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`dld` - 09 Mar 2006 02:27 GMT

Hey guys,

Thanks so much for responding.

I started by taking 3 MTX @ 2.5 mgs per week. Then the new rheumy told
me that the dose I was on was for grannies or small children.

I had been on MTX since Nov 2005. So she did a bloodwork up on me in
Jan 2006. Turns out my liver was already having issues. So she waited
to up the dosage. The first of march I started taking 6 MTX @ 2.5 mgs
per week. I think that's approx 15. I know from my research that R.A.
patients take up to about 28 per week.

The thing is I'm still escalating fast. It started in my toes. Then a
month later it was in my hands. December my elbows started to feel
'odd'. Now they and my knees hurt. I don't cope with my knees as well
as I do the other types of pain. The knees were really bad last week.

She was talking last visit about putting me on enbrel. I know that she
needed to be able to tell the insurance company that I had been on MTX
for at least 3 months and am not responding well to it. Which I'm not.

The thing that concerns me the most is how it seems directly correlated
with my emotions. Am I the only one that experiences this? I am
involved in a fairly lengthy child custody thingie. And my family is
always blowing up at each other for one reason or another. The second
I start to get emotional -- either good or bad. My hands and feet
start blowing up like I've got air pumps in them.

Aw, I don't want to whine.

Anyway, that's the dosage that I've been on.

Oh, wait, I was on prednasone, but went off of it cold turkey in Jan
06 because I was gaining between 15-20 lbs a month. I'm already a
very big girl. I can't handle any more weight on my poor joints. So
yes, I know that has escalated my pain considerably. I knew it would.
I decided to trade it off. Somedays I think that was an idiotic
decision.

Okay, now I will shut up.
thanks so much guys,

-dld

Reply to this Message

Harvey R. Stone - 09 Mar 2006 05:06 GMT

> Hey guys,
>
> Thanks so much for responding.
>
> I started by taking 3 MTX @ 2.5 mgs per week. Then the new rheumy told
> me that the dose I was on was for grannies or small children.

Hhhhmmm, I had to get up to 15mg before it even started to work for me.
If the amount you take and your blood tests are OK,,, I would push my doctor
for a higher amount. I stayed at 17.5 for lots of years and 20 mg by
injection at the end of use.

> I had been on MTX since Nov 2005. So she did a bloodwork up on me in
> Jan 2006. Turns out my liver was already having issues. So she waited
> to up the dosage. The first of march I started taking 6 MTX @ 2.5 mgs
> per week. I think that's approx 15. I know from my research that R.A.
> patients take up to about 28 per week.

yes, that is the upper end of taking Methx. Our MaryZ is the highest I
remember at 38mg a week. Its all about you blood tests and liver enzymes.
I could not go any higher than 20 mg. Try to learn all you can about what
you blood test actually says about your body.

> The thing is I'm still escalating fast. It started in my toes. Then a
> month later it was in my hands. December my elbows started to feel
> 'odd'. Now they and my knees hurt. I don't cope with my knees as well
> as I do the other types of pain. The knees were really bad last week.

That is full blown RA. I ended up adding Sulfasalizine to be taken with
the Methx and some people use Plaquinel.

> She was talking last visit about putting me on enbrel. I know that she
> needed to be able to tell the insurance company that I had been on MTX
> for at least 3 months and am not responding well to it. Which I'm not.
>
> The thing that concerns me the most is how it seems directly correlated
> with my emotions. Am I the only one that experiences this?

Good question,,,, NO,,,, many of us get worse with stress and/or anger.

I am

> involved in a fairly lengthy child custody thingie. And my family is
> always blowing up at each other for one reason or another. The second
> I start to get emotional -- either good or bad. My hands and feet
> start blowing up like I've got air pumps in them.

THAT IS NORMAL FOR A PERSON WITH INFLAM. ARTHRITIS.

> Aw, I don't want to whine.

We all do it and none of us enjoy the loss of function, the pain and
swelling. Your liver must be the reason your RD is holding you at such a
low amout of Methx.
Make your doctor talk to you. Find out about yourself and what you have.

> Anyway, that's the dosage that I've been on.
>
> Oh, wait, I was on prednasone, but went off of it cold turkey in Jan
> 06 because I was gaining between 15-20 lbs a month. I'm already a
> very big girl.

No wonder your condition is worse. A person has to slowly taper off of
prednisone. I gain with prednisone also butttttt that can be controlled
with your knife and fork and no sweets. Some people are not going to like
me saying that to you but it is the truth.

I can't handle any more weight on my poor joints. So

> yes, I know that has escalated my pain considerably. I knew it would.
> I decided to trade it off. Somedays I think that was an idiotic decision.

Weight gain and loss is about making the right decisions and you taking
control of what is taking place. We will all tell you that prednisone has
its place in controlling RA. I keep a full prescription for a months use
just sitting there to be taken if I need it to get control. Weight gain,
pimples, thinning skin, acid reflux are part of the problems with taking
prednisone and long time use but there are times with RA that a
steroid shot in the butt or prednisone pills for a few days will allow us to
control RA so that we can go on that vacation or deal with a high stress in
our family.

> Okay, now I will shut up.
> thanks so much guys,
>
> -dld

And so will I.... Just do not go away. You are part of this family now
and we are here to help you to live a better life with what we have.
Harv

Ps I use Enbrel now and have for more than 4 years now. I have had RA
since I was 38 and I am 67 now.
It may have side effects for you like it has for a few people but it made a
new life for me and others.

Reply to this Message

Nann Bell - 09 Mar 2006 05:47 GMT

On Wed, 8 Mar 2006 21:27:00 -0500, dld` wrote
(in message <1141871220.648402.202400@j33g2000cwa.googlegroups.com>):

lots of us here didn't get any improvement with mtx until we reached the
15mg/week level AND had been there for about a month. Of course, if your
liver is still having issues with it, you may need to get off it anyway. Oh,
and lots of us take milk thistle extract (available anywhere that sells
vitamins & herbs, even WalMart) to help our livers deal with these meds.

Don't give up hope. Once a DMARD kicks in for you, you'll feel much better
and there are lots of meds out there now that weren't around until recently.
Many more options. The rough part is jumping through the hoops to get to the
med that works for you.

And in many ways it's hardest at the beginning. Then you don't know how you
will ever be able to live like this. Over time you learn that even when your
in loads of pain and dragged out and fed up, you WILL get through it because
you've done it before. You don't WANT to ever do it again, but when you have
to, you know you can survive.

> The thing that concerns me the most is how it seems directly correlated
> with my emotions. Am I the only one that experiences this?

we all experience this, you certainly are not alone in it! Stress and ANY
chronic illness feed off each other. Stress makes you feel worse which
stresses you which makes you feel worse which.....

It sounds like you have a lot going on that can really stress you out. Do
whatever you can to give yourself a break or a chance to mellow out a bit
here and there, even if it's just closing the bedroom door for a half hour of
peace. Bubble baths or listening to quiet music on the walkman are other
good options to ease things just a bit. Every little bit helps some.

> Aw, I don't want to whine.

don't worry about that - one of the functions of ASA is as a whine outlet.
We all indulge from time to time.

> Oh, wait, I was on prednasone, but went off of it cold turkey in Jan
> 06 because I was gaining between 15-20 lbs a month. I'm already a
> very big girl. I can't handle any more weight on my poor joints. So
> yes, I know that has escalated my pain considerably. I knew it would.
> I decided to trade it off. Somedays I think that was an idiotic
> decision.

Oy! how much pred were you on and did your doctor know you were going off it
cold turkey? It's really much better for your system to wean off it unless
you were on a very low dosage. The rebound from being on the pred isn't
helping anything right now. That *should* be less of an issue, the futher
you are away from pred use, but at the 2 month mark your body is still
recovering.

And even knowing all the risks and complications of pred, there will still be
times when you fantasize about going back on it. Heck, my dad was unable to
have bypass surgery on his heart because of his osteoporesis from RA and
steroid use. Still, I have used pred bursts from time to time (no long term
use, thoug) and really had to talk myself out of asking for more when I had
to hold my DMARDs in the face of a tenacious virus last fall.

> Okay, now I will shut up.

Don't shut up, please! Keep talking, that's what we're here for!

Signature

Nann
remove the Gator cheer to email me
Simply the thing I am shall make me live --- William Shakespeare

Reply to this Message

Jan O'Keeffe - 09 Mar 2006 16:20 GMT

dld-
Any chance you have any infection anywhere (teeth, bladder, gall bladder,
appendix, etc?). That really triggers me. I am doing great on Remicade and
MTX but prior to Remicade nothing really helped. Jan O'

> Hey guys,
>
[quoted text clipped - 40 lines]
>
> -dld

Reply to this Message

`dld` - 10 Mar 2006 08:08 GMT

Yes, I did taper off of the prednasone. I didn't want a total crash
and burn. But unfortunately, I didn't have any other meds to stop my
fall. I had just started to see the new R.A.. She is 150 miles
awayand at this point I see her once a month. She is wanting to
continue that until I start to see improvements.

My liver tests are bad. Already. They did the cat scan on me and
decided that they still had some wiggle room with it.

As far as the infections go? The second I went on prednasone I got
sick. I've always been a sickly person. But this is out of hand.
yeesh Since september -05 I've had 4 continuous months of bronchitis,
a kidney stone, a bladder infection, double ear infection, chronic
sinusitis, and chronic throat pain. I've been on more antibiotics than
I can count. At one point I was on them one month. For that I was
rewarded with one week of non-sick. My dad was sprayed with Agent
Orange in Vietnam. That damaged me. I get every symptom he gets.
Only 30 years earlier.

I'm just so overwhelmed. I don't know what to do or where to turn. I
do what the dr.'s tell me too. I read. I follow their advice. My
family is behind me 100 %. And I just get worse. It's like I hit the
brick wall of life.

I have my fingers crossed for the enbrel. I know that it won't make an
immediate difference. At this point, I just want something to arrest
my scarily rapid slide downwards. Anyway, my R.A. is talking about
wrestling with my insurance next month to get me it. Well, the 22nd of
this month.

One day at a time.

Y'all are so great. You have no idea.

-dld

Reply to this Message

Charrlygrl1 - 10 Mar 2006 17:10 GMT

Hey Did,

Maybe you could ask your RD about the injectable?
I was on a small oral dose of MTX at first, and it worked. Then it
stopped. We gradually upped it to 8 pills per week. It was working,
then stopped.
I am also on Enbrel, prednisone (tapering off), Azulfidine, Clinoril
(an NSAID), and ultram for pain.
My doc had me switch to the injectable MTX, and it worked wonders for
me. It truly did. It was a three year journey for me to find the right
drug combo.
Good luck to you,
Char

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