Medication

August 12, 1999

In a message dated 08/12/1999 9:59:58 AM Eastern Daylight Time,

eduardovpf@... writes:

<< I'm sending this message to the group, thinking that these words could help

someone that is fighting against that disease. >>

Thank you for the information...we gain valuable knowledge from sharing our

experiences. Your son is apparently being treated aggressively and I hope he

responds well. Keep us informed.

Annette

February 5, 2001

Suzanne

Welcome if you are new to the group...I have been away from the computer for awhile.My name is Luanne and I am here on this list because my 18 yr old son has AIH and PSC...He also has Crohns and Rhuematoid Arthritis...He was on all kinds of meds for the later 2 before the Liver Diseases were diagnoses...I can see them not wanting to start some meds...but for you to be suffering for 8 months is crazy...I would insist on getting something to improve you quality of life....Luckily the 14th is not far away but I would let them know that you need some help for this problem....

I would not recommend something that was over the counter because some things may do more damage than you would even know...

The only thing I would suggest is to know what foods to eat at what times...If you are constipated sometimes just drinking alot of apple juice will help...of course some bran muffins...etc..

When it is the opposite try some bananas.....baked potato....things of that sort....

I hope you get some answers plus some help REAL SOON....

Let us know how you did on the 14th ....and there will probably be more help on the way from others on the list here.....

Luanne Ty's mom

March 8, 2001

People, I have a decision to make on medications, and if you have any thoughts on the subject I'd appreciate hearing them. I was diagnosed AIH 5/00. I'm down from 80 mg Prednisone to 7.5! (plus 100 mg Imuran.) I gainedd forty pounds in six weeks, having weighed 130 at 5'5, and I haven't lost or gained a pound since. I feel great when I wake up, assuming I've gotten enough sleep (lots), but I become thoroughly exhausted rather quickly -- when I notice I'm walking like a duck I know it's time to quit. My LiverDoc suggested that an anti-depressant might help my energy level and arranged for Prozac (which takes about six weeks to take effect) to be prescribed. I just don't feel depressed -- I think I'm unusually happy, in fact. I'm reluctant to take the drug unnecessarily. However, I don't want to pass up something that might help. I've put this decision off for more than a week.

Harper

March 8, 2001

Dear Harper:

I would be hesitant to take the prozac for fatigue, too. Antidepressants are often prescribed to help people deal with the mood swings caused by prednisone, but I'd question its use for combating fatigue. It's very possible that your extreme fatigue is caused by the fact that you've been weaned from such a high dosage of prednisone and your body hasn't adjusted to it yet. A lot of GI doctors and Hepatologists are not as up on what prednisone can do as they should be. In my case, it wasn't until I went to a Rheumatologist that I found someone who was totally knowledgeable about prednisone and ALL of it's side effects. That is a very dramatic drop, and depending on how long you took to go from 80 to 7.5 mgs, it could take your body months to adjust to the lower dosage. Food for thought, anyway. How are you numbers (Liver Function Tests)? Depending on where you're at with the disease, the illness itself causes extreme fatigue, too.

Kathy (AIH)

Seattle area

March 8, 2001

Thanks, Kathy, on your remarks on prednisone and prozac. My liver tests have been fantastic lately. I should go in for another test today. Until Christmas, I was doing blood tests every week, sometimes more often; in February I switched to once a month! Actually, I feel markedly better in the last two weeks. Harper

March 8, 2001

Harper,

I am new to this game but my doctor put me on Ritalin

for the engery. It seems to be helping with a few side

effects but it is helping me get thru the day with out

at nap. Now I go to ben about 8 pm the lastest but no

more naps. Hope this helps.

Shelby

__________________________________________________

March 8, 2001

Hi Harper,

Im trying to think of the pros & cons of the Prozac. Cons I guess being one more drug to process I guess. It sounds like you have an excellent Dr. tho that thinks that could only improve your situation. Do you trust his/her opinion with this. Have they treated other patients that have had success with this? Do you weigh 130 at 5'5 now? That does not seem overweight to me. If it is 165 at 5'5 I would think the weight alone could make you tierd, just doing normal things even without the AIH. I know that when I gain, I tire more easily. Im inclinded to think what the heck, the Prozac could only help, that is if you have been stable for awhile & then you could determine if any blood work fluctiations would be due to the Prozac. Curious what decision you make. Keep us posted.

PS - Visited San Fran last summer for a long weekend. Beautiful place, Muir woods was just awesome. The most incrediable thing was how nice the people are. Truly the most helpful I have ever meet in offering directions without asking etc....as a tourist all you have to have is a Bart / Metro bus map & everyone will tell you how to get around. We travel alot & think the people there are the nicest in the country : )

Re: [ ] Medication

People, I have a decision to make on medications, and if you have any thoughts on the subject I'd appreciate hearing them. I was diagnosed AIH 5/00. I'm down from 80 mg Prednisone to 7.5! (plus 100 mg Imuran.) I gainedd forty pounds in six weeks, having weighed 130 at 5'5, and I haven't lost or gained a pound since. I feel great when I wake up, assuming I've gotten enough sleep (lots), but I become thoroughly exhausted rather quickly -- when I notice I'm walking like a duck I know it's time to quit. My LiverDoc suggested that an anti-depressant might help my energy level and arranged for Prozac (which takes about six weeks to take effect) to be prescribed. I just don't feel depressed -- I think I'm unusually happy, in fact. I'm reluctant to take the drug unnecessarily. However, I don't want to pass up something that might help. I've put this decision off for more than a week. Harper

March 9, 2001

On Thu, 8 Mar 2001 11:01:29 EST, wrote:

> People, I have a decision to make on medications, and if you have any

> thoughts on the subject I'd appreciate hearing them. >

Harper, try the antidepressant. Mine has really helped with both fatigue

and weight loss.

Debra

your gentle friend

God Bless

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August 6, 2001

In a message dated 8/6/01 7:03:49 AM Pacific Daylight Time, Lorcan4@... writes:

The prednisone only seem to help when she is on a higher dose and she can't stay on a high dose for very long. It seems to make her hyper for a while and then she gets weak and depressed. I guess partly from the lack of sleep she has a hard time getting to sleep and is up a the crack of dawn every morning.

Does anyone have any ideas that might help her sleep better? We've tried warm milk, warm bathes and back massages, nothing seems to help.

Thanks

Lori

Prednisone does that. Incidentally, it's important to the take Prednisone early in the morning, and it's important to be very consistent in taking it.

People typically feel extremely energetic, and then they run out of that "false" energy and crash to extreme fatigue. One also may feel highly emotional.

The high doses are gradually and steadily taper downward as the blood tests improve, and the energy and emotion surges modulate down, also.

I don't know of any way around this energy and emotional intensity. Does anyone else? I think you just have to wait it out and hope that those around you understand the pattern. Being restored to good health is worth it.

Make sure that her bone density needs are being seen to.

Harper (AIH 5/00)

August 6, 2001

> In a message dated 8/6/01 7:03:49 AM Pacific Daylight Time,

Lorcan4@a...

> writes:

> DEar Harper--Please fill me in on the once a week Fosamax. I take

it once a day and the hour wait to eat throws my schedule off all the

time. Thanks Ellston

>

> > The prednisone only seem to help when she is on a higher dose and

she can't

> > stay on a high dose for very long. It seems to make her hyper for

a while

> > and

> > then she gets weak and depressed. I guess partly from the lack

of sleep

> > she

> > has a hard time getting to sleep and is up a the crack of dawn

every

> > morning.

> >

> > Does anyone have any ideas that might help her sleep better?

We've tried

> > warm milk, warm bathes and back massages, nothing seems to

help.

> >

> > Thanks

> >

> > Lori

> >

>

> Prednisone does that. Incidentally, it's important to the take

Prednisone

> early in the morning, and it's important to be very consistent in

taking it.

>

> People typically feel extremely energetic, and then they run out of

that

> " false " energy and crash to extreme fatigue. One also may feel

highly

> emotional.

>

> The high doses are gradually and steadily taper downward as the

blood tests

> improve, and the energy and emotion surges modulate down, also.

>

> I don't know of any way around this energy and emotional

intensity. Does

> anyone else? I think you just have to wait it out and hope that

those around

> you understand the pattern. Being restored to good health is worth

it.

>

> Make sure that her bone density needs are being seen to.

>

> Harper (AIH 5/00)

January 1, 2003

Harper, my doctor prescribed the naramig years ago, but i must admit that next

week at the hosp. i am going to go through all my meds with them. i was told

that i might not be able to carry on with my hrt. god help everyone if that

happens. i am i take so many different meds each day, but i dont know which ones

are ok and which are not. thanks for telling me this as i didnt have a clue, i

am so new to all this. actually, i think its new to my doctor as well, god help

me.

thanks

love anita

>

> From: flatcat9@...

> Date: Wed 01/Jan/2003 21:31 GMT

>

> Subject: Re: [ ] Medication

>

> Message: 22

> Date: Wed, 1 Jan 2003 8:49:26 +0000

> From: <rainbow1953@...>

> Subject: Re: A question about flares

>

> > . . . i just seem to take naramig for migraines like there sweets. havent

> told the doc tho. cant be bothered

> anita

>

> Anita, you MUST tell your doctor every single thing that you take. Now that

> you have AIH, you absolutely must take into account everything you take,

> including over-the-counter items, prescribed medications, vitamins, herbs

> (other than culinary), or teas. Those of us with damaged livers react

> differently than others. This is very serious; you can't self-medicate.

> Harper

>

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January 1, 2003

Harper is absoluely right... you'r fooling wth dynamite..self medication

and mixing meds is serious busines. Taking any med " like candy " is

foolish. Warnings on Naramig specifically say not to take as a

prohalaxis

but only on the onset of migraine.The normal dose is 2.5mgs and one

should not take more than 2(two) 2.5 tabs in a 24 hr. period. If one

tablet doesn't relieve the pain it is highly unlikely another one will.

People with hepatic (liver) or renal (kidney) impairment are directed to

limit dosage to ONE tablet a day.

This is exactly what I was preaching earlier about.... society takes too

many pills..... ones doctor isn't around to monitor dosage and meds from

different doctors can severely distort the action of each other, if one

doesn't know what the other is prescribing, not to mention what

" harmless " OTC and/or herbs ( " natural " additives) are being ingested.

Many people fall into the trap of thinking....if 2 of these green pills

kill the pain and 2 of these red ones do too, then 4 green ones or 2

greens and 2 reds must be twice as good or maybe if I take 3 greens and

a red or1 green and 4 reds.....etc. etc.

Anita I'm glad you are seeing your doctor to fess up to your

medications... from what I have read you take entirely too many meds.

(in my opinion) and we don't want to lose you....we just found you.

Take some care of yourself. (gobbling pills like candy indicate a

tendency towards addiction.)

Know that my opinion is given lovingly as I pray for you and the many

obstacles you seem to have in your life.

love jerry

Message: 22

Date: Wed, 1 Jan 2003 8:49:26 +0000

From: <rainbow1953@...>

Subject: Re: A question about flares

> . . . i just seem to take naramig for migraines like there sweets. havent told the doc tho. cant be bothered

anita

Anita, you MUST tell your doctor every single thing that you take. Now that you have AIH, you absolutely must take into account everything you take, including over-the-counter items, prescribed medications, vitamins, herbs (other than culinary), or teas. Those of us with damaged livers react differently than others. This is very serious; you can't self-medicate.

Harper

January 2, 2003

Hi jerry, thanks for you email, yes i think i am addicted to the co-codamol.

the other meds are for high blood pressure, arthiritis, dizzyness and sickness,

depression and many other things. when i got the diagnosis of fibromyalgia they

added to my 60mgs of prozac with 150mgs of amitryptaline. take those at nigh and

the prozac to wake me up. but all these diiferent meds ahve been given to me to

treat different illnesses or symptoms, its only now that they are linking

everything up to the aih. i really do appreciate the messages as i cant ask my

doctor and anyway, you all have helped me so much in such a short time.

love and prayer to everyone

anita

>

> From: gefox@...

> Date: Thu 02/Jan/2003 00:46 GMT

>

> Subject: Re: [ ] Medication

>

> Harper is absoluely right... you'r fooling wth dynamite..self medication

> and mixing meds is serious busines. Taking any med " like candy " is

> foolish. Warnings on Naramig specifically say not to take as a

> prohalaxis

> but only on the onset of migraine.The normal dose is 2.5mgs and one

> should not take more than 2(two) 2.5 tabs in a 24 hr. period. If one

> tablet doesn't relieve the pain it is highly unlikely another one will.

> People with hepatic (liver) or renal (kidney) impairment are directed to

> limit dosage to ONE tablet a day.

> This is exactly what I was preaching earlier about.... society takes too

> many pills..... ones doctor isn't around to monitor dosage and meds from

> different doctors can severely distort the action of each other, if one

> doesn't know what the other is prescribing, not to mention what

> " harmless " OTC and/or herbs ( " natural " additives) are being ingested.

> Many people fall into the trap of thinking....if 2 of these green pills

> kill the pain and 2 of these red ones do too, then 4 green ones or 2

> greens and 2 reds must be twice as good or maybe if I take 3 greens and

> a red or1 green and 4 reds.....etc. etc.

> Anita I'm glad you are seeing your doctor to fess up to your

> medications... from what I have read you take entirely too many meds.

> (in my opinion) and we don't want to lose you....we just found you.

> Take some care of yourself. (gobbling pills like candy indicate a

> tendency towards addiction.)

> Know that my opinion is given lovingly as I pray for you and the many

> obstacles you seem to have in your life.

>

> love jerry

>

January 3, 2003

Anita,

Did they truely diagnose you with fibromyalgia? If so my tech with CFIDS

(see prior info) deals with this on a daily basis. She cannot and won't

take pain meds other than asprin. No anti-inflammitories help, but when I

gave her some Neurontin she felt better within 1 hour. Her rheumatologist

increased her dose and she has felt better (almost humane) since. I am very

curious about the fibromyalgia from a personal perspective. I see my tech's

dealings on a daily basis, but want other info. Basically, if it is a part

of CFIDS, I think I have it. N0 tests available except one to DX. So

frustrating, much like AIH.

Thanks Kat

Re: [ ] Medication

> >

> > Harper is absoluely right... you'r fooling wth dynamite..self medication

> > and mixing meds is serious busines. Taking any med " like candy " is

> > foolish. Warnings on Naramig specifically say not to take as a

> > prohalaxis

> > but only on the onset of migraine.The normal dose is 2.5mgs and one

> > should not take more than 2(two) 2.5 tabs in a 24 hr. period. If one

> > tablet doesn't relieve the pain it is highly unlikely another one will.

> > People with hepatic (liver) or renal (kidney) impairment are directed to

> > limit dosage to ONE tablet a day.

> > This is exactly what I was preaching earlier about.... society takes too

> > many pills..... ones doctor isn't around to monitor dosage and meds from

> > different doctors can severely distort the action of each other, if one

> > doesn't know what the other is prescribing, not to mention what

> > " harmless " OTC and/or herbs ( " natural " additives) are being ingested.

> > Many people fall into the trap of thinking....if 2 of these green pills

> > kill the pain and 2 of these red ones do too, then 4 green ones or 2

> > greens and 2 reds must be twice as good or maybe if I take 3 greens and

> > a red or1 green and 4 reds.....etc. etc.

> > Anita I'm glad you are seeing your doctor to fess up to your

> > medications... from what I have read you take entirely too many meds.

> > (in my opinion) and we don't want to lose you....we just found you.

> > Take some care of yourself. (gobbling pills like candy indicate a

> > tendency towards addiction.)

> > Know that my opinion is given lovingly as I pray for you and the many

> > obstacles you seem to have in your life.

> >

> > love jerry

> >

January 3, 2003

hi kat, yes i was diagnosed with fibromyalgia. a blessing really because the

doctor i saw sent me for loads of blood tests. thats how i ended up at the

liver clinic. the rest is history as they say. i cant take aspirin or

anti-inflammitories as they affect my asthma. what is neurontin, does it have a

different name. what is cfids. there is a way to diagnose fibromyalgia. if

you put pressure on certain parts of the body it will hurt a little bit in

everyone, but with fibromyalgia it hurts much more. they put me on

amytriptaline for the pain, to be taken a t night. to wake me up in the morning

i have to take 60mgs of prozac. hope this helps.

love

anita (the witch)

>

> From: " Kris Kingery " <mountainkat@...>

> Date: Fri 03/Jan/2003 10:32 GMT

> < >

> Subject: Re: Re: [ ] Medication

>

> Anita,

> Did they truely diagnose you with fibromyalgia? If so my tech with CFIDS

> (see prior info) deals with this on a daily basis. She cannot and won't

> take pain meds other than asprin. No anti-inflammitories help, but when I

> gave her some Neurontin she felt better within 1 hour. Her rheumatologist

> increased her dose and she has felt better (almost humane) since. I am very

> curious about the fibromyalgia from a personal perspective. I see my tech's

> dealings on a daily basis, but want other info. Basically, if it is a part

> of CFIDS, I think I have it. N0 tests available except one to DX. So

> frustrating, much like AIH.

> Thanks Kat

> Re: [ ] Medication

> > >

> > > Harper is absoluely right... you'r fooling wth dynamite..self medication

> > > and mixing meds is serious busines. Taking any med " like candy " is

> > > foolish. Warnings on Naramig specifically say not to take as a

> > > prohalaxis

> > > but only on the onset of migraine.The normal dose is 2.5mgs and one

> > > should not take more than 2(two) 2.5 tabs in a 24 hr. period. If one

> > > tablet doesn't relieve the pain it is highly unlikely another one will.

> > > People with hepatic (liver) or renal (kidney) impairment are directed to

> > > limit dosage to ONE tablet a day.

> > > This is exactly what I was preaching earlier about.... society takes too

> > > many pills..... ones doctor isn't around to monitor dosage and meds from

> > > different doctors can severely distort the action of each other, if one

> > > doesn't know what the other is prescribing, not to mention what

> > > " harmless " OTC and/or herbs ( " natural " additives) are being ingested.

> > > Many people fall into the trap of thinking....if 2 of these green pills

> > > kill the pain and 2 of these red ones do too, then 4 green ones or 2

> > > greens and 2 reds must be twice as good or maybe if I take 3 greens and

> > > a red or1 green and 4 reds.....etc. etc.

> > > Anita I'm glad you are seeing your doctor to fess up to your

> > > medications... from what I have read you take entirely too many meds.

> > > (in my opinion) and we don't want to lose you....we just found you.

> > > Take some care of yourself. (gobbling pills like candy indicate a

> > > tendency towards addiction.)

> > > Know that my opinion is given lovingly as I pray for you and the many

> > > obstacles you seem to have in your life.

> > >

> > > love jerry

> > >

May 31, 2003

Allida,

You seem to be very wise at how to deal with these doctors. Was that

a learned response or were you just born that wise! Your

suggestions, while not addressed to me are going to help my case

immensely. I appreciate them so much - now did you call that doc?

Still worrying,

Carole K

July 29, 2003

Dear :

I take percocet for chronic pain and there are many times where I

hardly notice it at all and other times that I am almost in a daze

from how hard it hits me. Some days I recover from it better than

others, too. Sometimes when I get up in the morning, I feel all

grogged out from them and other mornings I'm just fine. Makes me

wonder about the quality of the pills sometimes, too. I suppose

there are a lot of outside factors like what we had to eat with it,

or things like that, but it sure is an anomaly.

Lonnie

July 29, 2003

Lonnie,

It may have absolutely nothing to do with my liver that there are times the pain med hits me harder than usual. It never even occurred to me to think that it could be the quality of the pills! However, it seems that when the med does hit me harder, it is not just one pill. It seems to happen for a day or so. I cannot really relate it to how much I have eaten. I think because the liver disease is so new to me (diagnosed with AIH Jan 6, 03) I tend to think that many things going on are related to my liver, when in reality they may have nothing at all to do with my liver!

Thanks for letting me know that I'm not the only one that can have the pain meds affect me differently at different times.

W

January 6, 2004

I would like to know if there is anyone else out there who has been on long

time antibiotics and has not been cured. I was on 3000mg of Ampicillin for

18mo. The doctor then put me on Rocephin 1Gm. IM I have been on it now for

15mo. He also has me for about the last eight months on the weekends taking

flagyl to kill cysts that hold the spiroketes in, to open them up so they

can be killed. He gave me a manual about lyme disease the last time I went

to see him telling me about lyme disease. It says with oral antibiotics

after 12-18 months of treatment you should be well, and with Im after 8-12

Months you should be well. I don't understand why I'm not any comments. He

has tried me on Levaquin, I couldn't tolerate it and he tried another I

couln't tolerate.

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January 7, 2004

-

Everyone is individual so it's hard to tell why you would have a

reaction or not be cured by the time a pamphlet says. I have heard of

many people taking longer...much longer...than that arbitrary amount of

time; me for one ;-)

My Dr was pretty successful in pulsing different treatments of mixtures

of antibiotics over a year and a half. I was doing pretty well until I

went on IV Rocephin for 12 weeks and suffered a setback. I am now on IM

Bicillin for 10 weeks and hopeful to get back to where I was at least.

The only advice I'd strongly give is to be sure that your doctor is

testing your gall bladder and liver function while on Rocephin. Also

it's really important for you and all of us on antibiotics to be on a

good probiotic (preferably a fresh one from the health food store) or at

least acidophilus from a live culture yogurt.

These drugs can throw your system way off and cause an overgrowth of

yeast and stomach problems.

It's also worthwhile checking your diet and trying to cut refined sugars

and white carbs out if possible.

Anyway, remember that you are individual and no one has done enough

research on this disease to know how long it should last or about cure

vs. remission etc...All you can do is find out what different

Doctors/patients are doing and talk to your doctor about it. There is no

real timeline, unfortunately.

Good luck and feel well,

Melina

[ ] Re: Medication

I would like to know if there is anyone else out there who has been on

long

time antibiotics and has not been cured. I was on 3000mg of Ampicillin

for

18mo. The doctor then put me on Rocephin 1Gm. IM I have been on it now

for

15mo. He also has me for about the last eight months on the weekends

taking

flagyl to kill cysts that hold the spiroketes in, to open them up so

they

can be killed. He gave me a manual about lyme disease the last time I

went

to see him telling me about lyme disease. It says with oral antibiotics

after 12-18 months of treatment you should be well, and with Im after

8-12

Months you should be well. I don't understand why I'm not any comments.

He

has tried me on Levaquin, I couldn't tolerate it and he tried another I

couln't tolerate.

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January 7, 2004

Are you seeing a lyme literate dr or someone other speciality like infectious

diseases? JMHO, but only lyme drs who specialize really know what they are

doing.

I have been on abx for 3 yrs now. I tried the levaquin as I had another

infection, but they stated that one really won't have much effect on lyme.