Re: Sed rate climbing.....told to restart MTX(long venting!)

[Guest guest]

Toni - I am so sorry you have to go through that with the

medication. I am not sure about needing the folic acid in your

system. But if you are feeling okay, I imagine it would be okay to

wait a week to start mtx again. It sounds like you just aren't ready

to deal with taking it again right at this moment, so maybe a couple

days to let it sink it will help.

When you took your medication holiday before, were you on Enbrel

then? I am not sure how long it takes to get out of your system and

make a difference in how you feel. I have only been on Humira for 7

months or so, but I was in such bad shape when I started it that I

hate the thought of having to stop it. But once I thought my

secretary had failed to put my Humira in the fridge (I was going to

pick it up at the office the next day - mail order pharmacy and there

was nowhere else I could send it). I woke up at 2am in a cold sweat

about it and decided that if it was spoiled I would go without rather

than pay $1200 for 2 new shots.

Jennie

> Well, I guess my doc finally found me. At my last appnt he did my

bloodwork

> and told me to call back in a week to get the results and to see if

I needed

> to restart the MTX.

>

> I have been off MTX for over 3 months now because I had surgery and

did not

> want to deal with the side effects of the MTX post op. Well it

appears my sed

> rate has been gradually climbing. It was down to the low 30s and

its now back

> in the 40 ish range. So the nurse called me finally today and told

me to

> restart MTX injections at 0.6cc a week.

>

> Well I have pretty busy plans this weekend. Usually friday is my

dose day.

> I am not happy about this. I went and looked and I am out of

leukovorin. I

> do have folic acid. When I stopped the MTX i stopped the folic

acid. I am

> wondering if I should wait a few weeks to get the folic acid in my

ssystem before

> starting the MTX again.

>

> Well the nurse heard that was I not pleased when she called. She

told me to

> call back next week if I don't intend to take the MTX.

>

> I am running out of enbrel too. This whole meds thing is getting

so

> expensive. The pharmacy(mail order) is calling me to

reorder...then at the same time

> sending me collection notices for the past due co-pays. I have

been basicly

> ignorring there calls. I really don't want to waste anymore

money. I am

> seriously considering a 3-6 month medication holiday. I have done

it before and it

> all went well. I have not been taking any of my meds with any sort

of

> regularity anyway.

>

> I am so sick of this whole medication, doctor thing. I am so ready

to tell

> them all to go to heck in handbasket and leave me alone!!!!

>

> Toni

>

>

>

>

[Guest guest]

Toni - I am so sorry you have to go through that with the

medication. I am not sure about needing the folic acid in your

system. But if you are feeling okay, I imagine it would be okay to

wait a week to start mtx again. It sounds like you just aren't ready

to deal with taking it again right at this moment, so maybe a couple

days to let it sink it will help.

When you took your medication holiday before, were you on Enbrel

then? I am not sure how long it takes to get out of your system and

make a difference in how you feel. I have only been on Humira for 7

months or so, but I was in such bad shape when I started it that I

hate the thought of having to stop it. But once I thought my

secretary had failed to put my Humira in the fridge (I was going to

pick it up at the office the next day - mail order pharmacy and there

was nowhere else I could send it). I woke up at 2am in a cold sweat

about it and decided that if it was spoiled I would go without rather

than pay $1200 for 2 new shots.

Jennie

> Well, I guess my doc finally found me. At my last appnt he did my

bloodwork

> and told me to call back in a week to get the results and to see if

I needed

> to restart the MTX.

>

> I have been off MTX for over 3 months now because I had surgery and

did not

> want to deal with the side effects of the MTX post op. Well it

appears my sed

> rate has been gradually climbing. It was down to the low 30s and

its now back

> in the 40 ish range. So the nurse called me finally today and told

me to

> restart MTX injections at 0.6cc a week.

>

> Well I have pretty busy plans this weekend. Usually friday is my

dose day.

> I am not happy about this. I went and looked and I am out of

leukovorin. I

> do have folic acid. When I stopped the MTX i stopped the folic

acid. I am

> wondering if I should wait a few weeks to get the folic acid in my

ssystem before

> starting the MTX again.

>

> Well the nurse heard that was I not pleased when she called. She

told me to

> call back next week if I don't intend to take the MTX.

>

> I am running out of enbrel too. This whole meds thing is getting

so

> expensive. The pharmacy(mail order) is calling me to

reorder...then at the same time

> sending me collection notices for the past due co-pays. I have

been basicly

> ignorring there calls. I really don't want to waste anymore

money. I am

> seriously considering a 3-6 month medication holiday. I have done

it before and it

> all went well. I have not been taking any of my meds with any sort

of

> regularity anyway.

>

> I am so sick of this whole medication, doctor thing. I am so ready

to tell

> them all to go to heck in handbasket and leave me alone!!!!

>

> Toni

>

>

>

>

[Guest guest]

toni,

i know what you mean-have been off meds due to surgery and it is really nice not

to take all that stuff but i am feeling the effects of not using it. hang in

there toni - i will keep you in my prayers.

nancy

aclavern33@... wrote:

Well, I guess my doc finally found me. At my last appnt he did my bloodwork

and told me to call back in a week to get the results and to see if I needed

to restart the MTX.

I have been off MTX for over 3 months now because I had surgery and did not

want to deal with the side effects of the MTX post op. Well it appears my sed

rate has been gradually climbing. It was down to the low 30s and its now back

in the 40 ish range. So the nurse called me finally today and told me to

restart MTX injections at 0.6cc a week.

Well I have pretty busy plans this weekend. Usually friday is my dose day.

I am not happy about this. I went and looked and I am out of leukovorin. I

do have folic acid. When I stopped the MTX i stopped the folic acid. I am

wondering if I should wait a few weeks to get the folic acid in my ssystem

before

starting the MTX again.

Well the nurse heard that was I not pleased when she called. She told me to

call back next week if I don't intend to take the MTX.

I am running out of enbrel too. This whole meds thing is getting so

expensive. The pharmacy(mail order) is calling me to reorder...then at the same

time

sending me collection notices for the past due co-pays. I have been basicly

ignorring there calls. I really don't want to waste anymore money. I am

seriously considering a 3-6 month medication holiday. I have done it before and

it

all went well. I have not been taking any of my meds with any sort of

regularity anyway.

I am so sick of this whole medication, doctor thing. I am so ready to tell

them all to go to heck in handbasket and leave me alone!!!!

Toni

[Guest guest]

toni,

i know what you mean-have been off meds due to surgery and it is really nice not

to take all that stuff but i am feeling the effects of not using it. hang in

there toni - i will keep you in my prayers.

nancy

aclavern33@... wrote:

Well, I guess my doc finally found me. At my last appnt he did my bloodwork

and told me to call back in a week to get the results and to see if I needed

to restart the MTX.

I have been off MTX for over 3 months now because I had surgery and did not

want to deal with the side effects of the MTX post op. Well it appears my sed

rate has been gradually climbing. It was down to the low 30s and its now back

in the 40 ish range. So the nurse called me finally today and told me to

restart MTX injections at 0.6cc a week.

Well I have pretty busy plans this weekend. Usually friday is my dose day.

I am not happy about this. I went and looked and I am out of leukovorin. I

do have folic acid. When I stopped the MTX i stopped the folic acid. I am

wondering if I should wait a few weeks to get the folic acid in my ssystem

before

starting the MTX again.

Well the nurse heard that was I not pleased when she called. She told me to

call back next week if I don't intend to take the MTX.

I am running out of enbrel too. This whole meds thing is getting so

expensive. The pharmacy(mail order) is calling me to reorder...then at the same

time

sending me collection notices for the past due co-pays. I have been basicly

ignorring there calls. I really don't want to waste anymore money. I am

seriously considering a 3-6 month medication holiday. I have done it before and

it

all went well. I have not been taking any of my meds with any sort of

regularity anyway.

I am so sick of this whole medication, doctor thing. I am so ready to tell

them all to go to heck in handbasket and leave me alone!!!!

Toni

[Guest guest]

Toni,

I posted to you before but it didn't show up. Perhaps my brain made

me click on the wrong thing - but if you see two replies from me

you'll know why.

I think it sounds like it's all too much at the moment. Take the

weekend off and don't think about any of it. I am not sure about

needing folic acid in your system beforehand, but a few days is not

going to make that much of a difference if you are feeling okay

without the mtx.

When you took your medication holiday before, were you on Enbrel

then? I don't know what I'd do if I couldn't afford my Humira. I

know I was a mess before I started it, and I feel great now

comparatively. I am always afraid of it not getting refrigerated and

spoiling, and I know if that happened I'd go a month without before I

shelled out $1,200, because there is no way I could come up with that

much cash.

Jennie

> Well, I guess my doc finally found me. At my last appnt he did my

bloodwork

> and told me to call back in a week to get the results and to see if

I needed

> to restart the MTX.

>

> I have been off MTX for over 3 months now because I had surgery and

did not

> want to deal with the side effects of the MTX post op. Well it

appears my sed

> rate has been gradually climbing. It was down to the low 30s and

its now back

> in the 40 ish range. So the nurse called me finally today and told

me to

> restart MTX injections at 0.6cc a week.

>

> Well I have pretty busy plans this weekend. Usually friday is my

dose day.

> I am not happy about this. I went and looked and I am out of

leukovorin. I

> do have folic acid. When I stopped the MTX i stopped the folic

acid. I am

> wondering if I should wait a few weeks to get the folic acid in my

ssystem before

> starting the MTX again.

>

> Well the nurse heard that was I not pleased when she called. She

told me to

> call back next week if I don't intend to take the MTX.

>

> I am running out of enbrel too. This whole meds thing is getting

so

> expensive. The pharmacy(mail order) is calling me to

reorder...then at the same time

> sending me collection notices for the past due co-pays. I have

been basicly

> ignorring there calls. I really don't want to waste anymore

money. I am

> seriously considering a 3-6 month medication holiday. I have done

it before and it

> all went well. I have not been taking any of my meds with any sort

of

> regularity anyway.

>

> I am so sick of this whole medication, doctor thing. I am so ready

to tell

> them all to go to heck in handbasket and leave me alone!!!!

>

> Toni

>

>

>

>

[Guest guest]

Toni,

I posted to you before but it didn't show up. Perhaps my brain made

me click on the wrong thing - but if you see two replies from me

you'll know why.

I think it sounds like it's all too much at the moment. Take the

weekend off and don't think about any of it. I am not sure about

needing folic acid in your system beforehand, but a few days is not

going to make that much of a difference if you are feeling okay

without the mtx.

When you took your medication holiday before, were you on Enbrel

then? I don't know what I'd do if I couldn't afford my Humira. I

know I was a mess before I started it, and I feel great now

comparatively. I am always afraid of it not getting refrigerated and

spoiling, and I know if that happened I'd go a month without before I

shelled out $1,200, because there is no way I could come up with that

much cash.

Jennie

> Well, I guess my doc finally found me. At my last appnt he did my

bloodwork

> and told me to call back in a week to get the results and to see if

I needed

> to restart the MTX.

>

> I have been off MTX for over 3 months now because I had surgery and

did not

> want to deal with the side effects of the MTX post op. Well it

appears my sed

> rate has been gradually climbing. It was down to the low 30s and

its now back

> in the 40 ish range. So the nurse called me finally today and told

me to

> restart MTX injections at 0.6cc a week.

>

> Well I have pretty busy plans this weekend. Usually friday is my

dose day.

> I am not happy about this. I went and looked and I am out of

leukovorin. I

> do have folic acid. When I stopped the MTX i stopped the folic

acid. I am

> wondering if I should wait a few weeks to get the folic acid in my

ssystem before

> starting the MTX again.

>

> Well the nurse heard that was I not pleased when she called. She

told me to

> call back next week if I don't intend to take the MTX.

>

> I am running out of enbrel too. This whole meds thing is getting

so

> expensive. The pharmacy(mail order) is calling me to

reorder...then at the same time

> sending me collection notices for the past due co-pays. I have

been basicly

> ignorring there calls. I really don't want to waste anymore

money. I am

> seriously considering a 3-6 month medication holiday. I have done

it before and it

> all went well. I have not been taking any of my meds with any sort

of

> regularity anyway.

>

> I am so sick of this whole medication, doctor thing. I am so ready

to tell

> them all to go to heck in handbasket and leave me alone!!!!

>

> Toni

>

>

>

>

[Guest guest]

Toni,

I can relate to what you are saying. I have been there thinking

that the medications aren't doing any good because I am not feeling

any better.

I did exactly what you talked about with surgery. About 2 weeks

prior to surgery, I was advised to stop taking all cox 2 inhibitor

meds that I was on - well I stopped them all. I didn't tell the doc

just stopped them. I had my surgery and all was fine. I felt

great - no pain - wow it was wonderful.

Then the effects from the anesthesia were totally out of my system

and the pain came back and the swelling. I finally admitted to my

doctor that I had stopped and she advised me to start taking the MTX

again with Foltx(a combination of Folic and Vitamin b's).

The MTX helps me. The aches receded and the swelling went down.

But for those 2 months after surgery when that anesthesia medication

was still working life was great.

I wouldn't advise doing it to anyone else but it did work and I have

often wondered why if these anesthesia drugs last 2 months that they

can't give us those...inject us - let us wake up 2 hours later and

have no pain or swelling for 2 months.

I had a g/f in CA that was trying to get her doctor to do just

that. I lost touch with her but the last time I talked to her - her

doctor was still balking at the suggestion but it sounds so great to

me.

I hope you feel better soon and don't get too discouraged. I go

through that and have to pick myself up often.

God bless,

Althea

[Guest guest]

Toni,

I can relate to what you are saying. I have been there thinking

that the medications aren't doing any good because I am not feeling

any better.

I did exactly what you talked about with surgery. About 2 weeks

prior to surgery, I was advised to stop taking all cox 2 inhibitor

meds that I was on - well I stopped them all. I didn't tell the doc

just stopped them. I had my surgery and all was fine. I felt

great - no pain - wow it was wonderful.

Then the effects from the anesthesia were totally out of my system

and the pain came back and the swelling. I finally admitted to my

doctor that I had stopped and she advised me to start taking the MTX

again with Foltx(a combination of Folic and Vitamin b's).

The MTX helps me. The aches receded and the swelling went down.

But for those 2 months after surgery when that anesthesia medication

was still working life was great.

I wouldn't advise doing it to anyone else but it did work and I have

often wondered why if these anesthesia drugs last 2 months that they

can't give us those...inject us - let us wake up 2 hours later and

have no pain or swelling for 2 months.

I had a g/f in CA that was trying to get her doctor to do just

that. I lost touch with her but the last time I talked to her - her

doctor was still balking at the suggestion but it sounds so great to

me.

I hope you feel better soon and don't get too discouraged. I go

through that and have to pick myself up often.

God bless,

Althea

[Guest guest]

Jennie,

Actually, I am not feeling ok. I have noticed over the past few weeks

gradual increases in pain, stiffness, soreness and swelling. I have been

struggling

through it because my rheummy was saying my labwork was not reflecting how I

was feeling. So I kept my mouth shut.

I am the one that had all the terrible side effects on MTX. It didn't matter

if it was pills or injections. I was up to 5 mg folic acid a day plus

leukovorin weekly and still the side effects did not subside. My liver function

tests were within normal ranges according to my rheummy. So he wanted me to

continue on MTX even though I suffering with vomiting, diarrhea, dizziness,

mouth

sores, eye sores, throat sores and nausea.

I have been in Enbrel off and on for a year now. It really did make a

difference when I first started and i was very compliant with my medication

schedule. But after awhile it didn't seen to work very well....I also got

pretty lazy

about taking my meds...I was missing at least one day a week or taking it

late...or even forgetting complete. Not to mention it kept getting more and

more

expensive.

The really sad part is I tried to talk to my rheummy about the cost of all

these meds he is prescribing and he just sort of nodded his head and I got the

" uh huh " and that was it. No suggestions or advice. So I guess when I go back

and he ask me what meds I am on, I will tell him none because I can't afford

them.

I have taken two medication holidays since being diagnosised. The first time

I was on MTX, pred, folic acid and Bextra. I stopped all meds for almost 4

months. This was due to financial problems during that time. This second

holiday was because of surgery and I was on Enbrel, MTX, pred, folic acid,

leukovorin and Bextra.

These medications are just too expensive to continue like this forever. I

can handle short term but not long term. I just don't feel its worth all this.

I could be spending this money in a much more production way. I am just sick

and tired of the getting shots, paying for all this medication and being tied

to some darn medication schedule.

Like I said before I am VERY burnt out on this whole RA thing!!!!! Three

years in more than enough for me. I am even questioning his diagnosis.

Toni

In a message dated 8/27/2004 9:06:26 PM Central Daylight Time,

writes:

Date: Fri, 27 Aug 2004 20:25:13 -0000

From: " Jennie G " <xponder70@...>

Subject: Re: Sed rate climbing.....told to restart MTX(long venting!)

Toni,

I posted to you before but it didn't show up. Perhaps my brain made

me click on the wrong thing - but if you see two replies from me

you'll know why.

I think it sounds like it's all too much at the moment. Take the

weekend off and don't think about any of it. I am not sure about

needing folic acid in your system beforehand, but a few days is not

going to make that much of a difference if you are feeling okay

without the mtx.

When you took your medication holiday before, were you on Enbrel

then? I don't know what I'd do if I couldn't afford my Humira. I

know I was a mess before I started it, and I feel great now

comparatively. I am always afraid of it not getting refrigerated and

spoiling, and I know if that happened I'd go a month without before I

shelled out $1,200, because there is no way I could come up with that

much cash.

Jennie

[Guest guest]

Jennie,

Actually, I am not feeling ok. I have noticed over the past few weeks

gradual increases in pain, stiffness, soreness and swelling. I have been

struggling

through it because my rheummy was saying my labwork was not reflecting how I

was feeling. So I kept my mouth shut.

I am the one that had all the terrible side effects on MTX. It didn't matter

if it was pills or injections. I was up to 5 mg folic acid a day plus

leukovorin weekly and still the side effects did not subside. My liver function

tests were within normal ranges according to my rheummy. So he wanted me to

continue on MTX even though I suffering with vomiting, diarrhea, dizziness,

mouth

sores, eye sores, throat sores and nausea.

I have been in Enbrel off and on for a year now. It really did make a

difference when I first started and i was very compliant with my medication

schedule. But after awhile it didn't seen to work very well....I also got

pretty lazy

about taking my meds...I was missing at least one day a week or taking it

late...or even forgetting complete. Not to mention it kept getting more and

more

expensive.

The really sad part is I tried to talk to my rheummy about the cost of all

these meds he is prescribing and he just sort of nodded his head and I got the

" uh huh " and that was it. No suggestions or advice. So I guess when I go back

and he ask me what meds I am on, I will tell him none because I can't afford

them.

I have taken two medication holidays since being diagnosised. The first time

I was on MTX, pred, folic acid and Bextra. I stopped all meds for almost 4

months. This was due to financial problems during that time. This second

holiday was because of surgery and I was on Enbrel, MTX, pred, folic acid,

leukovorin and Bextra.

These medications are just too expensive to continue like this forever. I

can handle short term but not long term. I just don't feel its worth all this.

I could be spending this money in a much more production way. I am just sick

and tired of the getting shots, paying for all this medication and being tied

to some darn medication schedule.

Like I said before I am VERY burnt out on this whole RA thing!!!!! Three

years in more than enough for me. I am even questioning his diagnosis.

Toni

In a message dated 8/27/2004 9:06:26 PM Central Daylight Time,

writes:

Date: Fri, 27 Aug 2004 20:25:13 -0000

From: " Jennie G " <xponder70@...>

Subject: Re: Sed rate climbing.....told to restart MTX(long venting!)

Toni,

I posted to you before but it didn't show up. Perhaps my brain made

me click on the wrong thing - but if you see two replies from me

you'll know why.

I think it sounds like it's all too much at the moment. Take the

weekend off and don't think about any of it. I am not sure about

needing folic acid in your system beforehand, but a few days is not

going to make that much of a difference if you are feeling okay

without the mtx.

When you took your medication holiday before, were you on Enbrel

then? I don't know what I'd do if I couldn't afford my Humira. I

know I was a mess before I started it, and I feel great now

comparatively. I am always afraid of it not getting refrigerated and

spoiling, and I know if that happened I'd go a month without before I

shelled out $1,200, because there is no way I could come up with that

much cash.

Jennie

[Guest guest]

Toni,

I am so sorry you are struggling this way. Not being able to afford

the medication is a terrible place to be in. You mentioned

switching insurance in another post, I think that was you. Will

this help the cost? I had to switch insurance recently and all the

costs were different. Most went up, but the co-pay for Humira went

down for some reason.

I don't think it sounds like mtx is the best medication for you if

you get all those side effects. What good does it do if it controls

the RA, but then causes all kinds of other problems that keep you

from being able to function?

Jennie

>

> Jennie,

> Actually, I am not feeling ok. I have noticed over the past few

weeks

> gradual increases in pain, stiffness, soreness and swelling. I

have been struggling

> through it because my rheummy was saying my labwork was not

reflecting how I

> was feeling. So I kept my mouth shut.

>

> I am the one that had all the terrible side effects on MTX. It

didn't matter

> if it was pills or injections. I was up to 5 mg folic acid a day

plus

> leukovorin weekly and still the side effects did not subside. My

liver function

> tests were within normal ranges according to my rheummy. So he

wanted me to

> continue on MTX even though I suffering with vomiting, diarrhea,

dizziness, mouth

> sores, eye sores, throat sores and nausea.

>

> I have been in Enbrel off and on for a year now. It really did

make a

> difference when I first started and i was very compliant with my

medication

> schedule. But after awhile it didn't seen to work very well....I

also got pretty lazy

> about taking my meds...I was missing at least one day a week or

taking it

> late...or even forgetting complete. Not to mention it kept

getting more and more

> expensive.

>

> The really sad part is I tried to talk to my rheummy about the

cost of all

> these meds he is prescribing and he just sort of nodded his head

and I got the

> " uh huh " and that was it. No suggestions or advice. So I guess

when I go back

> and he ask me what meds I am on, I will tell him none because I

can't afford

> them.

>

> I have taken two medication holidays since being diagnosised. The

first time

> I was on MTX, pred, folic acid and Bextra. I stopped all meds for

almost 4

> months. This was due to financial problems during that time.

This second

> holiday was because of surgery and I was on Enbrel, MTX, pred,

folic acid,

> leukovorin and Bextra.

>

> These medications are just too expensive to continue like this

forever. I

> can handle short term but not long term. I just don't feel its

worth all this.

> I could be spending this money in a much more production way. I

am just sick

> and tired of the getting shots, paying for all this medication and

being tied

> to some darn medication schedule.

>

> Like I said before I am VERY burnt out on this whole RA

thing!!!!! Three

> years in more than enough for me. I am even questioning his

diagnosis.

>

> Toni

>

[Guest guest]

Toni,

I am so sorry you are struggling this way. Not being able to afford

the medication is a terrible place to be in. You mentioned

switching insurance in another post, I think that was you. Will

this help the cost? I had to switch insurance recently and all the

costs were different. Most went up, but the co-pay for Humira went

down for some reason.

I don't think it sounds like mtx is the best medication for you if

you get all those side effects. What good does it do if it controls

the RA, but then causes all kinds of other problems that keep you

from being able to function?

Jennie

>

> Jennie,

> Actually, I am not feeling ok. I have noticed over the past few

weeks

> gradual increases in pain, stiffness, soreness and swelling. I

have been struggling

> through it because my rheummy was saying my labwork was not

reflecting how I

> was feeling. So I kept my mouth shut.

>

> I am the one that had all the terrible side effects on MTX. It

didn't matter

> if it was pills or injections. I was up to 5 mg folic acid a day

plus

> leukovorin weekly and still the side effects did not subside. My

liver function

> tests were within normal ranges according to my rheummy. So he

wanted me to

> continue on MTX even though I suffering with vomiting, diarrhea,

dizziness, mouth

> sores, eye sores, throat sores and nausea.

>

> I have been in Enbrel off and on for a year now. It really did

make a

> difference when I first started and i was very compliant with my

medication

> schedule. But after awhile it didn't seen to work very well....I

also got pretty lazy

> about taking my meds...I was missing at least one day a week or

taking it

> late...or even forgetting complete. Not to mention it kept

getting more and more

> expensive.

>

> The really sad part is I tried to talk to my rheummy about the

cost of all

> these meds he is prescribing and he just sort of nodded his head

and I got the

> " uh huh " and that was it. No suggestions or advice. So I guess

when I go back

> and he ask me what meds I am on, I will tell him none because I

can't afford

> them.

>

> I have taken two medication holidays since being diagnosised. The

first time

> I was on MTX, pred, folic acid and Bextra. I stopped all meds for

almost 4

> months. This was due to financial problems during that time.

This second

> holiday was because of surgery and I was on Enbrel, MTX, pred,

folic acid,

> leukovorin and Bextra.

>

> These medications are just too expensive to continue like this

forever. I

> can handle short term but not long term. I just don't feel its

worth all this.

> I could be spending this money in a much more production way. I

am just sick

> and tired of the getting shots, paying for all this medication and

being tied

> to some darn medication schedule.

>

> Like I said before I am VERY burnt out on this whole RA

thing!!!!! Three

> years in more than enough for me. I am even questioning his

diagnosis.

>

> Toni

>

[Guest guest]

Toni,

I understand your feelings. It is very depressing to be on these meds.

Every time I take enbrel, I wonder if this will be the shot that will

trigger a side effect. I don't think any of us like it, but the alternative

isn't pretty either. With your labs getting worse being off the meds, you

know the meds were working so at least you are not spending money in vain.

So many people have no insurance at all and pay full price and then have

them not be effective. The insurance situation is in crisis and we're the

ones paying for it by not getting the proper care and not being able to

afford medication in spite of having insurance.

a

> Well, I guess my doc finally found me. At my last appnt he did my bloodwork

> and told me to call back in a week to get the results and to see if I needed

> to restart the MTX.

>

> I have been off MTX for over 3 months now because I had surgery and did not

> want to deal with the side effects of the MTX post op. Well it appears my sed

> rate has been gradually climbing. It was down to the low 30s and its now back

> in the 40 ish range. So the nurse called me finally today and told me to

> restart MTX injections at 0.6cc a week.

>

> Well I have pretty busy plans this weekend. Usually friday is my dose day.

> I am not happy about this. I went and looked and I am out of leukovorin. I

> do have folic acid. When I stopped the MTX i stopped the folic acid. I am

> wondering if I should wait a few weeks to get the folic acid in my ssystem

> before

> starting the MTX again.

>

> Well the nurse heard that was I not pleased when she called. She told me to

> call back next week if I don't intend to take the MTX.

>

> I am running out of enbrel too. This whole meds thing is getting so

> expensive. The pharmacy(mail order) is calling me to reorder...then at the

> same time

> sending me collection notices for the past due co-pays. I have been basicly

> ignorring there calls. I really don't want to waste anymore money. I am

> seriously considering a 3-6 month medication holiday. I have done it before

> and it

> all went well. I have not been taking any of my meds with any sort of

> regularity anyway.

>

> I am so sick of this whole medication, doctor thing. I am so ready to tell

> them all to go to heck in handbasket and leave me alone!!!!

>

> Toni

>

>

>

>

[Guest guest]

Toni,

I understand your feelings. It is very depressing to be on these meds.

Every time I take enbrel, I wonder if this will be the shot that will

trigger a side effect. I don't think any of us like it, but the alternative

isn't pretty either. With your labs getting worse being off the meds, you

know the meds were working so at least you are not spending money in vain.

So many people have no insurance at all and pay full price and then have

them not be effective. The insurance situation is in crisis and we're the

ones paying for it by not getting the proper care and not being able to

afford medication in spite of having insurance.

a

> Well, I guess my doc finally found me. At my last appnt he did my bloodwork

> and told me to call back in a week to get the results and to see if I needed

> to restart the MTX.

>

> I have been off MTX for over 3 months now because I had surgery and did not

> want to deal with the side effects of the MTX post op. Well it appears my sed

> rate has been gradually climbing. It was down to the low 30s and its now back

> in the 40 ish range. So the nurse called me finally today and told me to

> restart MTX injections at 0.6cc a week.

>

> Well I have pretty busy plans this weekend. Usually friday is my dose day.

> I am not happy about this. I went and looked and I am out of leukovorin. I

> do have folic acid. When I stopped the MTX i stopped the folic acid. I am

> wondering if I should wait a few weeks to get the folic acid in my ssystem

> before

> starting the MTX again.

>

> Well the nurse heard that was I not pleased when she called. She told me to

> call back next week if I don't intend to take the MTX.

>

> I am running out of enbrel too. This whole meds thing is getting so

> expensive. The pharmacy(mail order) is calling me to reorder...then at the

> same time

> sending me collection notices for the past due co-pays. I have been basicly

> ignorring there calls. I really don't want to waste anymore money. I am

> seriously considering a 3-6 month medication holiday. I have done it before

> and it

> all went well. I have not been taking any of my meds with any sort of

> regularity anyway.

>

> I am so sick of this whole medication, doctor thing. I am so ready to tell

> them all to go to heck in handbasket and leave me alone!!!!

>

> Toni

>

>

>

>

[Guest guest]

Jennie,

I will get the opportunity to change insurance at the end of this year.

Since leaving my job I am on COBRA which is quite expensive. I keep my

insurance

because it covers everything though the co-pays have increased each year. If

I drop my insurance and just use hubby's I will have no coverage for any

injectables..they do cover insulin. They cover remicaide but its like I was in

the

hospital..so I have to pay large deductible and they only cover 90% of the

fees. I have terrible venous access to this would not be a good option for me.

I was trying to explain exactly what you said about the side effects...but my

doc is not listening. I am not really sure what I am going to do at this

point. I will probably just stop meds when they run out.

Toni

In a message dated 8/28/2004 7:56:49 PM Central Daylight Time,

writes:

Date: Sun, 29 Aug 2004 00:42:43 -0000

From: " Jennie G " <xponder70@...>

Subject: Re: Sed rate climbing.....told to restart MTX(long venting!)

Toni,

I am so sorry you are struggling this way. Not being able to afford

the medication is a terrible place to be in. You mentioned

switching insurance in another post, I think that was you. Will

this help the cost? I had to switch insurance recently and all the

costs were different. Most went up, but the co-pay for Humira went

down for some reason.

I don't think it sounds like mtx is the best medication for you if

you get all those side effects. What good does it do if it controls

the RA, but then causes all kinds of other problems that keep you

from being able to function?

Jennie

[Guest guest]

Jennie,

I will get the opportunity to change insurance at the end of this year.

Since leaving my job I am on COBRA which is quite expensive. I keep my

insurance

because it covers everything though the co-pays have increased each year. If

I drop my insurance and just use hubby's I will have no coverage for any

injectables..they do cover insulin. They cover remicaide but its like I was in

the

hospital..so I have to pay large deductible and they only cover 90% of the

fees. I have terrible venous access to this would not be a good option for me.

I was trying to explain exactly what you said about the side effects...but my

doc is not listening. I am not really sure what I am going to do at this

point. I will probably just stop meds when they run out.

Toni

In a message dated 8/28/2004 7:56:49 PM Central Daylight Time,

writes:

Date: Sun, 29 Aug 2004 00:42:43 -0000

From: " Jennie G " <xponder70@...>

Subject: Re: Sed rate climbing.....told to restart MTX(long venting!)

Toni,

I am so sorry you are struggling this way. Not being able to afford

the medication is a terrible place to be in. You mentioned

switching insurance in another post, I think that was you. Will

this help the cost? I had to switch insurance recently and all the

costs were different. Most went up, but the co-pay for Humira went

down for some reason.

I don't think it sounds like mtx is the best medication for you if

you get all those side effects. What good does it do if it controls

the RA, but then causes all kinds of other problems that keep you

from being able to function?

Jennie

[Guest guest]

Toni,

If you are on cobra, I can see why you don't have any money for

meds. My mom had to do that for 2 months last year and I couldn't

believe how much it cost! Your hubby's insurance doesn't sound very

good... sounds like an HMO, where it's only good to have it if you

are healthy.

Jennie

>

> Jennie,

>

> I will get the opportunity to change insurance at the end of this

year.

> Since leaving my job I am on COBRA which is quite expensive. I

keep my insurance

> because it covers everything though the co-pays have increased each

year. If

> I drop my insurance and just use hubby's I will have no coverage

for any

> injectables..they do cover insulin. They cover remicaide but its

like I was in the

> hospital..so I have to pay large deductible and they only cover 90%

of the

> fees. I have terrible venous access to this would not be a good

option for me.

>

> I was trying to explain exactly what you said about the side

effects...but my

> doc is not listening. I am not really sure what I am going to do

at this

> point. I will probably just stop meds when they run out.

>

> Toni

>

> In a message dated 8/28/2004 7:56:49 PM Central Daylight Time,

> writes:

>

> Date: Sun, 29 Aug 2004 00:42:43 -0000

> From: " Jennie G " <xponder70@y...>

> Subject: Re: Sed rate climbing.....told to restart MTX(long

venting!)

>

> Toni,

>

> I am so sorry you are struggling this way. Not being able to

afford

> the medication is a terrible place to be in. You mentioned

> switching insurance in another post, I think that was you. Will

> this help the cost? I had to switch insurance recently and all the

> costs were different. Most went up, but the co-pay for Humira went

> down for some reason.

>

> I don't think it sounds like mtx is the best medication for you if

> you get all those side effects. What good does it do if it

controls

> the RA, but then causes all kinds of other problems that keep you

> from being able to function?

>

> Jennie

>

>

>

>

>

>

>

[Guest guest]

Toni,

If you are on cobra, I can see why you don't have any money for

meds. My mom had to do that for 2 months last year and I couldn't

believe how much it cost! Your hubby's insurance doesn't sound very

good... sounds like an HMO, where it's only good to have it if you

are healthy.

Jennie

>

> Jennie,

>

> I will get the opportunity to change insurance at the end of this

year.

> Since leaving my job I am on COBRA which is quite expensive. I

keep my insurance

> because it covers everything though the co-pays have increased each

year. If

> I drop my insurance and just use hubby's I will have no coverage

for any

> injectables..they do cover insulin. They cover remicaide but its

like I was in the

> hospital..so I have to pay large deductible and they only cover 90%

of the

> fees. I have terrible venous access to this would not be a good

option for me.

>

> I was trying to explain exactly what you said about the side

effects...but my

> doc is not listening. I am not really sure what I am going to do

at this

> point. I will probably just stop meds when they run out.

>

> Toni

>

> In a message dated 8/28/2004 7:56:49 PM Central Daylight Time,

> writes:

>

> Date: Sun, 29 Aug 2004 00:42:43 -0000

> From: " Jennie G " <xponder70@y...>

> Subject: Re: Sed rate climbing.....told to restart MTX(long

venting!)

>

> Toni,

>

> I am so sorry you are struggling this way. Not being able to

afford

> the medication is a terrible place to be in. You mentioned

> switching insurance in another post, I think that was you. Will

> this help the cost? I had to switch insurance recently and all the

> costs were different. Most went up, but the co-pay for Humira went

> down for some reason.

>

> I don't think it sounds like mtx is the best medication for you if

> you get all those side effects. What good does it do if it

controls

> the RA, but then causes all kinds of other problems that keep you

> from being able to function?

>

> Jennie

>

>

>

>

>

>

>

[Guest guest]

Jennie,

It has to do with cost. The COBRA is so expensive that when I pay the other

necessities there is not much left over for meds. Actually both insurance

plans are HMOs. SAme company too...just different plans. Mine is suppose to be

the best. Not sure about that...but it is quite expensive.

At least now that there is MTX shortage I don't have to worry about taking

it. I called and told the nurse and the response from my doc was, to start it

when it becomes available. Now of course you know I am not running or callig

the pharmacy daily to see if they have it. This pharmacy is 30 miles away. I

usually would fill my meds when I go for rheummy appnt. So when I go for my

next appnt in 7 weeks I will check with them again. If they have none...oh

well. I am not killing myself over this one. I wasn't planning on restarting

it

anyway.

I just don't understand why my doc can't explore the other drug options

available. Its so frustrating.

Toni

In a message dated 8/30/2004 7:30:24 PM Central Daylight Time,

writes:

Date: Mon, 30 Aug 2004 13:09:14 -0000

From: " Jennie G " <xponder70@...>

Subject: Re: Sed rate climbing.....told to restart MTX(long venting!)

Toni,

If you are on cobra, I can see why you don't have any money for

meds. My mom had to do that for 2 months last year and I couldn't

believe how much it cost! Your hubby's insurance doesn't sound very

good... sounds like an HMO, where it's only good to have it if you

are healthy.

Jennie

[Guest guest]

Jennie,

It has to do with cost. The COBRA is so expensive that when I pay the other

necessities there is not much left over for meds. Actually both insurance

plans are HMOs. SAme company too...just different plans. Mine is suppose to be

the best. Not sure about that...but it is quite expensive.

At least now that there is MTX shortage I don't have to worry about taking

it. I called and told the nurse and the response from my doc was, to start it

when it becomes available. Now of course you know I am not running or callig

the pharmacy daily to see if they have it. This pharmacy is 30 miles away. I

usually would fill my meds when I go for rheummy appnt. So when I go for my

next appnt in 7 weeks I will check with them again. If they have none...oh

well. I am not killing myself over this one. I wasn't planning on restarting

it

anyway.

I just don't understand why my doc can't explore the other drug options

available. Its so frustrating.

Toni

In a message dated 8/30/2004 7:30:24 PM Central Daylight Time,

writes:

Date: Mon, 30 Aug 2004 13:09:14 -0000

From: " Jennie G " <xponder70@...>

Subject: Re: Sed rate climbing.....told to restart MTX(long venting!)

Toni,

If you are on cobra, I can see why you don't have any money for

meds. My mom had to do that for 2 months last year and I couldn't

believe how much it cost! Your hubby's insurance doesn't sound very

good... sounds like an HMO, where it's only good to have it if you

are healthy.

Jennie