Re: OKD................

[Guest guest]

Hi OKD.

 

I just don't know where to begin.  I feel so awful with everything you are

going through.  I do understand about all the

pills..................................I take so many it makes me cringe each

time. All I can say about my meds is, I am in a medicine induced remission.  I

thank God for that each day.  I too went through hell and high water for about

5 years.  All I know is I take the max. dose for everything I take.  It must

be 20+ pills a day.  Tonight I take my MTX injection which I have skipped for 3

weeks.  Between the broken ankle, the 35 lb cast, I just could not deal with

the MTX because I did not want to be nauseous on top of everything.  At the

time my stomach did not feel well so that is why I skipped it.   Normally my

MTX shot agrees with me.

 

I think you have done the right thing pulling back on your meds for awhile. 

Let your system calm down too.  They are all so harsh and I know how they make

you feel.  I am glad you are getting off the Pred. and I hope you do so

successfully.  I have never been able to get off it as much as I want to.  I

get down to the last pill and boom, my RA comes alive with pain and swelling. 

I will try again soon after this ankle heals etc.  I can handle just one thing

at a time.

 

I am sure all the cold weather you are having is making your body very sore and

stiff.  Have you seen your Rheumy lately?  Does he/she know you are coming off

your meds?

 

You have been through so much, and I tell you, the blood clots scare the s---

out of me.  It must have been so awful for you and being scared on top of all

that is too much to bear.  None of us really know how we will react to any

drugs we take.  It is a crap shoot.

 

I think of you so much, and I truly want you to feel better and have a better

quality of life.  You have had to deal with way too much in your road of RA. 

I pray you will feel better soon, and find some meds. that will help with your

RA, pain and suffering too.  I will keep you in my thoughts and prayers and

pray you will have better days ahead, be pain free, and able to enjoy your life.

RA is one ugly beast.  It rears its ugly head too many times.

 

God Bless you OKD and you can contact me anytime you want.  I will be here for

you.  I am sending you a big hug to wrap around you.  I am so sorry you are

having such a bad time of it.

 

Love and hugs,

 

Barbara

From: OKD <Cofade_2000@...>

Subject: [ ] A Hard Choice, quitting the drugs

Date: Thursday, March 3, 2011, 11:22 AM

 

Hi Group:

I've been fairly sick of late, to rehash a bit: I am convinced the Enbrel has

caused me blood clots in my chest, which caused me to start Coumadin Therapy,

which makes me sick as a dog, so I Quit this week, minimized the drugs, its just

too " mucking fuch " people!!.

I am not ungrateful to Enbrel, thought it was a god-send...but it has a nasty

bite.....maybe it put into enuf of remish for me to continue on. We will see.

I am tapering off of Prednisone (down to 4mgs) and am keeping the Methotrexate

to see how I fare.

I cant look at all these pills anymore folks, I end up taking like 10-15 a day

depending, its crazy, I cant swallow them anymore, I cant tolerate them, I am

tired of vomiting, retching, queasiness, constipation, diarrhea, not being able

to eat my beloved green anything, bleeding. Then the needles....Enuf is enuf.

They are toxic. RA Hurts, flares burn, I do worry about my heart with RA, but

this " alternative " is just as bad.

Conversations like these need to be had, because there HAS to be another way.

Ayurvedic, Alternative Medicines, Gluten-free diet, mild exercise

walking/swimming, mind strenthening exercises for mental fortitude. I know its

different for everyone. I know RA can be crippling too, that is why I am going

to try to keep the Methotrexate and only use Prednisone when needed. I only have

RA for a about 4 years, i went for a long time before I seeked out treatment

too.

I thank God I escaped unscathed from Lymphoma and a heart attack, and I think my

internal organs are having a party now that I am dropping the TOXIC Sludge, I

hope my adrenal glands survived the Prednisone, so far, my bones did before they

became swiss cheese.

OKD

[Guest guest]

Hi OKD........

I have to agree with Barbara. Please think about this long and hard and speak

with your doctor before you stop any and all of your medication. I hate to

admit it, but I too have had that feeling of dumping all those pills once and

for all. But once reality set back in, I realized that this was not the

decision that needed to make. In addition, if you dump all those pills all at

once, " the ugly wolf " will rear its ugly head in so many ways.

We all feel that we take way too many pills and that if we are going to take one

more pill, we are going to scream.

Better you scream than dump the pills. Barbara does have the voice of reason,

believe me.

I hope that these words that we have given to someone that we all care for and

love that you will listen to. Speak to you physician before you dump anything

down the drain. I went thru that period a number of years ago, while the group

was still quite still small and it was who was the voice of reason who

stopped me from dumpping my pills down the drain. Some of these pills can also

be fatal if you stop them abruptly, thus the need to speak to your physician

before you do anything.

I will keep you in my heart and my prayers dear friend. Listen to the words of

people who care about you and who have been in your shoes.

Gentle, tender angel hugs.........

Debs in FL

[ ] A Hard Choice, quitting the drugs

Date: Thursday, March 3, 2011, 11:22 AM

Hi Group:

I've been fairly sick of late, to rehash a bit: I am convinced the Enbrel has

caused me blood clots in my chest, which caused me to start Coumadin Therapy,

which makes me sick as a dog, so I Quit this week, minimized the drugs, its just

too " mucking fuch " people!!.

I am not ungrateful to Enbrel, thought it was a god-send...but it has a nasty

bite.....maybe it put into enuf of remish for me to continue on. We will see.

I am tapering off of Prednisone (down to 4mgs) and am keeping the Methotrexate

to see how I fare.

I cant look at all these pills anymore folks, I end up taking like 10-15 a day

depending, its crazy, I cant swallow them anymore, I cant tolerate them, I am

tired of vomiting, retching, queasiness, constipation, diarrhea, not being able

to eat my beloved green anything, bleeding. Then the needles....Enuf is enuf.

They are toxic. RA Hurts, flares burn, I do worry about my heart with RA, but

this " alternative " is just as bad.

Conversations like these need to be had, because there HAS to be another way.

Ayurvedic, Alternative Medicines, Gluten-free diet, mild exercise

walking/swimming, mind strenthening exercises for mental fortitude. I know its

different for everyone. I know RA can be crippling too, that is why I am going

to try to keep the Methotrexate and only use Prednisone when needed. I only have

RA for a about 4 years, i went for a long time before I seeked out treatment

too.

I thank God I escaped unscathed from Lymphoma and a heart attack, and I think my

internal organs are having a party now that I am dropping the TOXIC Sludge, I

hope my adrenal glands survived the Prednisone, so far, my bones did before they

became swiss cheese.

OKD

[Guest guest]

So grateful for your nice responses, thanks. Deb, I know I cant quit some of

them cold turkey, I am tapering those. I dunno began staring at 8 bottles of

meds, and shots of Enbrel, and I just cant vomit, quease, and god knows whatelse

anymore.

Yeah, those damn blood clots are scary, but i refuse to live in fear too. Yes,

I told my primary care, my Rheumy and the Hematology folks.

I think its best to always try to get off them, they are are individually toxic

in their own ways.

Did you ever watch the commercials for OUR drugs and then at the end, they start

to list all the side effects and fatal consequences of them for like 30

seconds???

Nothing beats a failure, but a try, so I am going to see how i fare. I havent

taken the Enbrel in 2 weeks because I am dealing with another viral infection

anyways, you can cold turkey Enbrel....you cant get off Prednisone without a

taper, you can on Coumadin as long as your clotting factor is ok, they do the

tests to make sure. I am staying on the MTX, but ugh, on MTX DAY, the next day

I am in ugh, but I know I have to keep one of them....

I think DMARDS are good from the agony of RA, until you realize there not, dont

know what else to say....everything comes and goes and nothing stays static, you

just keep moving forward.

I read all our stories, sometimes dont know what to say in response, sometimes

its the luck of the draw, and your own wits that get you thru......sometimes,

its the drugs, but not too many discuss alternatives of lifestyle, dietary,

mental conditioning, exercise, supplements, herbs vitamins, physical therapies,

etc.....

dont want to ramble, jsut want to break the chain a bit and RATTLE (should I say

THROTTLE) that bad boy!!!

Thanks again

OKD