Methotrexate

[Guest guest]

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 Kathy:  I so agree with everything you wrote in your post.  You sound just

like what I do. Switching to the injectable MTX made all the difference on my

stomach.  I had that sickness 24/7 and could not tolerate it anymore.  I have

been on the MTX injections for 6  1/2 years now.

I have also been in a medicine induced total remission since Nov. 08.  I have no

pain or swelling anywhere.  It has been a true miracle for me.  I am so grateful

for this time, and for however long it lasts.  I take the maximum doses of all

my RA meds, and have never been off my daily dose of Prednisone.  For me, I

found the right " cocktail " of meds.  It did take all that time.

I am happy for what I can do, and I don't dwell on things I can't do.  A

positive attitude has carried me through my life.  I do rest a lot as I tire

easily.  But that is fine with me.

Finding this wonderful group of caring, loving people was the best thing I have

done for myself.  They are so incredible and so very supportive.  You have come

to the right place.

Wishing you many pain free days ahead.

 

Hugs,

 

Barbara

From: philtymom <philtymom@...>

Subject: [ ] Methotrexate

Date: Sunday, October 11, 2009, 9:24 PM

 

I have been in the background reading post all along. I too have been taking

Methotrexate (8/week) since I was diagnosed 4 years ago. I am happy and very

grateful to say for the last year I have had minimal to no pain or swelling. I

take RA a day at a time and do what my general Practioner and Rheumy say. I have

noticed that my mental outlook has alot to do with how I feel. I try to be

positive and instead think how happy I am without the terrible pain I suffered

for at least 2 years. I thought my life was over. I am thinking of asking my

Rheumy to change me to injectable Metho because of the sick stomach I do have

for at least 2-3 days. I know my limitations and try to live within

them...whenever I start to feel the least bit of pain...I scale back on what I

am doing and rest more. I hope this info can help any of you.

> Bless you all,

> Kathy S

__________________________________________________

[Guest guest]

Thanks for the kind words Jeanne.

My mom seems to be fatigued a lot (she is 84). If the Orencia works out

they will lessen the dosage of Methotrexate. Maybe this will lessen the

fatigue.

Has anyone here used Orencia and hopefully it worked for them?

Sue

[ ] Methotrxate

Sue & Jeanne,

I like your mom have Diabetes, High Blood pressure & Gastrinal issues. That

is why I was hesitant on taking MTX. I have come to the conclusion that If

we need to live some sort of normal life we need these meds, so I will try

anything to survive. Hope your mom continues to feel better each day & is

blessed to have a daughter who knows & cares about her mom's illness.

Jeanne,

Thank you for your input also. This is the reason I love this wonderful

group of people. We can speak out & say what we feel with out fearing others

won't understand how we feel & what we are going thru.

Mousie in Calif.

[Guest guest]

Kate,

Your response was very interesting for me.  I, too, have been on Orencia for

about 2 years with mtx (6 tabs a week).  It has recently begun running out about

1 to 2 weeks before the next infusion.  In August, the Orencia began to run out

about 2 weeks before the next infusion.  In September, it was about 1 week

before the next infusion.  I saw my doctor last week and he wants to increase

the mtx to 8 per week; however, I am not sure I want to do that at this time.  I

might wait another few months to see if the Orencia continues to run out...  I

do also take pain killers on a daily basis which helps with the pain I have from

the damage already done from the RA.  There are differences: I do not have any

increased pain after the injection as you do or any metal taste.  I was also on

Humira, plaquenil and mtx.  

The Orencia still works well for me - I have felt so much better since I began

it.  Last Christmas was the very first time since the RA began in 2000 that I

was able to have family over for Christmas.  I was so very happy to be able to

make a Christmas dinner (with the help of my super sweet hubby) and watch as the

family enjoyed a wonderful time!

Hope this helps...

joanne - arkansas

Re: [ ] Methotrexate

" Has anyone here used Orencia and hopefully it worked for them? "

Hi Sue,

I have been on Orencia for about 2 years, and it has worked pretty well.  I was

diagnosed with JRA when I was 10, had a " honeymoon " period from my late teens to

my early twenties, and came back with  relatively severe RA in my mid-twenties. 

I had done methotrexate, Plaquenil, Enbrel and Humira prior to the Orencia, then

moved to a combo of the methotrexate and Orencia, and am now on Orencia and

Arava.

The only weird thing I have with the Orencia is about 2 days of increased joint

pain right after the infusion.  My last four infusions I have had a metal taste

in my mouth for about 12 hours afterwards, but that just started recently.  I

get about 2.5-3 weeks of relief out of the infusion now (I used to get 4 full

weeks), but I feel like it's working pretty decently for me.  Definitely easier

than the self-injectors, which, while I'm not at all needle-phobic, were kind of

painful.

Good luck to your Mom!

Kate P-B in STL

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