methotrexate

[Guest guest]

Dear Lea,

> all! Which brings me to my question: How can anything be

> accomplished when I'm on drugs that suppress the immune

> system and at the same time I'm watching what I eat and

> taking $200 supplement/month? It doesn't make sense but

> then again I'm so new to all of this. Maybe someone can

> explain.

Even more important to boost your immune system as much as you can. Sure,

the methotrexate is going to suppress it, but you need to fight that by

doing as much as you can to keep it strong. When Dr. Franco takes you off

the MTX then you're immune system will start to take over again.

Chris.

>

> Side Note: I guess I'm lucky to find a doctor here that

> will cooperate with Dr. F. I've been turned down by 3

> others. I think the rhumey here is very curious about the

> AP. He's asked me some interesting questions and wants to

> read any info I can give him. I'll give him the FAQ and

> protocol of Dr. M from the website. Is this good? Should I

> do more? Should I ask Dr. F to send him his protocol? Is

> it different from Dr. M? Wow all these questions!

>

>

> ------------------------------------------------------------------------

> How has ONElist changed your life?

> Share your story with us at

>

[Guest guest]

Hi,

I've been on MTX for 6 weeks and my Rhuemy is taking me off

of it as soon as I can begin receiving Embrel. I have had

some nausea AND thinning hair, which wasn't really a bad

thing( My hair has always been very thick ). I tried the

injectable MTX and had a reaction to the dilutent in it

So Good Luck. It seems to work for a lot of people. Liz

[ ] Methotrexate

> Hello,

> My name is Ginny and I am new to this group. I

> have been diagnosed with Psoriasis, Osteoarthritis

> and possibly Psoriatic arthritis, along with a whole

> slew of other health problems.

> My Rheumatologist wants me to go on

> Methotrexate. My brother is already on it and seems

> to be doing okay. However his rhumey is slowly

> taking him off if. He has gone on a waiting list for

> Embrel.

> I need to know from any one, your experience with

> methotrexate. ly, I am scared of it. It can have

> some really bad side effects, not the least of which is

> chemically induced leukemia.

> Any one out there on Methotrexate? Please tell me

> how you are doing.

> Ginny

>

>

>

[Guest guest]

Ginny,

I've been on mtx for three years now and like you I was very upset at the

side effects. So after a year and a half I took myself off the med. Big

mistake. I was ok for awhile but shortly became worse. My pain came back so

bad I could hardly move.

I went back on the med and after about six months I am much better.

My thoughts are what good is life without quality of life

[Guest guest]

This is a good point, Judy. You can abandon your meds and seem to feel

pretty good at times and even for long stretches, but the disease can still

be working steadily and silently against you. Control of the disease is

important, too, not just of the symptoms. Side-effects can be daunting, but

you have to ask yourself what could happen if you don't take the drugs.

Hope you are doing well. We haven't heard from you in a long time!

Re: [ ] Methotrexate

> Ginny,

> I've been on mtx for three years now and like you I was very upset at the

> side effects. So after a year and a half I took myself off the med. Big

> mistake. I was ok for awhile but shortly became worse. My pain came back

so

> bad I could hardly move.

> I went back on the med and after about six months I am much better.

> My thoughts are what good is life without quality of life

[Guest guest]

Hello Kathy in Fla. I've been taking MTX for close to 2 yrs., except for the

time I was taking chemo after breast cancer surgery. I have only taken it in

tablet form; each tablet is 2.5mg and I was taking 8 tablets (20 mg) , all at

the same time one day a week. I found that it really did me some good.; but I

was still taking 5 to 10 mg Prednisone a day. So the dr. started me on

Remicade, 5 mg of pred. daily, and 3 (7.5 mg) MTX weekly. I didn't suffer

any noticeable side effects from MTX.

Hope you get past these problems.

Be Blessed,

Becky

[Guest guest]

Kathy in FL, I have been taking MTX orally for 5 yrs now and have no real

side effects from it except I think that is where my thinning on top hair is

coming from.....but I will take that for a side effect compared to doing

predisone.....I felt results in about 3 months .....I also took plaquenil for

about 4 yrs...and then he took me off to see how I would be w/o it and I have

been fine. I usually hurt when humidity goes above 30% and if I have to sit

very long......good luck ....Judy in AZ

[Guest guest]

Hi, Kathy!

Yes, several of our members are on methotrexate (MTX). Many people here have

had very good results with the drug. Becky wrote about her experience with

it, and I'm sure others will tell you what they think.

Although the side-effects can sound scary, careful monitoring should keep

you safe. Many very cautious doctors order a baseline x-ray before starting

their patients on MTX. They also check blood work regularly for any signs of

trouble.

MTX is one of our most-effective and well-tolerated DMARDs. It also has a

very long history. Doctors have been using it for decades to treat

rheumatoid arthritis. This is a tremendous advantage because the physicians

know what adverse reactions to look for.

Methotrexate was originally designed as a chemotherapy drug to be injected.

The oral form of the drug is used by many patients, but side-effects can be

more of a problem when MTX is taken orally.

Most doctors recommend that folic acid be taken with MTX to lessen the

possibility and severity of side-effects. Did your physician recommend that

you take folic acid?

Here are some articles about methotrexate:

http://www.aafp.org/afp/20001001/1607.html

http://www.hopkins-arthritis.org/rheumatoid/rheum_treat.html#meth

http://www.arthritislink.com/mtxdr.htm

http://www.rheumatology.org/research/guidelines/guidelines/ra-drug/ra-drug.h

tml

http://www.rxlist.com/cgi/generic/mtx.htm

I'm sorry you felt so sick afterward. Please discuss this with your doctor.

PS. They are doing the CT scan so they can be absolutely sure your lumps are

due to the prednisone. The CT scan will show more than the sonogram.

[ ] methotrexate

> Hi Everyone,

> I recieved my first inj. of meto. yesterday. Don't know muc about

> this drug , is there any of you out there on it? What do you think

> about it? Have been nauseated today and vision seems to be blurry

> also have had a headache. I didn't think the side effects would

> happen that soon/? If anyone is on this would like to know how it

> effects you . Am suppose to go back once a week for an injection. No

> way I'm going to if its going to make me feel like this. Thanx

> Kathy in Fla.

[Guest guest]

I've been on MTX since January......the oral version, with no side effects.

I've asked my Doctor about the folic acid thing and he said they do recommend

it for patients having side effects, but not for those who have none because

it can lessen the effect of the MTX itself. I'm not sure about the injection

version.

On a side note, my Doctor wants me to do a study. Do any of you do them? I

did one a few years back but had to travel 40 min to the hospital for

infusions that lasted 4 hours. I had to do it for 4-6 weeks. What a pain!

Plus I had to get off my meds to participate. I'm told the new rounds of

study allow you to remain on your meds. The one he wants me to do involves

getting some 9 shots....I'm not sure of the frequency. Most I do myself and

some are given to me including at least 2 visits to that far away hospital.

I should be getting more info soon and then I will be able to decide. Not

sure if I want to. The last study gave me the worst hives! I can't say I

was ever any better after it all either. Paid $350, but for all I went

through........ Just wondered if any one here was in any..........

~*~*~*Rita*~*~*~

~*~*~*God Bless America*~*~*~

~*~*~*~*~*~*~*~

[Guest guest]

Kathy,

Hi, when I first started on MTX it was 7 years ago on a much higher dosage

(they didn't have Enbrel yet). Those first shots were tough on me also. I

had severe nausea, explosive diarrhea and TERRIBLE mouth sores. My rheumy at

the time, to just grin and bear it. I had to take imodium EVERY day.

Finally after the 7 month, from which I saw no improvement, I was taken off

the medication AND changed physicians.

I have currently been started back on MTX along with Enbrel since January,

01. Granted it is a smaller dose, but the only side effect I have had with

any regularity is the mouth sores for which the doc gave me the folic acid.

It is like night and day. I was very reluctant to go back on the MTX, but

felt I had to give it a try. With the Enbrel much improvement in joint pain.

Not gone, by any means, but I do work part time which I am usually able to

accomplish or if I have to go home it is not from the RA.

Good luck and I hope they can find a similar combination of meds for you to

achieve some sort of normal life. No two people are alike, we all respond to

medication differently, but hopefully, there is a combination out there for

all of us!

Hang in there and keep in contact with you physician so he can tweak your

medication for optimum relief.

Have a wonderful weekend.

Gentle, tender, angel hugs,

Deb

[Guest guest]

Hi ,

Yes he put me on Folic acid. I Recieved the injection Tues. and am just starting

to feel better today, am not sure I want to continue with this every week.

Blurred vision, nausea, felt like a mac truck has hit me . thought this was

suppose to make you feel better. Called the rhuem. will see him again tues. and

speak with him about it. i am scared of this drug. Especially since I had all

these side effects so soon. Thanx for your reply. Kathy in Fla.

<Matsumura_Clan@...> wrote: Hi, Kathy!

Yes, several of our members are on methotrexate (MTX). Many people here have

had very good results with the drug. Becky wrote about her experience with

it, and I'm sure others will tell you what they think.

Although the side-effects can sound scary, careful monitoring should keep

you safe. Many very cautious doctors order a baseline x-ray before starting

their patients on MTX. They also check blood work regularly for any signs of

trouble.

MTX is one of our most-effective and well-tolerated DMARDs. It also has a

very long history. Doctors have been using it for decades to treat

rheumatoid arthritis. This is a tremendous advantage because the physicians

know what adverse reactions to look for.

Methotrexate was originally designed as a chemotherapy drug to be injected.

The oral form of the drug is used by many patients, but side-effects can be

more of a problem when MTX is taken orally.

Most doctors recommend that folic acid be taken with MTX to lessen the

possibility and severity of side-effects. Did your physician recommend that

you take folic acid?

Here are some articles about methotrexate:

http://www.aafp.org/afp/20001001/1607.html

http://www.hopkins-arthritis.org/rheumatoid/rheum_treat.html#meth

http://www.arthritislink.com/mtxdr.htm

http://www.rheumatology.org/research/guidelines/guidelines/ra-drug/ra-drug.h

tml

http://www.rxlist.com/cgi/generic/mtx.htm

I'm sorry you felt so sick afterward. Please discuss this with your doctor.

PS. They are doing the CT scan so they can be absolutely sure your lumps are

due to the prednisone. The CT scan will show more than the sonogram.

[ ] methotrexate

> Hi Everyone,

> I recieved my first inj. of meto. yesterday. Don't know muc about

> this drug , is there any of you out there on it? What do you think

> about it? Have been nauseated today and vision seems to be blurry

> also have had a headache. I didn't think the side effects would

> happen that soon/? If anyone is on this would like to know how it

> effects you . Am suppose to go back once a week for an injection. No

> way I'm going to if its going to make me feel like this. Thanx

> Kathy in Fla.

Gentle hugs and sweet blessings. Kathy in Fl.

---------------------------------

[Guest guest]

Kathy,

Do you know how much MTX you were given? Maybe your doctor could reduce the

dosage. But do call him and see what he recommends. Tell him exactly how bad you

were feeling and for how long. Sorry, Kathy!

Re: [ ] methotrexate

Hi ,

Yes he put me on Folic acid. I Recieved the injection Tues. and am just

starting to feel better today, am not sure I want to continue with this every

week. Blurred vision, nausea, felt like a mac truck has hit me . thought this

was suppose to make you feel better. Called the rhuem. will see him again tues.

and speak with him about it. i am scared of this drug. Especially since I had

all these side effects so soon. Thanx for your reply. Kathy in Fla.

phone with by Phone.

[Guest guest]

Hi Kathy,

Everyone reacts differently with MTX. Six years ago I started on MTX

injections with a different doctors and I had every adverse reaction in the

PDR and she gave me nothing to counteract these things. I have now been on

MTX injections in connection with Enbrel injections and have had very mild

reactions for which I take folic acid and they become almost nonexistent. In

fact the first time I was on the MTX, the adverse reactions were so severe

and I got very relief with my RA that I finally told the doctor NO

MORE........So, not only does everyone react differently with MTX, sometimes

your own body reacts differently. Who knows, they can't give me an

explanation for that one!

Have a good evening. Did you get the rain over the weekend? We are finally

dried out and the weather actually got nice, no humidity.....Take care of YOU.

Gentle, tender, angel hugs,

Deb

[Guest guest]

Susie, I have had the bleeding gums from MTX........blisters...thrush....I

finally got folic acid ....Dr started me on 4 mg a day .now take 2 .....have

had recent gum problems and mouth blisters from 2000mg of Kflex a day and

upped my folic acid again and taking probiotics which are also

helping.....Judy in AZ

[Guest guest]

Susie,

Yes, MTX can do this, and you should notify your doctor

immediately about this.

http://www.rheumatology.org.nz/nz09004.htm

http://www.arthritisvic.org.au/Done/saards.htm

I know how tired you are of being sick. It makes it worse

when the meds

we take cause more problems. All I can do is send you a big

cyber hug.

Please call your doctor right away.

a

[ ] METHOTREXATE

Will Methotrexate cause your gums to swell (all of a

sudden with no

cause) and BLEED? Mine have been doing this all afternoon

and evening.

Anyone know.

I keep holding ice water in my mouth, but when I stop, the

bleeding

starts again.

Not " profuse " bleeding, just seeping from gums around

teeth.

If I " spit " in the sink, it is blood.

Ucky! I am SWALLOWING this???!!!!!!!

I HATE being sick...taking meds...and getting sicker for

it!

Susie

[Guest guest]

a,

Wow, bleeding gums was something I was not aware of with methotrexate and I

was on it for a very long time!!

Thanks for the good info.

Joanne

[Guest guest]

Joanne,

MTX can cause platelet counts to be low, which can cause

bleeding. It isn't a common

problem in the lower doses of MTX that we take for RA.

a

Re: [ ] METHOTREXATE

a,

Wow, bleeding gums was something I was not aware of with

methotrexate and I

was on it for a very long time!!

Thanks for the good info.

Joanne

[Guest guest]

Susie,I get a sore inflamed mouth from the methtrexate if I don't take

the folic acid. I don't think that kind of bleeding would be a normal

side effect.Who knows though? I would call my docto if I were you.That

seems like too much bleeding.You may have low platelets or some thing.

Joyce

[Guest guest]

Thanks for responding Judy & Joyce.

I do take the folic acid. I have been on it since about 5 months before

I started the Methotrexate.

How do they come to the AMOUNT of METHOTREXATE they give you?

Do they go by body weight? I weigh 100, maybe it is a little too much I

am taking?

Susie

namu32@... wrote:

> Susie,I get a sore inflamed mouth from the methtrexate if I don't

> take

> the folic acid. I don't think that kind of bleeding would be a normal

> side effect.Who knows though? I would call my docto if I were you.That

>

> seems like too much bleeding.You may have low platelets or some

> thing.

> Joyce

>

>

>

>

>

>

>

>

[Guest guest]

I really dont know.....my RD has had me on as little as 3(2.5mg)a week of MTX

and as much as 8(2.5mg)....I now take 6 a week and 2 folic acid every day but

MTX day. I think he based some of it on flares...Judy in AZ

[Guest guest]

<PRE>i finally jumped on the methotrexate bandwagon too. i am doing injections,

..03 cc starting today. she tried to get me to take the pills, but i know my

body and didn't think it would sit very well. i feel pretty good so far.

please work, please work!!!!! kathy in il

[Guest guest]

I hope it works for you Kathy! It¹s got a great success rate.

Keeping you in my prayers.

a

> <PRE>i finally jumped on the methotrexate bandwagon too. i am doing

> injections,

> .03 cc starting today. she tried to get me to take the pills, but i know my

> body and didn't think it would sit very well. i feel pretty good so far.

> please work, please work!!!!! kathy in il

>

>

[Guest guest]

<PRE>thanks paula, i sure hope it works too. so far so good. kathy in il

[Guest guest]

Lissa,

I can't speak of Planquenil but have used MTX in both pill and

injectible form. I take 20mgs subcutaneous weekly now. I could not

handle the pills because they made me very sick but the injectible

form works fine.

Luckily, there are many people here that have taken both so you

should get some good advice. Just remember that all people react to

meds differently.

All my best to you.

Alan

> So, there has benn a lot of discussion about this medicine. I am

> sure my rheumy will perscribe either MTX of plaquenil at my next

> appt. I have had a weak stomach my whole life. If they perscribe

> MTX, should I just ask for injectible right off?

>

> For those of you who have been on both, which has the fewer side

> effects?

>

> Becky, the YMCA here offers an arthritis water aerobics class. You

> might look into it there as well.

>

> Lissa

[Guest guest]

I just got a video from the RA association in the mail today about RA and

exercise! Haven't had time to watch it yet. This afternoon after I got home

from the doctor one of my daycare babies, 15 months, got the hives and I had to

rush her to the ER. She has several food intolerances and has many times been

close to anapaletpic (sp?) shock. This time they think it was from her chicken

pox vaccine that she got yesterday. Today was the first day I wasn't tired.

Guess my adrenalin really got me hopping.

Becky

[ ] Methotrexate

So, there has benn a lot of discussion about this medicine. I am

sure my rheumy will perscribe either MTX of plaquenil at my next

appt. I have had a weak stomach my whole life. If they perscribe

MTX, should I just ask for injectible right off?

For those of you who have been on both, which has the fewer side

effects?

Becky, the YMCA here offers an arthritis water aerobics class. You

might look into it there as well.

Lissa

[Guest guest]

Becky,

That must have been so scary. I hope she is ok and doesn't suffer any

lingering side effects from the vaccine.

a

> I just got a video from the RA association in the mail today about RA and

> exercise! Haven't had time to watch it yet. This afternoon after I got home

> from the doctor one of my daycare babies, 15 months, got the hives and I had

> to rush her to the ER. She has several food intolerances and has many times

> been close to anapaletpic (sp?) shock. This time they think it was from her

> chicken pox vaccine that she got yesterday. Today was the first day I wasn't

> tired. Guess my adrenalin really got me hopping.

>

> Becky