DDAVP Please help! - Donna, Jeff or anyone?

[Guest guest]

hi Mel;

I have had DDAVP for about 3 years now. I have blood vessel fragility

plus it was discovered I have a platelet dysfunction which also causes

my bleeding. I have features of classical, hypermobility and vascular

types. I was concerned about the refrigeration issue so I got the nose

spray one instead. Fine, as long as I don't have a severe nose bleed! I

have used it a few times in the last couple of months

- It needs to be refrigerated and I need to carry it with me. Any

suggestions? I will have to carry 2 needles, 5 vials. The obvious choice

is a mini cooler with a mini freezer pack. This will not last that long

though, what about extended periods? The most convenient is something

that will fit in my purse. But what about the summer? Those mini

icepacks don't last long, especially in the heat.

>That is exactly what I would use. You may be able to get loose ice at a

restaurant or gas station if the pack doesn't stay cold. Only problem with this

is you need to keep the DDAVP and ice/ icepacks well separated so the DDAVP

doesn't ACCIDENTALLY FREEZE. If it thawed it's constituents might not be the

same and it may not funciton properly if you needed and injection. Wrapping the

DDAVP in a facecloth or hand towel then some bubble wrap may be enough to allow

it to be cool but not frozen.

I have a pencil case to carry the DDAVP, Epinephrine, Benadryl,

syringes, commonly used meds... It is a firm canvas one, a new style out

this year. When laid flat, the top has a velcro fasten and a double

zipper that when pulled opens the entire top of the case so no more

rummaging for what you wantr. You can see it all easily. I have another

one for my inhalers. I got it at Shopper's drug mart for about $3

- I have to carry 2 needles and 5 vials!!!!!!!!! Does this not seem

dumb? Each vial contains 1ml and 4micrograms. The dose that has been

recommended for any emergency bleeding is 20 micrograms - therefore I

need 5 vials or 5mls! This cannot be given in 1 injection as 5ml is too

PLease double check the dosing with your pharmacist or doc. It seems odd

as you say. I would not want to be drawing up meds from several vials in

an emergency situation. Just for comparison, my nasal spray is

10microgram dose per spray so it would only take two sprays to get the

needed dose. This is a small vial, has 25 doses in it (a dose can be as

small as 10 micrograms) and best of all it only needs to be kept at room

temp. This vial is much cheaper than the injectable as you escribe the

doses. It may have beeb around $50 too, I don't remember but it has as

many as 25 single doses in it! Thats a lot of bleeding episodes for your

50 bucks!

Since you have the other one, it may be useful to keep that in the

fridge at home and only take it if you are going far from home (if

nosebleeds are a problem) and carry the nose one around the rest of the

time. I know it is more money but the nasal one may suit you better and

it is a lot eaasier to carry around. The vial has the nasal squirter on

top and that's it. Everything is in one unit and stored at room temp.

Hope this helps

Hugs,

Joyce

p.S. Thanks for your lovely Christmas card. It arrived today!