Meds

[Guest guest]

In a message dated 5/16/01 11:05:08 AM Pacific Daylight Time, dagelo@... writes:

Hi Harper,

The only problem with sleeplessness is that it affects my teenagers when they see Mom needing so much rest. I try to be UP when they are with me,,,,,but so easily succumb to fatigue after about 30 min of going shopping for them, cooking dinner, looking over homework( I no longer do their term reports!!...but I used to tutor my LD son quite a bit.). I am a widowed Mom and must keep up my best for my kids.

Still, it is a good day,

That must be very difficult. How old are your teenagers? I hope I was clear that Atarax causes sleepiness, not sleeplessness. The sleepiness does wear off as you get used to the drug but can be overwhelming if you have other plans! And, it does keep you from roaming the house at night, itching.

Harper

[Guest guest]

Joanne, thanks for the reply! I certainly MUST take the lactulose because of the very high ammonia levels (I do not eat meat protein, only vegetable protein now), but I do consume a lot of yogurt lately to keep my intestinal flora normal. Still, my kids are great at watching my mental functions, and gently let me know when I am sounding not quite right.

My Mom bought me Natren's Healthy Trinity, which is essentially high doses of lactobacillus acidophilus -- seem to make my lower gut feel better but as I just started it, it may take a week or two to give it a thumbs up. Mom gives it to my 80 yr old Dad after he has been on antibiotics for one infection or another. I do take Q10 also, but not as often as I should. I'll talk with my local doc about atarax. Thanks for the input.

It's a nice day today,

[Guest guest]

Joanne, I get this message everytime I post a message to ANYONE...do you know what this is about? I DO NOT send attachments or embedded images (what are those?)

Sorry dagelo@.... Your mail to nellg483 could not be delivered because nellg483 is not accepting mail with attachments or embedded images

[Guest guest]

To anyone? I always get it whenever I try to write to her....but that is all...... Try writing to MY [ersonal; e-mail address.... JJCATHCART@...

Re: [ ] Meds

Joanne, I get this message everytime I post a message to ANYONE...do you know what this is about? I DO NOT send attachments or embedded images (what are those?)

Sorry dagelo@.... Your mail to nellg483 could not be delivered because nellg483 is not accepting mail with attachments or embedded images

[Guest guest]

Well.if your ammonia levels are high then you MUST take the Lactulose..and PLEASE take your Q10 every day! and do ask about the Atarax. Joanne

Re: [ ] Meds

Joanne, thanks for the reply! I certainly MUST take the lactulose because of the very high ammonia levels (I do not eat meat protein, only vegetable protein now), but I do consume a lot of yogurt lately to keep my intestinal flora normal. Still, my kids are great at watching my mental functions, and gently let me know when I am sounding not quite right.

My Mom bought me Natren's Healthy Trinity, which is essentially high doses of lactobacillus acidophilus -- seem to make my lower gut feel better but as I just started it, it may take a week or two to give it a thumbs up. Mom gives it to my 80 yr old Dad after he has been on antibiotics for one infection or another. I do take Q10 also, but not as often as I should. I'll talk with my local doc about atarax. Thanks for the input. It's a nice day today,

[Guest guest]

Hi Harper,

The only problem with sleeplessness is that it affects my teenagers when they see Mom needing so much rest. I try to be UP when they are with me,,,,,but so easily succumb to fatigue after about 30 min of going shopping for them, cooking dinner, looking over homework( I no longer do their term reports!!...but I used to tutor my LD son quite a bit.). I am a widowed Mom and must keep up my best for my kids.

Still, it is a good day,

[Guest guest]

HEATHER-

SORRY YOU HAD TO FIND OUT THE " HARD " WAY THAT YOU CAN NEVER GIVE A DOC TOO

MUCH INFORMATION AND DRILL THEM OVER AND OVER.....

I CAN SYMPATHIZE WITH YOU AS FAR AS GIVING INFORMATION TO DOCTORS REGARDING

MEDS. WHAT'S SADDER IS WHEN THE DOCTORS WHO KNOW ALL YOU MEDS AND THEIR

SCHEDULES AND DON'T KNOW OF POSSIBLE DRUG INTERACTIONS. MY GP DIDN'T KNOW

THAT AMITRIPTILINE AND ZOLOFT COMBINED COULD TURN YOUR SYSTEM TOXIC. I FOUND

THAT OUT FROM MY PYSCH. LUCKY FOR ME AFTER HER VISIT TODAY MY TEST FOR

LEVELS CAME BACK " OK " , SHE EXPLAINED THAT BOTH MEDS ARE USED FOR DEPRESSION

(ALTHOUGH THE AMITRIP WAS GIVEN TO ME FOR PAIN) AND THAT THERE ARE LEVELS OF

EFFECTIVENESS YOU CAN GET FROM BLOOD TESTS THAT LET YOU KNOW WHETHER OR NOT

THE MIX IS GOOD OR BAD TO FIND OUT WHETHER IT IS EVEN DOING ANY GOOD FOR THE

DEPRESSION.(THE TESTS CAN'T MONITOR WHETHER OR NOT DEPRESSION MEDS ARE

HELPING WITH PAIN OR NEUROPATHY). BUT THE MOST SURPRISING THING IS ALL MY

MEDS ARE FILLED AT THE SAME PHARMACIST AT THE SAME TIME AND HE DIDN'T EVEN

WARN ME THAT I SHOULD BE WATCHING MY LEVELS!!

SORRY TO RAMBLE SO MUCH, HOPE YOU FOUND SOME KNOWLEDGE HERE.

CHICAGOLAND SHARON

[Guest guest]

Now ......are you saying you get that message with a lot of other people too?? Or just that one??? And, she is either a LIVERSUPPORT_L or a PBCer. Joanne C.

Re: [ ] Meds

In a message dated 5/16/01 10:16:37 AM Pacific Daylight Time, dagelo@... writes:

Your mail to nellg483 could not be delivered because nellg483 is not accepting mail with attachments or embedded images I also get this message very often, perhaps with every LiverSupport message I send -- I'm not sure if it follows every message. I assume nellg483 is a member of our group who has set up a barrier that blocks incomings rather indiscriminately. (I never send attachments or any visuals.) Harper

[Guest guest]

Harper......so right...I used to be up and down all night from the itching! Now.i sleep thru the night. For me, the Atarax was a life and sanity saver. Joanne C.

[Guest guest]

In a message dated 12/26/02 8:58:27 PM Eastern Standard Time, coniaimee@... writes:

Two questions...first, what is a normal dose of Prednisone and Imuran?

I think it varies. My starting dose of Prednisone is 20 mg.

Cheryl

[Guest guest]

>

> From: " connie schmitt " <coniaimee@...>

> Date: Fri 27/Dec/2002 01:58 GMT

> < >

> Subject: [ ] meds

>

> Hi everyone,

> Two questions...first, what is a normal dose of Prednisone and Imuran? Second

did anyone get CT scans in the begining stages? I requested one for my son prior

to his first biopsey (Dec. 30). His CT is on Sat.

> Thanks for all the support

> Connie

> Devin's mom

>

> hi, I was told that there wasnt a normal dose, every patient is different, but

i did have a scan before the biopsy, 9 months before to be exact. they are a

bit slow over here in england. but the scan was a waste of time cos when i went

for the results of the biopsy, they couldnt find the results. useless or what.

take care

anita

__________________________________________________________________________

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your first 3 months, that's HALF PRICE! And then it's just £13.99 a month

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0800 970 8890

[Guest guest]

Jerry I KNOW. but try telling that to my doctor. i am going to try and make

an appointment for next week to see my favourite doctor, shell sort it out for

me. its her 1st week back after maternity leave. wont she be pleased to see me.

love

anita

>

> From: gefox@...

> Date: Sat 11/Jan/2003 08:35 GMT

>

> Subject: [ ] meds

>

>

> Anita....... YOU TAKE TOO MANY PILLS !

>

> love jerry

>

>

>

[Guest guest]

Hello..

I have weaned myself off, with Doctor's permission from High Blood Pressure

meds, and what a discharge that is. The headache is unreal. Not only the

headache, the neck pain, the rash, etc. So, I think I will wait awhile

before going off caffeine, and let my body get over this situation.

Di

[Guest guest]

Hi Becky,

I just started mtx (7.5 mg/week) 4 weeks ago - I, like you, was

petrified... in fact my rheumy mentioned it to me last November and

instead of starting the program, I " ran away " and didn't go back to

see him until June at which time my pa had become considerably

worse... The warnings on the rx are quite alarming but like most

meds, it's not like this is what IS going to happen, instead I

believe the pharmaceutical companies cover all bases (cyob) by

listing every single possible (though rare) side effects to be safe.

My understanding is that it takes up to 3 months (what my rheumy

said) to know if mtx is going to work for you - it is not an

overnight remedy - my rheumy said my chances it will work are between

50% - 70%. Since starting the rx I have developed some indigestion -

nuts bother me now - and fatigue is a big issue - it is quite

extreme. I have also had occasional very mild nausea before

breakfast - other than that I am fine. One of the editors ()

has been on it for years and reports he has no side effects at all

with mtx... Unfortunately, with most things with this tricky

disease, everyone is different.

Glad you are feeling " normal " again - great to know we are not alone

in this, isn't it. No, it is not in your head!

Hope this helps.

> Okay....so I'm spending a good deal of time reading current and

> previous posts. Learning tons and feeling " normal " again.

>

> I learned that my MRI shows no bone damage and for that I am

> thankful. I do start with Methotrexate today and for that I am

> scared out of my head! I keep thinking that perhaps my hands will

> stop hurting tomorrow. Perhaps I'll have a remission again.

>

> My question is, has anyone else been frightened prior to starting

> meds (or is currently frightened)?

>

> Also, does anyone here get canker sores and do you feel it's

> connected?

>

> Thanks so much

>

[Guest guest]

Yes, and yes. I'm scared of all these drugs but I will try them

anyway to head off further damage. So far I've had Arava and Enbrel

and both scare the heck outta me.

Yes, I get sores all in my mouth from time to time and I believe

Arava is the culprit. They're horrible, aren't they?

Penny

> My question is, has anyone else been frightened prior to starting

> meds (or is currently frightened)?

>

> Also, does anyone here get canker sores and do you feel it's

> connected?

>

> Thanks so much

>

[Guest guest]

I got sores when taking MTX but haven't been bothered since I've been on arava.

The side effects sure do vary with all of us.

Cheri

[ ] Re: meds

Yes, and yes. I'm scared of all these drugs but I will try them

anyway to head off further damage. So far I've had Arava and Enbrel

and both scare the heck outta me.

Yes, I get sores all in my mouth from time to time and I believe

Arava is the culprit. They're horrible, aren't they?

Penny

> My question is, has anyone else been frightened prior to starting

> meds (or is currently frightened)?

>

> Also, does anyone here get canker sores and do you feel it's

> connected?

>

> Thanks so much

>

[Guest guest]

The canker sores were before the mtx (I'm starting that this week)but

they have gotten much worse, along with the symptoms in my hands in

the past few months. I'm thinking that may be related....or perhaps

not.....

R

[Guest guest]

In a message dated 3/30/2004 1:41:08 AM Eastern Standard Time,

rosemarymc@... writes:

hi everyone ,

i been reading all your letters but i miss something , i would

like to know why every one is taking folic acid . there is so many

things i need to know looking forward to the next chat which i was

in for one but no one was on line or i did something wrong. (dont

know) RC

Hi RC...for me, I take the folic acid for energy...my rheumie said many

people with PA have a lower level of folic acid, which can affect energy level.

It

is the only thing that has helped with the energy problem associated with PA

for me...

[Guest guest]

Hi,

I don't know which message this is in response to. I have been on

Zrytec D for the last year and 3 months. So the doctor is afraid

that my body has gotten used to it, so we have to go onto something

else. For me Clarinex is what we are trying now. I think i've

probably been on every anti-histimine on the market. I've been

dealing with allergies for the last 5 to 7 years. Adult onset, lucky

me. Plus, I have migraines and therefore, the doctor doesn't want me

to continue on the decongestants they said something about the

imitrex i'm on is also a nasal constrictor or something and being on

more than one can cause issues. I vowed by zyrtec d, but it seems

not to be helping me lately. In combo with nasocort aq, a beta

blocker for the migraines and others but here I am trying to battle

the allergies to keep from setting off the migraines. Not to mention

the PA. The zrytec d also made me sleepy but dealt with it anyway.

Hope it helps you more than it has me lately.

Keli

> I was noticing that you may be switching your allergy meds to

clarinex. If

> you want the strongest and most effective my ENT doc has

prescribed for me

> Zyrtec

> which I take 1-2 a day depending on the season.

>

> I hope this helps a little. I have never noticed any side effects

from it

> either.

>

> S.

> group founder

>

>

>

[Guest guest]

June - I think the most sensible approach is to keep moving but in

shorter bursts. I find that I do very well if I only stand/walk for

about 15 minutes at a time, then sit for about the same. You don't

have to rest, just do something that doesn't stress whichever joints

give you the most trouble. If your feet are bad, sit and do desk work

for a while. If your fingers are bad, you might be able to keep

standing or walking but rest your hands for a while.

You don't have to stop altogether, just pace yourself. Experiment to

see what works for you. best regards, sherry z

[Guest guest]

They usually don't make things worse. It's more likely that you are having a

flare. I would call your doctor and let them know what's going on they may want

to give you a short dose of something to get the flare under control.

Celeste

[Guest guest]

Hi.

All I know about it what we deal with,,,,,,but from our experience, if your child tells you he can't focus/think....then it may be time to check into adding a med.

I know you are afraid to add to the med he's already on.....but if you do it slowly....then any change will be obvious that it isn't the one, ya know?

My son, after not being on meds for 2 years because we brought him home for school, is now back in a school and he's crying that he can't focus. So,,,,we're having to work with getting him back on. He recently started getting really bad with his OCD, so we're tackling the OCD first. Then, once we stable that, we're gonna work on the attention.......

Makes me cry. It's scary. He has wonderful days.......and even on bad days, there are great moments that make you question if it's just the way they are and if you should be medicating at all. Then,,,,the bad times are absoutely horrific.

Ugh

I, like you,,,,and most,,,,fear having to add meds. In a perfect world, no one would need meds. But,,,,,,I guess we gotta choose the lesser of 2 evils, right? If the meds make them feel better,,,,,,,,and function better, we gotta do it - at least for a while to help them through their tough times.

Anyway,,,,good luck.

Keep us posted.

Robin

Normal is just a cycle on a washing machine!!

From: laughlove3 <laughlove3@...>Subject: ( ) Meds Date: Monday, September 7, 2009, 7:53 AM

Hello all, I am sending a little note to ask those of you that deciced to do meds for the anxeity, behavoir, etc. For there children. I'm not sure if we want to do meds or not. I go back and forth with the whole idea. The side effects just scare me!!! He is on meds for his seizures at this time and I don't want to mess that up either. Everyday as many of u know can be an issue. Lately no matter what it just seeems like his s/s are increasing. Sensory is def worse. He is def having more anxiety. But then he will have his okay or very good days and I will think nope he doesn't need meds. Did anyone go through this too? The next day if there is company here he is running screaming, can't calm himself, etc. He at times puts both hands on his head and says "I just can't think" Then my heart is breaking. He usually only does that when he is to have to think quickly. He is not focusing at all. He will walk by and spill someones drink and then laugh. Put

him in timeout and he will say "what did I do". Well I'm sure this is stuff that u all prob have heard of before. I just wanted the advice of the ones that go through it on a daily basis. He is only 4 turning 5 very sooon. I also don't want to put him on meds as maybe alot of this is normal 4 year old behavoir. Well tell me what u think....... ........

[Guest guest]

Hi Pam,It is interesting but I did not see the emotional pain that my daugther was having without medication, took a friend observation to made me realize the problem.One day she had a panic attack in my friends' house. He told me "Why you and the doctors made her suffer so much? why she is not in medication? and he told me that I was always welcome on his house, but he can't see a child suffering like that"Next day I called the doctor and told him that my friend thinks that I and the doctors are being cruel and I explained what happened that day. He prescribed the medication right away and gave me some paper work to authorized those medications on her and a waiver form to sign.I really very thankful for that friend that made come to reality and make the right decision. ( ) Re: MedsI know how you feel. I postponed medication until age 11. I do have some feelings of guilt that we let her suffer so long. From the timeshe started preschool on, she had episodes of panic, school anxiety and the worse was transitions caused outbursts. She was also often very oppositional toward me and would hit me if I triedto stop her obessional interests. Most doctors will trial a SSRI like zoloft or prozac for children because it has been studied the most and has the least sideeffects. Many kids I have read with AS need often just a low doseto start to see a difference. I don't know why so many peopleopposed zoloft in a low dose for our daughter for so long (our family, my friends, my husband, our pediatrician). It seemedlike people around me were sure something horrible was going to happen to her. What I learned is that if you start at very low doses (zoloft 10mg, prozac 2mg) you are going to allow your child to get adjusted to the medication in their system and you will see if there are any adverse reactions in a low dose with a low reaction. This seems so controlled and safe strategy I don't knowwhy it would not be trialed with kids with AS and anxiety.good luck, I would suggest finding a child psychiatrist that is willing to work in a slow stepwise fashion. I also thinkmany neurologists do well treating AS as long as there is not Bipolar in the mix and they often DO take insurance.Pam >> Hello all, I am sending a little note to ask those of you that deciced to do meds for the anxeity, behavoir, etc. For there children. I'm not sure if we want to do meds or not. I go back and forth with the whole idea. The side effects just scare me!!! He is on meds for his seizures at this time and I don't want to mess that up either. Everyday as many of u know can be an issue. Lately no matter what it just seeems like his s/s are increasing. Sensory is def worse. He is def having more anxiety. But then he will have his okay or very good days and I will think nope he doesn't need meds. Did anyone go through this too? The next day if there is company here he is running screaming, can't calm himself, etc. He at times puts both hands on his head and says "I just can't think" Then my heart is breaking. He usually only does that when he is to have to think quickly. He is not focusing at all. He will walk by and spill someones drink and then laugh. Put him in timeout and he will say "what did I do". Well I'm sure this is stuff that u all prob have heard of before. I just wanted the advice of the ones that go through it on a daily basis. He is only 4 turning 5 very sooon. I also don't want to put him on meds as maybe alot of this is normal 4 year old behavoir. Well tell me what u think...............>

[Guest guest]

Hi,I was just reading your post about the lesser of 2 evils, and now again I have to decided between them. I have to decide between surgery in my aspie girl knees and others no surgery alternatives. I will wait until the summer to decide for surgery if the other alternative methods do not work.is it common for aspie to have several medical problems? ( ) Meds Date: Monday, September 7, 2009, 7:53 AM Hello all, I am sending a little note to ask those of you that deciced to do meds for the anxeity, behavoir, etc. For there children. I'm not sure if we want to do meds or not. I go back and forth with the whole idea. The side effects just scare me!!! He is on meds for his seizures at this time and I don't want to mess that up either. Everyday as many of u know can be an issue. Lately no matter what it just seeems like his s/s are increasing. Sensory is def worse. He is def having more anxiety. But then he will have his okay or very good days and I will think nope he doesn't need meds. Did anyone go through this too? The next day if there is company here he is running screaming, can't calm himself, etc. He at times puts both hands on his head and says "I just can't think" Then my heart is breaking. He usually only does that when he is to have to think quickly. He is not focusing at all. He will walk by and spill someones drink and then laugh. Put him in timeout and he will say "what did I do". Well I'm sure this is stuff that u all prob have heard of before. I just wanted the advice of the ones that go through it on a daily basis. He is only 4 turning 5 very sooon. I also don't want to put him on meds as maybe alot of this is normal 4 year old behavoir. Well tell me what u think....... ........

[Guest guest]

I know exactly what you mean about going back and forth on medication. In

fact.....I have recently made an appointment to talk to the neurophysiologist

about meds, who then referred us back the the neurologist due to prior issues

with side effects. I made an appointment with the neurologist, only to cancel

it after a good week! I think the same thing....maybe this is just how he is.

Should I really medicate my child to change who he is??? But then we have a bad

day.....his teacher sends me a nasty letter or he is having problems getting

along with kids at school....and I wonder if I'm hurting him by not putting him

on meds. Could I be helping him make & keep friends in 1st/2nd grade, rather

than starting out on the wrong foot?

One thing I would say is this......my son was on a couple different meds

(stimulants to control compulsiveness, non stop talking,...his biggest issues),

and he started having bad facial tics. That is the reason we now have to see a

neurologist to get any meds!! I haven't noticed any tics in awhile....so being

of the meds for awhile must of helped. It was really scary for awhile, and I

worried I had caused something more for him to struggle with at school and with

his peers. I now realize if there is a history of Tourettes or any type of

tic.....do not give them stimulants. My son has a great Aunt and 2nd cousin who

both had Tourettes....don't know if that had anything to do with it.

Best luck to all who are considering meds. I have cried many tears over this

decision and having to watch my child sit calmly while medicated, wondering if I

was only drugging him (I'm not used to my child sitting quietly and holding

still). I believe whatever decision you make is in the best interest of your

child, and don't ever let anyone make you feel otherwise

>

>

> From: laughlove3 <laughlove3@...>

> Subject: ( ) Meds

>

> Date: Monday, September 7, 2009, 7:53 AM

>

>

>

>

>

>

> Hello all, I am sending a little note to ask those of you that deciced to do

meds for the anxeity, behavoir, etc. For there children. I'm not sure if we want

to do meds or not. I go back and forth with the whole idea. The side effects

just scare me!!! He is on meds for his seizures at this time and I don't want to

mess that up either. Everyday as many of u know can be an issue. Lately no

matter what it just seeems like his s/s are increasing. Sensory is def worse. He

is def having more anxiety. But then he will have his okay or very good days and

I will think nope he doesn't need meds. Did anyone go through this too? The next

day if there is company here he is running screaming, can't calm himself, etc.

He at times puts both hands on his head and says " I just can't think " Then my

heart is breaking. He usually only does that when he is to have to think

quickly. He is not focusing at all. He will walk by and spill someones drink and

then laugh. Put him in

> timeout and he will say " what did I do " . Well I'm sure this is stuff that u

all prob have heard of before. I just wanted the advice of the ones that go

through it on a daily basis. He is only 4 turning 5 very sooon. I also don't

want to put him on meds as maybe alot of this is normal 4 year old behavoir.

Well tell me what u think....... ........

>