methotrexate question

April 3, 2008

The rheumy at UAB told me the exact same thing. You should not have a

liver biopsy unless your blood work indicates a need for one.

Pam

Alabama

April 13, 2008

I don't believe that I have ever had that much trouble with the MTX,

but You might try eliminating cow's milk and trying a lactose free

diet. I do seem to have developed IBS and food intolerances since the

meds for chronic pain, psoriasis, and PsA. Also, I have achieved good

results curing nausea with ginger root tea w/honey (both to sweeten &

minimize the bite some people taste in the ginger). Or, insurance only

allows 12 tabs per month, but the generic for zofran (an anti-nausea

med for chemo/cancer patients) is working much better for me now.

Sometimes it takes 2, rarely up to 3 tabs to calm everything down as a

last resort, but it's better than being miserable w/nothing to take

care of the problem!!

C

April 13, 2008

Armand --

Keep in mind that all of the biologics are recommending that the

" best " results come from using the biologic and MTX together (not nec

at the same time) as part of your treatment regimen. Being on one does

not necessarily mean getting off the other b/c they tend to compliment

one another. Didn't want to burst your bubble but hate to see you

building false hope. Hang in there!

Cheryl M.

September 23, 2008

Hi Ambrose, I have been on this list just a few weeks, my daughter

now aged 15, was diagnosed a year ago after suffering for apx

3years. As her condition was pretty bad by the time of diagnosis she

was quickly put on Methotrexate Injections (15mg in 0.6ml per week).

I did not know anything about the condition or the treatment, her

flare ups were frequent, painful and in most of her joints including

her jaw. I was so consumed with stopping the pain that I didnt

really ask many questions. Since she has started the treatment her

condition has improved immensley. However, headaches, migrane,

sickness, nausea, tiredness and mood-swings are very much a problem.

I have tried to discuss this with her consultent without much

success. She is very negative towards me if I bring up the subject

of any side-effects, so I too would love to here from others on this

treatment as I feel I am being left in the dark.

By the way I live in North Wales (Welsh) in the UK.

I too would welcome any feed back, advice and experiences of people

being railroaded into accepting this treatment for their children.

Thanks, . (Mother of 4, happy nanna of 1 unexpected, much

adored baby girl)

>

> I have been on this list for a few months now and I dont think

that I

> have posted anything as of yet. My wife, three son's and I live in

> Kodiak Alaska. My oldest boy who is soon to be 13 was diagnoised

with

> JRA over a year ago. he started having pain about a year before he

got

> diagnoised and it was so bad that he couldnt even bend his wrist,

after

> several months of physical therapy, an MRI and a cortizone shot he

> seemed to be able to become fairly pain free. Three months ago we

had

> another MRI done on his wrist, last week they finally got hold of

us to

> tell us that he had a fracture in his wrist and we have an

appointment

> to see a specialist in another three weeks. The Pediatric

Reumatologist

> (sp?) has been trying to push us into giving him Methotrexate

> injections which I am not very keen on. I havent read to many good

> things about it. So my question is basicly about others

experiences

> with Methotrexate and also any alternative therapies being used.

Any

> feed back would be greatly appreciated.

>

> Ambrose Stapleton

>

September 23, 2008

Is it possible that your son doesn't have jra at all and it is a

fractured wrist that went undetected all this time? As far as MTX

goes, it has worked wonderfully for Grant. He has side affects like

nausea associated with it but we are willing to deal with that to

have all his inflammation gone! I believe that standard protocal

for medication for JRA is first to start with an NSAID like

Naprosyn. If that doesn't take away the inflammation and pain then

the next step would be to add MTX to the mix (or another DMARD). If

after a period of time that isn't working to get rid of all

inflammation then they will try a TNF blocker such as humira or

enbrel.

We haven't tried an alternate therapy for Grant but from what I've

read from others those may work for a short period of time but not

for the long haul.

& Grant (11, PsA/Uveitis)

>

> I have been on this list for a few months now and I dont think

that I

> have posted anything as of yet. My wife, three son's and I live in

> Kodiak Alaska. My oldest boy who is soon to be 13 was diagnoised

with

> JRA over a year ago. he started having pain about a year before he

got

> diagnoised and it was so bad that he couldnt even bend his wrist,

after

> several months of physical therapy, an MRI and a cortizone shot he

> seemed to be able to become fairly pain free. Three months ago we

had

> another MRI done on his wrist, last week they finally got hold of

us to

> tell us that he had a fracture in his wrist and we have an

appointment

> to see a specialist in another three weeks. The Pediatric

Reumatologist

> (sp?) has been trying to push us into giving him Methotrexate

> injections which I am not very keen on. I havent read to many good

> things about it. So my question is basicly about others

experiences

> with Methotrexate and also any alternative therapies being used.

Any

> feed back would be greatly appreciated.

>

> Ambrose Stapleton

>

September 23, 2008

Hi, Ambrose. MTX worked quite well for my son. We were able to get him

off Celebrex once the mtx kicked in, and he was able to decrease the mtx

as time went on. It was for him a wonderful drug, with few side effects.

His biggest was mouth sores, which he controlled with Listerine, and

some fatigue, but not much. Taking the folic acid, which anyone on mtx

should do, helped. My husband is now on mtx and he has a big problem

with fatigue. But he is on a higher dose than our son was. The mtx is

helping my husband somewhat; our son had a much faster reaction to the

mtx and began to notice his symptoms diminishing after about 6 weeks.

Chris' rheumy really wanted him off the NSAID's as they can cause a lot

of trouble with your stomach and other organs. Not that mtx can't, but

it is more likely with the NSAID's being used in large doses. Chris'

rheumy felt better about him being on the mtx only. Just giving you one

dr's opinion.

As to alternatives, according to my husband's rheumy, you usually have

to try mtx first before an insurance company will ok a biologic like

Enbrel, for example. As to diet and alternative meds, and how well they

help the JA, some people have success and some do not. I am not sure how

much any of that will affect the disease itself like a DMARD will;

rather I think that those will help the physical comfort of the person

suffering from the pain of the arthritis and that is certainly a valid

and important part of the fight against JRA. Hope this helps, Michele

( 21, spondy)

________________________________

From: [mailto: ] On

Behalf Of Ambrose, Markella, Seraphim, , and Eustachius

Sent: Monday, September 22, 2008 11:09 PM

Subject: Methotrexate question

I have been on this list for a few months now and I dont think that I

have posted anything as of yet. My wife, three son's and I live in

Kodiak Alaska. My oldest boy who is soon to be 13 was diagnoised with

JRA over a year ago. he started having pain about a year before he got

diagnoised and it was so bad that he couldnt even bend his wrist, after

several months of physical therapy, an MRI and a cortizone shot he

seemed to be able to become fairly pain free. Three months ago we had

another MRI done on his wrist, last week they finally got hold of us to

tell us that he had a fracture in his wrist and we have an appointment

to see a specialist in another three weeks. The Pediatric Reumatologist

(sp?) has been trying to push us into giving him Methotrexate

injections which I am not very keen on. I havent read to many good

things about it. So my question is basicly about others experiences

with Methotrexate and also any alternative therapies being used. Any

feed back would be greatly appreciated.

Ambrose Stapleton

September 23, 2008

Hello, I just wanted to add that JRA can cause osteopenia in children.

This leads to weaker bones around the joints. My little one received a

broken wrist during a standard blood draw at the pediatricians office.

Her bone scan reveled areas on her body at higher risk of fracturing.

We have had luck with the Methotrexate so far, but she is at her max

dosage for her age/ height/ and weight. I am weary of the injections

as well, but I do hear good results. I hope your son is pain free, and

they get it all figured out. Best wishes.

Lani

>

> I have been on this list for a few months now and I dont think that I

> have posted anything as of yet. My wife, three son's and I live in

> Kodiak Alaska. My oldest boy who is soon to be 13 was diagnoised with

> JRA over a year ago. he started having pain about a year before he got

> diagnoised and it was so bad that he couldnt even bend his wrist, after

> several months of physical therapy, an MRI and a cortizone shot he

> seemed to be able to become fairly pain free. Three months ago we had

> another MRI done on his wrist, last week they finally got hold of us to

> tell us that he had a fracture in his wrist and we have an appointment

> to see a specialist in another three weeks. The Pediatric Reumatologist

> (sp?) has been trying to push us into giving him Methotrexate

> injections which I am not very keen on. I havent read to many good

> things about it. So my question is basicly about others experiences

> with Methotrexate and also any alternative therapies being used. Any

> feed back would be greatly appreciated.

>

> Ambrose Stapleton

>

September 24, 2008

Hi Ambrose,

My daughter Maggie has been taking injections of Methotrexate for over a

year now. She really has never had any side effects from this medication at all.

She takes 25mgs once a week on Wednesday mornings. I too read everything

possible out there on this med before I injected it into her body. Most of the

horrible side effects that you read about are usually caused by the large

amounts that are used of Methotrexate, such as for someone who has cancer.

As always though, each person can react to a medication differently. Even to

something as mild as Tylenol. It helps some, it does nothing for some, it makes

some sick.

It does take a rather long time for it to start working, I think it was

about 2 or 3 months before we noticed a change for her, it was not enough on

it's own to help her she is on Prednisone, Celebrex and Kineret as well. But I

do know that it hasn't hurt her in any way and we have seen some good things

because of it.

I hope this helps at least a little in making your decision!!

Diane and Maggie age 11 (OI,CP,Systemic JIA,Uveitis, PIDD)

From: Ambrose, Markella, Seraphim, , and Eustachius

<thestapletonfamily@...>

Subject: Methotrexate question

Date: Tuesday, September 23, 2008, 4:09 AM

I have been on this list for a few months now and I dont think that

I