RE: Any Information or First Hand Experience with Methotrexate -

[Guest guest]

I have been told by the doctors that prednisolone isnt for pain but

rather to save my joints for when the flare goes down. Not for pain,

ive been on it for three months and and all it has done is reduced

the inflammation, it has done nothing for my pain. As for

methotrexate, i had one dose it made me so sick, it did reduce the

swellings but helped in my opinion 'bring on' a cancer which was

otherwise dormant. Prednisolone and salphasalazine both reduced my

immune system to a point, then the metho was the last straw for my

body. The only thing that really works for pain in mind power or

analgesic. I now take narcotic analgesics and have finally got out

of pain, the other stuff isnt pain preventative. I wish i didnt get

cancer for all the stuffing around theyve done with my body, but i

must survive, so the rieters is now very much secondary for me. They

put me on 10 mgs a week in one dose + folic acid suppliments. Now i

have to go onto intensive chemo for cancer, please pray for me

[Guest guest]

Tony,

You have my prayers. Please let me know how you are doing as your

treatments progress. You have a tough time ahead, but I'm sure you have

the strength to beat this new challenge.

Pat

[Guest guest]

Hi Pat,

I can tell you my experience with MTX. I've been living with ReA for half

my life, I'm 48, and I was forced to retire from my career, which was working

in a factory with concrete floors, which has left me with permanent bone

damage in both feet. When I was first diagnosed I was treated with the

anti-inflammatories Tolectin, Indocin, and Butazolodin,

none of which helped. I then was taking Gold Sodium injections (a Native

Indian Remedy),

for 18 months, but I stopped when no results were happening

I have had constant flare-ups the whole 24 years, and now I have permanent

messed up hands, wrists, ankles, and feet, especially toes which don't look

like toes now.

Here's a funny story: I was hospitalized for a week when I finally sought

treatment, three years ago,and I was in really bad shape. First I was

x-rayed, and about an hour after I was back in bed, the xray technician came in

my

room looking for me. She had to see my feet. She wanted to see how they looked

on the OUTSIDE. She thought that maybe the machine was broken. haha

I have been on MTX for almost 3 years, and I am happy with the results.

Before the MTX, I would get a huge flare-up every other month. I describe the

flare-up as feeling " like I was run over by a truck " . I never have those now. I

do have isolated flare-ups in various random joints. Right now my left pinkie

is throbbing, and the fore-finger on my right hand is killing me. I am taking

Methadone 40mgs 4 times daily for the pain. The only other med I take is Folic

acid 2mgs daily.

I do have one very bad side effect, which started occuring about 9 months

ago. I get an ulcer on the side(s) of my tongue. It is round, 3/16 " diameter,

and lasts 2 weeks. They are painful enough that I have to use analgesic paste

(regular OTC Red Cross brand

in daytime), and prescription stuff, Triamcinolone Paste at bedtime. The

ulcer lasts 2 weeks. I can only take liquids, Carnation Liquid Breakfast, or

Oatmeal and Cream Of Wheat. Chewing food keeps it from healing.

I can live with this because I have been taking Cortisone Injections

about every three months, and boy, do they make me fat. Good Luck Pat, Harv in

Motown

[Guest guest]

Tony, I second 's post. We all are with you in prayer and thoughts.

Sincerely, Connie

[Guest guest]

Hi Harv,

Your reply made me smile several times; I can relate to many of the

comments you made - thanks!

Although my rheumatologist suggests Methotrexate, he is willing to let

me try Plaquenil first. If I do not find relief using this, Methotrexate

(injectable form) is definitely next. Both Plaquenil and Methotrexate

will be in addition to all of the medications that I am presently

taking. I suggested that I was becoming a " toxic soup " and he should

just send me to Love Canal (the infamous polluted site in Niagara Falls,

N.Y.)haha.

Thanks again -

Pat

[Guest guest]

Tony,

I have no personal experience with mexotrexate; however, when I read your post I

wanted to let you know that I will be praying specifically for you and for your

cancer to go into remission. My father begins his second round of chemotherapy

today. He has chronic lymphocytic leukemia (CLL). We are heart-broken that he

must deal with this condition, as you must be to deal with yours; however, we

are relying on faith, prayer, excellent medical personnel and cuting-edge

treatment options. I believe that is also the order of our reliance, that our

faith that God is in control (even when we are not) must come before anything

else. Please know that I will be thinking of you and keeping you in my prayers.

Please keep us posted on your progress.

With best regards,

(Charlotte, NC)

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[Guest guest]

Hi Janet,

Thanks for the reassurance! My rheumatologist discussed with me:

-folic acid

-side effects

-blood tests

We agreed to try Plaquenil first, but I just read the literature that he

provided and if you have any pre-existing problems with your retinas,

you should not take it. I have very loosely attached retinas . . . and

a call into the rheumatologist. There may no longer be a choice; it may

be Methotrexate after all.

Pat

[Guest guest]

Pat good luck on the Plaquinel. I had really good luck for the uveitis with

that! Also helped tons with the hands, arms, back, etc. Kathy from WI

[Guest guest]

In a message dated 9/23/2003 10:36:28 PM Eastern Daylight Time,

KABRHB@... writes:

> good luck on the Plaquinel

I had good luck with the Plaquenil, too. It mostly helped with my uveitis.

Did not help with my back/shoulders/neck/feet/hands or muscle/ligament pain. My

iritis remission lasted for about 3 1/2 years before my body got used to the

drug and it wasn't as effective. I still take two tablets in the evening...just

in case it is still helping a little bit. I hear that just about all the

DMARD do that, some taking a little longer than others before we start to have

symptoms return more often. It seems to happen with the MTX and TNF-a drugs,

too.

(Usually after a year or so) My indocin was the only one that worked and

worked and worked......until my kidneys decided it didn't like Indocin anymore.

Does anyone know if they are using the TNF-a drugs on you guys that have

Reiter's (ReA) or are they used pretty exclusively with AS/Psorisis/Crohn's?

From the

things I've read.....I can't remember seeing anything about that. All the TNF

drugs are very expensive, but there are programs that will help you with the

cost. If you are on Medicare and have no prescription plan....they will supply

you for a full year. If they didn't do this for me....I would never have

spent that much for a drug for myself....unless I was dying. They send the

packet

to my Rheumatologists every 3 months. It has to be refrigerated. We take it

home and my husband gives me the shot. Pain is Pain, but money is money.....What

am I saying???? There is a limit to what I will spend for my pain. The two

shots a month costs $1250.00 ($15,000. yr!!!!) Possibly, I would pay a little

more not to go blind. I'll try to find the pages that show the drug company

will help pay for these expensive drugs (I don't know how long they will

continue

to do this ....they have a motive for their madness. They expect that

Medicare will soon have a Rx drug plan and they will get paid that way and they

will

have their foot in the door and a lot of the market. Since there is three of

the same class drug....they have inventive ways to get into the market. From

what my Rheumy tells me it is working. :-) Best regards, Connie

[Guest guest]

Hi Kathy,

Thanks and I can't wait!

Pat

[Guest guest]

Connie,

My need is for Plaquenil to reduce the pain in all of the places it did

not for you and not in the eyes (presently, I do not suffer from

uveitis). I do have loosely attached retinas and although the warnings

for this drug are to not take it if you have ANY problems with your

retinas my ophthalmologist said he had not seen any problems using

Plaquenil in eyes. He set up an appointment in a few weeks to get a

baseline view of my eyes and I will be on a 6-month appointment schedule

with him to make sure it does not.

Indocin has not been brought up as an option yet.

Pat