Flare Ups

[Guest guest]

Dear Donna,

Well,being one that has PS as bad as the PA right now...I do understand how you are feeling. Nothing seems to work right now for the PS. I've seen my Derm, but he didn't change anything. I will see him again soon. I was on MTX for three years. I too got sick with the oral, but have not tried the shots. I had one biopsey and that was enough... My liver at the time was fine, but I felt so rotten all the time, I just took myself off it. Now we are looking for something else to try.

We all understand the feelings you are having. I think we all have feelings or have felt the same feelings from time to time. I know I have. You can't give up or give in. We have to stay more positive. It helps to have others to talk to that know how we're feeling. Don't feel bad for telling us, just use it as a tool to make yourself feel better.

Hang in there...Donna from Mich.Donna wrote:

[Guest guest]

Hi Donna, To help relieve the pain of flareups in your hands, I suggest you can

check with your doctor about using Donovex, Halog, and Beta-Val as an

ointment or lotion on the affected areas. I have been using these for about 12

months with gradual improvement. Sincerely, Bill

[ ] FLARE UPS

HI EVERYONE, I WAS ON METH, FOR ABOUT 8 MONTHS BUT IT WAS MAKING ME SO TIRED AND SICK,SO I ASKED TO GET OFF IT BECAUSE I REALLY DIDNT THINK IT WAS WORKING FOR ME. SO THEY STARTED ME ON SORIATANE ABOUT A MONTH AGO. WELL IM FLARING UP SO BAD THAT I HAVE IT ALL OVER MY LEGS AND I HAD ONE GOOD HAND , NOW ITS THERE ALSO, THERE SUCH BIG BLISTERS I FEEL LIKE IM GOING TO GO INSANE!

LAST WEEK ITS WAS GETTING BAD I WAS SO LEAKY THAT I SOAKED MY HANDS IN EBSON SALT IT REALLY SOOTHED THEM I THOUGHT WOW WHY DIDNT I DO THAT BEFOR. WELL AFTER I TOOK MY HANDS OUT , IT WAS LIKE THEY WERE BURNT! I FELT LIKE I WAS GOING TO COLAPSE FROM THE PAIN! MY MOM CALLED ME AND HERD THE PAIN IN MY VOICE AND CAME RIGHT OVER AND WHEN SHE CAME IN WE HUGGED AND CRYED LIKE BABIES.IT WAS AWFUL, I FEEL SO BAD BREAKING DOWN LIKE THAT TO MY MOM. SHE HURTS SO MUCH FOR ME.IM 34 YRS OLD AND ALWAYS TOLD MY MOM I WOULD NEVER PUT HER AWAY IN A HOME I WOULD ALWAYS TAKE CARE OF HER AND WE REALISE THAT ITS GOING TO BE THE OTHER WAY AROUND.MY MOM COMES AND CLEANS MY BATHROOM AND CHANGES MY BEDS AND OTHER HOUSE WORK FOR ME AND IT KILLS ME TO NOT BE ABLE TO DO THIS STUFF. I FEEL LIKE PA HAS ROBBED ME OF MY LIFE! I CANT EVEN DO MY DISHES ANYMORE SO MY HUSBAND DOES THEM. THAT IS NOT EASY FOR ME TO LET HIM (CAUSE IT MAKES ME FEEL LIKE IM NOT DOING MY PART AS A WIFE). IM SORRY FOR CARRYING ON LIKE THIS, MY MAIN REASON WAS TO SAY I THINK THE METH. WAS HELPING I JUST FORGOT HOW BAD I WAS BEFOR I STARTED ON IT.

I GO TO THE DOC, ON MON SO I WILL SEE IF I CAN START IT AGAIN.

I DONT RIGHT IN TO MUCH BUT WHEN I DO I SEEM TO WRITE A BOOK .

I TRY TO KEEP CALM AND QUIET BUT ONCE AND AWHILE I BREAK AND POOR OUT EVERYTHING ON LINE, IM SORRY ABOUT THAT. IM REALLY HAVING TROUBLE COMMING TO TERMS WITH THIS DISEASE BUT READING ALL THESE POSTINGS REALLY HELP ME TO GET THOUGH, CAUSE SOME OF YOU HAVE IT WORST THEM ME AND DEAL WITH IT SO MUCH BETTER ,

IT HELPS ME TO STAY TOGETHER MORE, IF IT WASNT FOR MY SON AND HUSBAND WHO NEED ME I DONT KNOW IF I COULD OF LASTED 7 YEARS OF THIS AWFUL PAIN.WOW I ALMOST FEEL BETTER JUST WRITING ALL THIS IT CLEARS MY MIND AND HEART!

THANK YOU FOR ALL WHO LISTENED TO MY

PATHETIC LIFE.

DONNA L

IN NEW ENGLAND

www.

..com

Please visit our new web page at:http://www.wpunj.edu/icip/paWe are currently discussing new chat times. moderates a chat on arthritis atwww.about.com on Thursday evenings, so check thatout in the meantime! E mail at RA@... for details.

[Guest guest]

Hi Mousie:  When I am flaring, I swell in almost all joints and have stiffness,

and am in terrible pain.  The worst hit are my feet and ankles.  I have never

had sweats or being hot.

 

Wishing you better days ahead.

 

Hugs,

 

Barbara 

From: M A <pcortas1@...>

Subject: [ ] Flare ups

Date: Wednesday, September 23, 2009, 11:37 AM

 

I continue to read people having Flare Ups, what is this? Is this when we get

swelling & stiffness of our joints or is this when we feel our body very hot and

sweating. Please can someone help out?

Mousie in Calif

[Guest guest]

Mousie,

A flare is a temporary exacerbation of a disease.

Not an MD

On Wed, Sep 23, 2009 at 10:37 AM, M A <pcortas1@...> wrote:

> I continue to read people having Flare Ups, what is this? Is this when we get

swelling & stiffness of our joints or is this when we feel our body very hot and

sweating. Please can someone help out?

>

> Mousie in Calif

[Guest guest]

The day before Thanksgiving my back went out. I called my regular doctor's

office and they gave me a steroid pack. That helped me get back on my feet

again. I was feeling good. A week later I went to my regular doc and he said I

looked much better and I was moving better too. I said yep. I feel great. He

asked me how my RA was doing. I told him I have been going downhill since I have

been taking this PQ and it has been 2 months now. He said I should call the R. I

put it off until today. I was making some cookies and I had to use my hands to

mix it. Wow did they hurt. I couldn't even do it that good. I also have been

feeling like crap. I called the R today cause I thought maybe he can do

something. Not sure what he could do but hey why not see. I talked to his nurse.

She called me back and the doc said he was going to give me another steroid

pack. I was so happy. When I took it a few weeks ago I felt so good that I could

run for miles if I could run. Lol. She said I was in a flare up and they gave me

an appointment a week earlier than when I was supposed to go in. She also said

that they think my flare ups might show as how I feel and not as much as pain. I

feel like I have the flu. It feels like I ache all over and I can't keep warm.

Living in Chicago right now my house is set at 78 and I'm still cold. All I want

to do is curl up in a ball and hibernate until I feel better. I will start the

pack tomorrow. Does anyone else feel more like crap than pain at times? I'm

sorry to use the word Crap but that is the only way I can describe it. Oh, I

just found out my mom has RA too. I will be going with her to her doc next

month. I told her she needed to get checked because she had the same symptoms

like me and more but worse. I guess I will have to help her with this too. She

also is going to a cardiologist tomorrow cause she has been having some

irregular heart rates and her feet are so swollen she can't even tie her shoes.

Thanks,

Cheli.

[Guest guest]

Steroids are know to cause problems with some people like lack of sleep,

mania etc. Especially

if you already have mental health issues.

Jolene

In a message dated 12/17/2009 8:35:14 A.M. Eastern Standard Time,

mimi212@... writes:

Cheli - I don't know what it is about the prednisone that turns me into

witch(b)woman. Some people do well with the steroids, others it affects like

that. Granted I don't become homicidal or suicidal, but after several days

of a dose pack and I could rip a head off! LOL My Rheumy has me taking

5-10mg of Prednisone at the first sign of a flare - taking it for 5 days and

then stopping. That's not usually too bad.

Its good to hear that your Rheumy will be adding MTX to the plaquenil,

although I'm surprised - if you had JRA, why are they taking it so slow this

go-round? Not unless they seriously are doubting the original diagnosis -

that seems crazy to do, though. It is possible for RA to go into remission...

Anyway - I don't have insurance at all. I take MTX via injection and its

not very expensive. I have a RX assistance card that helps to offset some of

the cost of the meds and my pharmacist honors WalMart's $4 pricing where

he can for some of the others. I qualified for free Enbrel (praise God!)

Don't let it all overwhelm you. Call your caseworker, report your income

and see where it goes from there - you might qualify for the medically needy

share of cost program. It doesn't help at all for us with the everyday

stuff, but it sure is nice to know we have assistance should God forbid

something serious happen.

Keep us posted. We care.....Doreen

Doreen,

Thank you very much for your reply. It put a smile on my face. It was the

first thing I read this morning. Last night I was trying to put my 2 year

old to sleep and I felt so horrible that I was just about to cry. I was able

to fall asleep before I cracked. Lol. We have to hold her until she falls

asleep and it seemed like forever last night. I told her mommy was sleeping

so now she has to go sleeping too. I think that worked. Lol.

I too sometimes wait until I can't take it anymore then I call the doc. My

doc then tells me next time come in before your back goes out. Lol. This

is the first time I called the R about how I was feeling. I'm glad they

listened. All these years I thought all of this feeling like crap was a side

affect of my JRA that I had when I was younger or just a bad cold that

wouldn't go away. Lol I would tell the doctors all these years I felt like crap

and or I ache all over and they just looked at me like I was crazy. I also

heard no you never had JRA cause you wouldn't be walking today. I'm just so

glad that someone is finally listening to me for once!

How does the steroids make you turn ugly? I have never heard of anyone

getting a bad reaction like that. I think he might want to put me on MTX. He

said if the PQ didn't work he might start me on that. I'm just worried about

the cost of the drug. Next month I won't have insurance. I'm on state

insurance but I make to much now and I need to call them. As soon as I call

them they will shut it off. I was supposed to call weeks ago. Lol. I keep

waiting to call can ya tell?

Thanks again,

Cheli

[Guest guest]

In a message dated 12/17/2009 7:35:14 A.M. Central Standard Time,

mimi212@... writes:

Cheli - I don't know what it is about the prednisone that turns me into

witch(b)woman. Some people do well with the steroids, others it affects like

that. Granted I don't become homicidal or suicidal, but after several days

of a dose pack and I could rip a head off! LOL My Rheumy has me taking

5-10mg of Prednisone at the first sign of a flare - taking it for 5 days and

then stopping. That's not usually too bad. >

I also experienced " roid rage " when I was on the higher dose. My

maintenance dose of 5 mg per day seems ok.

dd

[Guest guest]

Cheli - I don't know what it is about the prednisone that turns me into

witch(b)woman. Some people do well with the steroids, others it affects like

that. Granted I don't become homicidal or suicidal, but after several days of a

dose pack and I could rip a head off! LOL My Rheumy has me taking 5-10mg of

Prednisone at the first sign of a flare - taking it for 5 days and then

stopping. That's not usually too bad.

Its good to hear that your Rheumy will be adding MTX to the plaquenil, although

I'm surprised - if you had JRA, why are they taking it so slow this go-round?

Not unless they seriously are doubting the original diagnosis - that seems crazy

to do, though. It is possible for RA to go into remission...

Anyway - I don't have insurance at all. I take MTX via injection and its not

very expensive. I have a RX assistance card that helps to offset some of the

cost of the meds and my pharmacist honors WalMart's $4 pricing where he can for

some of the others. I qualified for free Enbrel (praise God!)

Don't let it all overwhelm you. Call your caseworker, report your income and see

where it goes from there - you might qualify for the medically needy share of

cost program. It doesn't help at all for us with the everyday stuff, but it sure

is nice to know we have assistance should God forbid something serious happen.

Keep us posted. We care.....Doreen

Doreen,

Thank you very much for your reply. It put a smile on my face. It was the first

thing I read this morning. Last night I was trying to put my 2 year old to sleep

and I felt so horrible that I was just about to cry. I was able to fall asleep

before I cracked. Lol. We have to hold her until she falls asleep and it seemed

like forever last night. I told her mommy was sleeping so now she has to go

sleeping too. I think that worked. Lol.

I too sometimes wait until I can't take it anymore then I call the doc. My doc

then tells me next time come in before your back goes out. Lol. This is the

first time I called the R about how I was feeling. I'm glad they listened. All

these years I thought all of this feeling like crap was a side affect of my JRA

that I had when I was younger or just a bad cold that wouldn't go away. Lol I

would tell the doctors all these years I felt like crap and or I ache all over

and they just looked at me like I was crazy. I also heard no you never had JRA

cause you wouldn't be walking today. I'm just so glad that someone is finally

listening to me for once!

How does the steroids make you turn ugly? I have never heard of anyone getting

a bad reaction like that. I think he might want to put me on MTX. He said if the

PQ didn't work he might start me on that. I'm just worried about the cost of the

drug. Next month I won't have insurance. I'm on state insurance but I make to

much now and I need to call them. As soon as I call them they will shut it off.

I was supposed to call weeks ago. Lol. I keep waiting to call can ya tell?

Thanks again,

Cheli

[Guest guest]

,

Not everyone has side effects. I have been on Enbrel for over 3

months now and no sides at all.

I'd sure ask for the handicapped permit, it makes life SO much easier

with swollen or sore feet.Today's the first day I've felt no qualm

whatsoever about parking in the 'regular' spots and walking into the

store...since May! That's what it's there for, use it if it helps.

Sue in Oregon

[Guest guest]

Hi ,

I've had PA for many years - and I'm currently on methotrexate/Humira for my

PA. The side effects for both have been minimal. Just minor redness or

soreness at the site of the Humira shot for a day; MTX w/folic acid side

effects are pretty non-existent. Maybe some minor nausea the day after I

take it. But that's it.

Overall, it's helped me dramatically - and my case is pretty severe (I'm on

Fentanyl for pain because of the long-term, extensive pain. This is NOT an

option for most people but I had a flare that put me in the hospital - and

was logical choice for me since I could tolerate morphine; Fentanyl is 81x

stronger than morphine).

Anyway, I can definitely tell when I'm on Humira/MTX. Makes a huge

difference. I did try Enbrel at first (instead of Humira). But it didn't

seem to work as well for me. They said some people sometimes do better on

one than another. So you'll probably try one to see if it works (although

it will take a few months to really kick in). Don't expect miracles

overnight.

The key is to just be aware that you might be more open to other illness

when on a biologic because your immune system is essentially " shut off " so

that the PA shuts off as well. I stay away from anyone who is obviously

sick. In my case, I was in the midst of a bad flare that was triggered by a

surgery. My immune system went into overdrive. The biologics and MTX slow

work on the immune system - reducing or eliminating the flare. Now that my

flare is subsiding, I feel better. Not perfect. But so much better!!

It's definitely worth it in my opinion. I doubt you'll need a handicapped

sticker unless you are in a pretty severe state. But that's a call only you

and your doctor can make. I had one for three months after my surgery and

horrible flare. But haven't needed one since.

Good luck!

Patty

[Guest guest]

Right on Sue and the " Regular " parking spots... don't give up, don't give up,

don't give up!!

 

[Guest guest]

The thing is just because your pain has not been bad doesn't mean you don't need

the biologics. The biologics not only help with the pain but slow down the

progression of the disease on your joints. That's where the real issue lies is

in the destruction this can cause to your joints.

Also don't be embarrassed about needing to use a handicap space. I've had a

placard since 92 when I was in a car accident and use it when I need to. If I'm

having a good day and walking isn't a problem I take another space but there are

days where that just isn't an option sometimes. I also have gotten in the habit

of using the electric carts at Wal-Mart when needed. Sometimes I get funny

looks because I'm not that old but I figure it's my life and I'm the only one I

have to answer to so let them think what they want. As long as I can get around

and do the things I need to that's all that matters regardless of how I get it

done.

Celeste