Re: Methotre-HATE

[Guest guest]

Kristy,

I find I do best if I take the injection in the evening right before I go to

bed. I do still get a bit nauseated 24-36 hours later and tired but this is

better than it used to be. I only take 6 mg which is better than when I was

taking 8 mg. I also take folic acid. Do you?  I know the side effects can be a

real pain, but for me it has been worth it.  Maybe give your body some time to

adjust to it. Hope you feel better. Patty

[Guest guest]

Hey Kristy,

I was on methotrexate several years ago and had severe stomach problems. It had

gotten to the point where I could not eat or even smell food. I weighed 140 lbs

when I started it and lost down to 118 lbs. I did not look good at all. I

eventually stopped taking it and all the stomach problems disappeared. I would

not recommend methotrexate to anyone. I am now on Enbrel, which is a miracle

drug for me. I have no joint pain or swelling and no side effects. Hope this was

some help to you.

Good Luck,

Deana

[Guest guest]

I feel the exact same way, except I also get a KILLER headache to go along with

it. The symptoms/side effects get slightly better (for me) if I don't skip a

week. If I do, they seem worse when I start it up again. I call it a Love/Hate

relationship, since my arthritis has improved on the MTX, but I hate giving up a

day or two each week because of the side effects. Hang in there!

Dena

www.arthritisbam.blogspot.com

[Guest guest]

I had those same symptoms. I think it is b/c it has the same meds a chemo has. I

ALWAYS felt like that after my injections, and was on it for 10 months and it

never went away. They only got worse. It started making me have chest pains as

well... then I was taken off of it. PLUS I lost like 50% of my hair. I am

literally almost bald... so make sure they are giving you enough folic acid. My

rheumy wasn't making sure I was. I am on Plaqunil now... and LOVE it.... has

very low side effects and helps your skin a ton.

Good Luck,

Kasey

[Guest guest]

Just a word to say that not everyone has side-effects with MTX. I've taken it

for the past six months (with folic acid, of course) and never had ANY ill

effects. It's good to share experiences but it's also important to remember

that we ALL react different to each and every drug that's out there.

Joanna Hoelscher

[Guest guest]

I had a similar experience. I could not tolerate MTX at all. It made me sick

as a dog. By the time I finally settled down it was time for another injection.

Enbrel was my miracle drug also. I have been on it for 7 years and have

actually had some joint damage repair itself. Personally, I think that they

should try Enbrel first instead of torturing you with this other stuff because

it is less expensive. Enbrel can put you into remission. MTX destroys your

liver over time.

" Ron " <ronevans@...>

[Guest guest]

I agree with Joanna. I take 8 pills of MTX in the evening before bed once a

week -- and haven't really had any issues since I started taking it a couple

of years ago. Maybe a queasy stomach once in a while. But nothing major.

Combined with Humira, it's a lifesaver for me. The folic acid is the

important part. As long as I take it, I rarely have any side issues (mouth

sores).

Patty

[Guest guest]

I agree with the earlier post that not everyone is affected the same by the

drugs. In response to Ron, I had a very concerning reaction to Enbrel and will

never take it again. I have two lesions on my brain which the MD says may or may

not have been caused by the Enbrel. I had progressive numbness on one side of my

body and all sorts of altered sensation while on Enbrel. It worked better than

anything else I have tried but my rheumy said I must never use a biologic again.

Also, MTX does not have to damage your liver and many are on it for years

without a problem. I only post this because I remember trying to figure out what

to do for my PsA and hope this will help others.

patty kettelhut <kettelhutpatty@...>

[Guest guest]

I agree that everyone's reaction is different to different drugs. I take 20mg

of MTX a week (8 pills) and as long as I take it with food, and take my folic

acid, I'm fine. At least I have been so far! But I know there are people on

this list that have had awful reactions to it or not been helped by it at all.

What I have noticed is that the fatigue seems to be getting worse, though. I

didn't sleep so well over the weekend (as in I only got 7 hours a night instead

of 10) and by noon Monday I was ready to crawl back to bed, having been up for

all of 4 hours. I describe the fatigue it as " jet lag " to my husband. All my

lab results come back fine, but I don't know if this is a result of the MTX

(which has slowly been increased since I started it 6 months ago), a result of

the PsA, or a result of some infection that isn't quite showing symptoms.

After being diagnosed last year, I've learned that it's really important to

listen to my body very carefully. I've been thinking of starting a

food/medication/symptoms/stress/etc. diary to try and monitor myself more

rigorously.

I saw my rheumy yesterday and he wants me to try Humira, so we'll see how that

goes. I'll be watching myself very closely for anything new . . .

Debbie

[Guest guest]

Kristy,

There are two sides to every story...I started MTX injections in December 09 and

I'm beginning to see improvement with no side effects whatsoever. It's giving me

my life back, slowly I'll admit, but I'm feeling better than I did a year ago.

What doesn't work for some may work for others.

jane

-

[Guest guest]

I have been Methotrex-Hate (great name for us who reated bad) for 2 1/2 months

and and it has made me sick. Migraine headaches and nausea. It usually knocks

me out the day after I take it. It feels like a ton of bricks on my head and my

body so it doesn't work for me and I'm going to stop it.

My Dr prescribed me Humira but at $1000 a shot my insurance won't cover it. Any

advice on how to get it? I've heard of Plaquenil but don't know why it's used?

Is it for the skin disease part of it?

Thanks all and have a pain free day!

C. Age 38 So Cal.

Sent from C's

[Guest guest]

I only had the type of fatigue you describe at the very beginning - before I

went on medication. The doctor diagnosed it as " fibromyalgia fog. " Any chance

you have that, too? At the time, I had a lot of trouble concentrating (love to

read but couldn't remember what I'd read from one paragraph to the next!) and -

in particular - when I drove, it was all I could do to keep from falling asleep

at the wheel. In fact, I described it to some people as feeling as though I had

narcolepsy, it was that bad. If your pain is getting better on the MTX, I'd at

least explore another reason.

Joanna Hoelscher

[Guest guest]

My doctor started me on 20mg. Now I am thinking that, that might be way too

high.

It is working for my joints, but the side effects are brutal. I am not able to

go to work.

Thank goodness, I do a lot of work from home, and my employer is letting me do

this, and we are praying the side effects get better over a few months.

I don't know why he started me on such a high dose ­ I also take the folic acid

and bi-weekly Humira injections. The thing is ‹ it is working for my joints I

feel.

But I am worried about my liver, as my liver enzymes have always been a

little elevated.

I don't know what to do - a lot of people say the injections have less side

effects.

Has anyone switched from pills to injections?

Kristy

[Guest guest]

Yes, we all have different reactions to medications. However, let's be careful

not to " guilt trip " those who DO have legitimate side effects to methotrexate.

For those who don't have any side effects or negligible ones, count your

blessings!

Dena

[Guest guest]

I am on all the same meds as you, however, I switched to injections of MTX from

pill, because of brutal side effects. Let me tell you, if you feel that your

joints are getting better, you stick to what you are doing. I have spent 4

years trying different meds. to help me and I think I finally have found the

right mix. I was on 25mg. of injectable MTX , but now lowered to 20 because of

liver enzymes rising. Ask your doctor about injections.

Good Luck