Various metho etc issues/ re: new members post

[Guest guest]

,

Your concerns about kids getting it are valid. In my family both my

parents have it. My sister and I both do (she has more of the Ankylosing

spony thing than I do), my niece has it, and at least one of her kids do.

The metho thing: I have been told by my dr to lower the dosage as after 14

years of being on it my liver enzymes are messing up. He lowered it a step

and they were still higher than they should be so he lowered it again. I

will be seeing next visit what the level is. He says the next step is a

biopsy....if it is still high even with a lowered dosage.

By the way I have had few problems with metho symptoms like headaches or

whatever. at the beginning I tookit in drop form in water,, then went to

the tiny pills.

I have had problems with my middle fingers for a lomg time (which always

seems to prompt a smile or a smart remark). The left one has been bent at

a 90 degree angle for a long time. The right one started out that way but

the dr in Nebraska got me a splint which halted that process.

Now in the past couple of months the middle finger and also the 4th finger

are bending. It almost seems like my hand is twisting. There is some pain

at my right elbow which mmakes me think that is the cause.... I have

asked him about getting a splint but he says it won't help (This is my dr

in iowa where I now live--not the one in ne who helped before). He says

it will just go back the way it is.

I disagree! I dont want to use the use of my hand...it functions but to a

limited degree. I can't pick up anything wide as it won't extend at all.

The left one does even with the middle finger involvement. With the

right I am having to adjust my typing as I just can't use it normally.

The dr wants me to go on humira but i am relunctant to do that as I know

it has a tendency to allow for onset of lupus or lymphoma. Two of my half

sisters have died of lymphoma in the past five years. That makes me very

nervous. He says all the drugs have that potential....the rheumy drugs,

but I understand the potential is higher with humira...

I had had good success with Remicaide before but he says since it has been

so long since I took it there is a good chance my body will now have an

allergic reaction to it. (My friend was on enbrel for a while and had to

stop for a while, and now upon restarting it doesn't work for him

anymore---he is going to that one symphoni)

I have had reiters for over 20 years and up to now it has been

manageable.. but at this point I feel lost and confused.

Liz

On Thu, 26 May 2011, leslygrcia@... wrote:

> Kay,

! I was also diagnosed about a year and a half ago, and prescribed

methotrexate..which I have stopped taking due to how toxic I've read

it is. I had the same symptoms as you, and had a lot of trouble

walking due to extreme pain in my feet. Be patient!! Physical therapy

helped me very much to get back to walking normally. I do have my bad days but

take indomethacin for the pain and inflammation. I did a lot of research online

to find out why I had this disease. I still get very much confused, and worry

that my kids could develop this same disease. Good luck & god bless you.

>

Liz Kilpatrick

On the banks of the Mighty Mississippi River, Davenport,IA

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

(A)PERSON with big dreams is more powerful than one with all the

facts! *H. Brown,Jr.**************************************

LIFE isn't about waiting for the storm to pass. It's about learning

how to dance in the rain! *Vivian Greene*************************

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

EMAIL: juliette@... WEBSITE: http://members.tripod.com/~LizK

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~