Re: Needing larger doses of medicine.

[Guest guest]

Thank God for the AP because I sure as heck wouldn't want to increase on

methotrexate. I noticed my first rheumy was quickly increasing doses on that

and I really had a hard time at 10mg. I know some take or took more; the day

after taking the mxt. I would be so foggy and exhausted, it was a planned

non-functional day. I hated Mondays (I take mxt. on Sundays so I could have

my Sat. nights). Sad thing is that when I was on that dosage, I had a friend

going through chemo for cancer and we both looked like s_____. He passed

away a month ago yesterday.

Next week I am seeing Dr. Trentham and am expecting he will say I can now

totally stop the mxt. while continuing with the Minocin. This is a fairly

momentous point in my AP and I'm psyched! My only problem at this point is I

have a bad habit over the past few weeks of forgetting to take one of the

Minocin doses - imagine that, actually forgetting to take my meds for this!

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]

Delaine,

That seems to be how it works. I started off with 3 tablets a week and six

months later needed 6, then when he insisted I take 9 about 6 months after

that, and add Sulphasalazine, I said " not " and fired him. My gp told me if

I took Metho I wouldn't know if the AP was working. My RD hated AP.

Bev

>

> Has anyone else with RA noticed that methotrexate, arava, etc.

> seems to lose its effectiveness and that larger and larger doses

> are needed to be taken to get the desired results?

>

> Delaine

> Key West

>

>

[Guest guest]

Hi Delaine, my name is Skip and I have been on the AP for about 18 mos. now.

Prior to that I have been on all of the conventional drugs, plaquenil,

methotrexate, sulfasalazine, prednisone, and gold. They all gradually need

larger doses and eventually quit working and in the meantime tear down your

organs that were functioning correctly. My blood counts among other things

went downhill. Those meds only cover the symptons and do not do anything to

correct the condition.

Regards,

Skip

rheumatic Needing larger doses of medicine.

> From: Jim & Delaine Lowry <keywest@...>

>

> Has anyone else with RA noticed that methotrexate, arava, etc.

> seems to lose its effectiveness and that larger and larger doses

> are needed to be taken to get the desired results?

>

> Delaine

> Key West

>

>

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

> 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/_/532797/_/951943359/

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

>

>

>

[Guest guest]

I'm not quite sure what to think of this comment. I think metho can be

potentially harmful, but that depends on the individual and their tolerance

for it. Some can't tolerate it at all, whereas others can take high dosages

for years and not be bothered. I have been taking it since September of '99

and feel 90% improved - in fact I stopped my Nsaids 2 weeks ago and can't

tell a difference and have now started on an exercise program for my still

somewhat stiff shoulders. I still take my mino MWF, but the metho turned me

around

and I'm only at 12.5mg ( I started at 10). I doubt that the next doc will

push me higher as I am quite obviously doing better.

As for damage, maybe, but we all listen to our own bodies and I can tell by

the way I feel that I am doing much better, so if I am being damaged

underneath this " bandaid " , I shudder to think what was going on with all the

the pain I was in before metho.

It was intolerable for an active person and to watch my muscles in my legs

just

waste away was for me a sign of a disease rip roaring along. So slowing it

down or halting it with metho seems to have been a good choice for me. If I

am hurting my internal organs, hopefully my docs will catch it in time via

my 6 weeks blood tests. Hopefully, I can start to reduce the dosage now and

maybe just stay on the mino - that will be discussed with my docs. I am

interested to see what would happen if I were to cut back, but that's a

decision I want to make with a doctor.

Lots of folks are on prednisone - that's no easy drug either, yet that seems

to get less " hate " mail. Wonder why? I'd take my chances with metho, me

thinks, rather than climb aboard the prednisone train and have to worry

about getting off of it at the end of the line. At any rate, hope that all

of these drugs are short term things for us and just temper the raging that

is going on till the mino can do it's job.

In the meantime, I am trying to take less and less of the many alternative

meds out there as I agree with Geoff that after a while you can't figure out

what is helping you and the next thing you know, you're just pouring money

down the drain.

my .02

Mark

http://Mark_Holmes.tripod.com

Virginia - SW

RA 4/98 AP 7/98

Minocycline (Lederle generic) 100mg 2x/day MWF;Methotrexate (12.5mg/once

weekly); folic acid (1 mg/day); Zone Diet;;Fish Oil(9

caps/day);acidopholus;Milk Thistle;Multi-Vit

ICQ 18123139

AOL IM - ATHiker95

rheumatic Needing larger doses of medicine.

> From: " Briarwood " <briarwood@...>

>

>

> Babs,

> I had incredible success with Methotrexate. My RD would check my

knuckles

> for nodules at each visit (every 6 months) and they would be fine. I

> didn't know the damage it could do til I jointed this group because your

RD

> sure won't tell you. The liver tests you have to get are a clue though.

> I never felt ill taking Methotrexate.

> About skipping your meds, I should have taken my Minocin today but we are

> having problems with a tenant and I was so wound up I realized tonight I

> forgot to take this mornings and tonights, so I'll not bother til Friday.

> I am finding I function better and have less stiffness with the MWF right

> now.

>

> Bev

> RA '94

> AP Oct/98

>

>

>

> > non-functional day. I hated Mondays (I take mxt. on Sundays so I could

> have

> > my Sat. nights). Sad thing is that when I was on that dosage, I had a

> friend

> > going through chemo for cancer and we both looked like s_____. He

passed

> > away a month ago yesterday.

> >

> > Next week I am seeing Dr. Trentham and am expecting he will say I can

now

> > totally stop the mxt. while continuing with the Minocin. This is a

fairly

> > momentous point in my AP and I'm psyched! My only problem at this point

> is I

> > have a bad habit over the past few weeks of forgetting to take one of

the

> > Minocin doses - imagine that, actually forgetting to take my meds for

> this!

> >

>

>

>

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

> GET A NEXTCARD VISA, in 30 seconds! Get rates as low as 2.9%

> Intro or 9.9% Fixed APR and no hidden fees. Apply NOW!

> 1/936/0/_/532797/_/951975499/

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

>

>

[Guest guest]

> I'm not quite sure what to think of this comment. I think metho can be

> potentially harmful, but that depends on the individual and their

tolerance

> for it. Some can't tolerate it at all, whereas others can take high

dosages

> for years and not be bothered. I have been taking it since September of

'99

> and feel 90% improved - in fact I stopped my Nsaids 2 weeks ago and can't

> tell a difference and have now started on an exercise program for my still

> somewhat stiff shoulders. I still take my mino MWF, but the metho turned

me

> around

> and I'm only at 12.5mg ( I started at 10). I doubt that the next doc will

> push me higher as I am quite obviously doing better.

I was reassured also by my RD that it was a low dose, much lower than cancer

patients take, but he kept increasing it because there comes a time, in my

experience, when your body becomes accustomed to it and you need to have

more. The fact that at every increase I had to have weekly liver tests,

when health care dollars up here are so sacred spoke volumes to me. I

didn't have any adverse reactions to it but on the other hand when you are

first diagnosed and they give you Metho and anti inflams and you have new

symptoms you have a hard time pinpointing which drug if any, is causing a

reaction. Then when you have a defensive RD who doesn't believe fevers are

part of RA would you trust him to believe Metho was a problem. I know this

now but at the time I thought he was God. He gives you a good exam and is

a kind thoughtful man but just not a believer of Minocycline.

Mark, Metho worked for me. It is just I feel more comfortable with

Minocycline. I would take it again if there was no alternative.

Bev

> As for damage, maybe, but we all listen to our own bodies and I can tell

by

> the way I feel that I am doing much better, so if I am being damaged

> underneath this " bandaid " , I shudder to think what was going on with all

the

> the pain I was in before metho.

> It was intolerable for an active person and to watch my muscles in my legs

> just

> waste away was for me a sign of a disease rip roaring along. So slowing

it

> down or halting it with metho seems to have been a good choice for me. If

I

> am hurting my internal organs, hopefully my docs will catch it in time via

> my 6 weeks blood tests. Hopefully, I can start to reduce the dosage now

and

> maybe just stay on the mino - that will be discussed with my docs. I am

> interested to see what would happen if I were to cut back, but that's a

> decision I want to make with a doctor.

>

> Lots of folks are on prednisone - that's no easy drug either, yet that

seems

> to get less " hate " mail. Wonder why? I'd take my chances with metho, me

> thinks, rather than climb aboard the prednisone train and have to worry

> about getting off of it at the end of the line. At any rate, hope that

all

> of these drugs are short term things for us and just temper the raging

that

> is going on till the mino can do it's job.

>

> In the meantime, I am trying to take less and less of the many alternative

> meds out there as I agree with Geoff that after a while you can't figure

out

> what is helping you and the next thing you know, you're just pouring money

> down the drain.

>

> my .02

>

> Mark

> http://Mark_Holmes.tripod.com

> Virginia - SW

> RA 4/98 AP 7/98

> Minocycline (Lederle generic) 100mg 2x/day MWF;Methotrexate (12.5mg/once

> weekly); folic acid (1 mg/day); Zone Diet;;Fish Oil(9

> caps/day);acidopholus;Milk Thistle;Multi-Vit

> ICQ 18123139

> AOL IM - ATHiker95

>

> rheumatic Needing larger doses of medicine.

>

>

> > From: " Briarwood " <briarwood@...>

> >

> >

> > Babs,

> > I had incredible success with Methotrexate. My RD would check my

> knuckles

> > for nodules at each visit (every 6 months) and they would be fine. I

> > didn't know the damage it could do til I jointed this group because your

> RD

> > sure won't tell you. The liver tests you have to get are a clue

though.

> > I never felt ill taking Methotrexate.

> > About skipping your meds, I should have taken my Minocin today but we

are

> > having problems with a tenant and I was so wound up I realized tonight I

> > forgot to take this mornings and tonights, so I'll not bother til

Friday.

> > I am finding I function better and have less stiffness with the MWF

right

> > now.

> >

> > Bev

> > RA '94

> > AP Oct/98

> >

> >

> >

> > > non-functional day. I hated Mondays (I take mxt. on Sundays so I

could

> > have

> > > my Sat. nights). Sad thing is that when I was on that dosage, I had a

> > friend

> > > going through chemo for cancer and we both looked like s_____. He

> passed

> > > away a month ago yesterday.

> > >

> > > Next week I am seeing Dr. Trentham and am expecting he will say I can

> now

> > > totally stop the mxt. while continuing with the Minocin. This is a

> fairly

> > > momentous point in my AP and I'm psyched! My only problem at this

point

> > is I

> > > have a bad habit over the past few weeks of forgetting to take one of

> the

> > > Minocin doses - imagine that, actually forgetting to take my meds for

> > this!

> > >

> >

> >

> >

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

> > GET A NEXTCARD VISA, in 30 seconds! Get rates as low as 2.9%

> > Intro or 9.9% Fixed APR and no hidden fees. Apply NOW!

> > 1/936/0/_/532797/_/951975499/

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

> >

> >

>

>

[Guest guest]

My rheumatologist tried increasing my methotrexate because he said high

doses were necessary for the drug to work, but I couldn't tolerate it.

After reducing somewhat, he eventually decided methotrexate had stopped

having any effect on me (this was after 7 years). I had major joint damage

while on it.

(RA 23+ years, AP 2 years)

> From: Jim & Delaine Lowry <keywest@...>

>

> Has anyone else with RA noticed that methotrexate, arava, etc.

> seems to lose its effectiveness and that larger and larger doses

> are needed to be taken to get the desired results?

>

> Delaine

> Key West

>

>

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

> 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/_/532797/_/951943359/

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

>

>

>

[Guest guest]

Hi Mark, I agree with you on the hate mail point. Pred and Metho,

gold,plaquenil. They are all bad. They just cover the symptoms and let you

feel better. The damage they can cause is never discussed with us by our

regular doctors. The enclosed warning sheet that I got with my metho was

scary to say the least. But like you I felt so miserable I took it any way.

But I did quit because I also was just half sick 5 days out of 7. I got

sick and tired of being sick and tired. When it's effectiveness quits then

you are left to figure out something else. I guess all one can say for this

topic if to each his own.

I am sincerely glad you are doing better.

Skip

rheumatic Needing larger doses of medicine.

>

>

> > From: " Briarwood " <briarwood@...>

> >

> >

> > Babs,

> > I had incredible success with Methotrexate. My RD would check my

> knuckles

> > for nodules at each visit (every 6 months) and they would be fine. I

> > didn't know the damage it could do til I jointed this group because your

> RD

> > sure won't tell you. The liver tests you have to get are a clue

though.

> > I never felt ill taking Methotrexate.

> > About skipping your meds, I should have taken my Minocin today but we

are

> > having problems with a tenant and I was so wound up I realized tonight I

> > forgot to take this mornings and tonights, so I'll not bother til

Friday.

> > I am finding I function better and have less stiffness with the MWF

right

> > now.

> >

> > Bev

> > RA '94

> > AP Oct/98

> >

> >

> >

> > > non-functional day. I hated Mondays (I take mxt. on Sundays so I

could

> > have

> > > my Sat. nights). Sad thing is that when I was on that dosage, I had a

> > friend

> > > going through chemo for cancer and we both looked like s_____. He

> passed

> > > away a month ago yesterday.

> > >

> > > Next week I am seeing Dr. Trentham and am expecting he will say I can

> now

> > > totally stop the mxt. while continuing with the Minocin. This is a

> fairly

> > > momentous point in my AP and I'm psyched! My only problem at this

point

> > is I

> > > have a bad habit over the past few weeks of forgetting to take one of

> the

> > > Minocin doses - imagine that, actually forgetting to take my meds for

> > this!

> > >

> >

> >

> >

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

> > GET A NEXTCARD VISA, in 30 seconds! Get rates as low as 2.9%

> > Intro or 9.9% Fixed APR and no hidden fees. Apply NOW!

> > 1/936/0/_/532797/_/951975499/

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

> >

> >

>

>

>

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

> GET A NEXTCARD VISA, in 30 seconds! Get rates as low as 0.0%

> Intro or 9.9% Fixed APR and no hidden fees. Apply NOW!

> 1/937/0/_/532797/_/951977861/

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

>

>

>

[Guest guest]

Hi ,

I know what you are talking about. It leads you to believe you are getting

better, but it really just covers up the fact that you are getting worse.

Skip

Re: rheumatic Needing larger doses of medicine.

> From: " Ken and " <kglg@...>

>

> My rheumatologist tried increasing my methotrexate because he said high

> doses were necessary for the drug to work, but I couldn't tolerate it.

> After reducing somewhat, he eventually decided methotrexate had stopped

> having any effect on me (this was after 7 years). I had major joint

damage

> while on it.

>

>

> (RA 23+ years, AP 2 years)

>

> > From: Jim & Delaine Lowry <keywest@...>

> >

> > Has anyone else with RA noticed that methotrexate, arava, etc.

> > seems to lose its effectiveness and that larger and larger doses

> > are needed to be taken to get the desired results?

> >

> > Delaine

> > Key West

> >

> >

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

> > 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/_/532797/_/951943359/

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

> >

> >

> >

>

>

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

> GET A NEXTCARD VISA, in 30 seconds! Get rates

> as low as 0.0% Intro APR and no hidden fees.

> Apply NOW!

> 1/975/0/_/532797/_/952006589/

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

>

>

>

[Guest guest]

> Sometimes I did, Mark, but usually I did not have major pain etc. until my

> joints, especially my knees and hip became so bad that they needed

> replacements. As an example, I was always told that my hip joints were

good

> and did not show any signs of problems. In January 93 (3 years after

> starting methotrexate) I noticed a clicking in my hip, but no pain. By

> August 93, I was told I needed a hip replacement. The fact that I stayed

on

> it for 7 years also indicates that I did not have a LOT of pain as a rule.

> My hands are another example. I had had noticeable changes in some joints

> in my hands. But 1 1/2 to 2 years after starting methotrexate, I noticed

> that I seemed to have difficulty getting my fingers around a glass to hold

> it securely. Then I gradually began to become aware that most of my

fingers

> were actually getting shorter. Apparently it is not a common effect of

RA,

> but it can happen.

>

> I realize everyone is different and that we can all react differently to

> meds. And that what happened to me won't necessarily happen to anyone

else.

> My concern is that these changes seemed to occur without my awareness

> because I did not have extreme pain etc. I suspect the symptoms were

being

> masked by the methotrexate. I understand your decision for going on metho

> and I respect that. You are informed, and you want relief and you are

> feeling a lot better on methotrexate. I just don't want people to be

> complacent; I want people to be vigilant about what is/could be going on,

> and not to assume that because they're feeling better or don't feel a lot

of

> pain that they are safe and won't have any more damage and that they are

> magically protected just by taking metho. Methotrexate may work well for

> some people, but it didn't for me.

>

>

> (RA 23+ years, AP 2 years)

> Re: rheumatic Needing larger doses of medicine.

> >

> >

> > > From: " Ken and " <kglg@...>

> > >

> > > My rheumatologist tried increasing my methotrexate because he said

high

> > > doses were necessary for the drug to work, but I couldn't tolerate it.

> > > After reducing somewhat, he eventually decided methotrexate had

stopped

> > > having any effect on me (this was after 7 years). I had major joint

> > damage

> > > while on it.

> > >

> > >

> > > (RA 23+ years, AP 2 years)

> > >

> > > > From: Jim & Delaine Lowry <keywest@...>

> > > >

> > > > Has anyone else with RA noticed that methotrexate, arava, etc.

> > > > seems to lose its effectiveness and that larger and larger doses

> > > > are needed to be taken to get the desired results?

> > > >

> > > > Delaine

> > > > Key West

> > > >

> > > >

> > >

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

> > > > 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/_/532797/_/951943359/

> > >

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

> > > >

> > > >

> > > >

> > >

> > >

> >

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

> > > GET A NEXTCARD VISA, in 30 seconds! Get rates

> > > as low as 0.0% Intro APR and no hidden fees.

> > > Apply NOW!

> > > 1/975/0/_/532797/_/952006589/

> >

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

> > >

> > >

> >

> >

>