Re: Feeling Discouraged and Sad...

[Guest guest]

Sam,

I am so sorry to hear that Humira is not working for you. I absolutely understand your fear and frustration. It can be very difficult to stay positive and not lose faith that you can feel better. I have gone through extensive periods of depression that I didn't associate with my illness until years later (the fact that my rheumatologist never warned me or asked me about this is a separate issue). I can simply offer that I pray that you will find relief and that you will be well enough to enjoy your life, and particularly, your daughter.

People who don't deal with chronice pain really have no idea how much energy it takes to stay positive and not give in. It is hard to be in your prime and feel ancient, and then wonder what ancient will feel like. When I have a set back I usually cry a little(or a lot), take a nap, and then list my gifts/skills/attributes/blessings and think God couldn't have meant to waste them and there must be something better in the future.

I wish you wellness.

Andie

Sam Rocci <samrocci@...> wrote:

Hello everyone,Went to the rheumatologist today. As he puts it "Old Arthur is having a good time in me and doesn't want to give up". The Humira is not working. I am for the first time today having some really negative thoughts. What if this is as good as I am ever going feel again? I feel cruddy! The next step is to take two more doses of the Humira and if does not kick in then switch to Remicade. Remicade scares me! I am unfamiliar with the administration process. At least when I do my own shots at home I can scream and sing and be generally weird in the privacy of my own home. What if the remicade doesn't work, I feel like I am getting towards the end of the options at this point. I looked at my baby girl today and wondered if I hadn't had her if this thing would have stayed in remission. That's NOT an okay thing to think, I love

her sooo much and I have spent the first two years of her life in pain. This just stinks! I have been trying to lose weight on weight watchers since the middle of July and have gone down a whole whopping 5 pounds! My hormones are completely out of whack... I'm almost 37 and I feel like I am 87 instead! I have decided to stop prednisone for awhile. I've been on it for 18 months and I feel this yucky, what's the point in taking it right? My doc told me to go down to 5 mg for a week and then 5 every other day for a week and then stop. Maybe this will help with the delightful puffy face and weight gain... Thanks for letting me grump and vent... I appreciate the kind ear.Sam

[Guest guest]

I'm sorry you're feeling so sad and hurting so much. A biologic can take quite a while to become effective so please don't give up too soon. Also some people take Humira every week instead of every two weeks. You might ask about that.

I'm on Remicade and have been for over 2 years. We stated at 3 mg/kg and slowly increased to 6 mg/kg and have stayed there. It finally kicked in when we made the last increase and I was able to get off Prednisone at that time. When I started Remicade I couldn't get below 20 mg Prednisone so it was great to get off and stay off. The infusion is much like a blood draw but the needle stays in place for a couple of hours. There may be other people there at the same time you can talk to or you can read. I work crossword puzzles and sometimes I nap. It's not a great big deal as far as I'm concerned.

You are planning a very fast taper of Prednisone and that can cause severe problems. If you have strange feelings make sure you let your doctor know. Coming off Prednisone is not easy and often people come down one mg at a time, and maybe only once a month. I hope you can come off faster than that but don't take chances if you have troubles. God bless.

----- Original Message -----

From: Sam Rocci

Rheumatoid Arthritis

Sent: Tuesday, September 13, 2005 2:59 PM

Subject: Feeling Discouraged and Sad...

Hello everyone,Went to the rheumatologist today. As he puts it "Old Arthur is having a good time in me and doesn't want to give up". The Humira is not working. I am for the first time today having some really negative thoughts. What if this is as good as I am ever going feel again? I feel cruddy! The next step is to take two more doses of the Humira and if does not kick in then switch to Remicade. Remicade scares me! I am unfamiliar with the administration process. At least when I do my own shots at home I can scream and sing and be generally weird in the privacy of my own home. What if the remicade doesn't work, I feel like I am getting towards the end of the options at this point. I looked at my baby girl today and wondered if I hadn't had her if this thing would have stayed in remission. That's NOT an okay thing to think, I love her sooo much and I have spent the first two years of her life in pain. This just stinks! I have been trying to lose weight on weight watchers since the middle of July and have gone down a whole whopping 5 pounds! My hormones are completely out of whack... I'm almost 37 and I feel like I am 87 instead! I have decided to stop prednisone for awhile. I've been on it for 18 months and I feel this yucky, what's the point in taking it right? My doc told me to go down to 5 mg for a week and then 5 every other day for a week and then stop. Maybe this will help with the delightful puffy face and weight gain... Thanks for letting me grump and vent... I appreciate the kind ear.Sam

[Guest guest]

Oh Sam I feel for you. It's so frustrating doing everything that you think

you should do and not get the results you expect. I was the same but I

continued looking and found what worked for me. Please don't give up hope,

you will find a way as long as you keep trying.

Dorey

www.LivingWithRheumatoidArthritis.com

----- Original Message -----

From: " Sam Rocci " <samrocci@...>

<Rheumatoid Arthritis >

Sent: Tuesday, September 13, 2005 2:59 PM

Subject: Feeling Discouraged and Sad...

> Hello everyone,

> Went to the rheumatologist today. As he puts it " Old Arthur is having

> a good time in me and doesn't want to give up " . The Humira is not

> working. I am for the first time today having some really negative

> thoughts. What if this is as good as I am ever going feel again? I

> feel cruddy! The next step is to take two more doses of the Humira

> and if does not kick in then switch to Remicade. Remicade scares me!

> I am unfamiliar with the administration process. At least when I do

> my own shots at home I can scream and sing and be generally weird in

> the privacy of my own home. What if the remicade doesn't work, I feel

> like I am getting towards the end of the options at this point. I

> looked at my baby girl today and wondered if I hadn't had her if this

> thing would have stayed in remission. That's NOT an okay thing to

> think, I love her sooo much and I have spent the first two years of

> her life in pain. This just stinks! I have been trying to lose weight

> on weight watchers since the middle of July and have gone down a

> whole whopping 5 pounds! My hormones are completely out of whack...

> I'm almost 37 and I feel like I am 87 instead! I have decided to stop

> prednisone for awhile. I've been on it for 18 months and I feel this

> yucky, what's the point in taking it right? My doc told me to go down

> to 5 mg for a week and then 5 every other day for a week and then

> stop. Maybe this will help with the delightful puffy face and weight

> gain... Thanks for letting me grump and vent... I appreciate the kind

> ear.

> Sam

>

>

>

>

>

[Guest guest]

Sam Rocci <samrocci@...> wrote:

Hello everyone,"Old Arthur is having a good time in me and doesn't want to give up". The Humira is not working. I am for the first time today having some really negative thoughts. What if this is as good as I am ever going feel again? I feel cruddy!

Hello Sam ,

Well this is an all to common feeling for me to and i'm sure others to I would think with this diease its really a hard one to deal with even when your meds work you have some painful flairs as some of the sayed it helps to occupie your mind with something else and that baby would be a great way of doing that ! but as bad as it does hurt one day youll wake up and it will be some better ! maybe not all gone but every time i get to this point and it last so miserable long it will one day ease up and give me a little peace for a while , and thr remicaid isnt bad at all if you go that routh either but i would try yours some more and give it a chance to like said it sometimes takes a while to start working .

john

for Good Click here to donate to the Hurricane Katrina relief effort.

[Guest guest]

Sam, I hope your feeling maybe a little better. I just wih I could

come up with encouraging words and all I can think of is hang in

there and think of your beautiful baby girl and remember those that

love you and support you. Take care and I hope to hear from you or

read a posting from you soon.

Susie

> Oh Sam I feel for you. It's so frustrating doing everything that

you think

> you should do and not get the results you expect. I was the

same but I

> continued looking and found what worked for me. Please don't give

up hope,

> you will find a way as long as you keep trying.

>

> Dorey

> www.LivingWithRheumatoidArthritis.com

> ----- Original Message -----

> From: " Sam Rocci " <samrocci@s...>

> <Rheumatoid Arthritis >

> Sent: Tuesday, September 13, 2005 2:59 PM

> Subject: Feeling Discouraged and Sad...

>

>

> > Hello everyone,

> > Went to the rheumatologist today. As he puts it " Old Arthur is

having

> > a good time in me and doesn't want to give up " . The Humira is not

> > working. I am for the first time today having some really

negative

> > thoughts. What if this is as good as I am ever going feel again?

I

> > feel cruddy! The next step is to take two more doses of the

Humira

> > and if does not kick in then switch to Remicade. Remicade scares

me!

> > I am unfamiliar with the administration process. At least when I

do

> > my own shots at home I can scream and sing and be generally

weird in

> > the privacy of my own home. What if the remicade doesn't work, I

feel

> > like I am getting towards the end of the options at this point. I

> > looked at my baby girl today and wondered if I hadn't had her if

this

> > thing would have stayed in remission. That's NOT an okay thing to

> > think, I love her sooo much and I have spent the first two years

of

> > her life in pain. This just stinks! I have been trying to lose

weight

> > on weight watchers since the middle of July and have gone down a

> > whole whopping 5 pounds! My hormones are completely out of

whack...

> > I'm almost 37 and I feel like I am 87 instead! I have decided to

stop

> > prednisone for awhile. I've been on it for 18 months and I feel

this

> > yucky, what's the point in taking it right? My doc told me to go

down

> > to 5 mg for a week and then 5 every other day for a week and then

> > stop. Maybe this will help with the delightful puffy face and

weight

> > gain... Thanks for letting me grump and vent... I appreciate the

kind

> > ear.

> > Sam

> >

> >

> >

> >

> >