Re: mouth sores/dry mouth/ulcers/etc....

[Guest guest]

In a message dated 6/5/2006 10:58:15 P.M. Eastern Standard Time,

a_cone@... writes:

I went off MTX a few months ago because the headache and nauseau had

turned into a two day non-stop headache and actual throwing up. The

side effects stopped but the flare returned. My gp (please don't

get me started on stories of me trying to find a rheumy) and I

agreed that I should go back on MTX. So i did. I took 3 pills last

Thursday. I now notice that I have a cold sore starting, an ulcer

on my tongue, and a very dry, tingly, swollen inside of my mouth.

Could this be the MTX so soon and with only 3 pills?

(((())))) yes, this can happen. It's happened to me too. You may want

to see if your doc will allow you to take MTX by injection. It's so much

easier and you won't have the ulcers as bad, if at all. Since I started the

injections, many of the symptoms went away and it's such a relief.

I do hope that you get to feeling better and that the new rheumy works out

for you. Try calling to see if they get a cancellation so you can get in there

earlier. Hang in there.

Much love,

Terry

[Guest guest]

,

I had the same problem with Methotrexate causing ulcers. I have never been on

the injectable kind, but was taking 30 mg weekly of the tabs. I took them on 2

consecutive days. I choose to do this on the weekend to help with the fatigue,

so it would not interfere with my work at that time. Taking the methotrexate has

been the only thing that has ever helped with the fevers, day/night sweats and

chills and rashes. But it rapidly depletes your red blood cells so, my doctor

prescribed Folic Acid 1 mg everyday. This was not enough for me to help prevent

the ulcers. So the doctor increased the Folic Acid to 3mg everyday. That helped

me tremendously with the ulcers. There is an over the counter med that also

helps me with the ulcers. It is called Lysine. It is very good at helping to

knock out viruses. I also include Yogurt Maybe you could discuss this with your

GP to see if it would be helpful in your case. I am presently not taking the

methotrexate due to other health problems.

But with the combination of the increase in Folic Acid I tolerated it well and

will be glad when I can resume treatment with it. Of course this hot, humid

Houston weather is not helpful either. It totally drains me. I hope you feel

better soon Mandy

a_cone wrote:

I went off MTX a few months ago because the headache and nauseau had

turned into a two day non-stop headache and actual throwing up. The

side effects stopped but the flare returned. My gp (please don't

get me started on stories of me trying to find a rheumy) and I

agreed that I should go back on MTX. So i did. I took 3 pills last

Thursday. I now notice that I have a cold sore starting, an ulcer

on my tongue, and a very dry, tingly, swollen inside of my mouth.

Could this be the MTX so soon and with only 3 pills?

Something else new to me, though I've had it a few weeks, so it's

not MTX, is the sore throat. I've had sore throats before, but they

have always been mild. This one will not go away. What do you guys

do about the sore throats?

Yes, I need a rheumy. I have tried to see 4 so far. At this point,

i have an appt in Sept to a top rheumy that Beth referred me too.

Until then, I am in a bad place. even if I can find one and I get

into a room to see them, I'm sure I'm going to run up against the

whole " your labs are fine " blah, blah, blah. I just need help at

this point and I'm scared.

Thanks,

Houston

33

[Guest guest]

,

I am so sorry you are having such a difficult time, we would do anything

to help if we could! wrote that the shots were much easier for her

to take than the pills. I agree. For me, most of the side affects went

away with the injections of MTX and they are so easy to do. I use a

small short diabetic syringe for 1cc of MTX and barely feel a little

tiny pinch. It might help to discuss this possibility with your doc.

Take care, Louise.

a_cone wrote:

> I went off MTX a few months ago because the headache and nauseau had

> turned into a two day non-stop headache and actual throwing up. The

> side effects stopped but the flare returned. My gp (please don't

> get me started on stories of me trying to find a rheumy) and I

> agreed that I should go back on MTX. So i did. I took 3 pills last

> Thursday. I now notice that I have a cold sore starting, an ulcer

> on my tongue, and a very dry, tingly, swollen inside of my mouth.

> Could this be the MTX so soon and with only 3 pills?

>

> .

>

>

[Guest guest]

I take 1mg of Folic acid every day and we are upping that to 2mg

everday. I have not heard of taking more the day after taking the

pills, maybe I'll try that. My gp could not find anything that said

there was MTX injectable available. I know there is obviously, but she

checked all her books. I hate to admit that becuase it sounds like i'm

going to a quack but she's actually a really amazing doctor that i

would refer anyone with immune system dysfunctions to.

I just have to figure out a way to hold out until I can get into the

rheumy, argh.....

Thanks for listening!

Houston

[Guest guest]

Louise,

Good to hear from you! Can you try to email me off-list? I can't

seem to get emails to you again.

xoxo,

Houston

[Guest guest]

Hi ,

I'm Kate (I know there is another Kate). I'm from Pa. Have been a

member here for a bit now. However, I lurk most of the time. Read

emails on a daily basis though.

I started the pill form of MTX 5 weeks ago. 10 mgs. a week which I

take on Saturday night due to full time employment. First week side

effects weren't 2 bad. Second week much worse with headache and

nausea to the point of fighting throwing up. Third week I decided to

split the dose as I didn't want to spend one of the two days I have

off from work sick. 5 mgs. on Saturday morning (9:00), 5 mgs.

Saturday evening (9:00). It worked beautifully - no side effects.

What I did notice though was my joints didn't seem to feel as lose.

Fourth & fifth week I took 5 mgs. at 5:00 pm and 5 mgs. at 9:00 pm.

Worked beautifully - no headache or nausea. What I did get was what

seems to be cold sores in my nose. Not sure if it's the MTX or

whether it's a little cold I have. I guess time will tell. This week

I'm going to try taking 7.5 mgs. at 5:00 pm and 2.5 mgs. at 9:00 pm.

If those results are good next week I'll try taking all 10 mgs. at

once. My goal is to take all 10 mgs. at once and not have any side

effects. I also take 1 mg. folic acid daily except of the day I take

the MTX.

For those of you out there on MTX does the side effects ever go away

as long as the pill form is taken?

>

> I went off MTX a few months ago because the headache and nauseau

had

> turned into a two day non-stop headache and actual throwing up.

The

> side effects stopped but the flare returned. My gp (please don't

> get me started on stories of me trying to find a rheumy) and I

> agreed that I should go back on MTX. So i did. I took 3 pills

last

> Thursday. I now notice that I have a cold sore starting, an ulcer

> on my tongue, and a very dry, tingly, swollen inside of my mouth.

> Could this be the MTX so soon and with only 3 pills?

>

> Something else new to me, though I've had it a few weeks, so it's

> not MTX, is the sore throat. I've had sore throats before, but

they

> have always been mild. This one will not go away. What do you

guys

> do about the sore throats?

>

> Yes, I need a rheumy. I have tried to see 4 so far. At this point,

> i have an appt in Sept to a top rheumy that Beth referred me too.

> Until then, I am in a bad place. even if I can find one and I get

> into a room to see them, I'm sure I'm going to run up against the

> whole " your labs are fine " blah, blah, blah. I just need help at

> this point and I'm scared.

>

> Thanks,

>

> Houston

> 33

>

[Guest guest]

Kathy,

My experience on the pill form of MTX was that the side effects got

worse, much worse. I had absolutely no side effects as we moved me

up from 5mg to 20mg. After a few months at the 20mg I had to split

the dose. After a few months of that, I couldn't take the headache

and dry heaving as I had to work, so I took myself off it. I did

get better while on it, so I want to get back on it again as the

flare is getting worse.

This go around I go the mouth issues with 7.5 the first dose. I

don't know if it's because of prior exposure or just a different

reaction or what. We'll see. Some great advice to check into has

been given on here.

Curious as to why your doc doesn't have you taking folic acid the

day you take the MTX?

Houston

[Guest guest]

Hi ,

I have a hard time with MTX as well--horrible headaches, nausea,

diarrhea, fatigue, etc. Unfortunately, it seems to be the one drug

that works best on my joint pain. I'm seeing my rheumy next week and

will likely switch to the injectible form, which supposedly doesn't

have as many side effects. Will let you know how it goes. Someone

else posted a message several weeks ago about taking Robitusson DM (I

think?) 6 hours prior to taking your dose, when you take it, and 6

hours after taking it. I haven't looked into this...also supposed to

relieve those side effects.

in Maine

>

> I went off MTX a few months ago because the headache and nauseau had

> turned into a two day non-stop headache and actual throwing up. The

> side effects stopped but the flare returned. My gp (please don't

> get me started on stories of me trying to find a rheumy) and I

> agreed that I should go back on MTX. So i did. I took 3 pills last

> Thursday. I now notice that I have a cold sore starting, an ulcer

> on my tongue, and a very dry, tingly, swollen inside of my mouth.

> Could this be the MTX so soon and with only 3 pills?

>

[Guest guest]

et al.,

What I'm writing may be redundant (I'm catching up on four days of

posts... but if I wait to answer the ones I want to answer until I'm

done, I forget which ones I wanted to answer... LOL... excuse the

brain fog).

When I take MTX, I don't take folic acid on the day OF or the day

AFTER. My doc says that gives the MTX the time it needs to do its

thing. I've got to admit, even with crappy side effects, I get a

couple of really, really good days (usually two days that start 48

hours after I take the MTX) that almost make me feel " normal " again!

in Maine

>

> Curious as to why your doc doesn't have you taking folic acid the

> day you take the MTX?

>

>

> Houston

>

[Guest guest]

in Maine,

I will try to find the Robitussin DM post, that I can do! I am like

you, the MTX does help the joints and I feel it's necessary. I'm

still trying to figure out my rheumy situation, for now,I think i'll

suffer through some mouth sores if necessary. But when the dry-

heaving comes back, I'm done again.

[Guest guest]

Hi there !

Sorry for the delayed response. Haven't been online for a few days as

I've been trying to get caught up on yard work.

My Rhumey didn't say why (and I didn't ask) why I don't take folic

acid on the day I take MTX. I'm new to this drug, don't want to take

it and was most concerned about giving him my negative thoughts when

he said he wanted to put me on it. He won! I take my dose on Saturday

evening and have been spliting the dose at different times every week

to find times I can take it without getting side effects. Last night

I took 2 at 7:00 pm and 2 at 9:00. Today I was tired and just a wee

bit sick to my stomach. Did have a headache but nothing I couldn't

bare. I may stay at these times for a few more weeks and then split

the dose 1 hour apart. My goal is to take 10 mgs. all at once without

getting to sick. However, reading the posts on MTX seems the side

effects will never go away as long as I'm on the pill form. Hopefully

he'll never increase my dose or better yet he'll take me off of it

when I tell him how much I dislike it. I find it does help my joints

but nothing major. I know I have to give it time to work but if I

don't see any hugh improvement I'm going to tell him to try a new

drug. Or perhaps the injectable (hopefully my insurance will allow

it). I'm waiting to see the posts on taking Robitusson - I will try

it!!

Hopefully your mouth sores are improving - keep me posted as to how

your doing on it.

Cheers,

Kate

>

>

>

> Curious as to why your doc doesn't have you taking folic acid the

> day you take the MTX?

>

>

> Houston

>