Re: Venting and question...I think?

[Guest guest]

Hi Cheli,

 

I get what you are saying.  I too feel my body doesn't handle conventional meds

very well.  I've gone about 12 yrs. now w/o any meds.  I just deal w/the pain

as the fear of side effects is worse for me after what I went through w/a

reaction to methotrexate.  So don't feel bad about how you feel.  We each have

to do what is best for us.  I am finding this list to be a big comfort to me. 

It's nice to know I'm not alone after having RA for 19 yrs.

 

So thanks everyone for being here.  I don't post much but do read everything. 

Healing energy to all.

Sheryl

From: hlhsinfo@... <hlhsinfo@...>

Subject: [ ] Venting and question...I think?

" RA-support " < >

Date: Monday, April 19, 2010, 8:22 PM

 

Ever since I found out I have RA it seems like my pain has gotten worse. I know

some of you might think...now that she know she is associating it to RA....

Really I don't think that I am. I had this as a kid and I do know what this pain

is all about. I went in complaining of pain but since I started meds for it I

feel like it has gotten worse. It feels like the meds brought more of the pain

on. I know this sounds crazy but it feels worse. When I was a kid they never

gave me meds (long story) I went though my teen and up until now 35 without

feeling much. I plaquenil did nothing for me. I think it made me feel worse. I

have been on MTX 10mg for a few months now. It helped in the beginning but now I

feel like I'm broken again. I did fine for awhile and then the mouth sores

started so I went from 1 folic acid to 4 on Sat and Sun. Then 3 M-T and on

Friday 4 MTX pills. I don't think I'm having a flair right now cause the last

one I felt like crap. I don't

feel like crap right now but I do feel pain. I have a doctors appointment on

May 7th so I will be talking to him. I know it is time to up my MTX. I'm just

not looking forward to any side effects. LOL. I sometimes wonder since I didn't

take any meds when I was a kid and I came out ok with no damage. Yes I was very

lucky. Then maybe my body wasn't designed to take meds. I'm not sure what I'm

saying anymore. Lol. I think I'm just losing it right now. Lol. I think maybe I

should just shut up and end this email to put all of you out of your misery.

Lol. Just joking. Thanks for listening.

Cheli

[Guest guest]

Hi...

I found taking the MTX injections to be much more effective, it is easier on

your digestive system and it works better overall if you have to take it long

term as I do. I take 1.2 mg of Folic Acid every day, it comes in 400 msg

tablets. You should also consider taking vitamin D, as MTX seems to deplete that

as well. If you are not in pain then feeling like crap goes with the territory,

I get to have one or the other. With the right meds though, you get to feel like

crap all the time and not have the pain. Hope this helps.

Stan

Seattle, Cloudy.

From: hlhsinfo @

" RA-support " < @ groups .com>

Sent: Monday, April 19, 2010 6:22:22 PM GMT -08:00 US/Canada Pacific

Subject: [ ] Venting and question...I think?

Ever since I found out I have RA it seems like my pain has gotten worse. I know

some of you might think...now that she know she is associating it to RA....

Really I don't think that I am. I had this as a kid and I do know what this pain

is all about. I went in complaining of pain but since I started meds for it I

feel like it has gotten worse. It feels like the meds brought more of the pain

on. I know this sounds crazy but it feels worse. When I was a kid they never

gave me meds (long story) I went though my teen and up until now 35 without

feeling much. I plaquenil did nothing for me. I think it made me feel worse. I

have been on MTX 10mg for a few months now. It helped in the beginning but now I

feel like I'm broken again. I did fine for awhile and then the mouth sores

started so I went from 1 folic acid to 4 on Sat and Sun. Then 3 M-T and on

Friday 4 MTX pills. I don't think I'm having a flair right now cause the last

one I felt like crap. I don't feel like crap right now but I do feel pain. I

have a doctors appointment on May 7th so I will be talking to him. I know it is

time to up my MTX . I'm just not looking forward to any side effects. LOL . I

sometimes wonder since I didn't take any meds when I was a kid and I came out ok

with no damage. Yes I was very lucky. Then maybe my body wasn't designed to take

meds .  I'm not sure what I'm saying anymore. Lol . I think I'm just losing it

right now. Lol . I think maybe I should just shut up and end this email to put

all of you out of your misery. Lol . Just joking. Thanks for listening.

Cheli

[Guest guest]

Hi, Stan. Miss you. Speak up more often. How are you doing these days?

Sue

On Apr 20, 2010, at 12:31 PM, stanpfister@... wrote:

> I found taking the MTX injections to be much more effective, it is

> easier on your digestive system and it works better overall if you

> have to take it long term as I do. I take 1.2 mg of Folic Acid every

> day, it comes in 400 msg tablets. You should also consider taking

> vitamin D, as MTX seems to deplete that as well. If you are not in

> pain then feeling like crap goes with the territory, I get to have

> one or the other. With the right meds though, you get to feel like

> crap all the time and not have the pain. Hope this helps.

[Guest guest]

I know what you mean about side effects. I started methotrexate in Oct. 2008

and started having major problems in Oct. 2009. They had to give me a Medrol

dose pack a few times. They upped the mtx but that made it worse. Finally, I

asked if I could stop the methotrexate after suffering severe right ankle pain

from Oct. to January 2010. I stopped it the last week of January and I have

been getting progressively better ever since. No ankle pain in right ankle at

all!!!!

I do take Plaquenil and sulfasalazine and Naproxen.

I took me 4 months to convince the doctor it was the side effects of

methotrexate.

Helen

>

>

> Hi Cheli,

>  

> I get what you are saying.  I too feel my body doesn't handle conventional

meds very well.  I've gone about 12 yrs. now w/o any meds.  I just deal w/the

pain as the fear of side effects is worse for me after what I went through w/a

reaction to methotrexate.  So don't feel bad about how you feel.  We each have

to do what is best for us.  I am finding this list to be a big comfort to me. 

It's nice to know I'm not alone after having RA for 19 yrs.

>  

> So thanks everyone for being here.  I don't post much but do read

everything.  Healing energy to all.

>

>

> Sheryl

[Guest guest]

I look through the posts just about daily 'cause there mught be someone with an

issue that I know something about, usually it's the newbies. I'm getting to be

an oldbee so I am not too surprised when many of the same issues come up.Long

term RA is really a learning experience, what we've all really learned is that

it is a nightmare.

Stan

Seattle, cloudy.

 <marysue@...>

Sent: Tuesday, April 20, 2010 4:57:57 PM GMT -08:00 US/Canada Pacific

Subject: Re: [ ] Venting and question...I think?

Hi, Stan. Miss you. Speak up more often. How are you doing these days?

Sue