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Betty should you be taking Aspirin? Well I hate

heaters and if it happens to have to be on for others

I keep my window open a bit. I tried the Vicks last

night but it bled anyway. Today it has slowed down,

but is lighter in color too though. My son said it

kind of looks like one of those red pencils.

Carol don't you hate it when you know you had

something and when you ask about it they all look at

you like you have lost your mind. Well maybe I

have..lol..but I still know I had things, and no

longer have them when go to looking for them.

About the Hep C and nosebleeds I know I read

somewhere that is one of the symptoms. Before I was

daignosed I was having very bad nosebleeds daily. I

had to go to the ER and that is were they packed it.

My BP was 52/26, triage nurse said why it took so long

to get a reading is that it thought I was dead. I

like them they were funny and it didn't hurt to much

for the Dr to look like Jim Belushi. Told me he was

mixing some cocaine up to squirt into my nose, was

supposedly to numb it but it didn't. Just felt it

burning as it went down the back of my throat. If I

see it somewhere again I will make note of it and let

you know.

Connie

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I just got back fom my family christmas

get-together. My family puts the D in dysfunction!!! But they make me

laugh and I needed that :-)

I get nosebleeds also. I put vaseline on a q-tip and apply it inside my

nostrils at night. During the day I use a saline nose spray. the only

problem is remembering to do it......

I hope everyone has a wonderful christmas and a very happy new

year......

hugs,

Judy

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Judy, that's a great idea...putting some vaseline in your nostrils,

now that's something I already have at home here, will try it

tonight. LOL about your D family. Glad you got some laffs.

Merry Christmas

Carol

jcmmo@... wrote:

>

> I just got back fom my family christmas

> get-together. My family puts the D in dysfunction!!! But they make me

> laugh and I needed that :-)

> I get nosebleeds also. I put vaseline on a q-tip and apply it inside my

> nostrils at night. During the day I use a saline nose spray. the only

> problem is remembering to do it......

> I hope everyone has a wonderful christmas and a very happy new

> year......

>

> hugs,

> Judy

>

>

>

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Hi all,

Nose bleeds are usually due to a small ulcer at the back of the nasal mucosa.

The abnormal

coagulation profile in liver disease makes the bleed more spontaneous or severe.

However HCV is not predisposing you to nose bleeds, it is just that they become

more noticeable.

It is best to keep the nasal mucosa moist, with humidification, saline drops and

glycerine or any

lubricant. Dont use decongestent nasal drops which contain ephedrine for they

make the bleeding

worse or steroid nasal sprays either.You can also use a local antibiotic

ointment( like

tetracycline) which you use for eyes or skin.

Best is to hold your head back and pinch your nose tight and not panic.

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Hey Doc, I never had a problem with nosebleeds. But now that I am off

treatment, I've gotten several which seem to come out of nowhere. My cbcs

are fine and have never had abnormal PTs. What's your guess??? Thanks, mzgee

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Hey Doc, I never had a problem with nosebleeds. But now that I am off

treatment, I've gotten several which seem to come out of nowhere. My cbcs

are fine and have never had abnormal PTs. What's your guess??? Thanks, mzgee

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Hey Doc, I never had a problem with nosebleeds. But now that I am off

treatment, I've gotten several which seem to come out of nowhere. My cbcs

are fine and have never had abnormal PTs. What's your guess??? Thanks, mzgee

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Hey Doc, I never had a problem with nosebleeds. But now that I am off

treatment, I've gotten several which seem to come out of nowhere. My cbcs

are fine and have never had abnormal PTs. What's your guess??? Thanks, mzgee

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Just as a thought.......is everybody keeping track of their blood pressure.

Mine went berserk on treatment and I had nosebleeds all the time. Now, that

my blood pressure has calmed down, the nose bleeds still occur, but not

nearly as often. Hope this helps.

Anne

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Just as a thought.......is everybody keeping track of their blood pressure.

Mine went berserk on treatment and I had nosebleeds all the time. Now, that

my blood pressure has calmed down, the nose bleeds still occur, but not

nearly as often. Hope this helps.

Anne

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Just as a thought.......is everybody keeping track of their blood pressure.

Mine went berserk on treatment and I had nosebleeds all the time. Now, that

my blood pressure has calmed down, the nose bleeds still occur, but not

nearly as often. Hope this helps.

Anne

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Just as a thought.......is everybody keeping track of their blood pressure.

Mine went berserk on treatment and I had nosebleeds all the time. Now, that

my blood pressure has calmed down, the nose bleeds still occur, but not

nearly as often. Hope this helps.

Anne

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My blood pressure went up on treatment and caused me a lot of migraines. I

had a few nosebleeds, nothing dramatic. I used a saline solution to spray in

my nose for moisture. Stopped after treatment. If your nosebleeds are too

bothersome, or you have any doubts, best to let your doc know, k?

alley

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  • 2 years later...

Sam has occasionally had one or two nosebleeds the day of or day after his

IVIG that may be related to the treatment, but the only time he has had

daily (actually, usually nightly) nosebleeds was when he had a sinus

infection that had really set in and was extremely tough to beat. It took

months to kick it, meanwhile I would wake up and find blood on his sheets

and pillow every day. Very frightening. It was at that point that he was

put on daily meds - Zyrtec, Singulair, Hydroxyzine and

Amox/Septra-switched monthly. (He's also on anti-seizure med, Carbatrol)

Now when it looks like a problem is starting to crop up, we have Bactroban

cream on hand. Usually just a few applications clears it up.

I hope you find some answers. I remember how frightening it was to see my

son bleeding so often.

God bless,

Wenoka

At 06:25 AM 08/10/2004 -0400, you wrote:

> Hi Everyone

> My son Mike -IgG def- had his infusion last Fri. Had a terrible reaction-

>sick, headach, seizures (usual for him but these were very bad). reaction

>lasted a couple of days and he seems ok now but very tired and still has

>headach,. However he is having nosebleeds- daily a couple on some days.

>Never had nosebleeds before except when on a seizure med which really

>messed up his platelets. Spoke with doc who thinks it is just warm weather

>but we live on east coast of canada- air is not dry here. Same IVIG, same

>dose, same rate.

> Has anyone experienced this. Am I worrying needlessly.

> Faye

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from Dale, Mom to Katy, CVID, age 20

Faye, you or the doctor needs to contact the manufacturer to report the

adverse reaction. And I would certainly slow the next one down. Katy

hasn't had seizures from IVIG, but sometimes the headaches are more

severe than usual. In fact, I would like to know what product you are

using because Katy seemed to have had a more severe headache this time

and lasted longer.

I've found that in most circumstances, what we call " needless worry " may

be God's message that there is something we need to take care of. And

once we've done everything we can, He asks us to have faith in Him

instead of worry.

In His service,

Dale

>Has anyone experienced this. Am I worrying needlessly.

>Faye

>

>

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Hi Dale

We use Gamimune usually- Mike has done really well with Gamimune. Three times he

was given Gammagard and had terrible reactions- just like the reaction this

month so we never use gamagard now however we are in canada and all blood

products are distributed by Canadian blood services and when it gets to us it is

only labeled IVIG-and manufacturers name- not specific brand. We know he did not

get GG but he may have been given Gaminex or Gaminune- we are now checking with

the lab to find out exactly what he got. I do have all lot numbers and they are

similar to previous numbers. I'm pretty sure he got Gamunex and this sort of

scares me since it replaces gamimune which he has done so well with. If he

reacts this way to gaminex and can't take GG and gamimune is not available- what

should we try next- Advice welcome here. Our lab has said they would report the

reaction.Thanks for your reply Dale.

Faye

> From: Dale Weatherford <dale@...>

> Date: 2004/08/10 Tue PM 01:40:54 EST

>

> Subject: Re: Nose bleeds

>

>

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from Dale, Mom to Katy, CVID, age 20

Faye, the only thing more that I could suggest is that if they indeed

switched products without warning you -- shame on them!!! The initial

protocol for changing to a different product is SLOWER, SLOWER, SLOWER.

The body has to adjust to the new " flavor " and might need it run

slower than the previous product. That's not to say that someday you

can run it at the current speed, but the initial doses should be slowed

down. The recommendations for Gamunex taken right off the label insert

says: It is recommended that GAMUNEX should initially be infused at a

rate of 0.01 mL/kg per minute (1 mg/kg per minute) for the first 30

minutes. If well-tolerated, the rate may be gradually increased to a

maximum of 0.08 mL/kg per minute (8 mg/kg per minute). If side effects

occur, the rate may be reduced, or the infusion interrupted until

symptoms subside.

That's why it's absolutely essential that our kids not be bumped from

product to product. There's too much variation between products. Call

the IDF office at 1-800 -296-4433 for a complete list of products

available - or it might be on the IDF website. They recently produced a

nice chart showing the variations in each product. Each one is slightly

different from the others because we're all different and need different

things.

Hopefully, they'll get this worked out. Makes it hard to look forward

to the next one, I know!!!!

In His service,

Dale

rhmtce@... wrote:

>Hi Dale

>I'm pretty sure he got Gamunex and this sort of scares me since it replaces

gamimune which he has done so well with. If he reacts this way to gaminex and

can't take GG and gamimune is not available- what should we try next- Advice

welcome here. Our lab has said they would report the reaction.

>

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hI DALE

We already run Mike's infusions very slow. He weighs 25 kilo and we are only

able to get to 50 ml/hr before he gets very shaky, starts seizuring and c/o of

headache. Now that said he does get a very large dose- 2gm/kilo- as he gets IVIG

for immune issues as well as seizures- dose for seizure tx is high so we infuse

over two days- 8hrs on day one and then 8 hrs on day two. they have switched

products on us a couple of times and it took me some time to figure out what was

occuring- I am gradually becoming much more aware of the system and what to

watch for. This list has been invaluable to me in trying to sort all this out.

Mike has been having IVIG for one year- this month- Happy Anniversary- and he is

doing soooo well that I tend to still panic if he has a bad turn- I always fear

that it is going to stop working and that we will be back where we were a year

ago. We do not have an immuno- our neurologist handles everything with Mike so

things like brands and product differences are new territory for all of us- but

we are trying. I did get the IDF list and it is very helpful.

thanks again for holding my hand.

Faye

>

> From: Dale Weatherford <dale@...>

> Date: 2004/08/10 Tue PM 07:09:43 EST

>

> Subject: Re: Nose bleeds

>

>

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Hi Wenoka

Thanks for the reply. You know I have been wondering about an infection. I

haven't seen the dark eye circles Mike usually gets with an infection but he is

sooo tired that i am now really thinking. thanks for reminding me about this.

What kind of seizures does sam have?

Faye

>

> From: & Wenoka Young <lighthouse68@...>

> Date: 2004/08/10 Tue AM 10:08:51 EST

>

> Subject: Re: Nose bleeds

>

>

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He has focalized seizures in the right occipital hemisphere. It's difficult to

say how often he has them. Since he was put on anti-seizure meds, we've never

seen any physical signs of seizures, however his EEG last spring stilled showed

significant seizure activity to the point the neurologist was surprised we

didn't.

They were a little hard to spot in the first place. He would kind of freeze for

about 30-45 seconds, then hit his forehead several times. We didn't put two and

two together until one day when he was standing on the couch (a no-no) and I

told him to get down, he didn't move. I thought he was just disobeying but in

case he hadn't heard me, I went over and looked him in the eye and told him

again. He had almost a panicked look in his eyes and I felt like he wanted to

obey, but couldn't move. Then he hit his head 3 or 4 times and got off the

couch. That's when it hit me that he could have been having some sort of

seizure. The next day at a parent/teacher meeting, she was describing some

behavioral problems that sounded exactly the same and then mentioned that she'd

suddenly wondered if it could be a seizure. Within a week, he'd had a MRI and

EEG. Sure enough, he had a seizure disorder. We have a lot of hope that it

will resolve though. Apparently this type of seizure !

in the back hemisphere will often resolve with no further occurances. We're

praying it will resolve soon, as it seems to be impairing his visual/spatial

fine motor skills and is interfering with his ability to write his school

material. He made A's in all the classes that did not involve writing, C's &

D's in the classes that did - which is, of course, the basic reading, writing

and arithmatic. They are giving him a trial period of 6 weeks in second grade,

but if he doesn't keep up, they'll give him a chance to go back to first grade.

So all of you prayer warriors, please be praying for Sam.

Well, I should go to bed. Tomorrow is Chuck E Cheese day (ie: IVIG treatment)

I hope you find an explanation and are able to see the problems resolved soon.

God Bless,

Wenoka (AMY - 10 on Monday / Sam - 7, Hyper IgM Syndrome, Seizure Disorder,

Sensory Integration Disorder / Christi - 3, but she claims to be 4 because she

doesn't want to be a little bitty girl anymore.)

>

> From: <rhmtce@...>

> Date: 2004/08/10 Tue PM 07:28:10 CDT

> < >

> Subject: Re: Re: Nose bleeds

>

>

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  • 1 year later...
Guest guest

my grandson had 2 bad nosebleeds in the past two day. I really don't know what to think---as the reason. I do know he is really stuffy from allergies and when it's the bad allergy season he does seem to have more nosebleeds.Anita Kugelstadt <mysuperteach@...> wrote: I just read over at A-M that nosebleeds can be a result of a new exposure to antimony according to Andy Cutler. Someone's child experienced this when a new carpet was installed at the school and the nosebleeds went away when the child was no longer allowed to play in that room.Thought this might help those who had been following the nosebleed thread.Anita

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Guest guest

my grandson had 2 bad nosebleeds in the past two day. I really don't know what to think---as the reason. I do know he is really stuffy from allergies and when it's the bad allergy season he does seem to have more nosebleeds.Anita Kugelstadt <mysuperteach@...> wrote: I just read over at A-M that nosebleeds can be a result of a new exposure to antimony according to Andy Cutler. Someone's child experienced this when a new carpet was installed at the school and the nosebleeds went away when the child was no longer allowed to play in that room.Thought this might help those who had been following the nosebleed thread.Anita

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  • 3 years later...
Guest guest

Hello.

I started my son on Calcium, Magnesium and nutritional yeast flakes on

Monday. (waiting on getting the rest of the supplements). He got a nose

bleed that day. Today (Tuesday) he’s had three. He also had an intense flush

within 10-15 minutes of taking the yeast flakes this morning. In lasted a

short time less than 30 minutes.

I was wondering, is it possible the nose bleeds are related to the yeast

flakes, since they increase blood in the capillaries? I have him on ½ the

adult dose since he’s 10. I was wondering if I should split the dose due to

the flush. I’m wasn’t too concerned after what I’ve read about the flush not

being harmful. The nose bleeds on the other hand, I’d like to avoid. Advice?

Thanks,

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