Re: Methotrexate and side effects and Anxiety

[Guest guest]

In a message dated 10/6/2008 3:37:34 A.M. Central Daylight Time,

chris65peth@... writes:

This is just my own humble opinion, but I feel if I were the doc I would start

prescribing lower and work up, if tolerated,to optimum tailored dose and I

believe would give the person more confidence and control of managing their

illness,and trust in the partnership with their doctor at the for many scary

time of starting DMARDs.

When Bob went in and they started him really low, I wondered what would have

happened if my doc had done that. I am very susceptible to side effects and a

slow introduction may have worked much better.

So maybe you are wondering why I still take it? I went from being unablle to

get out of a chair or off the toilet to being able to live almost a normal life

-- except for the fatigue.

dd

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[Guest guest]

Excellent post. I have to agree with you. Most of the Rheummy's I

have had have been quite the cowboy! LOL Then again I do live in

Texas. They are VERY aggressive even after I explain that I do not

always react predictably to medication. That because at that time

just because I was about 150 lbs over weight does not mean I need a

dose for a 300 lbs person. Actually I need far less than I would need

at normal weight. I have asked that we start out slow. Only one med

at a time so I can tell what I am reacting too.

So far all but two rheummy's I have seen have treated my like I am a

total idiot. Granted I did not go to medical school. But this is MY

body and I KNOW it better than anyone else. Added to that I spent

quite a few years in college in nursing school and paramedic school

that I can read and understand most of the medical documents and ask

reasonably intelligent questions. Which I will add most of the docs

around here hate. They want you to be a good little sheep patient.

Do not ask questions and just shut up and do as I tell you.

So when I started having side effects I would call and report them to

get ignored. I started on 2 MTX pills per week. Got immediate side

effects. So my doc increased it to 3 and again to 4 pills. Saying

the increase would make me feel better. The side effects got worst

and I felt worst.

First round of oral MTX. My internal med doc pulled it when I had a

bad base of drug induced pneumonitis. I could not lay down, I could

not eat. I was coughing constantly and struggling to breath. I

called my rheummy and he said keep taking your meds...sounds like

allergies take Claritin and sudafed and we will see you in two months!!

I could barely walk into my internists office. When he saw me, gray,

with sores all over, dehydrated from vomiting and diarrhea and could

not get a whole sentence out with out violent coughing. He went into

a RAGE with the rheummy. The clinics are right next to each other.

Long story short....he is no longer with that clinic.

But I did try MTX again with injections at .4 to .6cc because rheummy

promised no GI side effects since it did not touch my stomach. Funny

thing the pharmacist said, BUNK! You can get GI Side effects. If

that was the case then surgery patients who get IV meds would not need

medication for nausea after surgery since we did not put medication

into the stomach. A real AH HAH! moment for me. I then realized I

had to take matters into my own hands as I had a doc that was NOT

looking out for my well welfare.

He was treating lab tests and x rays. He was not treating me. He

barely even talked to me and when I would try to start a conversation

he seemed annoyed I was asking questions or question my treatment plan.

The part that is really frustating for me is that I was on Arava with

NO side effects and no problems before I had to change to this

doc...he told me he does not like Arava its too dangerous. hmmm. I

got my labwork faithful and had no issues. So I went from compliant

and medically controlled to none compliant, out of control medically

and so ill I was sleeping on the bathroom floor because of diarrhea

and vomiting.

I am still in search of a decent doctor. rheummy's are very hard to

find. They are in very short supply and then you have insurance

limitations to deal with. Maybe someday I will find a decent doc. I

started with a wonderful doc who diagnosed me and then his contract

ended with the clinic and he moved away.

So you are right on the mark. I refused MTX. I have made it

clear I will NEVER take it again...and as far as I am concerned my

experience with the drug was that it was TOXIC to me even at low dosages.

Toni

>

> Hi group,

> re

> Feelings of anxiety around MTX buzzing around on many threads here

at present.

>

> Have noticed much recent posting on methotrexate and the wide range

of side effects experienced. Of course there will be a range of

tolerance as people react so differently.

>

> Here are my thoughts on the issue (personal non expert opinion only)

>

> I know that there is an increasing trend in RA medics to start an

active protocol,with a relatively high starting dose (15mg -20 mg) on

the basis that this will have best chance of achieving the desired

control of the underlying immune process, and not being 'wishy-washy'.

Yes ,all good logic from the science point of view.But it would seem a

bit heavy handed for some patients, therfore even 'cruel'.

>

> Having experience of using MTX in my oncology clinical practice,

have been aware when reading some posts of high starting doses that

that would inevitably take a significant extra susceptible minority

into the zone of intolerable side effects, including stomatitis and

gi upset after just one dose.

> They would , if so affected, quite rightly 'hate' the drug, and it

would be emotionally disressing to contemplate trying it even at a

lower dose in the future even if it might be a useful drug for

them.This is an important issue I feel.

>

> This is just my own humble opinion, but I feel if I were the doc I

would start prescribing lower and work up, if tolerated,to optimum

tailored dose and I believe would give the person more confidence and

control of managing their illness,and trust in the partnership with

their doctor at the for many scary time of starting DMARDs.

>

> It is better to 'stay the course' than withdraw at the first hurdle.

>

> So if concerned just ask the doc to clearly explain their logic for

the starting dose they choose. They don't have the side effects!

>

> Hope I have not worried anyone by this post. Quite the opposite of

what I intend. MTX is tolerated by many very very well and does its

job well for many.

> The message is just discuss any concerns with your doc early. Let

them know of your 'lost days' in a week. They wont know otherwise.

> Best wishes

> Chris

> UK (retired doc non rheum)

>

[Guest guest]

and group;

Yes I agree.. My rheumy started me out on Lyrcia at twice a day 50

mgs.. Later she uped it to 50 mgs 3 times a day.. Than even later

she uped it to 100 mgs 3 times a day... Now I am taking 100 mgs 4

times a day.. She did this I think in a 6 month period. I am doing

great on it. NO side effects and It's like I been cured of fibro..

Yes I get eye checks every 6 months and she said to stop the lyrcia

if I seem to have dificulty seeing...

She did it than with sulfazaline.. Started out with 2 a day.. Now I

take 2 twice a day.. I am doing ok with that too.. I was wondering

why she started out at low doses.. So we adjust to the meds better

if we are started out on low doses than work our way up to the

normal doses. My rhuemy is sounding better every day haaaaaaaaa.

I was allergic to Methotrexate right at the beginning..

gentle hugs

Clora

> Hi group,

> re

> Feelings of anxiety around MTX buzzing around on many threads

here at present.

>

> Have noticed much recent posting on methotrexate and the wide

range of side effects experienced. Of course there will be a range

of tolerance as people react so differently.

>

> Here are my thoughts on the issue (personal non expert opinion

only)

>

> I know that there is an increasing trend in RA medics to start an

active protocol,with a relatively high starting dose (15mg -20 mg)

on the basis that this will have best chance of achieving the

desired control of the underlying immune process, and not

being 'wishy-washy'. Yes ,all good logic from the science point of

view.But it would seem a bit heavy handed for some patients,

therfore even 'cruel'.

>

> Having experience of using MTX in my oncology clinical practice,

have been aware when reading some posts of high starting doses that

that would inevitably take a significant extra susceptible minority

into the zone of intolerable side effects, including stomatitis and

gi upset after just one dose.

> They would , if so affected, quite rightly 'hate' the drug, and it

would be emotionally disressing to contemplate trying it even at a

lower dose in the future even if it might be a useful drug for

them.This is an important issue I feel.

>

> This is just my own humble opinion, but I feel if I were the doc I

would start prescribing lower and work up, if tolerated,to optimum

tailored dose and I believe would give the person more confidence

and control of managing their illness,and trust in the partnership

with their doctor at the for many scary time of starting DMARDs.

>

> It is better to 'stay the course' than withdraw at the first

hurdle.

>

> So if concerned just ask the doc to clearly explain their logic

for the starting dose they choose. They don't have the side effects!

>

> Hope I have not worried anyone by this post. Quite the opposite of

what I intend. MTX is tolerated by many very very well and does its

job well for many.

> The message is just discuss any concerns with your doc early. Let

them know of your 'lost days' in a week. They wont know otherwise.

> Best wishes

> Chris

> UK (retired doc non rheum)

>

[Guest guest]

When I was first diagnosed with RA, my rheumy used the step-up

approach. He started me on a low dose of MTX, and then gradually

increased it. I had absolutely none of the adverse side effects that

have been mentioned here, such as nausea and more fatigue, etc. I did

eventually have the side effect of a lowered white blood cell count.

The blood work that was done every few weeks monitored that. When it

finally got to 2.2 (normal range 4+), he took me off that drug.

You really don't know what side effects you'll encounter with a drug

until you try it. Since I've been on Enbrel, I have had no adverse side

effects, despite the many listed for the drug. We all are different,

and have different reactions to drugs. I'm glad I'm pretty tolerant to

most drugs, since I have to take so many, some for RA, diabetes,

cholesterol, migraines, blood pressure, and bones.

Sue, back from six days back home

On Monday, October 6, 2008, at 04:37 AM, Petheram wrote:

>

> This is just my own humble opinion, but I feel if I were the doc I

> would start prescribing lower and work up, if tolerated,to optimum

> tailored dose and I believe would give the person more confidence and

> control of managing their illness,and trust in the partnership with

> their doctor at the for many scary time of starting DMARDs.

>

> It is better to 'stay the course' than withdraw at the first hurdle.

[Guest guest]

This makes sooooo much sense. Why don't more doctors think this way? Seriously!

When I started MTX, I was on 4 pills a week for 4 weeks. Nothing. I then doubled

to 8 pills a week. While 4 pills didn't help at all, 8 worked AMAZINGLY well but

made me so godawful nasty I couldn't stand myself. I tried tapering back to 7 or

6 pills a week and there just seemed to be something about the 8 pills a week

that was magic! And trust me... it worked but it got to the point where I

couldn't stand myself and had to ask my doctor to take me off it...

But the key thing here is.... MTX DOES WORK! It just works differently in every

body.

****~**** Kami ****~****

[ ] Methotrexate and side effects and Anxiety

This is just my own humble opinion, but I feel if I were the doc I would start

prescribing lower and work up, if tolerated,to optimum tailored dose and I

believe would give the person more confidence and control of managing their

illness,and trust in the partnership with their doctor at the for many scary

time of starting DMARDs.

It is better to 'stay the course' than withdraw at the first hurdle.

So if concerned just ask the doc to clearly explain their logic for the

starting dose they choose. They don't have the side effects!

Hope I have not worried anyone by this post. Quite the opposite of what I

intend. MTX is tolerated by many very very well and does its job well for many.

The message is just discuss any concerns with your doc early. Let them know of

your 'lost days' in a week. They wont know otherwise.

Best wishes

Chris

UK (retired doc non rheum)

.

[Guest guest]

Sorry, I do the daily digest so I'm a few emails behind... OH MY

GOSH! I can't believe that a rheumy would be that way! My rhuemy is

180 degrees different. He won't treat me unless I tell him what I

need. He looks at my hands, asks how I'm doing, I spout off what I'm

feeling like and really bait him for information. Every question

I've posed to him has always gotten a vague answer from him, never

decisive. I tell him I strive for the natural approach. He says

nutrition is key. I tell him I've done a lot of online research

about DMARDs and didn't like what I saw. He said just do what you

want. I ask him what the possibility of side effects are. He says

everyone's different. He's making me do all the research and

analyses and making me make all the decision for my care. I like

that, sure, but I'm paying this guy about $130 a visit to spit back

to me everything I already knew??? He's there if I want drugs, he's

not there if I don't want him. Despite my research, I feel like I

know nothing compared to what he SHOULD know, and try to get a decent

answer out of him, all to no avail. Do I care what exact form of RA

I have? When there is no cure, no, not really. It boils down to

disease/pain management, and unless I want heavy drugs, he won't tell

me anything. I've pondered searching for someone more...pro-active,

but I certainly wouldn't what the rheumy-Hitler you speak of. Keep

searching!

Brad

> >

> > Hi group,

> > re

> > Feelings of anxiety around MTX buzzing around on many threads

here

> at present.

> >

> > Have noticed much recent posting on methotrexate and the wide

range

> of side effects experienced. Of course there will be a range of

> tolerance as people react so differently.

> >

> > Here are my thoughts on the issue (personal non expert opinion

only)

> >

> > I know that there is an increasing trend in RA medics to start an

> active protocol,with a relatively high starting dose (15mg -20 mg)

on

> the basis that this will have best chance of achieving the desired

> control of the underlying immune process, and not being 'wishy-

washy'.

> Yes ,all good logic from the science point of view.But it would

seem a

> bit heavy handed for some patients, therfore even 'cruel'.

> >

> > Having experience of using MTX in my oncology clinical practice,

> have been aware when reading some posts of high starting doses that

> that would inevitably take a significant extra susceptible minority

> into the zone of intolerable side effects, including stomatitis and

> gi upset after just one dose.

> > They would , if so affected, quite rightly 'hate' the drug, and it

> would be emotionally disressing to contemplate trying it even at a

> lower dose in the future even if it might be a useful drug for

> them.This is an important issue I feel.

> >

> > This is just my own humble opinion, but I feel if I were the doc I

> would start prescribing lower and work up, if tolerated,to optimum

> tailored dose and I believe would give the person more confidence

and

> control of managing their illness,and trust in the partnership with

> their doctor at the for many scary time of starting DMARDs.

> >

> > It is better to 'stay the course' than withdraw at the first

hurdle.

> >

> > So if concerned just ask the doc to clearly explain their logic

for

> the starting dose they choose. They don't have the side effects!

> >

> > Hope I have not worried anyone by this post. Quite the opposite of

> what I intend. MTX is tolerated by many very very well and does its

> job well for many.

> > The message is just discuss any concerns with your doc early. Let

> them know of your 'lost days' in a week. They wont know otherwise.

> > Best wishes

> > Chris

> > UK (retired doc non rheum)

> >

>

[Guest guest]

Hi,

I do not post very often but was skimming through the posts and felt I should

chime in on

the MTX topic. I have been taking for over a year - at one point I got some very

bad

rashes on my face and suspected the MTX (which at the beginning made me VERY

tired as

in flu-like fatigue). Turned out the rash was not from MTX and they found a

Lupus

component to my disease (by biopsy of a lesion) - I was feeling so bad in my

joints I after

having been off the MTX, I could not wait to get up to my previous dosage - now

I take

20MG by injection once a week and I am grateful that my symptoms are liveable

and I am

able to be active. The fatigue is hardly noticable at this point - rhmy told me

to stick with

it when i complained of terrible fatigue and I thought he was a jerk but turns

out he was

right on.

I know everyone is different but just wanted to share my story. I am very happy

to have

MTX.

Jenna

> > >

> > > Hi group,

> > > re

> > > Feelings of anxiety around MTX buzzing around on many threads

> here

> > at present.

> > >

> > > Have noticed much recent posting on methotrexate and the wide

> range

> > of side effects experienced. Of course there will be a range of

> > tolerance as people react so differently.

> > >

> > > Here are my thoughts on the issue (personal non expert opinion

> only)

> > >

> > > I know that there is an increasing trend in RA medics to start an

> > active protocol,with a relatively high starting dose (15mg -20 mg)

> on

> > the basis that this will have best chance of achieving the desired

> > control of the underlying immune process, and not being 'wishy-

> washy'.

> > Yes ,all good logic from the science point of view.But it would

> seem a

> > bit heavy handed for some patients, therfore even 'cruel'.

> > >

> > > Having experience of using MTX in my oncology clinical practice,

> > have been aware when reading some posts of high starting doses that

> > that would inevitably take a significant extra susceptible minority

> > into the zone of intolerable side effects, including stomatitis and

> > gi upset after just one dose.

> > > They would , if so affected, quite rightly 'hate' the drug, and it

> > would be emotionally disressing to contemplate trying it even at a

> > lower dose in the future even if it might be a useful drug for

> > them.This is an important issue I feel.

> > >

> > > This is just my own humble opinion, but I feel if I were the doc I

> > would start prescribing lower and work up, if tolerated,to optimum

> > tailored dose and I believe would give the person more confidence

> and

> > control of managing their illness,and trust in the partnership with

> > their doctor at the for many scary time of starting DMARDs.

> > >

> > > It is better to 'stay the course' than withdraw at the first

> hurdle.

> > >

> > > So if concerned just ask the doc to clearly explain their logic

> for

> > the starting dose they choose. They don't have the side effects!

> > >

> > > Hope I have not worried anyone by this post. Quite the opposite of

> > what I intend. MTX is tolerated by many very very well and does its

> > job well for many.

> > > The message is just discuss any concerns with your doc early. Let

> > them know of your 'lost days' in a week. They wont know otherwise.

> > > Best wishes

> > > Chris

> > > UK (retired doc non rheum)

> > >

> >

>

[Guest guest]

Hi Jenna,

Yes ,so glad you posted..Glad it suits you and glad you have troubled to post

'the good news' !!

Of course frequent posters are often struggling and things might seem gloomy. It

is great in this group that members find time to post of the good times too.

Newbies, Dont forget there will be innumerable others (who can blame them) who

are able (with treatments) to get on with their life , be busy and stop

posting!!!So you won't necessarily hear from them!

But thanks to everyone who takes trouble to post their good news!!

UK

From: Jenna (Crawford) Sievers <jenna.sievers@...>

Subject: [ ] Re: Methotrexate and side effects and Anxiety

Date: Tuesday, 7 October, 2008, 5:45 PM

Hi,

I do not post very often but was skimming through the posts and felt I should

chime in on

the MTX topic. I have been taking for over a year - at one point I got some very

bad

rashes on my face and suspected the MTX (which at the beginning made me VERY

tired as

in flu-like fatigue). Turned out the rash was not from MTX and they found a

Lupus

component to my disease (by biopsy of a lesion) - I was feeling so bad in my

joints I after

having been off the MTX, I could not wait to get up to my previous dosage - now

I take

20MG by injection once a week and I am grateful that my symptoms are liveable

and I am

able to be active. The fatigue is hardly noticable at this point - rhmy told me

to stick with

it when i complained of terrible fatigue and I thought he was a jerk but turns

out he was

right on.

I know everyone is different but just wanted to share my story. I am very happy

to have

MTX.

Jenna

> > >

> > > Hi group,

> > > re

> > > Feelings of anxiety around MTX buzzing around on many threads

> here

> > at present.

> > >

> > > Have noticed much recent posting on methotrexate and the wide

> range

> > of side effects experienced. Of course there will be a range of

> > tolerance as people react so differently.

> > >

> > > Here are my thoughts on the issue (personal non expert opinion

> only)

> > >

> > > I know that there is an increasing trend in RA medics to start an

> > active protocol,with a relatively high starting dose (15mg -20 mg)

> on

> > the basis that this will have best chance of achieving the desired

> > control of the underlying immune process, and not being 'wishy-

> washy'.

> > Yes ,all good logic from the science point of view.But it would

> seem a

> > bit heavy handed for some patients, therfore even 'cruel'.

> > >

> > > Having experience of using MTX in my oncology clinical practice,

> > have been aware when reading some posts of high starting doses that

> > that would inevitably take a significant extra susceptible minority

> > into the zone of intolerable side effects, including stomatitis and

> > gi upset after just one dose.

> > > They would , if so affected, quite rightly 'hate' the drug, and it

> > would be emotionally disressing to contemplate trying it even at a

> > lower dose in the future even if it might be a useful drug for

> > them.This is an important issue I feel.

> > >

> > > This is just my own humble opinion, but I feel if I were the doc I

> > would start prescribing lower and work up, if tolerated,to optimum

> > tailored dose and I believe would give the person more confidence

> and

> > control of managing their illness,and trust in the partnership with

> > their doctor at the for many scary time of starting DMARDs.

> > >

> > > It is better to 'stay the course' than withdraw at the first

> hurdle.

> > >

> > > So if concerned just ask the doc to clearly explain their logic

> for

> > the starting dose they choose. They don't have the side effects!

> > >

> > > Hope I have not worried anyone by this post. Quite the opposite of

> > what I intend. MTX is tolerated by many very very well and does its

> > job well for many.

> > > The message is just discuss any concerns with your doc early. Let

> > them know of your 'lost days' in a week. They wont know otherwise.

> > > Best wishes

> > > Chris

> > > UK (retired doc non rheum)

> > >

> >

>