Methotrexate

[Guest guest]

Hi Norman & Dorothy,

Well, that may be true for you, but it's the exact opposite for me.

MTX does wonders for my joints, but doesn't seem to do much for my

Psoriasis.

It's just another one of the variables with this disease. Treatment

really is hit and miss. I'd advise that if a drug is not working to

your expectations and needs, ask you rheumy to switch you to another.

The difference could be night & day.

Stay Well,

[Guest guest]

I hope the methotrexate works for you Dorothy.

I've been taking methotrexate for a number of months now. I have noticed that

it has had an affect on my PA, and I'm grateful. If the methotrexate has had an

affect on my P, it has been slight.

[Guest guest]

Norm: I had rotator cuff surgery too, and - if I had to guess - I'd wager a bet

that it is more likely from something you did (could be almost anything but

often a fall) rather than the PA. Mine was very bad - doc wasn't even sure he

could fix it but I was lucky because he's one of the best around. It was also

complicated by a torn biceps tendon so a 2 hour surgery turned into 3 and a

half. But it's great now and, for me anyway, recovery and rehab were literally

a " piece of cake. " They kept telling me at the hospital to " keep ahead of the

pain " and sent me home with a pain pill in me before the local anesthetic had

even come close to wearing off. After about 5 days, I finally quit them because

there really wasn't enough pain to justify continuing them. I did take them -

as instructed - before I went to therapy but even that didn't hurt all that

much. Had a great therapist too. However, I will also warn you that I know two

men - one, my brother-in-law - who claim that it was all so painful that they'd

never, ever go thru it again. But maybe we gals are just stronger and you guys

are just wimps??? (Ha!)

Anyway, go for it. You'll likely be glad you did. I think we all too often

blame every ache and pain on our PA when there are other structural problems at

work - including a lot of osteo. Incidentally, my ortho who did the surgery

said he'd operated on several patients who were on Enbrel with no problem at

all.

Joanna Hoelscher

[Guest guest]

Hello Gurus of Arthur,

I knew someone would have an answer and as usual you were right. Lily

is going to try the shot once more tonite and if it still burns, we

are going to switch to pills. My rheumy suggested calling all the

pharmacies around here but no one is carrying it anymore. In fact

most places don't have either one.

They also suggested distraction, complicated math problems and

visualization. I think reflexology might be worth a shot (no pun

intended) so we'll try that too. Who knows maybe all of it will work.

Thanks for the suggestions,

Melinda and Lily Grace

[Guest guest]

Sorry, Lesley.

How high is the AST? Do you take folic acid, too?

Not an MD

On Fri, Nov 21, 2008 at 11:14 AM, madhattercharliechurch

<madhattercharliechurch@...> wrote:

> Hi everyone.

> I had a phone call from my doctor this morning instructing me to stop

> taking my prescribed methotrexate. I started off 6 weeks ago on 5mg

> then increased to 7.5. My blood tests have shown high levels of AST. I

> had been feeling very unwell, sick and tired, but had thought it was

> just a side effect. I have to go and see my doctor on Thursday when

> they will take more blood. When the levels are back to normal they

> will try me again but on a 2.5mg dose.

> Has anyone else had problems at low doses? Just feeling very fed up. I

> am in the middle of moving so am stressed enough as it is.....still

> smiling though...just!

> Many thanks for any help, advice and support.

> Lesley

> x

[Guest guest]

Hi

Yes, I take the folic acid. My readings went from 14 to 80 after the first two

weeks on 5 mg.

x

> Hi everyone.

> I had a phone call from my doctor this morning instructing me to stop

> taking my prescribed methotrexate. I started off 6 weeks ago on 5mg

> then increased to 7.5. My blood tests have shown high levels of AST. I

> had been feeling very unwell, sick and tired, but had thought it was

> just a side effect. I have to go and see my doctor on Thursday when

> they will take more blood. When the levels are back to normal they

> will try me again but on a 2.5mg dose.

> Has anyone else had problems at low doses? Just feeling very fed up. I

> am in the middle of moving so am stressed enough as it is.....still

> smiling though...just!

> Many thanks for any help, advice and support.

> Lesley

> x

[Guest guest]

Sorry, Lesley. Please let us know what your rheumatologist says about

your situation.

Not an MD

On Sat, Nov 22, 2008 at 12:31 PM, Lesley Rafferty

<madhattercharliechurch@...> wrote:

> Hi

> Yes, I take the folic acid. My readings went from 14 to 80 after the first

> two weeks on 5 mg.

> x

[Guest guest]

,

As far as mouth sores...my daughter tends to get those inside her mouth like a

canker sore, which they say are a side effect from the methotrexate. They are

usually in the gumline. I am not sure about one's outside of the mouth to me

that sounds like a cold sore, but I don't know. I know her rheumy recently

increased her folic acid dose to help with the mouth sores...but she still gets

them periodically. Her dentist has given us a medicine that helps coat them to

help with the pain. Sorry if I am not much help... Good luck!

Jen

mom to , 8, poly

Methotrexate

For those of you who have kids on Methotrexate who have had mouth sores

as a side effect, what do the sores look like? Abby has a sore in the

corner of her mouth where her lips meet and that cheek seems to be a

bit swollen so she keeps biting it. I didn't know if it was a side

effect of meds or just a cold sore.

[Guest guest]

Hi . When my son had mouth sores, they did look like what I would

call a cold sore. They were red bumps on the inside of his cheeks

mainly, sometimes with a white center. He took folic acid and rinsed

with Listerine to help control them. Sorry I'm not much help; maybe

someone else can describe them better, Michele ( 21, spondy)

________________________________

From: [mailto: ] On

Behalf Of Crawford

Sent: Wednesday, February 18, 2009 2:34 PM

Subject: Methotrexate

For those of you who have kids on Methotrexate who have had mouth sores

as a side effect, what do the sores look like? Abby has a sore in the

corner of her mouth where her lips meet and that cheek seems to be a

bit swollen so she keeps biting it. I didn't know if it was a side

effect of meds or just a cold sore.

[Guest guest]

Hummm... never heard of it, but you will find we have several people in the medical profession on here who can answer any questions about medications. From: gongfy79 <gongfy79@...>Subject: Methotrexatesamters Date: Saturday, March 7, 2009, 10:02 PMThank you for the reply to my "newcomer" post. I am wondering inanyone else has had any experience with methotrexate. I was just placed on thismedication last Wednesday and after reading about the side effects I am just abit concerned.------------------------------------

[Guest guest]

This is so funny! I've been wondering why I have never heard of people with

Samters taking other immunosuppressants. Everyone seems to only be treated with

steroids, but as Samters is an autoimmune disease, it would only make sense that

other immunosuppressants would work too!

I have Samters and Churg-Strauss Syndrome, so I have a double whammy. I'm

coming off a long taper of prednisone, and its possible that methotrexate could

be in my future. If the side effects are too much to handle, I believe there

are some other options. You could ask your doctor about Immuran.

Kate

> From: gongfy79 <gongfy79@...>

> Subject: Methotrexate

> samters

> Date: Saturday, March 7, 2009, 10:02 PM

>

> Thank you for the reply to my " newcomer " post. I am wondering in

> anyone else has had any experience with methotrexate. I was just placed on

this

> medication last Wednesday and after reading about the side effects I am just a

> bit concerned.

>

>

>

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

>

>

[Guest guest]

Hi Kate,

Samter's is not an autoimmune disease in the sense that the immune

system would attack the nasal epithelium, the lungs or whatever other

organ because it would recognize that organ in itself to be foreign. It

is an immune disease, in the sense that there is an overproduction of

immune cells, but rhinologists would tend to think that are external

factors involved, such as bacteria, allergens, viruses, that serve as

triggers.

General immunosuppressants are not recommended in Samter's because they

would greatly increase the infectious risk, without necessarily being of

great help. Besides, they often carry major side effects (see Wiki for

Imuran for instance).

By the way, how did your doctors diagnose CSS with Samter's and Variant

angina obscuring the picture ? I mean that your hypereosinophilia could

be due to Samter's, or to aspirin desens if that increases the

eosinophil count ?

> > From: gongfy79 gongfy79@

> > Subject: Methotrexate

> > samters

> > Date: Saturday, March 7, 2009, 10:02 PM

> >

> > Thank you for the reply to my " newcomer " post. I am wondering in

> > anyone else has had any experience with methotrexate. I was just

placed on this

> > medication last Wednesday and after reading about the side effects I

am just a

> > bit concerned.

> >

> >

> >

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

> >

> >

[Guest guest]

First of all, let me say that no one ever suggested to me that aspirin was

causing the elevated eosinophils... that was a recent thing I had started

questioning. So, that wasn't a consideration when I got the CSS diagnosis.

I realize that Samter's is also a highly eosinophilic disease, so also, the CSS

diagnosis couldn't just be made on that either. But rather it was the variant

angina that led me down that path. I've heard that rheumatologists are less

concerned these days about seeing 4 out of 6 of those CSS criteria, and have

become more comfortable diagnosing it with less evidence.

My coronary vasospasms were NOT being controlled by nitrates and calcium channel

blockers, and I had found some articles mentioning that steroids can sometimes

help. Another side note, I have a mass in my chest that no one was able to

diagnose. We were hoping to biopsy it to look for eosinophils, but instead we

just started treating me because my vasospasms couldn't wait any longer.

So, it was the cardiac symptoms that brought on the CSS diagnosis... and the

vasospasms disappeared within one day of starting prednisone treatment. Even if

the diagnosis was questionable, the fact that the treatment worked is pretty

good proof. I suppose there is a possiblity that CSS isn't the perfect

diagnosis... maybe just hypereosinophilia... but either way, eosinophils are the

culprit in my heart problems.

Does that explanation make sense?

> > > From: gongfy79 gongfy79@

> > > Subject: Methotrexate

> > > samters

> > > Date: Saturday, March 7, 2009, 10:02 PM

> > >

> > > Thank you for the reply to my " newcomer " post. I am wondering in

> > > anyone else has had any experience with methotrexate. I was just

> placed on this

> > > medication last Wednesday and after reading about the side effects I

> am just a

> > > bit concerned.

> > >

> > >

> > >

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

> > >

> > >

[Guest guest]

You are right in pointing out that a CSS diagnosis is not always that easy. I understand that the number one criteria is hypereosinophilia ; perhaps even to the point (but I'm voluntarily stretching what I read) that the rest of the symptoms might all flow from that : asthma, vasculitis, etc. So your conclusion also makes sense.Since Samter's often gives hypereosinophilia (but not always, that depends on its severity), we have to see the number two criteria to make a differential diagnosis : vasculitis. This is where things become trickier : vasculitis is an inflammation, so to differentiate it from variant angina, we have to ask ourselves if the symptoms look more inflamamtory or more like the vasospasms of variant angina.However, the problem at this point is that the CSS symptoms often vary, and some people can exhibit a good number of variations in the presentation of symptoms. I understand that the best way to assess the vascular condition is to titer antibodies and see if there is some form of autoimmunity, but I don't remember reading how that is done. Then, if we look at the other symptoms (asthma, polyps, sinusitis, etc), it becomes very difficult to differentiate them from those of Samter's.So, I think the only good way to really tell CSS from variant angina in the context of Samter's would be to check for autoimmunity directed at the cardiovascular system.The fact that your vasospasms were not controlled is a clue, but not a definitive one, because some VA patients are poorly controlled by their medications.Anyway, since pred works, and that is good news, you don't really need to investigate urgently.If you can read or guess some French, the following pdf has a good description of CSS symptoms (sorry, their English version is less complete) : www.orpha.net/data/patho/Pub/fr/ChurgStrauss-FRfrPub745.pdf > > > > From: gongfy79 gongfy79@> > > > Subject: Methotrexate> > > > samters > > > > Date: Saturday, March 7, 2009, 10:02 PM> > > >> > > > Thank you for the reply to my "newcomer" post. I am wondering in> > > > anyone else has had any experience with methotrexate. I was just> > placed on this> > > > medication last Wednesday and after reading about the side effects I> > am just a> > > > bit concerned.> > > >> > > >> > > >> > > > ------------------------------------> > > >> > > >

[Guest guest]

Hi

You might want to give it about a month. I had to stop the oral MTX

because it made me sick. I am taking the injectable one now and the side

effects are much less. If it gets worse I would definitely call the Rhu

HEidibug

On Thu, Mar 12, 2009 at 9:35 AM, catwoman61943 <catwoman61943@...>wrote:

> Good morning everyone.

>

> I have a question re: Methotrexate. My Rheumy prescribed it for me, which

> he plans to do in combination with Humira. I have had mild symptoms in my

> knees with some to little stiffness. Anyway, my last 2 blood tests have

> shown very elevated levels of inflammation. So, I am to take 4 pills, once a

> week of Methotrexate (which I have done twice so far) and will be starting

> Humira within the next week or two. My question is: has anyone else started

> Methotrexate and feel like things have gotten worse???? The achyness and

> stiffness are so much more now since I've started it. I don't know whether

> to complain to my rheumy about it or wait and see if when I start the Humira

> if it will feel better.

>

> Please let me know if this has happened to anyone else.

>

> Thanks. Have a great day.

>

>

>

>

>

[Guest guest]

Thanks Heidibug. I'm not feeling sick from it, just so stiff and achy. I just

put a call into him. I'll see what he says when he calls me back.

Thanks again.

>

> Hi

> You might want to give it about a month. I had to stop the oral MTX

> because it made me sick. I am taking the injectable one now and the side

> effects are much less. If it gets worse I would definitely call the Rhu

> HEidibug

> On Thu, Mar 12, 2009 at 9:35 AM, catwoman61943 <catwoman61943@...>wrote:

>

> > Good morning everyone.

> >

> > I have a question re: Methotrexate. My Rheumy prescribed it for me, which

> > he plans to do in combination with Humira. I have had mild symptoms in my

> > knees with some to little stiffness. Anyway, my last 2 blood tests have

> > shown very elevated levels of inflammation. So, I am to take 4 pills, once a

> > week of Methotrexate (which I have done twice so far) and will be starting

> > Humira within the next week or two. My question is: has anyone else started

> > Methotrexate and feel like things have gotten worse???? The achyness and

> > stiffness are so much more now since I've started it. I don't know whether

> > to complain to my rheumy about it or wait and see if when I start the Humira

> > if it will feel better.

> >

> > Please let me know if this has happened to anyone else.

> >

> > Thanks. Have a great day.

> >

> >

> >

> >

> >

>

>

>

[Guest guest]

, it takes a while for the methotrexate to take full effect.

Hopefully the Humira will kick in sooner. Good luck.

Sue

On Mar 12, 2009, at 9:35 AM, catwoman61943 wrote:

> Good morning everyone.

>

> I have a question re: Methotrexate. My Rheumy prescribed it for me,

> which he plans to do in combination with Humira. I have had mild

> symptoms in my knees with some to little stiffness. Anyway, my last

> 2 blood tests have shown very elevated levels of inflammation. So,

> I am to take 4 pills, once a week of Methotrexate (which I have done

> twice so far) and will be starting Humira within the next week or

> two. My question is: has anyone else started Methotrexate and feel

> like things have gotten worse???? The achyness and stiffness are so

> much more now since I've started it. I don't know whether to

> complain to my rheumy about it or wait and see if when I start the

> Humira if it will feel better.

>

[Guest guest]

Things can get worse since it takes six to eight weeks for the MTX to really

start being effective, after that you only have to put up with all the side

effects, but it's better than not having it.

Stan,

Seattle, Sunny!

[ ] Methotrexate

Good morning everyone.

I have a question re: Methotrexate. My Rheumy prescribed it for me, which he

plans to do in combination with Humira. I have had mild symptoms in my knees

with some to little stiffness. Anyway, my last 2 blood tests have shown very

elevated levels of inflammation. So, I am to take 4 pills, once a week of

Methotrexate (which I have done twice so far) and will be starting Humira within

the next week or two. My question is: has anyone else started Methotrexate and

feel like things have gotten worse???? The achyness and stiffness are so much

more now since I've started it. I don't know whether to complain to my rheumy

about it or wait and see if when I start the Humira if it will feel better.

Please let me know if this has happened to anyone else.

Thanks. Have a great day.

[Guest guest]

Hi :

I was happy to read you are feeling so much better. I too, take my MTX

in injection form. It works so good for me. The pills made me so sick

to my stomach 24 hrs. a day. I thank God the injections were a option.

I hope you continue to feel better and better everyday. Take care of

yourself.

Hugs,

Barbara

>

> I too was on the Methotrexate pills and things did get worse. I spoke

to my rheumy about it and he thought I maybe having a reaction to

something in the pills. He then gave me the Methotrexate Injections. He

said with the pill your body gets a varied amount. It depends on what

you absorb. With the injection you get the same amount all the time. I

have taken 5 injections now along with my Enbrel and I am in heaven. The

pain is so minimal and going less and less everyday. I can do my farm

chores without it hurting. I have hurt for so long I thought that

everyone was like that. Was I wrong. You may want to talk to your doctor

about the Methotrexate injections.

>

> Hope all have a painfree day

> in MN

>

>

>

>

>

[Guest guest]

Hi Pam:

The MTX pills made me so sick to my stomach that I couldn't endure it

anymore. I had 24 hr. a day nausea week after week. My Rheumy switched

me to MTX injections, which I do 1x a week. It works wonderful, and I

have been doing this for almost 6 years now.

I was nervous about self injecting myself, but it is so easy to do. I

am never sick to my stomach anymore from the MTX. Horray!!!

Hope this info. helps you. I hate to be sick to my stomach. Yuck......

Hugs,

Barbara

>

>

> Hi Everyone,

>

> I don't post much, but I read all the messages. I could really use

your

> help today. My Reumy increased my Methotrexate from 4 to 6 pills. I

took

> them on Tuesday morning. It has never made me sick before. I am so

sick

> on my stomach today I can barely move. I know some of you get sick

after

> taking it. How many days does it take to make you sick? This is not a

> good feeling at all. I hope I just picked up a stomach virus

somewhere.

> One of my dogs has diarrhea and I need to go to the vet to get her

some

> medicine. I will still have to go. I'm sure she feels worse than I do.

> He also wants me to go on a injectable medicine. He wants me to choose

> between Embrel, Remicade, or Humira. What are some of your experiences

> with any of these drugs, pros and cons. How should I go about choosing

> which one to go on? Thanks for any help you can give me.

>

> Pam

>

[Guest guest]

Hi Pam,

I have been on Enbrel, Humira and Rituxan. I think you will more than likely

find that the right bilogical really depends on the person. I didn't mind either

one of the 3  that I had been on although I got the least side effects from

Rituxan and it just happened to work really well for me. I have many, many drug

allergies so I had to go thru each and every drug & injectable drug to find the

right one for me. Just be patient as well as pay attention to what a drug does

or does not do for you so you can report back to your rheumy.  THey will also do

all the necessary blood tests to monitor you as you go along.

Good luck!!

in SC

ltdavis_jrdavis@...

From: Pam Hunt <pamhunt56@...>

Subject: [ ] Methotrexate

Date: Thursday, April 9, 2009, 1:01 PM

Hi Everyone,

I don't post much, but I read all the messages. I could really use your

help today. My Reumy increased my Methotrexate from 4 to 6 pills. I took

them on Tuesday morning. It has never made me sick before. I am so sick

on my stomach today I can barely move. I know some of you get sick after

taking it. How many days does it take to make you sick? This is not a

good feeling at all. I hope I just picked up a stomach virus somewhere.

One of my dogs has diarrhea and I need to go to the vet to get her some

medicine. I will still have to go. I'm sure she feels worse than I do.

He also wants me to go on a injectable medicine. He wants me to choose

between Embrel, Remicade, or Humira. What are some of your experiences

with any of these drugs, pros and cons. How should I go about choosing

which one to go on? Thanks for any help you can give me.

Pam

[Guest guest]

Hi Pam,

Sorry your feeling so sick. I use to be on the mtx pills, and was

switched to injections. I don't really get sick from the mtx now. Make

sure you take folic acid every day, except the day you take mtx. When I

took mtx pills, I would be sick 3-4 days.

I am on humira right now, and I will try anything to keep going. I do

believe it helps me. I was on Enbrel for a time, but my doc changed me.

I find when taking the humira, the med stings going in.

Let your doctor know how your feeling, and maybe he can change something

for you to help you. I hope you feel better soon.

Get better soon, Tawny

>

>

> Hi Everyone,

>

> I don't post much, but I read all the messages. I could really use

your

> help today. My Reumy increased my Methotrexate from 4 to 6 pills. I

took

> them on Tuesday morning. It has never made me sick before. I am so

sick

> on my stomach today I can barely move. I know some of you get sick

after

> taking it. How many days does it take to make you sick? This is not a

> good feeling at all. I hope I just picked up a stomach virus

somewhere.

> One of my dogs has diarrhea and I need to go to the vet to get her

some

> medicine. I will still have to go. I'm sure she feels worse than I do.

> He also wants me to go on a injectable medicine. He wants me to choose

> between Embrel, Remicade, or Humira. What are some of your experiences

> with any of these drugs, pros and cons. How should I go about choosing

> which one to go on? Thanks for any help you can give me.

>

> Pam

>

[Guest guest]

Jen, My son takes Methotrexate, and he says it makes him feel like he is going

to throw up. And he gets sleepy. I am thinking of going on it myself. I hurt so

bad, that I will try anything. I go to my Rheumy Wed, and can't wait to see what

he wants to do. All my joints are growing bone spurs now. I can hardly move now.

But I hope he knows what to do.What a life. in Oregon

From: jennie_frederick@...

Date: Fri, 24 Apr 2009 17:54:39 +0000

Subject: methotrexate

I had taken sulfasalazine for about two months without any results. My Dr. said

he wanted to try me on methotrexate but I had to do some blood work before

starting it. Has anyone taken this and do you have any side effects from it? Jen

_________________________________________________________________

Windows Live™ SkyDrive™: Get 25 GB of free online storage.

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[Guest guest]

J. Blake

Personal email: sjblake@...

http://www.I am doing well on Mtx (2 years now). So far no side effects. I

suspect I will soon be going up to 12.5 or 15 mg. We will see how that goes.

..org

I'm protected by SpamBrave

http://www.spambrave.com/

[Guest guest]

I have been on methotrexate for about 7 months now and it has done wonders for

me. The side effects are a little rough at first, but my doctor has me take

robitussin DM 2 teaspoons two hours before and then 2 teaspoons with the

medication. It cuts the side effects down by half. My mom takes it too and it

have helped her.

Karin