RE: Hanging in / Methotrexate (Yes / No / Yes / No)

[Guest guest]

Went to my ENT doctor yesterday due to dry sinus / dry throat / hoarse voice.

Mentioned Methotrexate prescription given to me by a Rheumatologist. This

ENT doctor (female / Harvard Medical School) was suprised to hear that one would

prescribe such a drug without being " officially " diagnosed with an Autoimmune

disease. I told her I have not begun taking the stuff. She recommended

seeking a doctor who is good w/ diagnostic problems. If my problem is say

viral... this might not be a good approach. So I'm back to square one again.

This stinks!

[Guest guest]

" Mentioned Methotrexate prescription given to me by a Rheumatologist. This

ENT doctor (female / Harvard Medical School) was suprised to hear that one

would prescribe such a drug without being " officially " diagnosed with an

Autoimmune disease. "

Hi

Remember that it's often hard (even impossible) to get an " official

diagnosis " with the spondyloarthropathies: Even after 13 years my

rheumatologist isn't 100% sure that I have Reiter's in particular, but he

does know I suffer from a spondyloarthropathy. The treatments are pretty

much all the same. Recently my rheumatologist had to admit he didn't know

what the heck was going on with me to cause my hip to degenerate to the

point that I need a replacement. All he can do is use his assortment of

drugs and he has put me into remission by prescribing methotrexate. And if

that hadn't worked, he would've tried something else.

I also don't think that you should read too much into your ENT doctor's

comment - rheumatology is not her area of expertise!

Again, knowing the exact name of what you have would be nice, but it's more

important to take the drugs recommended to you by your rheumatologist and

give yourself a chance of getting better. You seem to be going around in

circles: Why not stick to one professional - a rheumatologist - and do what

he/she suggests? Lots of us here have had good results by doing that...

[Guest guest]

I agree to what said. In my case I was

diagnosed with Reiters because every thing came back

negative. They believe my secondary arthritis came

from Strep Throat. I got it five times in five months

before they took my tonsils out. You need to listen

to your MD and take the meds they educate you about.

That doesn't mean you don't have a choice. I

personally told the MD I didn't want to take the

Methotrexate (I am only 31 and very active, I own

three health clubs). I decided to take Remicade and

have been doing great after only a couple of

treatments. Went from barely walking to even running

at this point. I even wanted to quit taking the

Remicade to see if I'm in a remission but the MD said

it is good to stay on the course for at least 6 months

before going off. Listen to your MD's, let them

educate you, then make a decision, you aren't getting

better on your own!

Ham Lake, MN

*Unnecessary amounts of quoted text removed by moderator for poster.

[Guest guest]

" You need to listen

to your MD and take the meds they educate you about.

That doesn't mean you don't have a choice. I

personally told the MD I didn't want to take the

Methotrexate (I am only 31 and very active, I own

three health clubs). I decided to take Remicade and

have been doing great after only a couple of

treatments. Went from barely walking to even running

at this point. "

Hi

You are certainly a success story - great to hear !

By the way, what your doc said about staying on your drug for a while is

standard advice: Although I'm now in remission I have to stay on

sulphasalzine and mtx for a year or 2, then we'll start to think about

tapering off them (one at a time and slowly).

All the best,

[Guest guest]

---

I have just started on Methotrexate again(1 injection per week). I

have been in remission and drug free for about 6 years. Does

Remicade work better; faster? Last time it took about 5-6 shots to

start feeling a differnce. Also, my last bout with Reiter's, the

pain stayed in my feet and knees. This time, my neck is extremely

stiff and my right wrist is giving me issues. Have you had neck

problems with the disease?

[Guest guest]

Hi there,

I was on methotrexate for about a year, several years ago. Besides

making me feel nauseous for a couple days eventually I became so tired

I could do nothing without falling asleep. I got off that stuff. At

the time I was having issues with one eye and lots of pain from SI

joint and feet. I stopped the methotrexate, went on disability for 5

months and I got better. For me, it seems that rest and not abusing

whatever joint or acting up makes it better. I have been on Imuran

and cyclosporine (that was the longest one) and I hate them all. I

don't think they control my Reiter's that much and they make the rest

of me feel like I'm already one foot in the grave. I find that a good

attitude can make as much difference as those cytotoxic drugs, and you

feel better all over with a good attitude. It's difficult thought.

i'm going through a bad bout myself right now and am very stressed and

depressed. Trying to fight my way out of it. But I don't want to go

on cytotoxic drugs again. Physical therapy helps a lot and aspirin

seems to do as well as anything at pain control. And there's always

narcotics. And one more thing about those poisons--while on them I

developed an infection that killed my thyroid, I had mono, severe

bronchitis, Lyme's Disease and adrenal gland shut down. All

attributed to the cyclosporine. Lyme's disease is caused by a tick

bite, but I have always been an avide hiker and nature girl and used

to spend lots of time in the woods and even lived in the country for a

long time, and never got it. Now, I live in a city, work in an office

and sometimes sit on the lawn to eat my lunch in summer, and I got

Lyme's disease. I think if my immune system had been functioning

correctly, this wouldn't have happened. I can't say enough against

the cytotoxins.

[Guest guest]

,

Thanks for your response. There is nothing like hearing from someone else. I

have to stay on methotrexate. It is what got me on the mend last time. I was

diagnosed at age 29 with Reiters. I was on my hands and knees for at least 5

months. The only time I would stand is for my job(I am an outside salesman).

It took about 5 shots for me to feel the affects. I stayed on it for about 3

months. I have been drug free for 5 years. I am now 35 and I am having

another bout. It started again in my right ankle and has now affected both feet

my back and my neck(the neck pain and stiffness is awful, I didn't have that

last time). I am also taking sulfasalzine, indomethicine and hydrocodone. I am

hoping to fight it for another month and then go in remission.....just like last

time.

I got it from food poisoning. I ate some bad chicken salad at the golf

course.

What is your story?

Lance Bray

[Guest guest]

Hi Lance

Just to say, i'm a chicken salad victim too! A chicken salad leading to a

hip replacement - who would possibly imagine?

[Guest guest]

I would like to hear more about your story. How old when diagnosed?

How many bouts have you had? How did you get Reiters?

It is great to hear from you.

Lance Bray

[Guest guest]

Lance, et al,

I have always had " creaky " joints, since I was a kid I had pain in my

shoulder and knees. They think I may have had something like Reiters

ever since then. But the kicker for me, was a trip to Indonesia.

They don't refrigerate their milk or pasteurize it. And I had a super

hot pepper at a meal and asked for some milk to kill the burn. And I

was sick for a week after that. When I got back home the Dr. said I

had an intestinal bacterial infection. Duh! And since I couldn't

afford the culture and all the tests they suggested, they sent me home

and told me to take Pepto-Bismol! I was in college at the time and

had no health insurance. Well, I continued having problems for almost

a year--on and off. And then I had my first eye flare up and then

about 6 months later my knee swelled up and my SI joint was hurting.

A Dr. at the college health clinic is the one that put it all together

and sent me to a Rheumy where I was diagnosed. Since then I have been

on almost every NSAID there is and at least three different cytotoxins

and Prednisone and multiple injections of cortisone everywhere. The

cytotoxins might have controlled my eye condition a little, but they

never did anything for my pain. All they did was make me feel

miserable. I don't know if I've had " remission " per se. I've got

chronic Reiters. I always ache and several times per year I have eye

flare ups. Right now it's the feet, but they are almost better--and I

take no NSAIDS (except aspirin sometimes) and no poisons and I had one

week of oral steroids (which made me wish I was dead). I know we are

all different. What works for one person, doesn't work for another.

Other people may not have that much trouble on the poisons, but they

turn me into a zombie and make me lose all zest for life. The funny

thing is, I have never had organ damage or even raised kidney or liver

values on a chem panel. That part has always been fine.

I have fibromyalgia along with this and that I think is the cause of

my general achiness and tenderness and some fatigue. So it's hard to

tell if I have remissions or not. I am now 35 years old and was

diagnosed definitively about 9 years ago.

-- In , Lance Bray <bray_lance@...> wrote:

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> ,

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> Thanks for your response.

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[Guest guest]

,

How old were you when you were diagnosed? How long have you been

fighting this?

Lance

[Guest guest]

Lance,

I was 27 years old and am now almost 36

,

> How old were you when you were diagnosed? How long have you been

> fighting this?

>

> Lance

>