New kid on the block

[Guest guest]

Hi Limobabe,<br><br>Well get a new doc! for

sure.<br><br>I live in Texas, but there are websites out there

with doctor and support group links. On my site,

HappyHeppers <a href=http://clubs./clubs/happyheppers

target=new>http://clubs./clubs/happyheppers</a> you can

find plenty of links to help you. (And ignore the

heckler)<br><br>Good luck<br><br>alley

[Guest guest]

Thank you Alley, Set-up an appt today with a

gastro. I go on the 31st, so we'll see what happens. I

bookmarked your club, its pretty cool. Do you know of any

information groups or events coming up in So.

Cal.?<br>Thanks<br>Jacque

[Guest guest]

That's great Jacque! Look in those links, there'll be places that have links to

hep support groups in your area. I use Hep C Connection myself and get their

newsletter.<br><br>alley

[Guest guest]

>Hello Everyone from Downunder..

Hi from Up Here:-)

Lovely to see you join the list. I presume you are a member of LPNZ ? In

which case, you will know the fantastic Katy Sinclair:-)

>One Question I need help to answer my job invovle's alot of lifting of

>heavy plants plus 40 little boxes of wet potting mix.. Is that to heavy

>for a Achon to lift.. My lower back is causing me problems and sometimes

>I get sharp pains in my legs... I'm abit worried.. Could anyone out

>there help.. I be very greatful..

If I were you, I'd avoid ANY lifting! I'm Achon too, and I blame lifting

for both my spinal surgeries.

Sadly, in the job you are in, I doubt if you can get away with NOT lifting.

But, it really is quite dangerous.

Cheers from

Fred Short 'up here' in England:-)

[Guest guest]

Hi, meekrseekr. If you are going to be in this intimate family of people

gettting well, we have to be on a first name basis. I KNOW your mother did not

name you meekrseekr! If she did, I'd sure like to meet her! Welcome and you

have come to the right place. I did not say it is the easiest place to be if

you are not self disciplined but the right place if you are determined to get

well! That is not a put down as I am really doing some self searching at this

moment in how far I want to go in this diet, whether I want to go for CURE or

Remission. This entails stepping off a cliff without a net or safety rope,

other than the wisdom of those who have gone before us, with nothing more than

grit and a fierce, almost scary, determination and FAITH. I think the

mindset of belief is the greater part of the journey. I cannot advise you on

the dosage as I am on Minocin, MWF 2/day, one IV clindamycin monthly, and a

five day long 2/day IV treatment every six months. But you are RA and I am

scleraderma so that is why I cannot advise you. I am sure you will get a

number of great letters from the RAers here who will guide you. Get ready for

a heady ride here. Onelist is a wonderful source of information for you to

peruse and read, a steadfast source of encouragement from your friends who

will be here for you and also a great place of laughs and irreverence when that

particular medicinal format is needed. But we need for information about you

other than meekrseekr - is that nongeneric or do you have a sex assigned you?

Are you young like all of us on here or old? Are you flat on your back ill or

going into this disease gently? Are you wildly rich or tamely poor like most

of us? If you are wildly rich, I can guarantee you will have LOTS of friends

here. Again, welcome and I wish warm sun on your back and a return to perfect

health for you. Love,

MeekrSeekr@... wrote:

> From: MeekrSeekr@...

>

> I have rheumatoid arthritis and just started on minocycline. My concern is

> the dosage I take 100 mg 2xday. Is this the right dosage to start off on?

> Can anyone help me?

>

> ---------------------------

[Guest guest]

There seems to be two schools of thought on this as of late. Dr. Brown,

who pioneered this therapy, prescribed 100 mg. 2X MWF ( " pulsed dose " ) as

he felt this gave good progress in treating RA while minimizing the

associated side effects of taking long term antibiotics. He also tended

to ease people up to this dosage in order to minimize Herx reactions.

More recently, some doctors have started prescribing the dosage you are

on, i.e. 100 mg. 2X every day. I think part of the theory behind this

is that recent studies have used this dosage so doctors tend to follow

that plus I think there may be some of the " more is better " philosophy

behind it. I gather some people are able to tolerate this dosage quite

well and get good results while others just can't take that much mino

without serious repercussions, i.e. bad side effects or severe herx

reaction. I know I could not tolerate taking that high a dosage but if

you can, it might be okay for you. My advice would be to monitor how

you are doing and if you're doing okay, stick with it. If you start

having problems, let us know and maybe a lower dosage would be in

order. If you are taking this high a dosage, it is imperative that you

take a good probiotic religiously and be very careful of your diet,

particularly avoiding sugar and yeast products. Watch carefully for

signs of stomach problems, particularly diarrhea as that is a problem

you want to avoid. Good luck and I hope you feel better soon.

Hugs,

a Peden

MeekrSeekr@... wrote:

>

> From: MeekrSeekr@...

>

> I have rheumatoid arthritis and just started on minocycline. My concern is

> the dosage I take 100 mg 2xday. Is this the right dosage to start off on?

> Can anyone help me?

[Guest guest]

Hi: I am also on 100mg. minocycline 2xday and am doing very well on it. Dr.

Trentham (one of the drs. who participated in the research studies and a

Harvard Medical School professor) said that there is a greater chance of

remission if this dosage is started as early as possible. So far, I have had

continual improvement and no side effects. I have a sensitive stomache but

have had absolutely no problems with this dosage. Because I had previously

experienced hives with doxycycline, he was cautious and initially prescribed

50mg 2x day but increased it to the 100mg. three weeks later.

Are you on any other meds? When did your symptoms first begin, what were

they, and when were you diagnosed?

Babs

RA 8/98, DX 4/99, AP 11/99

200 mg. Minocin

2.5 mg. Methotrexate

112 mcg. Synthroid

2 mg. Hytrin

10 mg. Lipitor

Mestinon

Vits. & Misc. Suplmts.

[Guest guest]

> on my 50th birthday, happy birthday tome.

I have always been told after 50, everything falls down, off and stops working!

I am living proof of that, too!

> we were in Florida and I was given The New Arthritis Breakthrough

You need to go backto Florida and kiss the person who gave you this gift. If

only others could be so lucky to have that good a friend!

Today all I take is 100mg of minocycline 2xday and I took myself off relafenand

added 600mg. Ibuprofen 2xday. My best time of the day has a window ofabout 7

hrs

of very little to no discomfort at all. Yes, I am blessed.....

Way to go, . I don't use anything stronger than Tylenol or Motrin but that

is because my body won't tolerate it. This is probably a blessing to me.

Seven

hours of the day window is really good!

> Thank you for your response and support ,

>

> , you will be surprised that you will be support for someone else, too.

I

> do believe the whole thing is reciprocal. I will hope you will only have

good

> times and sunshine but you are probably going to experience the no-too-fun

> times too and you will know what to expect and be ready, if you can really be

> ready for that!

> Babs: Minocin since November.

Babs, I did not know you had only one month up on me! But your brain works so

well! By the way, how do you get all your messages to put the RA DX AP etc.

always on the bottom of your message? Don't tell me you type that thing each

time! I want to learn this. And you are almost off the Methotrexate. You

should take pride in that.

>

[Guest guest]

Hi ! Geoff Crenshaw here.

> Date: Sat, 19 Feb 2000 15:23:46 EST

> From: Babs56p@...

> Subject: New Kid on the Block

>

> From: MeekrSeekr

>

> Today all I take is 100mg of minocycline 2xday and I took myself off

relafen

> and added 600mg. Ibuprofen 2xday. My best time of the day has a

window of

> about 7 hrs of very little to no discomfort at all. Yes, I am

blessed.....

Next thing you need to do is get rid of the Ibuprofen. There are some

nasty complications, dependencies and adverse reactions that can -- and

in all cases DO -- attach to that drug.

Glad you've got a cooperative Doc. That seems to be 1/2 the battle.

Regards,

Geoff Crenshaw, ACC -----------------------

Captain Cook's Cruise Center ** Usual Disclaimers **

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

Why do I have hope?

Because I am under the blood of the Passover Lamb.

EXO 12:7-3 / MAR 14:24 / REV 12:11

ICQ 60333388

[Guest guest]

At 10:18 AM 2/23/00 -0800, Geoff Crenshaw wrote:

>From: " Geoff Crenshaw " <geoff@...>

>

>Hi ! Geoff Crenshaw here.

>Hi Geoff,

And just

as I was about the write the group and tell them how much better I feel

today because I stopped the Lodine Dr. Franco just put me on and went back

to my Ibuprofen.....800mg. x 2 per day. I feel human today, I can move

without every little joint in my body hurting. That is how I discovered it

the first time. I was with my sister in Chicago and got all sore from

traveling, jet lag, lifting, lugging etc etc. My NSAID (whichever I was on

then) was still packed. My sister had a 600 mg. Ibu. in her purse so I took

it. Felt better the next day than I had in quite some time. Kind of like

today, the difference between day and night. For some people it just works

but I've heard you advise against it time and time again. Why? Drs. have

been using it for years. Just curious. :-)

HUGS:)

Carol

>

>Next thing you need to do is get rid of the Ibuprofen. There are some

>nasty complications, dependencies and adverse reactions that can -- and

>in all cases DO -- attach to that drug.

>

>

>

>Regards,

>

>Geoff Crenshaw, ACC -----------------------

>Captain Cook's Cruise Center ** Usual Disclaimers **

> -----------------------

>Why do I have hope?

>Because I am under the blood of the Passover Lamb.

> EXO 12:7-3 / MAR 14:24 / REV 12:11

>

>ICQ 60333388

>

>

>

>------------------------------------------------------------------------

>Get your money connected @ OnMoney.com - the first Web site that lets you

>see, consolidate, and manage all of your finances all in one place.

>1/1636/0/_/_/_/951332620/

>------------------------------------------------------------------------

[Guest guest]

Yes, it helps to take all of those NSAIDS with food and it says so right on

the ibu bottle. I take tagament and it works okay. The one that has the

problem with it is Geoff and for some reason he says it is one of the worst

anti inflam one could use. I'm waiting for him to tell me why.

Carol

At 09:51 PM 2/23/00 -0500, Briarwood wrote:

>Carol,

>I know quite a few people who take Ibu without a problem. I wonder if it

>would help to take it with food. I take Ranitidine with my anti inflam

>for a stomach protector.

>

>Bev

>

>

>

>

> >

> >

[Guest guest]

> From: Carol <carscott@...>

> Date: Wed, 23 Feb 2000 18:02:57 -0800

> SC <sasc@...>

> Cc: rheumaticonelist

> Subject: Re: rheumatic Re: New Kid on the Block

>

> The only thing I have ever heard is that it (ibuprofen) is one of the worst

> ones for your stomach and I do believe that. If I take three of them per day

> (which is what is prescribed) within two to three days the lining of my

> stomach is all irritated and I have to lay off them. After my stomach

> explosion I ALWAYS have to take Tagement with them, but they don't even do the

> trick if I take three per day. Now one is just fine and two is okay. All I

> know is that it seems they work the best for me and that comes from experience

> of trying quite a few different ones. I'm curious as to what dangers they

> carry with them too. Carol

Funny, ibuprofen is the only standard NSAID my stomach/gut can handle at

all. I think we need to keep in mind that we all react differently.

Jean

[Guest guest]

I've been taking Relafen for quite some time now without much in the way of

stomach problems. I do take Cytotec though along with the Relafen. I havn't

heard anybody mention that drug or what interactions they have from it yet.

Anybody else in here taking Cytotec along with their antiinflammatory drugs?

So far I have no side effects from the Cytotec or the Relafen (that I know of)

Steve

[Guest guest]

Hi, Harry.

I got so screwed up on NSAIDs--tried a whole bunch of them, my doctor kept

telling me if I tried a few more, I might eventually find one I wasn't

sensitive to.

If you look at the list of what was availble 5 years ago, I probably tried

them all. He'd tell me things like " Lodine is easier on the stomach, we'll

try that next. " I'd wake up at 4 in the morning feeling like I had a hot

poker in my gut. I had tried most all the prescription drugs, and so we gave

up on my ever being able to use any NSAIDs.

Then I was at my mom's over a holiday weekend, in a lot of pain from the

trip, and she offered me ibuprofen. I had never tried it when the doctor had

given me all the prescrition drugs, so in desperation, I took some. I found

I could tolerate it for several days, even sometimes several weeks, without

the terrible stomach/gut pain the others gave me. This was often enough to

get me through a rough spot.

I have no doubt that different individuals have different sensitivities and

tolerances for different drugs. I just wonder what evidence there is that

iburofen is much worse than all the others.

Jean

> From: 410@...

> Date: Thu, 24 Feb 2000 02:43:37 EST

> elbows@...

> Subject: Re: FW: rheumatic Re: New Kid on the Block

>

> In a message dated 2/24/00 1:04:10 AM Eastern Standard Time,

> elbows@... writes:

>

>>

>> Funny, ibuprofen is the only standard NSAID my stomach/gut can handle at

>> all. I think we need to keep in mind that we all react differently.

>>

>> Jean

>>

> Hi Jean:

> Within 30 minutes after taking ibuprofen pains begin in my stomach. Did it

> every time until I finally wised up.

> Harry

>

[Guest guest]

Hi, Chris. We can't get codeine at all here except by prescription. It is a

pain reliever, not an antiflammatory, anyway, but I do not know what

paracetamol is. Can you shed a little light here? Maybe this is an Aussie

name for a drug we are familiar with.

Jean

> From: " Adlard " <cadlard@...>

> Reply-cadlard@...

> Date: Thu, 24 Feb 2000 06:49:41 GMT

> rheumaticonelist

> Subject: Re: FW: rheumatic Re: New Kid on the Block

>

> From: " Adlard " <cadlard@...>

>

> Janene's doctor says that codeine plus paracetamol doesn't harm the stomach.

> Tablets containing more than 10mg codeine are only by prescription here.

>

> Chris.

[Guest guest]

Re: rheumatic Re: New Kid on the Block

>Hi Geoff,

> And just

> as I was about the write the group and tell them how much better I

feel

> today because I stopped the Lodine Dr. Franco just put me on and went

back

> to my Ibuprofen.....800mg. x 2 per day. I feel human today, I can move

(snip)

> today, the difference between day and night. For some people it just

works

> but I've heard you advise against it time and time again. Why? Drs.

have

> been using it for years. Just curious. :-)

All NSAID's, aspirin, & aspirin derivatives cause gastric bleeding and

micro ulceration in the digestive tract. In those who tolerate them

without " apparent " problems it is (probably) due to the ulcerations

healing quickly and releasing inadequate blood to be readily apparent in

the stool. Extended use of ibuprofens can also lead to complications

with the adrenal glands, various organs and a host of other issues

involving bodily regulatory mechanisms for cellular fluid

retention/balance levels, salt processing, etc., and the immune system.

Short-term use normally proceeds without complication, short-term being

defined as a few days. Long-term use carries risks which must be

evaluated against both the apparent efficacy and costs. It could be that

it is your best choice not because it is the best thing for you, but it

is the most affordable or least risky under your individual

circumstances.

You can find a fuller discourse on ibuprofen in particular, NSAID's in

general, and their complications, dosage implications, etc., in a PDR

available at your local lending library reference desk or in (most)

physicians offices/hospitals/etc.

On a personal note, before doing the 80+mg/prednisone daily routine that

I went through, I had been on a routine of several GRAMS (not mg) of

Ibuprofen daily for about one year. (Whatever the max dose is - can't

remember if it's 3.5G or 6G, but that's where I was.) After long-term

dosages of that drug, I had to wean off of it just like coming off pred

(but a WHOLE lot easier). Having gotten off of it, I was seemingly fine

until visiting a doc who took a look at my messed up neck (which he

didn't ID as being a dislocated C-1!) and told me to go back on the

ibuprofen. I took ONE pill and was bedridden w/in hours as my body

reacted violently --- which is when I was put on Prednisone.

These " balancing " acts we go through trying to control the " symptoms "

can have dire consequences as often the " symptoms " are our body's way of

fighting back. (Fevers are an excellent example.) Unfortunately for us

all (me too!) with these rheumatic diseases the " symptoms " can be so

severe that we won't survive without some sort of intervention, and thus

we must all, at times, revert to some serious drugs such as NSAID's,

corticosteroids, etc.

Just be very careful, and very wary - please. Ibuprofen is NOT like

vitamin C, you can't take it with gay abandon forever. It's potential

for damage is very serious and it should be handled very, very

carefully.

A drug being available OTC does NOT make it " safe " ... it makes it a

better money maker.

Regards,

Geoff Crenshaw, ACC -----------------------

Captain Cook's Cruise Center ** Usual Disclaimers **

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

Why do I have hope?

Because I am under the blood of the Passover Lamb.

EXO 12:7-3 / MAR 14:24 / REV 12:11

ICQ 60333388

[Guest guest]

Just wanted to jump in here and tell you that if I take ibu along with

tagament I have absolutely no problem with it.

Carol

At 10:01 AM 2/24/00 -0600, Elbows wrote:

>From: Elbows <elbows@...>

>

>Hi, Harry.

>

>I got so screwed up on NSAIDs--tried a whole bunch of them, my doctor kept

>telling me if I tried a few more, I might eventually find one I wasn't

>sensitive to.

>

>

>

>

>------------------------------------------------------------------------

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>1/1830/0/_/532797/_/951408339/

>------------------------------------------------------------------------

[Guest guest]

Hi Carol!

> Message: 2

> Date: Wed, 23 Feb 2000 21:14:21 -0800

> From: Carol <carscott@...>

> Subject: Re: Re: New Kid on the Block

>

> Yes, it helps to take all of those NSAIDS with food and it says so

right on

> the ibu bottle. I take tagament and it works okay. The one that has

the

> problem with it is Geoff and for some reason he says it is one of the

worst

> anti inflam one could use. I'm waiting for him to tell me why.

> Carol

Actually as you've probably figured out by now from my earlier post

today on this, I tolerated ibuprofen with apparent aplomb for a full

year. It wasn't until I had the " kick-back " reaction that I had a

problem and even then I didn't make the association that's listed in the

literature. However... the information that has been put forth on this

list combined with the PDR (I actually bought one because of the

ibuprofen), continuing revelations from the manufacturers and personal

experience in retrospect are what gave rise to my plea for caution.

Regards,

Geoff Crenshaw, ACC -----------------------

Captain Cook's Cruise Center ** Usual Disclaimers **

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

Why do I have hope?

Because I am under the blood of the Passover Lamb.

EXO 12:7-3 / MAR 14:24 / REV 12:11

ICQ 60333388

[Guest guest]

>Hi Geoff,

Well see there......a whole bunch of information I'd never heard about it.

Thank you for sharing that with me and the group. I'll be doing some more

research now. I'm wondering if it is the only one that also can affect your

adrenal glands other than prednisone of course. Well, like I said....on

with the research. I went back to the Lodine the next day anyway as I told

Dr. Franco I'd give it a good try.

HUGS:-)

Carol

>All NSAID's, aspirin, & aspirin derivatives cause gastric bleeding and

>micro ulceration in the digestive tract. In those who tolerate them

>without " apparent " problems it is (probably) due to the ulcerations

>healing quickly and releasing inadequate blood to be readily apparent in

>the stool. Extended use of ibuprofens can also lead to complications

>with the adrenal glands, various organs and a host of other issues

>involving bodily regulatory mechanisms for cellular fluid

>retention/balance levels, salt processing, etc., and the immune system.

>

>Short-term use normally proceeds without complication, short-term being

>defined as a few days. Long-term use carries risks which must be

>evaluated against both the apparent efficacy and costs. It could be that

>it is your best choice not because it is the best thing for you, but it

>is the most affordable or least risky under your individual

>circumstances.

>

>You can find a fuller discourse on ibuprofen in particular, NSAID's in

>general, and their complications, dosage implications, etc., in a PDR

>available at your local lending library reference desk or in (most)

>physicians offices/hospitals/etc.

>

>On a personal note, before doing the 80+mg/prednisone daily routine that

>I went through, I had been on a routine of several GRAMS (not mg) of

>Ibuprofen daily for about one year. (Whatever the max dose is - can't

>remember if it's 3.5G or 6G, but that's where I was.) After long-term

>dosages of that drug, I had to wean off of it just like coming off pred

>(but a WHOLE lot easier). Having gotten off of it, I was seemingly fine

>until visiting a doc who took a look at my messed up neck (which he

>didn't ID as being a dislocated C-1!) and told me to go back on the

>ibuprofen. I took ONE pill and was bedridden w/in hours as my body

>reacted violently --- which is when I was put on Prednisone.

>

>These " balancing " acts we go through trying to control the " symptoms "

>can have dire consequences as often the " symptoms " are our body's way of

>fighting back. (Fevers are an excellent example.) Unfortunately for us

>all (me too!) with these rheumatic diseases the " symptoms " can be so

>severe that we won't survive without some sort of intervention, and thus

>we must all, at times, revert to some serious drugs such as NSAID's,

>corticosteroids, etc.

>

>Just be very careful, and very wary - please. Ibuprofen is NOT like

>vitamin C, you can't take it with gay abandon forever. It's potential

>for damage is very serious and it should be handled very, very

>carefully.

>

>A drug being available OTC does NOT make it " safe " ... it makes it a

>better money maker.

>

>Regards,

>

>Geoff Crenshaw, ACC -----------------------

>Captain Cook's Cruise Center ** Usual Disclaimers **

> -----------------------

>Why do I have hope?

>Because I am under the blood of the Passover Lamb.

> EXO 12:7-3 / MAR 14:24 / REV 12:11

>

>ICQ 60333388

[Guest guest]

Hi , welcome aboard i'm fairly a new member

myself.theres a whole great bunch of heppers here.I have been

diagnosed 4yrs ago and 2yrs ago on combo tretment (non-

responder) and waiting for trxp. been waitng a yearr now.

[Guest guest]

Dear Phil,<br>Thanks for your reply. I found out

that I had Hep C about 5 years ago. When I started

treatment my PCR was 2.5 Million. I was on Mono for 5

months then went to combo for 17 months in a row! Was

undetectable but after 30 days relapsed. Now my PCR is 12.5

Million! Like sturring up a bee hive. The virus got

pissed, mutated, and kept multipling.

[Guest guest]

Bonnie:

Welcome to this group. Do you are a family member have AIH?

-Clyde

--

=========================================================+

Help save a life, become an organ and tissue donor today.|

=========================================================+

[Guest guest]

Hello Bonny,

Welcome here!

Greetings Loes, aih, The Netherlands

[ ] new kid on the block

> Hi everyone,

>

> My name is Bonnie and I'm new to this support link. I haven't a clue

> what I'm doing on this computer so...just thought I'd give it a try.

> Please let me know if you receive this message so I can join in.

>

> Thanks!!

>

>

>

>

[Guest guest]

Welcome to the group Bonnie. My name is Genny and my 27 year old daughter,

Jodi was diagnosed with AIH one year a go and was put of the transplant list

just before Christmas. I am being tested to be a living donor for her in

Miami. These are great people and we will do what ever we can to help. Take

care and God bless, Genny/Jodi's Mom/FL

[Guest guest]

Dear Rod,

My name is . I too have PBC. (stage 1-2)

The drug you asked about is called URSO. It is made by Axcan Scandicam, Inc.

I talked to representatives from this company at our recent PBCers

conference, and I was told that they do have a patient assistance program for

the drug. You can get this information from their website.

I don't know if you know this, but men with PBC are in the minority (5%). I

forwarded your e-mail to another man with PBC ( Klarin). Hopefully you

will be hearing from him soon. He has a wealth of information.

You will find a great deal of support and information from this

. You may also want to subscribe to the PBCers.com digest.

Are you far from Seattle? I know that there are several PBCers who see

wonderful Hepatologists there.

Good Luck to you.