Re: Methotrexate Question / Concerns - Urgent

[Guest guest]

I have a bottle of Methotrexate in my hand (prescribed by a Rheumie

at NY HSS). I just read the risks / side effects / drug

interaction / etc. Geeze! I am very concerned about taking this

drug. I've had frequent sinus infections ... recently had

bronchitis and, lastly, enterococcus faecalis continue to show up in

various cultures (urine).

Considering all this, should I be experimenting w/ this type of

drug? I will call my Dr. at NY HSS to discuss.

Hi

Lots and lots of us here are on methotrexate - it is still 'the gold

standard' drug for treating many inflammatory forms of arthritis. Don't

panic!! It is a good drug, but like most drugs, causes side effects in some

people, but the serious ones are rare.

, if you want this disease to have any chance of going into remission,

you need to start on one of these drugs and stick with it for 3 months at

least, to give it a chance to work.

I probably shouldn't write this, but here goes: , you ask us for advice

all the time, but don't seem to believe any of the good advice that's been

given to you. It's getting tiring repeating it al the time. So, take the

methotrexate as prescribed and wait patiently for it to work. Please? You

won't get well by doing nothing.

P.S; Take it with food and make sure you take the folic acid too, to lessen

side-effects.

[Guest guest]

Hi

Pick up a bottle of Ibuprofen, Tylenol, Aspirin or any other over the counter

medication and read all the small print on the package inserts. After reading

them you would probably not want to take any of those either. They are a lot

more dangerous than folks like to think.

Again as others have told you, Methotrexate has been used for years by some on

this list and they are still here alive and kicking.

, you go to the doctors and you want answers, but because they have not come

up with a solid diagnosis you keep looking for a diagnosis. Do you even think

that maybe, by taking the Methotrexate and it works, that will help the doctors

arrive at a final diagnosis.

As many of us have told you, we went 10 to 20 odd years before we were finally

diagnosed. For some of us that has not helped as even with the drugs available

today, it is too late.

Also many of us have been guinea pigs for new drugs over the years and we did

not know even what side effects could possibly be.

Even placeboes have caused some major reactions in some patients.

I look at it this way. When I walk out of the front door I could get hit by a

car, lightning, tornadoes, or stray bullets. Is that going to stop me from

going out the door?????

Hope this helps .

Fr. Dave

[Guest guest]

>

,

It is my understanding that the drug companies have to list anything that

has happened during drug testing or usage or whatever to cover themselves

and protect from law suit.. anything from a hangnail to catastrophic

illness. I never read those side effect sheets anymore.. they scare the

**** out of me and I woudl not take any meds if I saw all the things that

they say COULD happen... If there are things that could especially happen

then the pharmacist or dr usually will mention them.

I take 8 once a week though I have taken 6 at times.. If my liver enzymes

were up the dr drop the metho dosage a little. It is important to take

them no closer than 7 days apart.. and to take folic acid which will help

protect you to some degree. Ihave been on metho since about 1997 or so

..first drops in water.. then the pills.. no shots though like some people

take.

I always take them with food.. they have made my stomach a little upset

sometimes but nothing major... for me anyway this is the case

expressed his worries:

I just read the risks / side effects / drug

> interaction / etc. Geeze! I am very concerned about taking this

> drug. I've had frequent sinus infections ... recently had

> bronchitis and, lastly, enterococcus faecalis continue to show up in

> various cultures (urine).

>

> Considering all this, should I be experimenting w/ this type of

> drug? I will call my Dr. at NY HSS to discuss.

>

> Has anyone tried this drug? I'm to take 6 tablets (2.5 MG)at once

> weekly. Having said I'm concerned, I'm at a point where I'm

> willing to try anything. Very sick feeling today coupled w/ neck

> ache and lower back pain.

Liz Kilpatrick

On the banks of the Mighty Mississippi River, Davenport,IA/Quad cities

~~~~~~

" People will forget what you said, people will forget what you did, but

people will never forget how you made them feel. " ~~~~~~~ Maya Angelou

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

EMAIL: juliette@...

PERSONAL HOMEPAGE PAGE http://members.tripod.com/~LizK

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

[Guest guest]

:

Thanks. And thanks for the " strong " view.

I've been searching searching searching. No answers. If I'm

annoying .. my appologies. You can only imagine what I'm putting my

wife / family through.

Eventually, I'll give thess drugs a chance. May be start over the

weekend when I'm not a work.

- no offense taken. I still enjoy your hearing your

thoughts / views.

Thanks! I mean it.

[Guest guest]

Fr. Dave:

Thanks. Always appreciate your view. Glad to hear others have

used this drug. I will eventually give it a shot.

Sorry if I ask too many questions (sometimes repeative).

I'd like to give the Doxy / Ripfmin treatment a shot. I'm trying to

meet w/ Dr. Vasey / in Tampa, FL. We'll see.

The funny part of all of this....... no doctor has labeled me w/

Reiters Syndrome. That's why I am concerned about taking drugs

that alter you immune system. What if my condition is being

caused by an underlying infection? I take this methotrexate... bam

this infection penetrates vital organs / blood stream. I just wish

someone one would say -- " Hey - you have Reiter's Syndrome " . No

doctor has.

Thanks again.

[Guest guest]

Liz:

Thanks. I really do appreciate your info / advice.

I may give it a shot this weekend. I am going to speak w/ my

Doctor today or tomorrow and try on Saturday.

I hope my questions are not annoying. I'm just looking for

information. I really don't want to take any drug. I never have

and really don't want to start.

Liz - you've offered a great deal of help / support. Thank you..

thank you ... thank you.

Regards,

[Guest guest]

wrote:

I just wish someone one would say -- " Hey - you have Reiter's Syndrome " . No

doctor has.

Welcome to the Wonderful World Of Spondyloarthropathies. You are now learning a

lesson that most of us have learned in the last 30 odd years. There is no

definitive diagnosis in the beginning. The only reason you are looking at

Reiter's is that one doctor said possibly Reiter's. That possibility has sent

you looking for symptoms to match to the symptoms you have. That is a very

dangerous game..

I know exactly how your wife feels, it is exactly the same feelings our spouses

or families have gone through while we awaited a diagnosis. For instance, one

doctor told me my pain was all in my head so I asked for a referral to a

psychiatrist. That psychiatrist saw me, and sent a letter back to the doctor

saying it was not in my head.

The internet has enabled us to learn things that we couldn't have 10 or more

years ago. Unless one bought the medical text books and journals of the day and

to do with our diseases.

, knowing a bit about your health care system down there, this chasing

around to doctor after doctor, has to be taking a terrible toll on your family

finances and I worry about that. If you are paying for all these MRI's, CT

Scans, x-rays and lab work out of your own pocket, I hate to think of the

consequences down the road.

I think I can sum up all the advice you have received here with a short

sentence. Relax, we have all been through this before and some of us are still

going through it and we are still here 20 or more years later, still breathing,

and still continuing to contribute to society. That contribution may be

lessened a bit but we still go out there and put one foot in front of the other

and get through the day assisted by medications.

You have to know that you and your family are in our prayers daily.

Fr. Dave

[Guest guest]

My dr did.. but 22 years later anothe dr said... no you have psoriatic

arthritis. I thikn i have both because my mother did... And thank goodness

the treatment is similar so I didn't get damaged further.. just was a

mystery why certain things were happening that normaly don't with

reiter's..

On Thu, 7 Sep 2006, dewi@... wrote:

> wrote:

>

> I just wish someone one would say -- " Hey - you have Reiter's Syndrome " . No

> doctor has.

>

Liz

On the banks of the Mighty Mississippi River, Davenport,IA/Quad cities

~~~~~~

" People will forget what you said, people will forget what you did, but

people will never forget how you made them feel. " ~~~~~~~ Maya Angelou

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

EMAIL: juliette@...

PERSONAL HOMEPAGE PAGE http://members.tripod.com/~LizK

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

[Guest guest]

Thanks .

I just don't want you to suffer unnecessary joint damage!

Also, the worse your arthritis gets, the harder it will be

to get it under control.

Take care,

[Guest guest]

Just another thought :

I've had this for 12 years now and my rheumatologist still

doesn't have the right label: He thinks it's Reiter's but

refers to it as 'undifferentiated spondyloarthropathy'. My

point to you is, sometimes we never get the right label for

our disaese, but that doesn't change the treatment path, or

the need for treatment, at all.

[Guest guest]

Fr. Dave:

You've hit the nail on it's head.

My first Rhuemie told me the pain / symptoms were in my head.

Here's another story for you. Back in July 2004, I was doubled over

dry heaving... sick ... pain in stomach. I kept dry heaving.

Initial visit to my GI doctor resulted in a " you're fine..it's all

in your head. If it makes you happy, try 10 tablets of

doxycycline. That will kill 90% of the disease out there. " We'll

guess what, it didn't. I was went to ER room at Columbia

Presbytrian Hospital the next week w/ chest / ab pain. Their view

after blood and x-rays was a simple case of gastritis. I was

released. A few days later, the dry heaving got really bad. I

went back to my GI doctor how did an Helicobacter Pylori test. It

came back POSITIVE. I was treated. It wasn't in my head.... the

problem was in my stomach (literally).

I'm going to hold off on the Methatxxxx until I speak w/ ID doctor

in Boston and Rheumie in Tampa. I'll take it from there.

Thank you Fr. Dave!!!

Regards,

[Guest guest]

Can't spell Methotrexate????? Think of the old Mickey Mouse Club theme song.

MET HOT REXAT the E you can add. Ok Mousekateers, time for bed.........

Fr. Dave

PS, as for hitting the nail on the head , I have some very sore thumbs and

fingers from the misses.

.

[Guest guest]

hi everyone,

lets not tar all doctors with the same brush.30 years

ago i had the classic triad of symptoms that are common in Reiter's

Syndrome and was informed by a doctor at Newcastle General Hospital

UK, on his first examination of me that i had Reiter's,and this was

only one or two weeks after the onset of symtoms and being refered

to hospital by my G.P.Lets not forget Reiters is a syndrome and not

everyone showing some of the symptoms will be classed as having

Reiters Syndrome, otherwise it would be too simple for the doctor

to label anyone as having Reiter's

laquecha

[Guest guest]

Thanks ! Have a great evening / weekend. Joe

>

> Thanks .

> I just don't want you to suffer unnecessary joint damage!

[Guest guest]

i love the band trex (marc bolan rocks!) so i remember by typing " metho

trex ate "

works for me but i like mickey too! blessings Bella

>From: <dewi@...>

>Reply-

>< >

>Subject: Re: Re: Methotrexate Question / Concerns - Urgent

>Date: Thu, 7 Sep 2006 21:18:12 -0600

>

>Can't spell Methotrexate????? Think of the old Mickey Mouse Club theme

>song. MET HOT REXAT the E you can add. Ok Mousekateers, time for

>bed.........

>

>Fr. Dave

>

>PS, as for hitting the nail on the head , I have some very sore thumbs

>and fingers from the misses.

>

>

>

> .

>

>

>

[Guest guest]

My spelling problems have been resolved. Thank you Bella / Fr.

Dave. Now if I could only fix my pain and suffering ...

Have a great weekend.