it didn't stop after hours and hours. as i had low bp's during the pregnancies, i think it had to do with increased blood volume. my doc was very worried at first because he thought of something serious (can't remember of course what that was )but after a specific test it came out that i didn't have that.

when i was on florinef my supine bp shot ups so high that i couldn't stay supine during the night and had to stand. i kept so much fluids in a very short time, that i had to stop taking it. it didn't give me nose bleedings.

hope this helps a bit and do hope that you will be able to enjoy the rest of your stay!!!

take care,

corina

oh, btw, isn't travel insurance much cheaper than teri's trip with the cab????? i am glad she took good care of you!!!

[MightyMouse]

I had another bleed today that lasted about a half hour. It's kind of frightening to see that much bright red blood come gushing out of my face! It's difficult to get me to be flustered, but the other night I was very frightened. I probably could have used a transfusion after 3 hours of bleeding; in fact, I've been dizzier than usual ever since, and more easily exhausted.

thanks for the input. I'm thinking i'm in for some minor nasal surgery again soon... as for nasal steroids, I'm on flonase, but that's been in my regimen for a long, long time, so I find it hard to believe that's the trigger.

Love, dizzy and tired but happy to be in mexico nina

[flop]

Hi Nina,

I'm sure you know all the tricks for stopping nose bleeds but here's a quick reminder:

- sit down

- breathe through your mouth

- tip head forwards (putting head back makes the blood run down the back of your throat - yuck!)

- squeeze the soft fleshy part of your nose (lots of people say squeeze the boney bridge - that won't help)

- keep the pressure on your nose for at least 10 minutes before gently letting go to see if it has stopped bleeding

- if it is still bleeding squeeze again for 20 mins before checking again

- applying ice in a bag to the bridge of your nose or the back of your neck may help

Once it has stopped:

- gently clean any mess on your face with cool damp tissue

- do not try to clean the nostrils

- do not rub your nose

- do not blow your nose

- avoid hot drinks

- sit quietly

Flonase - nasal steroid sprays rarely cause a problem immediately (unless you poke your nose with the sprayer!) but use for many years can cause thinning of the delicate membranes linning the nose and increase the risk of nose bleeds. I had used nasal steroids every summer for many years but my ENT doc has banned me from using them ever again. I now use a sodium cromoglycate nasal spray which doesn't have any steroid but seems to work as well for my allergies.

If you are awake and are pinching your nose you shouldn't loose too much blood even if the bleeding takes a long time to stop. My disaster nosebleed was such a problem as I was asleep (luckily lying on my front) and it just bled and bled - I soaked 2 pillows with blood! Stupidly woke up, took pillows out to the dustbin, changed the bedding and went back to bed. Tried to go to work the next day - got sent to the ER by my boss as nose was still bleeding on and off (you do do some daft things when you are ill).

Hope everything settles down so you can enjoy Mexico.

Flop

[yogini]

Hi Nina,

I got nosebleeds every week or two while I was on florinef. I don't have EDS, so I'm pretty sure it was related to florinef, since I haven't had any bleeds since I stopped (3 years ago). I think someone posted before about florinef causing small blood vessels to rupture. I would check with your dr when you get home - to make sure it's the right med and dosage for you.

Enjoy the rest of your time in Mexico. I was in Cozumel last week and we had two really cold days - 75 degrees - good for POTS, but too cold for the beach...

-Rita

[MightyMouse]

Hi guys--Flop, I did all those things... Teri, being a former EMT, takes good care of me, but double checked her suggestions by looking them up online.

Maybe it is the flonase? or the combo of flonase and florinef--and probably weakened the walls of the arteries in the weeks before we got the florinef dose right, and my bp was SOARING. Now I'm on an eighth of a .1 mg tablet... my doctor jokes that I'm living on crumbs! I'll see a doc for my nose when I get home.

thanks guys/gals.

Nina

[flop]

I think you just diagnosed yourself there Miss Mouse - soaring BP may well have weakened one of the small blood vessels in your nose (I had forgotten about your sky high BP and Teri's training - oh well if anyone didn't know how to sort a nose bleed they can read all about it). If that is the problem then getting it cauterised will probably stop the bleeds.

You mentioned Afrin nose spray - I've never heard of that. Perhaps when you've finished your holiday you might like to let me in on the magic spray. I still have daily nose bleeds so if it is available in the UK it would be another trick to have up my sleeve to sort my snozzle!

Take care,

Flop

[juliegee]

I'm sort of late jumping in here, but I was also going to ask if your BP could have been up, THAT definately can cause a nosebleed. Nina, my son has suffered terribly with these periodically. He's also endured several cauterizations and trips to the ER. I know how scary a severe nosebleed can be. Hopefully by now you've been able to check things out.

I do have a "hasn't-failed-yet" tip on stopping a nosebleed. It's one of those weird Eastern things. But, it really works like nothing else. A strange practitioner of osteopathic manipulation, that Dr. Rowe insisted my son see, taught us this trick. Squeeze the top knuckle (closest to the nail) on your pinky finger- firmly until the bleed stops. It works.

Let us know what you find out.

Julie

[MightyMouse]

Julie, that's kind of funny--i do that finger nail squeeze when I have terrible back pain b/c the pain receptors to the finger have a shorter tip to the brain than the nerves in the back.

As for Afrin, it's similar to other nose sprays like Dristan, which cause vasoconstriction locally.

Nina

[juliegee]

Not the fingernail- the knuckle right below. Some affix a rubberband there, but I've always squeezed Mack's finger myself. Prevented many a trip to the ER. Swear!

Julie