cimetidine

[Guest guest]

We see Dr. Kobrynski here at Emory in Atlanta - she's a pediatric

immunologist. Also, our pediatrician has 3 confirmed, one unconfirmed

cases.

Dani doesn't ever seem to get the chills, but instead just gets really

quiet and sometimes cranky when a fever is coming on.

Tylenol and Motrin works so-so with the higher fevers. Motrin

definitely works better than Tylenol. We are trying not to give Tylenol

given it can be harder on the liver and we haven't had Dani's liver

enzymes checked yet, now that she's on cimetidine. In fact, I had to

ask if it made since to check that since it wasn't mentioned by either

of our doctors, but our pediatrician after looking it up agrees we

should test it a few times.

Ginger M. Hackett, PMP, ABCP

Systems Solutions Principal

CAR Financial Services, Inc.

5 Concourse Parkway, Suite 400

Atlanta, GA 30328

New Work Phone: (770) 828-1397

TREO Phone: (404) 915-5035

Ginger.Hackett@...

________________________________

From: [mailto: ] On Behalf Of

Angie Stiles

Sent: Wednesday, August 15, 2007 4:12 PM

Subject: RE: cimetidine

That sounds like what we are going thru now. Our fevers were about every

30 days very high around 104-105 and now with the prednisone its 13

days. do you see a immuneologist??

....does Dani still act very sick with chills with the break through

fevers that are low?? does tyenol and motrin control the fevers with the

cimetidine??

" Hackett, Ginger " <ginger.hackett@...

<mailto:ginger.hackett%40compucredit.com> > wrote:

We have used Prednisone since January 07. We were on a 35-70 day cycle

(very random). But once we started Prednisone, we've dropped to a 14-18

day cycle. We are trying Cimetidine (but still giving Prednisone for

high fever episodes) for 3 months (starting early July 07) to see if it

makes the intervals between episodes longer and/or if it drops the

temps. Dani's fevers (untreated with Prednisone) are very high usually

105-108 and lasting 4-7 days.

It's still too early to see, but we didn't have a high fever episode for

53 days, yet we had lower fever episodes every 12-16 days (usually never

over 101). However this last episode we hit 106 two days in a row and

administered Prednisone twice. The fever then lasted an additional 3

days with temps 100-101.

We go back to the immunologist in September to see what to do next. She

had indicated we may think about T & A if the intervals didn't lengthen.

Our pediatrician thinks that cimetidine is working somewhat for us and

we should consider it successful. After this last episode -- I'm not

convinced, but I think it will depend on when her next episode is. I'm

willing to give it a few more months to see.

Ginger

Daughter - le, Just Turned 2 years old (fevering since 7 months,

diagnosed at 15 months)

Son - Jay, 3 months old

________________________________

From: <mailto:%40>

[mailto: <mailto:%40> ] On

Behalf Of

Angie

Sent: Wednesday, August 15, 2007 3:39 PM

<mailto:%40>

Subject: cimetidine

Ginger or anyone using Cimetidine

Why did your doc recommend cimetidine? How long did you try the

prednisone before being switched??or did you even try prednisone first.

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[Guest guest]

We never did the predisone route and my daughter has been on cimetidine for 6

months and has only had 2 episodes..... a miracle!!!!!! She had them

regularly....every 21 days. She is so much better than she has ever been! If

you have not tried it...it is worth trying and a very benign drug (in comparison

to prednisone).

And, eventually, she will be taken off of it.....

Good Luck!

Fern (mom to age 8--diagnosed at 2 1/2--PFS)

Angie <alwstiles@...> wrote:

Ginger or anyone using Cimetidine

Why did your doc recommend cimetidine? How long did you try the

prednisone before being switched??or did you even try prednisone first.

---------------------------------

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[Guest guest]

Hello ,

I tried responding to you via " reply " but the email

got bounced back to me, so I'll post my reply here:

We are using two 200mg Tagamet tabs a day (one in the morning, one at

night)taken along with two mebendazole a day (100 mg each). My wife

has pre-existing liver issues, so we started with half doses of the

mebendazole originally about 4 weeks ago. She takes SAMe as a

precaution and we will probably take a one week break from the

Tagamet every 5 weeks or so. Since you are taking both griseofulvin

and cimetidine at the same time, I'd suggest the SAMe in your case

also. Keep in mind that one of the big benefits of the cimetidine is

that it does tie up cytochrome P450, causing the mebendazole to last

longer. If you are concerned you might consider getting liver

enzymes measured once a month or so. I think this is all worth the

risk.

Keep me posted on how you are responding to this approach.

Mike

Wednesday, December 3, 2008, 2:39:03 PM, you wrote:

M> Hi Mike,

M> I have been using these for the past 6 weeks but I feel a little leery of the

Cimetidine (300

M> mg/day 3 x day) because it can cause liver damage. What do you think of it

for long-term

M> use? I have mets.

M> Thanks! And, BTW, I'm also using Griseofulvin along with those.

M> xxoo

M>

--

Best regards,

Mike mailto:goldenmike@...

[Guest guest]

Hi Melina. My son is 6 1/2 but he started on Cimetidine around the age of 4.

At the time he weighed about 38. He took 4 cc's of Cimetidine 2 times a day.

It did work for about a year, he came off it and the fevers, etc came back.

When he went back on, it didn't seem to work as well. He's not on it now - we

just had a T & A in July and are hopeful that will help!

As far as this being OTC - I don't think it is. I always had to have a Rx from

his doctor to get it. I would recommend that if your doctor won't give you the

Rx for it, find another doctor who will We had to change doctors, because ours

kept saying - it's normal for kids to have viruses. We were like you and

couldn't stand seeing him in so much agony every month (the mouth ulcers were

very painful!!!).

Good luck to you!!

Jodi B.

[Guest guest]

Hi Melina. My son is 6 1/2 but he started on Cimetidine around the age of 4.

At the time he weighed about 38. He took 4 cc's of Cimetidine 2 times a day.

It did work for about a year, he came off it and the fevers, etc came back.

When he went back on, it didn't seem to work as well. He's not on it now - we

just had a T & A in July and are hopeful that will help!

As far as this being OTC - I don't think it is. I always had to have a Rx from

his doctor to get it. I would recommend that if your doctor won't give you the

Rx for it, find another doctor who will We had to change doctors, because ours

kept saying - it's normal for kids to have viruses. We were like you and

couldn't stand seeing him in so much agony every month (the mouth ulcers were

very painful!!!).

Good luck to you!!

Jodi B.

[Guest guest]

Hi Melina. My son is 6 1/2 but he started on Cimetidine around the age of 4.

At the time he weighed about 38. He took 4 cc's of Cimetidine 2 times a day.

It did work for about a year, he came off it and the fevers, etc came back.

When he went back on, it didn't seem to work as well. He's not on it now - we

just had a T & A in July and are hopeful that will help!

As far as this being OTC - I don't think it is. I always had to have a Rx from

his doctor to get it. I would recommend that if your doctor won't give you the

Rx for it, find another doctor who will We had to change doctors, because ours

kept saying - it's normal for kids to have viruses. We were like you and

couldn't stand seeing him in so much agony every month (the mouth ulcers were

very painful!!!).

Good luck to you!!

Jodi B.

[Guest guest]

Thanks everyone. My son's doctor told me it was over the counter but when I went

to get some it was only the tablets that are OTC, not the liquid. I did finally

ask a couple weeks ago for her to refer me to an ID doctor and she finally did.

Got a call from the ID office saying they got his records but only 1 fever was

documented so he can't do anything about it yet. I can't believe it! Of ALL the

times I have taken him to the doctor for this, only one is documented in his

records! So the ID told me to start doing a " fever chart " for a month and then

we could make an appointment.

This is all so frustrating.

I live in Northern Arizona. If anyone here knows a doc familiar with this

condition anywhere in AZ PLEASE let me know.

Thank you,

Melina

[Guest guest]

Thanks everyone. My son's doctor told me it was over the counter but when I went

to get some it was only the tablets that are OTC, not the liquid. I did finally

ask a couple weeks ago for her to refer me to an ID doctor and she finally did.

Got a call from the ID office saying they got his records but only 1 fever was

documented so he can't do anything about it yet. I can't believe it! Of ALL the

times I have taken him to the doctor for this, only one is documented in his

records! So the ID told me to start doing a " fever chart " for a month and then

we could make an appointment.

This is all so frustrating.

I live in Northern Arizona. If anyone here knows a doc familiar with this

condition anywhere in AZ PLEASE let me know.

Thank you,

Melina

[Guest guest]

Thanks everyone. My son's doctor told me it was over the counter but when I went

to get some it was only the tablets that are OTC, not the liquid. I did finally

ask a couple weeks ago for her to refer me to an ID doctor and she finally did.

Got a call from the ID office saying they got his records but only 1 fever was

documented so he can't do anything about it yet. I can't believe it! Of ALL the

times I have taken him to the doctor for this, only one is documented in his

records! So the ID told me to start doing a " fever chart " for a month and then

we could make an appointment.

This is all so frustrating.

I live in Northern Arizona. If anyone here knows a doc familiar with this

condition anywhere in AZ PLEASE let me know.

Thank you,

Melina