Re: Discontinuing MTX!

[Guest guest]

Brightest Blessings, Dalene

Wow, sorry about the hair loss... I have never experienced any of that stuff...

So far, my inflamation counts have fallen and it seems to be helping me...

Although, like you my eyes have drastically seemed to get worse... I have to go

to see an eye doc soon as its time for me to get them checked cause of my

diabetes... I hope its not from the MTX drug...

Love and Peace Always

Shaun and Barb

[Guest guest]

It's not vain to miss your beautiful hair. It would be abnormal not to.

I guess a picture is worth a 1000 words....or a thousand strands of hair

is worth a thousand words I should say. That was brilliant of you to

bring your hair in. You should be an attorney! lol. It's great that you

have a doc who is " up " on things. We will all benifit from that....keep

on sharing what you learn! Let us know if your vision clears up and that

mane grows back as you wish. I hope it does...I never heard of steroids

making you want to clean house....hmmm....I might need a shot!

Nah...I'd probably poke my eye out with the vacum cleaner. -Betz

>

> Hi all,

>

> I went for my Remicade infusion yesterday. I took my shower before I

> went and saved all those handfuls of hair that came out just using a

> wide toothed pick to comb my hair out afterwards to show my rhuemy.

> She looked at the baggie full of hair and the fact I was haing to

> wear my bifocals just to see anything and informed me she was taking

> me off the MTX. She had gone to a conference a couple of weeks ago

> about MTX and treating the PA patient. She said some studies are

> starting to show MTX with biologics may not be doing any good, just

> causing the patient stress from the side effects. So I told her I was

> willing to be her guenea pig in helping her prove or disprove this

> theory by willingly stopping the MTX. She just laughed and said she

> was going to stop it whether I wanted to or not.

>

> I didn't realize it could be the reason my vision was getting so bad.

> I started taking it about four months after I got my eyes examined

> and put into bifocals about this time last year. In the last three

> months or so not even my bifocals were able to help me see clearly. I

> was beginning to think I was going to have to give up my computer and

> soon driving.

>

> She says the side effects should start to clear up now. My hair

> should start growing back too. That was what was really bothering me

> about the MTX. I have hair almost to my waist, all one length. Or I

> should say used to all one length and smooth and shiny, although

> curly. My ponytail used to be so thick I couldn't wrap my hand around

> it and have my fingers touch. Now it is dull, brittle, falling out by

> the handful and I can wrap my thumb and forefinger completely around

> my ponytail and overlap them. I know it is silly to be so attached to

> a bunch of dead cells, but I loved my hair! So I can't wait for it to

> start being healthy again.

>

> I also got in 'trouble' for not calling when this last flare started

> up about ten days ago. She told me if I get another flare like that

> to call and they will give me my infusion earlier to abate it. I

> learned something new as I didn't think that was a possibility. And I

> got a steroid shot for all the swelling and pain I was in. Now the

> kitchen is clean, got shelf paper in one cabinet I had been telling

> myself for a year needed it, and the fridge cleaned out and washed

> out. Gotta love that cleaning urge steroids give ya! LOL

>

> Brightest Blessings,

> Dalene

>

[Guest guest]

In a message dated 8/2/2006 5:12:16 A.M. Pacific Daylight Time,

voodoo_witchy_woman@... writes:

I also got in 'trouble' for not calling when this last flare started

up about ten days ago. She told me if I get another flare like that

to call and they will give me my infusion earlier to abate it.

hi Dalene...my rheumy's office told me last time that Remicade only stays in

the body for 28 days, but FDA and insurance have only approved it for use

every 6 weeks to keep the cost similar to Enbrel and Humira...so no big surprise

that many of us flare immediately before our scheduled infusion! They can

sometimes adjust dosage to help with those who can't make it 6 weeks (Crohn's

disease has a dosage of Remicade four times higher than the typical PA dose,

so they know it won't hurt us!)