MTX side effects

[Guest guest]

Feel the same as you and on virtually same meds. Betty in Va

[Guest guest]

Roy writes: < I take my meds at approximately 8:00 PM and the next day

around 10:00 AM I was hit with the worst fatigue I have had since I developed

PA. This was accompanied by reasonably mild muscle pain that was different

from the normal PA, milder but more extensive and gastric symptoms. I ended

up sleeping approximately 20 of the 24 hours getting up only to run to the

bathroom. >>

When I started taking MTX I had side effects very similar to what you

describe. The fatigue and gastric distress lasted for perhaps a day. The

good news is my body seems to have adjusted to the medication, so I don't

have *any of these issues any longer. Hope you have similar results over

time,

Patty

[Guest guest]

Hi Crystal

When I first went on MTX I had an on/off problem with mouth sores. My

doctor sent me to the hospital for more blood tests and then told me

that I was doing well and they'd go away. They did and I haven't had a

problem since. All the literature says we should treat mouth sores as a

serious complication until a doctor can tell us otherwise (blood tests,

etc.) I wouldn't sit on it too long without checking with the doctor.

[ ] MTX side effects

Hi I was wondering if anyone had any good advice to treat mouth ulcers?

My

daughter has a bunch of them right now from the medicine. Any ideas

would be

helpful, thanks in advance. Crystal

[Guest guest]

Crystal,

When I was on MTX, my rheumatologist prescribed 1 mg Folic Acid per

day to prevent mouth ulcers (among other things). I weight over 200

pounds, so that might be excessive for your daughter however.

-- Ron

> Hi I was wondering if anyone had any good advice to treat

> mouth ulcers? My daughter has a bunch of them right now

> from the medicine. Any ideas would be

> helpful, thanks in advance. Crystal

>

[Guest guest]

Crystal,

I am so sorry to hear your daughter is having troubles on MTX, some things

kids just shouldn't have to deal with. When I first started MTX 18 months

ago I got bad mouth ulcers, my tongue would bleed... ick really gross. I too

take 1mg of folic acid a day, except the day I do my injection. Funny but

the very thing that helps prevent the side effects apparently can also

interfere with absorbing the drug in the first place!

I agree that this is something her doctor should evaluate, especially if they

don't resolve in a couple of days... I still get 2 -3 little " hot spots " a

week but they fade in a day or so. If she isn't getting relief, and the

rheumatologist hasn't offered anything new, take her to a good dentist. They

can get a topical prescription (rinse) for a combination of meds to give her

pure pain relief so her eating and drinking doesn't suffer too much. Poor

thing, is she talking less because of them? Make sure you give her doc a

graphic description, get his/her attention any way you have to! Hope this

situation is much better soon! Please tell her we understand and to hang in

there! Deborah

[Guest guest]

Thanks Deborah, so far they havent stopped her from eating or talking lol.

She is such a little trooper to deal with all this. She hasnt had much hair

loss until today and she came out with a whole hand full. I hope it doesn't keep

falling out, she will be heartbroken. Crystal

[Guest guest]

Aw, poor thing... I hate it when my hair falls out and I'm old and it's gray,

must be lots worse to be a kid!!!

I hope she feels better soon, all this playing around to find the right

dosages can be stressful enough ( hair-loss wise) but when the meds

contribute too - yuk. I start to loss a bit of hair with each increase, but

it does settle down and " most " comes back... Hope hers does too

[Guest guest]

Hi Crystal:

I was just taken off the MTX due to mouth sores. My

rheumy put me on Arava. I am still having mouth

sores. I am still on Folic Acid. She also put me on

Leucovorin, which is to be taken 12 hours after the

MTX. They left me on that even with taking the Arava.

May I also add that the Arava has a $47 co-pay! That

about blew me in alone! So, I would ask your rheumy

for Leucovorin. I hear there is good results with it.

Take care.

--- ron_s_dotson <Ron@...> wrote:

> Crystal,

>

> When I was on MTX, my rheumatologist prescribed 1 mg

> Folic Acid per

> day to prevent mouth ulcers (among other things). I

> weight over 200

> pounds, so that might be excessive for your daughter

> however.

>

> -- Ron

>

>

>

> > Hi I was wondering if anyone had any good advice

> to treat

> > mouth ulcers? My daughter has a bunch of them

> right now

> > from the medicine. Any ideas would be

> > helpful, thanks in advance. Crystal

> >

>

>

>

>

__________________________________________________

[Guest guest]

In a message dated 05/09/2002 11:59:58 PM Eastern Daylight Time,

freakych@... writes:

> She hasnt had much hair

> loss until today and she came out with a whole hand full

Crystal - My hair got very thin, but didn't all fall out. I had hair to my

waist and cut off 15 inches. It's so much nicer now. I noticed that when it

was long, if I ran my fingers through it, some would come out. Much less

comes out now that it's shoulder length. Make sure she has an easily

manageable style and that she treats it very gently. I don't know of anyone

who has lost all of their hair, but most of us have had it get thinner.

Also, make sure she's eating enough good quality protein.

[Guest guest]

Is the hair loss from MTX or Folic Acid? I had some with MTX, or at least

that was what I thought it was from.

[Moderator's note: Hair loss is caused by the MTX. Folic acid helps *prevent*

hair loss, mouth sores, etc. Ron]

[Guest guest]

I started MTX three weeks ago and got Folic acid at the same time. Havewn't

noticed any hair loss and no mouth sores. I do have a bit of naseau and

loss of appetite. The big problem for me is my eyes are super sensative to

the sun. Heck I even had to dim my monitor as that hurt my eyes. See the

rheumy on Wed. Have to see what he has to say. Cannot drive any long

distances as the sun hurts my eyes even with sunglasses on.

Lorna

[Guest guest]

Lorna,

Good suggestion for the light sensitivity... I had the same problem and took my

sunglasses to the optician... they put the darkest available lenses in them and

now it is much easier to tolerate being outside and driving during the daytime.

I also had a major loss of appetite and nausea with the MTX tablets... for

several months I have been taking MTX by intramuscular injection and I am doing

great! Suggest this to your doctor. Good luck.

#2

Lorna Hanrahan <piglet@...> wrote: I started MTX three weeks ago

and got Folic acid at the same time. Havewn't

noticed any hair loss and no mouth sores. I do have a bit of naseau and

loss of appetite. The big problem for me is my eyes are super sensative to

the sun. Heck I even had to dim my monitor as that hurt my eyes. See the

rheumy on Wed. Have to see what he has to say. Cannot drive any long

distances as the sun hurts my eyes even with sunglasses on.

Lorna

[Guest guest]

#2 and Lorna,

I wonder if increased light sensitivity while on MTX is due to

retinal changes, or to increased dilation of the pupil of the eye? If

it's the latter, there may be some unexpected benefits (or

liabilities) - depending upon your point of view. Volume 3, Chapter 4

of " Studies On New Technologies and Practices in Communication " at

http://www.vepsy.com/communication/volume3/chap4Ciceri.pdf states:

" The dilation of the pupils is a clear signal of attraction, and a

precise psychophysiological signal of interest charged with seductive

power. "

In fact, I think I've read somewhere that models use eye-drops to

dilate their pupils prior to photo-shoots in order to give them an

extra edge and make themselves look more " sexy. " I know this is

totally irrelevant to the reasons for taking MTX and is probably the

last thing on anyone's mind who is on MTX, but I thought it might be

of interest to those ladies wondering why they get " hit-on " or

approached by men so often while on MTX ;-). LOL! Yes I was just

kidding, but I'm curious about the eye dilation aspect nonetheless,

and wonder if there's any truth to it? Many women with psoriasis or

PA are very attractive in spite of their condition. In fact one

absolutely gorgeous lady who was an active professional model was

featured in one of the past issues of the NPF Bulletin - her trick

was to not expose the spots with psoriasis, or to cover them with

makeup. I never thought to check for eye dilation while I was on MTX.

Are there any volunteers willing to report on their eye dilation, or

lack of it while on MTX? I can't find it listed as a side effect of

taking MTX, only a caution about sun exposure.

-- Ron

>

> > I started MTX three weeks ago and got Folic acid at the same

> > time. Havewn't noticed any hair loss and no mouth sores. I do

> > have a bit of naseau and loss of appetite. The big problem for

> > me is my eyes are super sensative to the sun. Heck I even had

> > to dim my monitor as that hurt my eyes. See the rheumy on Wed.

> > Have to see what he has to say. Cannot drive any long

> > distances as the sun hurts my eyes even with sunglasses on.

> >

> > Lorna

[Guest guest]

2,

I have prescription glasses and my insurance will not pay for sunglasses. I

currently have the slip on ones. They just don't block out the light on the

sides very well. I did talk to the doctor about the possibility of naseau

before he even put me on the MTX He said that if I had problems we would go

to the shots.

I just hope it works as well as the Arava did until it decided not to get

along with my liver.

Ron,

Just my luck suddenly become attractive to men and cannot do a darn thing

about it. I haven't noticed my eyes being more dilated. I had heard about

this in ahhistory class. Women used to use belladonna drops in their eyes.

Lorna

>

> Lorna,

> Good suggestion for the light sensitivity... I had the same

> problem and took my sunglasses to the optician... they put the

> darkest available lenses in them and now it is much easier to

> tolerate being outside and driving during the daytime. I also

> had a major loss of appetite and nausea with the MTX tablets...

> for several months I have been taking MTX by intramuscular

> injection and I am doing great! Suggest this to your doctor. Good luck.

> #2

>

>

[Guest guest]

Ron,

Loved your 'interesting' informative message... actually, women 'supposedly'

wear eyeliners and mascara to give the effect of dilated pupils... I have heard

and read that dilated pupils are 'suppose' to be attractive in a seductive way,

as your message made reference to. Who knows, maybe soon there will be a MTX

shortage when all the 'Botox' ladies find out about our well-kept secret that we

just made available on ... ha ha... this could be the new trend to add to

face lifts, botox injections, and so on. I simply wear a bit of make-up to keep

from looking so washed-out... I think it is funny when I think of myself as

putting on make-up to 'look natural'. Strange concept when you really think

about it.

Anyway, I recently had my eyes checked thoroughly... but I will go and check

again and ask him if there is any connection with MTX that he knows of... you

mentioned possible retinal changes or possible increased pupil dilation... good

idea to check anyway.

I wanted to thank you for your nice comment, " Many women with psoriasis or PA

are very attractive in spite of their condition. " This is important for all of

us to know, we have PA... but PA does not 'define' who we are.... we have to

adjust to PA and living with it, but it is not our life. I have to say for all

you guys with P and PA that this is true for you as well... I have been going to

the Dead Sea Medical Center all week and have seen many wonderful guys with P

and PA, we all see each other (the women and the men) as individuals. As we are

all pretty much 'exposed' during the day...at night when everyone is all dressed

up... we are the same as anyone else... even more special because of our added

challenges in life.

Okay, I rambled on.... sorry. I hope everyone is well and fairly pain-free.

Ron, your message was different and I just had to respond... I rambled out a

response. Oh well...

#2

ron_s_dotson <Ron@...> wrote: #2 and Lorna,

I wonder if increased light sensitivity while on MTX is due to

retinal changes, or to increased dilation of the pupil of the eye? If

it's the latter, there may be some unexpected benefits (or

liabilities) - depending upon your point of view. Volume 3, Chapter 4

of " Studies On New Technologies and Practices in Communication " at

http://www.vepsy.com/communication/volume3/chap4Ciceri.pdf states:

" The dilation of the pupils is a clear signal of attraction, and a

precise psychophysiological signal of interest charged with seductive

power. "

In fact, I think I've read somewhere that models use eye-drops to

dilate their pupils prior to photo-shoots in order to give them an

extra edge and make themselves look more " sexy. " I know this is

totally irrelevant to the reasons for taking MTX and is probably the

last thing on anyone's mind who is on MTX, but I thought it might be

of interest to those ladies wondering why they get " hit-on " or

approached by men so often while on MTX ;-). LOL! Yes I was just

kidding, but I'm curious about the eye dilation aspect nonetheless,

and wonder if there's any truth to it? Many women with psoriasis or

PA are very attractive in spite of their condition. In fact one

absolutely gorgeous lady who was an active professional model was

featured in one of the past issues of the NPF Bulletin - her trick

was to not expose the spots with psoriasis, or to cover them with

makeup. I never thought to check for eye dilation while I was on MTX.

Are there any volunteers willing to report on their eye dilation, or

lack of it while on MTX? I can't find it listed as a side effect of

taking MTX, only a caution about sun exposure.

-- Ron

>

> > I started MTX three weeks ago and got Folic acid at the same

> > time. Havewn't noticed any hair loss and no mouth sores. I do

> > have a bit of naseau and loss of appetite. The big problem for

> > me is my eyes are super sensative to the sun. Heck I even had

> > to dim my monitor as that hurt my eyes. See the rheumy on Wed.

> > Have to see what he has to say. Cannot drive any long

> > distances as the sun hurts my eyes even with sunglasses on.

> >

> > Lorna

[Guest guest]

Regarding sun glasses, I wear prescription glasses full time, with

photochromatic lenses which automatically darken in outside light or even in

intense neon lighting. They are a bit more expensive than ordinary lenses,

but cheaper than having two pairs, and more convenient than slipon sun

glasses.

Regards, Gordon

RE: [ ] MTX side effects

> 2,

> I have prescription glasses and my insurance will not pay for sunglasses.

I

> currently have the slip on ones. They just don't block out the light on

the

> sides very well. I did talk to the doctor about the possibility of naseau

> before he even put me on the MTX He said that if I had problems we would

go

> to the shots.

>

> I just hope it works as well as the Arava did until it decided not to get

> along with my liver.

>

> Ron,

>

> Just my luck suddenly become attractive to men and cannot do a darn thing

> about it. I haven't noticed my eyes being more dilated. I had heard

about

> this in ahhistory class. Women used to use belladonna drops in their

eyes.

>

> Lorna

>

> >

> > Lorna,

> > Good suggestion for the light sensitivity... I had the same

> > problem and took my sunglasses to the optician... they put the

> > darkest available lenses in them and now it is much easier to

> > tolerate being outside and driving during the daytime. I also

> > had a major loss of appetite and nausea with the MTX tablets...

> > for several months I have been taking MTX by intramuscular

> > injection and I am doing great! Suggest this to your doctor. Good

luck.

> > #2

> >

> >

>

>

>

>

>

>

[Guest guest]

ron_s_dotson wrote:

>

>Many women with psoriasis or

> PA are very attractive in spite of their condition.

GASP! There's hope, there's hope!!!!

>In fact one

> absolutely gorgeous lady who was an active professional model was

> featured in one of the past issues of the NPF Bulletin - her trick

> was to not expose the spots with psoriasis, or to cover them with

> makeup.

Rats. Guess it wasn't me (LOL).

--Louise

whose spots are not amenable to covering with makeup (nah; that'd be too

easy....sigh)

[Guest guest]

Hi Cheri,

Sounds like we are mirror images - the way you described how you felt

taking the mtx is identical to me.

By the way everyone, was only given a 4 week prescription for the mtx

because of it being new and rheumy wanting to check 2-week blood

work. Phoned him last week to get renewal - he's on vacation 'til

18th - so won't be taking this week's dose. I was told that if I got

an infection, I was not to take it during that particular week. Is

it going to be catastrophic (grin) missing this dose?

> My sides effects began with lightheadness. A friend who has taken

it for years said she always took it Sunday after church and took a

nap and when she woke up her an her husband would go about their

normal life. So I thought........I can do that.

>

> Well, the first few weeks I would sleep most of the day so began

taking it on Saturday night just before bed but I was still really

tired all day Sunday. It gave me intestinal issues until about

Wednesday then I would get to feeling pretty well by Thursday. The

longer I took it the more tired I became and then I started getting

really fuzzy headed. I just couldn't think like my old self. I was

emotional too.

>

> During the year that I took it the effectivness was short lived. I

went from taking three 2.5mg pills every weekend to 15 or 19 (can't

remember right now) before we decided that it wasn't going to do any

more for me.

>

> In the course of reading all the postings here about folic acid I

know now that I was taking it all wrong. I would take a big dose a

few hours before I took the mtx then take more throughout the weekend

but I felt so lousy during the week that I would forget to take it.

>

> I'm thinking of asking my doc if it would be worth a try to do it

again but with folic acid taken correctly. Any ideas out there on

this?

>

> Take care of yourselves today, Cheri

>

>

>

[Guest guest]

--- <missionblondie@...> wrote:

> Is it going to be catastrophic (grin) missing this

> dose?

>

,

Probably not; it typically takes a couple months to

make a noticeable difference. Of course, if you've

already noticed improvement, you may experience a

slight backslide.

Sandy

__________________________________

[Guest guest]

> > Is it going to be catastrophic (grin) missing this

> > dose?

> >

>

>Hi ,

This could actually be informative for you...since you were wondering

if MTX was actually making things worse. Or at least it didn't seem

to be helping.

Marti

[Guest guest]

My thoughts too... we'll see at the end of this week what everything

is like!

K

> > > Is it going to be catastrophic (grin) missing this

> > > dose?

> > >

> >

> >Hi ,

>

> This could actually be informative for you...since you were

wondering

> if MTX was actually making things worse. Or at least it didn't seem

> to be helping.

> Marti

[Guest guest]

Hi, I also had problems with MTX. I was only on it for about 2 weeks and

immediately noticed swelling of my lymph nodes and definitely had problems

breathing. I'm allergic to a lot of things, but never to medication before

this. They took me off of it immediately but it took almost 2 weeks to get

back to normal. My next big problem was putting me on Enbrel. That one

almost killed me. I had the same reactions but they were more severe. That

took over a month to recover from. I ended up with pulmonary edema and now

I'm being told I have congestive heart failure. Of course, no one will say

the ENBREL was the cause, but it makes me wonder. I had a chest x-ray

before the ENBREL and it was perfectly normal. One month later, it shows my

heart has enlarged, I have water on my lungs and I am diagnosed with

congestive heart failure. So be careful.

It sounds like you have been on this drug much longer than I was. So there

could be chance like you said it is something else. But I was told with

allergies that it is a combination of what we are allergic to that normally

sets us off and not only one thing. Hopefully, you won't have the problems

I've had, but when I saw your email I knew I had to tell you of my problems.

PS. I've had asthma and allergies for almost 30 years.

Take care and good luck. Sincerely, Fran in Florida.

[ ] MTX side effects

I was wondering if anyone had experience with respiratory symptoms

associated with MTX use. I am on .75 cc inj. MTX/week plus 2 doses

of Enbrel/week. I have had 2 months of coughing, pain on the left

side/rib area, wheezing etc. My internist first thought I was

dealing with an allergy-it is fall and I live in Michigan, and am

allergic to molds, so this was logical. However, in spite of

cranking my inhaler dosage up to every 3-4 hours, and adding

rhinocort( a nasal steroid) I am still having symptoms. Last week

he did order a chest x-ray, but as I read the literature on MTX,

these problems don't always present on an x-ray. I have another

appointment with him tomorrow, but I wonder if I should contact my

rheumy first, and tell him about the symptoms, and suggest he

contact my internist. This internist is pretty good on general

medicine, but I don't think he has much experience with autoimmune

diseases. Thanks for any input-and you can email me privately also:

heatherbrae@...

[Guest guest]

Hi ,

I was just at my GP this morning for what I thought was unrelated PA

problems. It looks like I have some sort of kidney infection and I

had a bad bladder infection this past summer that put me in the

hospital (I'm just funny that way-heaven forbid I get symptoms the

normal way lol) - but he mentioned to me (which I remember reading

somewhere) with MTX (I'm on 20mg tabs) it lowers your immune system

so your more likly to get infections. I know prior to these, I had

never had a bladder or kidney infections.

Take care,

Jeannine

> I was wondering if anyone had experience with respiratory symptoms

> associated with MTX use. I am on .75 cc inj. MTX/week plus 2

doses

> of Enbrel/week. I have had 2 months of coughing, pain on the left

> side/rib area, wheezing etc. My internist first thought I was

> dealing with an allergy-it is fall and I live in Michigan, and am

> allergic to molds, so this was logical. However, in spite of

> cranking my inhaler dosage up to every 3-4 hours, and adding

> rhinocort( a nasal steroid) I am still having symptoms. Last week

> he did order a chest x-ray, but as I read the literature on MTX,

> these problems don't always present on an x-ray. I have another

> appointment with him tomorrow, but I wonder if I should contact my

> rheumy first, and tell him about the symptoms, and suggest he

> contact my internist. This internist is pretty good on general

> medicine, but I don't think he has much experience with autoimmune

> diseases. Thanks for any input-and you can email me privately

also:

> heatherbrae@c...

[Guest guest]

Hi all, and thank you for the informative replies. I did talk to my

rheumy today, and he said that respiratory reactions are more common

in the early stages of MTX use and I have been on it for a long time-

over 2 years. But he suggested I leave off the MTX for 2 weeks and

see if my respiratory symptoms improve, and to let my Internist know

that we are trying to eliminate 1 more possibility that might be

related to this respiratory problem. I know that the increased

inhaler, antibiotic and nasal steroid have reduced my symptoms in

some fashion,but nothing has made this all better. And I am getting

pretty tired of fighting for breath all the time. Appreciate all of

you! (aka tangsoodolady)

[Guest guest]

My son was on mtx injections for 1 1/2 years. He started having major nausea

and vomiting once the dose was increased to 1.0 ML. He was very sick for up

to 4 days after. Major mood swings, too. We tried all of the Rx anti-nausea

medication, but nothing did the trick. Even though the mtx was helping his

joints and psoriasis, we, as parents, felt the benefits were not worth the

side effects. Andy switched from mtx injections to arava. We have seen no

side effects with arava, and he's been on it for over 2 years.

On Tue, Jan 27, 2009 at 7:59 PM, hendricksonhouseful <nuestrasenora@...

> wrote:

> Lucy started mtx injections 10 days ago. She has been nauseous ever

> since.

> The rheumy called in a prescription for Zofran a week ago. She is taking it

> all the time and even then she is still experiencing some nausea. It's so

> frustrating - the mtx is helping her joints but now she feels miserable

> from

> the side effects. She doesn't see the rheumy until Feb. 23. I don't know

> whether to call him or not. I don't even know what the alternatives are.

>

> Amy and Lucy, 6 poly

>

>