Re: Re: Rheumy confusion-HELP

February 24, 2006

,

I have been on metho for a long time. I had to stop taking the pills due

to stomach issues. Plus the liver test were not right. I have been on the

injectable for almost five years now. So far I have had no side effects. I

think I have been lucky. I have not problems with giving myself the

injections. Since I am trying to come off of predisone, metho is all I have

right now.

Lynn (MeMom)

[ ] Re: Rheumy confusion-HELP

> ,

> Each person is different with MTX. There are many of other drugs you

> can use. But MTX is usually one of the first ones. Plaquinil is

> another drug that comes to mind.

>

> For me it was horrible. I had every side effect I could get. I was

> so sick I just laid on the bathroom floor most of the time...it was

> closiest to the toilet. I had constant vomiting, diarrhea, nausea,

> dizziness, eye sores, mouth sores, throat sores, severe fatigue and

> then I got drug induce pneumonitis. Not amount of folic acid or

> leukovorin seemed to help with side effects. This is a chemo drug

> and though its used is much smaller doses for RA it has the potential

> to have the many of the same side effects.

>

> I happen to be one of those people who's body sensitive to drugs. I

> was working full-time when I started on MTX...it ended my career and

> caused me the lose of my job. I am now out on long term disability.

> Everyone is different..

>

> Toni

>

> Jane,

>>

>> Welcome to the fun world of autoimmune disorders! I'm

>> on prednisone, plaquinil, and methotrexate, but my

>> rheumy has never given me a diagnosis either. She has

>> often said, " It doesn't look like anything I know of. "

>> I snagged a peek at a billing sheet and saw she coded

>> lupus for the insurance company (that's what my PCP

>> had already diagnosed me with), but because my labs

>> are odd and some of my symptoms are rare, my rheumy

>> tends to be pretty cagey. For me, I've decided that

>> the bottom line is that she's (finally) treating me in

>> a way that's helping. Yes, it would be validating to

>> have her tell me she finally believes I have lupus,

>> but I don't see it happening.

>>

>> By the way, good luck on the methotrexate. I've been

>> on it about 1-1/2 months and it's harsh, but it helps.

>> If you start getting sick, ask about upping the folic

>> acid they have you take with it; I had to take 5

>> mg/day to make the nausea quit.

>>

>> __________________________________________________

>>

February 24, 2006

Toni, that's terrible. I had no idea that one can get such horrible side effect.

I must be blessed, in an insane sort of way, not to have any side effect from

MTX.

Ms radar <aclavern33@...> wrote:

,

Each person is different with MTX. There are many of other drugs you

can use. But MTX is usually one of the first ones. Plaquinil is

another drug that comes to mind.

For me it was horrible. I had every side effect I could get. I was

so sick I just laid on the bathroom floor most of the time...it was

closiest to the toilet. I had constant vomiting, diarrhea, nausea,

dizziness, eye sores, mouth sores, throat sores, severe fatigue and

then I got drug induce pneumonitis. Not amount of folic acid or

leukovorin seemed to help with side effects. This is a chemo drug

and though its used is much smaller doses for RA it has the potential

to have the many of the same side effects.

I happen to be one of those people who's body sensitive to drugs. I

was working full-time when I started on MTX...it ended my career and

caused me the lose of my job. I am now out on long term disability.

Everyone is different..

Toni

Jane,

>

> Welcome to the fun world of autoimmune disorders! I'm

> on prednisone, plaquinil, and methotrexate, but my

> rheumy has never given me a diagnosis either. She has

> often said, " It doesn't look like anything I know of. "

> I snagged a peek at a billing sheet and saw she coded

> lupus for the insurance company (that's what my PCP

> had already diagnosed me with), but because my labs

> are odd and some of my symptoms are rare, my rheumy

> tends to be pretty cagey. For me, I've decided that

> the bottom line is that she's (finally) treating me in

> a way that's helping. Yes, it would be validating to

> have her tell me she finally believes I have lupus,

> but I don't see it happening.

>

> By the way, good luck on the methotrexate. I've been

> on it about 1-1/2 months and it's harsh, but it helps.

> If you start getting sick, ask about upping the folic

> acid they have you take with it; I had to take 5

> mg/day to make the nausea quit.

>

> __________________________________________________

>

February 24, 2006

In a message dated 2/24/2006 5:37:00 AM Central Standard Time,

ruf-caimi@... writes:

Since I am trying to come off of predisone, metho is all I have

right now.

Lynne, How is weaning off the prednisone going? Any tips for someone who is

trying to do it themselves? I cant seem to wean myself off any lower than 10

mg...grrr. any advise is welcome! hugs

from PA

February 24, 2006

In a message dated 2/24/2006 1:43:28 PM Central Standard Time,

ruf-caimi@... writes:

It is a drug that has worked well for me.

Hope this helps,

Lynn

Lynne thank you. I will try tapering it down slowly like you suggested. yes

prednisone is a good drug for me also, but its giving me stomach trouble.

Everything i eat lately gives me horrible indigestion and bloating...So the

sooner i am off of it the better. Tylenol Pm helps me at night sometimes, but

i try to stay away from it. Hope the new meds help. HUGS

from PA

February 24, 2006

,

I has been trying since I have been on predisone for nine years. I am

doing it alone, so it is trial and error. I only drop 1/2 mg. at a time.

Once I do that I leave it there for a few months. Try to do it sooner and

my heart was racing so I had to go back up. After sometime I decrease it

again but only by 1/2 mg. I can tell you that there is much more pain and

stiffness. Sometimes my joints hurt so badly, especially in the middle of

the night. I start taking ultraset but not sure it does a lot. I do it

makes me tired but of course that could be the RA. I was allergic to

Celebrex. Voixx raised my blood pressure and I had kidney damage from Gold

injections. I don't know what is going to take the place of the predisone

but I will cross that bridge when I get there. Remicade, Enbrel and Humira

are all out for me. Due to my stomach and the infection risk. Tried

Remicade and it did not work out for me. I can't put much through my

stomach. That also includes fosamax and those drugs. I believe I will be

trying Boniva but the new IV. That way it doesn't go near the stomach,

liver or pancreas.

I am getting off the predisone because the doctors recommend that I do so.

It is a drug that has worked well for me.

Hope this helps,

Lynn

Re: [ ] Re: Rheumy confusion-HELP

>

> In a message dated 2/24/2006 5:37:00 AM Central Standard Time,

> ruf-caimi@... writes:

>

> Since I am trying to come off of predisone, metho is all I have

> right now.

>

> Lynne, How is weaning off the prednisone going? Any tips for someone who

> is

> trying to do it themselves? I cant seem to wean myself off any lower than

> 10

> mg...grrr. any advise is welcome! hugs

> from PA

>

February 24, 2006

, you might not want to read this, but I was weaning myself from 10 mg

a day. I got down to 6 mg and the 'tube' the sciatic nerve goes through

started swelling, causing my right leg to be more numb and pain and tingling

down to my toes. If I carried anything, I had to hold it in my right hand

behind me so I could bend my back forward and to the left so it wouldn't

pinch hard. When sitting I had the same difficulty, leaning forward and to

the left. I went back up to 12.5 mg for a week and now I'm back at the 10

mg. I can't see a pain doc until the last of March, so if I need to, I'll go

higher on the prednisone fi i have to. I don't want to suffer any more than

I have to. My best advice is to go slow, don't try to rush it. If it gets to

be a problem, chances are that you tried to go down too quickly. If you do

go down too fast, go back up to the quantity you were at before the problem

arose for a while longer. That's what I learned.

Dennis

Re: [ ] Re: Rheumy confusion-HELP

>

> In a message dated 2/24/2006 5:37:00 AM Central Standard Time,

> ruf-caimi@... writes:

>

> Since I am trying to come off of predisone, metho is all I have

> right now.

>

> Lynne, How is weaning off the prednisone going? Any tips for someone who

> is

> trying to do it themselves? I cant seem to wean myself off any lower than

> 10

> mg...grrr. any advise is welcome! hugs

> from PA

>

February 24, 2006

I was having the same problem with indigestion, mostly caused by my

anti-inflammatory, and my Rheumy had me on Prilosec OTC. I took it at the

wrong time of day for a while, so it didn't really work at first. I was

taking it with food at various times and it didn't stand a chance of

helping. I finally read the instructions (I am a man after all) and now I

take it first thing in the morning with my other meds and eat about an hour

later. Now I'm taking one every other day and it's still working. Have you

tried that yet?

Dennis

Re: [ ] Re: Rheumy confusion-HELP

>

> In a message dated 2/24/2006 1:43:28 PM Central Standard Time,

> ruf-caimi@... writes:

>

> It is a drug that has worked well for me.

> Hope this helps,

> Lynn

>

> Lynne thank you. I will try tapering it down slowly like you suggested.

> yes

> prednisone is a good drug for me also, but its giving me stomach trouble.

>

> Everything i eat lately gives me horrible indigestion and bloating...So

> the

> sooner i am off of it the better. Tylenol Pm helps me at night sometimes,

> but

> i try to stay away from it. Hope the new meds help. HUGS

> from PA

February 24, 2006

Lynn;

Since prednisone has worked so well for you, why does your MD want you to get

off of it?

Ruf-Caimi <ruf-caimi@...> wrote: