Methotrexate

[Guest guest]

In a message dated 02/10/01 08:55:22 GMT Daylight Time,

Homeschool4us123@... writes:

> I wanted to find out if anyone on this list is using or has used this

> medication. If so what was your experience with using this medication, the

> good and the bad?

Hi ,

I have used Methotrexate, (as have most on here),

and I had a very bad experience with it.

For some reason, I turned Purple on my Chest

and Stomach, and felt really ill for about 4 days.

My Rhemy told me to stop, and everything

cleared up after a day or two.

I don't know why this should happen to me, but,

as the saying goes, 'what is good for one, is not

neccasarily good for another!!!!'

What I do know, in my case, is that the PA and AS,

were possibly responsible for attributing to my

Heart Attack last April, (successful By-Pass in

the Summer!!).

Over the years my fitness level had been dropping,

and I had been taking less and less excercise

because of the pain, etc. What I should have done,

is applied more positive thinking into my lifestyle

to try and overcome the disibilities that they

were causing.

I know that it is not easy, but sometimes, your

mind, rather than medication, may do the trick.

Mike (from the UK) (who is progessing quite well

after surgery, with the PA and AS, taking a 'back'

seat as my energy levels and fitness are getting

into shape!!!!)

[Guest guest]

- You'll find lots of info. on MTX in old posts. Personally, for

me, it has helped. However, I now have elevated liver enzymes and need to

get off of it. I'm starting Enbrel. I wish I would have been able to go on

enbrel right from the start, but most insurance companies insist you have

other methods and drugs fail before they'll approve it (and it costs about

$1000 a month without insurance!)

Anyway, find out what you can about the MTX. It does cause side effects like

nauseau, diarrea (sp?), mouth sores, etc. I could tolerate all of those, but

I can't tolerate permanent liver damage!

Good luck to you,

[Guest guest]

Kimberley -

Methotrexate is good stuff if managed properly. I'd highly recommend it. I've

been on it for many years now, along with various others (currently Enbrel and

naproxen sodium). What your Doc says about arresting the degenerative process is

right on target, in my experience.

Rob Glover

[Guest guest]

I have been on meth for about 4 years now and have practically NO side

effects. My blood is checked every month (white count has never faltered

except when I have a rare cold) and I get a liver biopsy every 2 years to

make sure the meth isn't affecting liver function.

Unfortunately, though, it doesn't do much for my PA, but it has kept my P

under complete control.

Best of luck with it. If you have a good doc that will keep check on you,

you shouldn't be scared.

[ ] Methotrexate

> Hello everyone,

>

> I went no mail for quite a while until I had my appointment with the

> rhumetologist to find out if I do in fact have Psoriatic Athritis. He was

a

> very good, caring, and thorough doctor and I'm very pleased with the

visit.

> It was worth the almost 6 months I've waited to go there!

>

> Well, the doctor believes that I do in fact have Psoriatic Athritis and he

> said that I do have signs of Fibromylsia also. He's sending me for a full

> series of x-rays which he says is about the only way to proove if someone

has

> psoriatic athritis or not. He said the x-rays will also show to what point

> the degeneration is. He did advise me that he does believe I have it and

that

> I have it to the point that I need to go on medication to help slow the

> degeneration process as I have problems walking or standing for more then

45

> minutes. He recommended to me to consider Methotrexate. He said that I

will

> need to stop breastfeeding my baby to take this medication and explained

it

> is a medication originally developed for cancer patients.

>

> My mother who is a chemist told me more about this medication. She said

that

> it works kind of like chemotherapy whereas it kills both good and bad

white

> blood cells and that those who use this medication must be screened before

> starting the medication and must have regular checks of their white blood

> count as well as it effecting the immune system, so those using it must be

> cautious about coming into contact with anyone who's sick and must take

good

> care of themselves when they themselves are sick.

>

> I wanted to find out if anyone on this list is using or has used this

> medication. If so what was your experience with using this medication, the

> good and the bad? Where could I find out more information on this

medication?

>

> I am concerned as I am going to only be 24 years old next month and am a

> homeschooling mother to 3 young children. I want to be there for my

children

> as they get older.

>

> Thank you in advance.

>

>

>

>

[Guest guest]

>

>

> He's sending me for a full

> series of x-rays which he says is about the only way to proove if

someone has

> psoriatic athritis or not. He said the x-rays will also show to

what point

> the degeneration is.

Just want to point out that even the joint degeneration the x-rays

are looking for is not necessarily present in PA. I have swollen,

achy, painful joints, detaching nails, psoriasis, and crushing

fatigue, but no joint damage so far (knock wood). I mention this for

other newbies who might worry that if they don't have the joint

damage, they must not have PA. That's the frustrating thing about

this illness--there is no one symptom that proves you have it. A lot

of us spend years getting a definitive diagnosis, for that reason.

[Guest guest]

In a message dated 12/28/2001 11:01:08 AM Eastern Standard Time,

BGWtexas@... writes:

> Do any of you see a

> dermatologist as well? If so, have they approached you about

> freezing the skin eruptions, much like they would a skin cancer?

>

Nope - mine did a few biopsies of moles, but as far as the P goes - no real

treatment except ointments, foams, creams, etc.

[Guest guest]

Thanks TADEL630. I think my dermatologist made a serious error in freezing

the eruptions. Looks like I'll be looking for a new dermatologist.

[Guest guest]

I’ve been seeing a dermatologist but I’ve never heard of freezing the

patches. I’ve been getting treated with an xtrac laser. On some areas it

works really well, practically looks healed. On tough skin though, like my

feet and palms of my hands, it controls it to a degree. Nonetheless, now

that winter is coming the cold weather is making it worse. It does help

control it though. I also use Dovonex for short term relief to allow my

hands to be fit to be seen.

I stopped taking methotrexate about a year ago and when I did the psoriasis

got much worse, but I’ve since got it back under moderate control with the

laser treatments, Dovonex and occasional use of steroidal creams as well.

Happy new year everyone.

I’ll get more info on the laser. It has worked better than anything else.

As far as the freezing, anything that damages my skin seems to bring about

more psoriasis.

[Guest guest]

Hi Josie! Geoff Crenshaw here.

Josie wrote:

>> I just check out the side effects of Methothrexate (snip) I sometimes

felt that my doctors were using me as their " Guinea Pig " <<

" Cash cow " is a more appropriate metaphor, " Golden Goose " another.

" Possible " is soft-peddling, the listed side effects are known absolutely

because they have and do occur. The only question is when and if they will

occur to you.

>> I have a lot of swelling, and pain, but I would rather manage it with

diet, Anti-biotic, and patience <<

Admirable, but not always practical nor advisable, in fact sometimes

downright injurious. Now you know why it is recommended to use something

like RheuMax, if it works for you, to handle the symptoms while the AP is

doing its job.

Geoff

soli Deo gloria

http://www.healingyou.org/ NonRx herbals, homeopathics & supplements

http://www.800-800-cruise.com/ Cruises, tours, resorts & luxury trains

[Guest guest]

Josie,

Your excellent message highlights the some of the dangers associated with

Methotrexate. But there are others.

If Methotrexate is prescribed in high dosages as a chemotherapy drug, it

can produce all of the acute problems that you list.

If Methotrexate is prescribed in lower dosages for RA, it suppresses the

immune system, in effect turning the body over to disease. It works counter

to the AP.

I was on Methotrexate for about 9 months until early summer of last year. I

could never discern any benefits of the Methotrexate, but I was constantly

sick with colds. I finally tapered off the Methotrexate (and also

Plaquenil) dosage to zero over the protests of my rheumatologist. My colds

disappeared and have not come back -- and my RA is in remission thanks to

the AP which I started in summer.

Sincerely, Harald

At 11:59 AM 03/09/2002 -0600, you wrote:

>

> I would like to ask you and others who are using " Methotrexate " . I have

> been on AP for approximate. 6 mts. Prior to finding this site, I relied

> on my doctors for answers. They had me on so many different meds, I

> didn't know what was happening.

>

>I just check out the POSSIBLE side effects of Methothrexate, and quite

>frankly, it's scarry. According to " Drug store. Com " , it has this warning

>for Methotrexate " this medicine should be used only to treat

>life-threatening cancer or severe cases of psoriasis or rheumatoid

>arthritis " , or this warning " If you are using methotrexate long-term,

>liver biopsies should be performed. Methotrexate use has resulted in

>serious, possibly fatal, lung problems, skin reactions, diarrhea and mouth

>sores (ulcerative stomatitis). I have NEVER used Methotrexate, but after

>reading those warnings, are enough to insure I WILL NEVER BE USING IT.

>

>I sometimes felt that my doctors were using me as their humane " Guinea Pig " .

>

> I have a lot of swelling, and pain, but I would rather manage it with

> diet, Anti-biotic, and patience, as opposed to setting myself up for more

> damage and problems in the future.

>

>J

[Guest guest]

Kim,

In my case, I gradually reduced the dosage of Methotrexate over the course

of two months. I don't know if such tapering off was necessary, but I

understand that when it comes to RA, it is not a good idea to stop

medications suddenly, since the body need time to readjust its balances.

Geoff is the expert in this area.

I could never point to any benefits or reduction of symptoms due to the

Methotrexate.

I started on the AP on June 19, 2001. On July 5th, the Herx reaction set

in, or 16 days later. This reaction lasted about three weeks. The main

problem with a Herx reaction is that it is very discouraging. I am sure

that some people give up with the AP when they experience it. In fact, it

is a good sign which indicates that the disease is responding to the AP.

Sincerely, Harald

At 08:42 PM 03/11/2002 -0600, you wrote:

>Hi Harald,

>

>Please tell me about your taper of MTX. I have been tapering the past

>month.... I also started AP three weeks ago. The first two weeks I started

>to feel better, but now I must be starting to Herx, or it could be from the

>reduced MTX. I just want off the MTX so I added the AP before stopping the

>MTX. (Actually I did a round of Zithromax last Christmas for a sinus

>infection that put me into a remission) So I was really eager to start AP.

>Would appreciate any info regarding the taper of the MTX,

>

>Thanks,

>Kim

[Guest guest]

You must not have read my posts on metho.

It has helped me aLOT! in fact when i was taken off it I went backwards

and it took a long time to get back to where I had been.

It does have some side effects which need watching.. like liver problems..

That doesn't always happen to everyone...also pneumonia. But it can be of

such help.

The side effect I have the most oten is diarrhea. but I can avoid that

alot by taking it with food.. other than that I have no problems.

Becky said:

> , you are just about the only person who

> has mentioned that Methotrexate has done

> you any good. All I have been hearing is how

> horrible it is, and that the side effects are not

> worth it. My doctor wants me to try it, but I am

> terrified. This is all new to me...

> Thanks for some encouragement. =)

>

Liz

~~~

" No one can make you feel inferior without your consent. " Eleanor Roosevelt

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

EMAIL: juliette@... **ICQ 49746198** MSN & AIM LizKP1952**

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

ADDult HOME PAGE: http://members.tripod.com/~LizK/addult.htm

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

[Guest guest]

Hi to all at RISG

I am sorry for not contributing lately but pleased to see that the list is

now working well again. I wrote to RISG three years ago or so and was

worried at the time about methotrexate. I was also worried that I would not

be able to continue in work etc. Once I reached 25mg per week of MTX, it

appeared to kick-in and, since, the awful burning pain in my thoracic,

shoulder and neck area has reduced to a more manageable level. My SI joints

are not as bad either and I am still working. I don't like taking MTX, it

makes me feel awful at the weekend when I take it, although I did follow

advice from this list to take it orally over the whole day rather than all

at the same time. But, Ank Spond is oppressive and makes me feel awful.

Therefore the benefit I get clearly, and unambiguously, outweighs the cost

of taking MTX. Providing you take the necessary care such as limiting

alcohol intake, and are adequately monitored for liver function etc every

six weeks or so, there is no reason why taking MTX should be a problem. For

all of you that spent years trying to convince doctors that you had a

problem and were not listened to (myself included), or were told that you

had wear and tear problems, the regular monitoring of CRP is an added bonus

and evidence of severe inflammation. So, although I don't think MTX is the

long term answer, it has its uses at the moment until, we hope, something

better happens in the future. There are few alternatives for us and I

cannot get Remicade here in the UK, it can only be prescribed for RA

patients.

Ray, you said that

-->> Vioxx and Celebrex

work against the Tumor Necrosis Factor (TNF) which is a factor in

our diseases --<<

Is this right, I thought it was Enbrel and Remicade that work against TNF.

I have been on Vioxx since I had stomach problems and I don't think it is as

good as Indocin for AS.

I hope this reads okay, my eyes have been quite a mess with uveitis for some

time now.

regards

in London

---

Outgoing mail is certified Virus Free.

Checked by AVG anti-virus system (http://www.grisoft.com).

Version: 6.0.351 / Virus Database: 197 - Release Date: 19/04/2002

[Guest guest]

Ray in Virginia wrote:

>

> Remember, doctors wouldn't prescribe a medication that did not

> help.

Now, I can't agree with that completely. Even after being warned

that I cannot tolerate opiates, a doctor gave me IV fentenyl

postop without telling me or warning me and I stopped breathing.

He didn't believe me and thought if he didn't tell me then I

wouldn't have my 'hysterical' reaction. Well, he got surprised

but I'm the one who suffered quite severe oxygen deprivation before

they could get me started again.

But, MOST doctors, MOST of the time won't prescribe something that

won't help.

> From: " Becky Tico " <n2wlvs@...>

> My doctor wants me to try it (methotrexate), but I am

> terrified. This is all new to me...

> Thanks for some encouragement. =)

Becky,

I was terrified of trying it also. I was in so much pain and

nothing had helped. I was faced with do it or continue deteriorating

and I was already bedridden. So I did. It was not so bad

as I had expected. All of my prior knowledge about MX was

from my nursing days ... yearsssssss ago .. when MX was new

and being given for cancer. I had visions of hair falling out,

vomiting non stop, yellow skin and eyes. BUT, even the maximum

dose given for arthritis is very much smaller than the smallest

dose used in cancer. And you only take it once a week.

So, when I first started on it, I was on 7 1/2 mg, and I did

experience some mild nausea, more like not wanting to eat than

any 'sick' feeling. And I felt tired and slept a lot the

day I took it. I am now on 25 mg a week. No more problems

with any sort of stomach problems. I take it at night and

sometimes feel drained and tired the next day but mostly

it's like any other day (I feel drained and tired all the time).

Initially, I had some mild hair loss, but my hair is now

healthier than it has been in some time. After my dose got

up to 15 mg, I began having mouth sores and skin bruising. My

doctor had initially recommended that I take folic acid 1/2 mg

daily (offsets some of the side effects). So, I raised myself

to taking 1 mg daily, which helped but didn't keep them away

completely. I now take 2 mg the day after I take my MX and on

one other day of the week (2 or 3 days later) and I take 1

mg on the other days. I haven't had any sores or other adverse

symptoms since I've done this.

You need to have regular blood tests, your doctor should give you

a schedule. I had tests monthly for a year, then 6 weekly for

a while and now every 3 months. Nothing in my blood tests have

changed at all.

You are not supposed to drink alcohol or eat/drink anything that

stresses the liver. But, I never tolerated alcohol anyway,

except I like to have a glass of wine once in a while on a

dinner out. My doc said a small glass once in a while probably

wouldn't hurt me, but I've found that even 1/4 glass of wine

really makes me sick for days after, so I avoid it completely.

Anyway, give it a try. Just watch yourself, take care, get

plenty of rest on the day you take it, take folic acid and

try to relax. I would have never believed that MX could help

as much as it has helped me. My current quality of life is

not great, I'm so weak and tired with low tolerance to stress

or strain. And, the pain never really stops, but life is

tolerable. I think about the 2 or 3 years before I started MX

and it boggles me totally to think how I managed then. I guess

I really didn't. I spent 4 months in bed just gasping because

I couldn't take a deep breath because of rib pain, I never slept

and I was never fully awake, I dribbled urine constantly and never

actually felt it, I was just wet and smelly constantly. It would

take me 30 minutes or more just to get out of bed and make it the

5 steps to the toilet. I don't know how my husband put up with

me. I was too miserable to even know how miserable I was. I've

told my husband that if I ever get that way again, he must just

shoot me, life is not worth living that way.

Oh well. ... I started hydrotherapy last week. I can't believe

that just floating can be so hard!!! But, I feel good about it

and feel that I can get stronger with this.

--

kjg@...

Canberra, ACT Australia

[Guest guest]

,

I meant that a caring, knowledgeable doctor wouldn't deliberately

prescribe a harmful medication. Now the only trouble we have is

finding such a person.

Ray

[Guest guest]

Hello, I took my second pill of Methotrexate early this morning... My head is

killing me. Is this normal, and will it go away after my body gets used to

it? Also I am shaking alot. I am only two weeks into this and I feel mobil

yet terrible. I wonder what would happen if I stopped taking all the pills.

Perhaps I am still in denial.

[Guest guest]

I have heard a lot say they've had bad effects from the MTX. I always take

mine on Saturday night so I can sleep through some of the fatigue part and I

won't have too much to do on Sunday that I can pretty much just relax. MTX

gives flu-like symptoms sometimes, but if my head was " throbbing " I'd want to

call the doc.

Hope by this time you are much better. --Sue

[Guest guest]

I do not know the side affects of MTX but please never stop taking any

medication without calling your doctor. I hope it gets better for you, Melt

Re: Methotrexate

> Hello, I took my second pill of Methotrexate early this morning... My head

is

> killing me. Is this normal, and will it go away after my body gets used

to

> it? Also I am shaking alot. I am only two weeks into this and I feel

mobil

> yet terrible. I wonder what would happen if I stopped taking all the

pills.

> Perhaps I am still in denial.

>

>

> Visit the Still's Disease Message Board

> http://disc.server.com/Indices/148599.html

>

>

[Guest guest]

I won't say that I felt the greatest after taking my MTX, but I definately did

not do what your describing... I would call your doctor and talk to him about

it...

Pattymelt

wrote:I do not know the side affects of MTX but please never stop taking any

medication without calling your doctor. I hope it gets better for you, Melt

Re: Methotrexate

> Hello, I took my second pill of Methotrexate early this morning... My head

is

> killing me. Is this normal, and will it go away after my body gets used

to

> it? Also I am shaking alot. I am only two weeks into this and I feel

mobil

> yet terrible. I wonder what would happen if I stopped taking all the

pills.

> Perhaps I am still in denial.

>

>

> Visit the Still's Disease Message Board

> http://disc.server.com/Indices/148599.html

>

>

[Guest guest]

Hi Amy,

Headache could be a side effect, but it sounds as if you

are experiencing more than a " normal " side-effect headache.

Also...I don't like the " shaking a lot. "

Please call your doctor right away, and ask for his/her

advice. I am not trying to scare you, but it's good to get

an expert opinion, and your doctor should be aware of

how you are feeling.

~~tricia~

-- Re: Methotrexate

Hello, I took my second pill of Methotrexate early this morning... My head

is

killing me. Is this normal, and will it go away after my body gets used to

it? Also I am shaking alot. I am only two weeks into this and I feel mobil

yet terrible. I wonder what would happen if I stopped taking all the pills.

Perhaps I am still in denial.

[Guest guest]

I have stopped having any side effects from the mtx since discussing it with

my doc and splitting the weekly dose. I take a total of 8 pills - 2 each on

Sat. morning, Sat. eveing, Sun. morning and Sun. evening.

I discussed it with my doc because of the fatigue I was experiencing and

because I was running a fever for two days after taking the full dose.

Splitting the dose has been the answer for me. Check with your doc and see if

he/she would suggest that.

Good luck. It is a tried and true medication that has helped lots of us deal

with the dragon.

Marcia

[Guest guest]

Hi all!

I started taking MTX about...I don't know...six months ago or so. I am now on

25mg injectable once a week. I take it on Tuesday nights. I also take 2mg a

day of folic acid. For a long time I had fevers after taking the MTX and kind

of felt as if I was burning from the inside out. I also had a great deal of

fatigue. About 2 months ago I notice that I no longer have most of the side

effects except...Starting Wednesday night I start to feel tired and Thursday I'm

exhausted. Every once-in-a-while I am not tired at all. Even when I didn't feel

well in the beginning, I never had head aches or shaking. I felt as though I

had a serious case of the flu. Now I can report that the side effects are

manageable. I still have flares from time to time but I'm working on keeping a

close journal so that my doctor can review it in 3 months. If needed, he will

add Remicade at that time.

I have thought many many times that I just want to stop taking all these meds

(mostly when I feel ok)....I hate taking so many meds and pills each day. Once

I did just stop...the prednisone and all...and I was on 60mg of Prednisone. I

landed in the hospital with an angry doctor. Please don't ever do this to

yourself. Learn from my mistake please. I know it's hard and you want to deny

that you even have this illness. Sometimes I feel like " it's someone else's

turn " to have this illness. I just get frustrated and completely fed up. Hang

in there though....I then vent to the group and they talk some sense into me. I

have felt every emotion from I want to die to I feel ok. It's so hard. I know

that most people go through this...at least that's what I read at this site.

It's just like someone else said....it's a loss....and a grieving

process....when you loose your health.

Take care of yourself...Lots of Hugs and Love, Kim

[Guest guest]

Hi,

I must say, I completely agree with Christy on this. Josh started taking MTX while he was still in the hospital for the onset of his systemic JRA symptoms. He took it for 5 years, in pill form first, before we finally switched over to injections. I truly believe this one med is what has kept his joint function so well preserved. I only wish we had started out with it as an injectable, as once we switched over he had an even better overall response. But, all along, I believe it's been the MTX which has prevented a lot of what I used to feel would be fairly rapid and inevitable joint damage and deformity.

Aloha, Georgina

My husband and I are firmly convinced that her aggressive treatment with mtx is what has kept her joints in good shape so far. Our goal has been to keep her joints as healthy as possible until the cure comes along.Christy (Abbie, 13 systemic)

[Guest guest]

Hi Ellie

My daughter, now 10 1/2, has been on methotrexate for close to 8 years, so this is naturally a concern of mine as well. I've spoken to 's rheumatologists about this and have also asked some of the rheumatologists at the AJAO conferences what they think. The general consensus seems to be that at the doses our kids take there should not be any problems related to the reproductive system. And I have met some women who were treated with methotrexate and went on to have babies, which only increases my faith in what the docs are telling me. The big thing with having babies is that women should absolutely not conceive while on mtx but are fine after a couple of cycles off the mtx.

Liz

Methotrexate

Hi all, I was just wondering if any of you could give me some info on the long term effects of mtx. Does anybody know if it affects the reproductive system in females? Or any other adverse long term effects? Thanks a bunch. xoxo, Ellie and Riley 5 poly

[Guest guest]

Hi Ellie,

what Liz told you is also my understanding: mtx does effect on

pregnancy and is strictly forbidden during it, but after quitting it

you can be pregnant safely. I don't remember the time recommended in

between mtx and pregnancy but it's (at least with our docs)

relatively long, about one year. The problems arise if the arthritis

is still active and needs meds and the patient wants to have

children.

Another thing about long term use of mtx (or any other antirheumatoid

drug) is liver malfunctions, and this is the main reason to do blood

work so often, to monitor liver function carefully.

Hope this helps.

Soili