Re: in a bad flare (was question on pain)

[Guest guest]

Hi .

 

I was so sorry to read that you are having a very painful flare.  I hope I can

give you some information to help you.

 

First, what RA meds. are you taking?  I started on MTX (Methotrexate),

Prednisone, then she added Sulfasalazine, then Placquenil.  When I was flaring

badly, my Rheumy gave me a Prednisone shot, then increased my doses and only

reduced them when my flare was much better.  I also have my blood tested every

2-3 months so she can see how my RA is, how much flaring is going on, and my

liver functions. I have had RA for almost 7 years now and I am 71.

 

For the past 2 years I have been in a medicine induced remission.  I have no RA

pain at all.  Like you, I suffered so much with my feet as they were struck the

worst with RA.  To tell you the truth, I could hardly bear the pain of them. 

There were many, many days that I could not stand on them, let alone walk on

them.  I never ever thought I would see the day that my feet were pain free. 

I also was tested for Neuropathy in my feet, and yes I had it.  My foot surgeon

tested my blood and I was low in vitamin B 12.  So he started me on the B12 and

also my Rheumy put me on Lyrica, and I have no more foot pain.  Everyone here

knows how much I suffered with my feet, and now they are pain free.

 

Everyone here is trying to find their " Cocktail " of RA meds. that work for

them.  It does take time to find what works and agree's with us.  It took me 5

years!  But my life is good now and I don't feel like I have RA.  I have

learned over the years what I can do and what I can't do.  I have learned to do

some things differently, and still get things done.  I do rest a lot, and lie

down each afternoon as my Rheumy insisted this.  I am very thankful for having

my life back, as I thought it was over when I found out what I had.  I moved

here to Florida from Cape Cod, as I could not tolerate the weather in N.E.

anymore.  I was almost in a wheelchair before I moved here.  I noticed the

difference the first time I came to Florida.

 

I hope your Rheumy is a good one, and helps you to get out of your pain.  My

Rheumy added new meds. slowly to see how my system would be.  After awhile, she

would add another RA med. and see how that went.  I did have to see my eye dr.

before she started me on Placquenil.

My eyes are fine and I have them checked each year.  A great Rheumy listens to

you, does not rush your appointment, gives you RX for your pain meds., and

treats your RA agressively.  Your Rheumy should also have your blood tested

every 2-3 months to make sure how you are doing, and check your liver

functions.  Plus, explains about each med. you take, how you take it and

when.  Also, if you have any issues or side effects with  your meds, to call

her/him right away.  Your Rheumy should also call you back within a reasonable

length of time after you called.  My Rheumy is kind, caring, smart, and takes

such good care of me.  I truly love her and am very thankful she is my dr.

 

I hope you call your Rheumy and tell him the Prednisone is not doing much for

you and your pain.  He might want to change the dose you are on.  Never feel

like you are bothering your Dr. when you call.  It is very important that he

knows you are still suffering etc.

 

I pray you will get some relief soon.  I know how bad the RA pain is, as

everyone here does too.

I wish you better, pain free days ahead.

 

Hugs,

 

Barbara

 

[Guest guest]

,

I'm pretty new at this RA game, but the very first day I took my steroid pills

(2) I felt better within a few hours!  They were prednisone, and right now I'm

taking 2 a day,but will be tapering off eventually.  Hope this helps

Amy

________________________________

From: Terzo <sarah5775@...>

Sent: Fri, March 18, 2011 8:35:06 PM

Subject: [ ] in a bad flare (was question on pain)

 

well, I went to my rheumatologist. He finally understands that my pain has

been very bad. He told me that he had not taken an actual blood test for

sed rate or anything like that since last May, when I first came in.

Apparently, the blood tests he's been taking every month were just to check

liver function and make sure the medicines I'm taking were not damaging

anything. He gave me a steroid packet -- I was supposed to take six pills

the day before yesterday, five yesterday, four today and then on down. This

is the third day I had taken them. So far, I have not experienced any

relief. He seems to think that the steroid pills will do a great deal, but

I haven't noticed any change whatsoever. I'm still in a great deal of pain.

I'm taking three hydrocodone every day it doesn't seem to be addressing the

pain at all. Actually, it may be true that the pain in my hands is slightly

better. However, the pain in my feet is still very bad I'm having great

trouble walking. I'm writing this with my Dragon NaturallySpeaking

software. It allows me to speak into a microphone and it types for me.

I've also been very tired and I spent most of the day sleeping, which means

I'll probably be up pretty late tonight. Anyway, I was wondering if anyone

has any idea how long it usually takes to steroid pills to work. And also

any advice on how to get through a really bad flare. I know a lot of people

out there have probably had them at one time or another. I'm still hoping

that the increase in medicine he gave me will help at some point -- he

increased my (can't remember what it's called but it's for malaria )

medicine I'm also taking more Arava . Thanks a lot for the feedback you've

given me so far.

[Guest guest]

, I am so sorry that you are in such pain. I have had RA for almost 15

years now and I go up and down. I have had numerous RA doctors as they keep

stop taking my insurance. But I have a good one right now!

I have never had any good results from steroids - except my appetite increases

and I gained weight that I couldn't get off.

Right now I am on MTX and Enbrel - I give myself a shot of Enbrel once a week -

and it helps so much. I find that when I am in a bad flare up as I was for the

last couple weeks that the best thing I can do is stay warm - I keep the house

warmer then normal during these times and I sit with 2 electric throws - one

underneath me and one above me.

For my feet, I always have a pair of socks near me that I put on - I use the

diabetic type socks - they give me just a little support and it really seems to

help - I was sent to a neurologist and a podiatrist and was diagnosed with early

onset stress fractures... nothing they did helped me till I found the diabetic

socks and for some strange reason they work.

I would advise trying to rid yourself of diet drinks if you drink too many like

I do - it is my last really bad vice - gave up all the rest and this one is my

hardest to kick - but when I am drinking just water I find that I do much

better.

I hope that you find relief soon -

Oh one other thing that my Doctor did right after I started seeing him was give

me a massive dose of Vitamin D to take for a month - 10,000 IU per week - so now

I have added Vitamin D to my regimen of vitamins.

God bless,

Thea

[Guest guest]

things have really been hard. The steroids didn't help the pain very much,

if at all. I remember reading somewhere that if you don't respond to

treatment for RA within the first year, you won't respond at all -- or least

are less likely to ever respond at all. Is that true? What I really want

is for someone tell me that this gets better. I can imagine living another

40 years like this -- Has anyone ever been in a really bad flare like this

and recovered -- I'm trying to tell myself it just takes a while to find the

right medication -- I've only been under treatment for a year and are still

medications I haven't tried. Is there any possibility of this ever getting

better? does this disease really go into remission -- even if you had it

bad for year? I'm just waiting for this pain to lessen. I can barely walk

and my hands hurt very much. Like I said, I can imagine living another 40

years like this, Has anyone been in a bad flareup and then recovered and

gotten better? How long do these flares usually last?are they a regular

part of RA and do they come and go? I decided to stop drinking diet soda as

much as possible, because my sister said she read something that it

aggravates and autoimmune disorders. Has anyone heard that? I'm also going

to start taking a multivitamin -- are there any other supplements that work?

I heard someone mention vitamin D. Surely there must be something I can

do.

Thank you again for all your support

PS I type this with my Dragon NaturallySpeaking software -- it's a real

godsend and I recommend it to everyone

On Sat, Mar 19, 2011 at 8:50 PM, althea foster <altheafoster@...> wrote:

>

>

> , I am so sorry that you are in such pain. I have had RA for almost 15

> years now and I go up and down. I have had numerous RA doctors as they keep

> stop taking my insurance. But I have a good one right now!

>

> I have never had any good results from steroids - except my appetite

> increases and I gained weight that I couldn't get off.

>

> Right now I am on MTX and Enbrel - I give myself a shot of Enbrel once a

> week - and it helps so much. I find that when I am in a bad flare up as I

> was for the last couple weeks that the best thing I can do is stay warm - I

> keep the house warmer then normal during these times and I sit with 2

> electric throws - one underneath me and one above me.

>

> For my feet, I always have a pair of socks near me that I put on - I use

> the diabetic type socks - they give me just a little support and it really

> seems to help - I was sent to a neurologist and a podiatrist and was

> diagnosed with early onset stress fractures... nothing they did helped me

> till I found the diabetic socks and for some strange reason they work.

>

> I would advise trying to rid yourself of diet drinks if you drink too many

> like I do - it is my last really bad vice - gave up all the rest and this

> one is my hardest to kick - but when I am drinking just water I find that I

> do much better.

>

> I hope that you find relief soon -

> Oh one other thing that my Doctor did right after I started seeing him was

> give me a massive dose of Vitamin D to take for a month - 10,000 IU per week

> - so now I have added Vitamin D to my regimen of vitamins.

> God bless,

> Thea

>

>

>

[Guest guest]

It's not true in my case. The first approx 5 years were terrible, they went from

uncomfortable w a great deal of fatigue what I calld the crab walk. There were

times that my entire body would be hunched over walking my hands like claws etc.

I would walk down the hall at work and be running into the walls. I had bouts

when I was in bed for  months on end. I was in a relationship and it ended do

to

one reason of the person thinking I was going to die. 8 yrs down the drain. I

ended up w emotional problems from the 5 yrs of steroids w the plaquenyl, and

ended up on disability. I lost the home I had purchased, etc etc. I pretty much

gave up on any type of enjoyment in life, AA saved my life by giving me a

connection to people and a purpose.

 

After I was put on ultram skelaxin and mtx my life started to turn around. I

rarely had the crab walk, not working helped w not having as intense of flairs

also. I learned to do what I could and not worry about it. I met interesting

people at Coffee Shops since I wasn't working. Most were college students who

were home during different hours of the day.  It was fun, they were full of

life, enjoyed me, needed someone to talk to etc ~ a purpose again, and they were

intelligent and interesting.

 

I've had some rough periods since I switched to mtx but in a different way than

before and in no way as bad. Now if I take steroids they generally help. Prior

to this they really didn't and I ended sufferrring from taking them. For me, the

steroids could not help until I was on a base med that did most of the work, the

mtx. As I have said before, however, that the ultram and skelaxin play a big

role in being able to participate in life. W/O the pain meds I feel how fatigued

my body is and start to contort into crabby ways lol. At som point I added DHEA

which gave me excess energy and started a nightlife I never experienced before.

I was dancing on the boxes at Clubs lol, w my gay male friends. It was like a

life long holiday. Of course I wasn't always full of vim and vigor or I would

havae gone back to work. I also will probably always have bipolar disorder as a

result of the steroids too. I've thought of asking to go up a step on my meds to

injections of something but am afraid too, my dr hasn't uggested it and the more

I read the less I want to. I have problems w healing, probably from the mtx, and

all of the injectable meds seem to have severe side affects from infections.

 

I now also have some side affects from the DHEA also, but so far the good

outweighs the bad. A plstic surgeon I went to was amazed at how muscular my body

was, I'm sure it's also a side affct of the DHEA. I also added 2 multi vitamins

a day this past year, vitamin  D and a Bconplex, I take 3 of them a day. Since

I

added the B complex I've ben abl to keep up w my housework and do fairly well

exercise etc, I even sing around the house most days, unless I am not doing

well. I'm able to wear heels most of the time even now, I have to really check

them out when I purchase them however, to make sure they fit appropriately and

don't cause too much strain on my arches etc, otheerwise it starts a flair up.

It's quite frightening to be out walking home and suddenly not be able to walk.

I've have some times where I had to put my leg in front of me and shake it so my

leg being crooked from the instant flair could land squarely enough for me to

make it home. All the way home, shake gingerly side step shadke gingerly side

step, I must be a sight to behold when it happens lol. I'm usually known for

" my

walk " bing secy, I don't think they'd say so on those days, smiiile.

 

I wanted to go to collge but that was too much for me, and BVR strongly

suggested that I never go off of disability due to the variety of dx I have. I

was told that onc you go back to work it's difficult to go on disability again.

I've had a lot of problems w swollen lymph nodes, sometimes as big as a

tangerine or biggr, but since I started taking courses of prednisone for them

I've done a lot better.

 

I could go on but I won't bore you any further. Just wanted to say I don't agree

w the statement of never getting better etc if it doesn't work initially, I'm

living proof that it can. Best wishes, hang in there.

 

ladeyangll

[Guest guest]

:

I find it interesting that quitting diet soda helped so much. Anybody else try

this? I drink a few diet drinks a day; they are kinda of my one little treat.

I would trade the treat for less pain. Thanks for sharing that.

Theresa

>

> well, I went to my rheumatologist. He finally understands that my pain has

> been very bad. He told me that he had not taken an actual blood test for

> sed rate or anything like that since last May, when I first came in.

> Apparently, the blood tests he's been taking every month were just to check

> liver function and make sure the medicines I'm taking were not damaging

> anything. He gave me a steroid packet -- I was supposed to take six pills

> the day before yesterday, five yesterday, four today and then on down. This

> is the third day I had taken them. So far, I have not experienced any

> relief. He seems to think that the steroid pills will do a great deal, but

> I haven't noticed any change whatsoever. I'm still in a great deal of pain.

> I'm taking three hydrocodone every day it doesn't seem to be addressing the

> pain at all. Actually, it may be true that the pain in my hands is slightly

> better. However, the pain in my feet is still very bad I'm having great

> trouble walking. I'm writing this with my Dragon NaturallySpeaking

> software. It allows me to speak into a microphone and it types for me.

> I've also been very tired and I spent most of the day sleeping, which means

> I'll probably be up pretty late tonight. Anyway, I was wondering if anyone

> has any idea how long it usually takes to steroid pills to work. And also

> any advice on how to get through a really bad flare. I know a lot of people

> out there have probably had them at one time or another. I'm still hoping

> that the increase in medicine he gave me will help at some point -- he

> increased my (can't remember what it's called but it's for malaria )

> medicine I'm also taking more Arava . Thanks a lot for the feedback you've

> given me so far.

>

>

>

>

>

[Guest guest]

ladey,

as i read your post, i couldn't believe it !!! someone else that has

the same symtoms that i do, with thewalking.... i'll be walking, then

all at once i just can't go anymore. by then i'm hurting so bad, i'm

crying. i didn't know it hit other people the same way.....i take pain

meds, sit down for awhile, then i can go again. but, never very

far....lol..... i do crawl around my house, like you do. i look at

myself in the mirror and i'm this old gray headed , humped over woman,

who used to stand so tall and straight..... arthritis hurts, but, i

think this DDD i have is the most painful and the most crippling.thats

what is putting me in the wheel chair.

hagd, everyone,

Betty, in Alabama

[Guest guest]

I never, ever drink diet drinks or eat sugar-free food and my Rheumatoid

Arthritis flares continue to wax and wane.  It's so puzzling.  It's worth it

to

try and see if eliminating diet coke helps.  Can't hurt.

Jody

Schaumburg, IL 

________________________________

From: Theresa Croteau <tcroteau@...>

Sent: Tue, March 22, 2011 10:38:00 AM

Subject: [ ] Re: in a bad flare (was question on pain)

 

:

I find it interesting that quitting diet soda helped so much. Anybody else try

this? I drink a few diet drinks a day; they are kinda of my one little treat. I

would trade the treat for less pain. Thanks for sharing that.

Theresa

>

> well, I went to my rheumatologist. He finally understands that my pain has

> been very bad. He told me that he had not taken an actual blood test for

> sed rate or anything like that since last May, when I first came in.

> Apparently, the blood tests he's been taking every month were just to check

> liver function and make sure the medicines I'm taking were not damaging

> anything. He gave me a steroid packet -- I was supposed to take six pills

> the day before yesterday, five yesterday, four today and then on down. This

> is the third day I had taken them. So far, I have not experienced any

> relief. He seems to think that the steroid pills will do a great deal, but

> I haven't noticed any change whatsoever. I'm still in a great deal of pain.

> I'm taking three hydrocodone every day it doesn't seem to be addressing the

> pain at all. Actually, it may be true that the pain in my hands is slightly

> better. However, the pain in my feet is still very bad I'm having great

> trouble walking. I'm writing this with my Dragon NaturallySpeaking

> software. It allows me to speak into a microphone and it types for me.

> I've also been very tired and I spent most of the day sleeping, which means

> I'll probably be up pretty late tonight. Anyway, I was wondering if anyone

> has any idea how long it usually takes to steroid pills to work. And also

> any advice on how to get through a really bad flare. I know a lot of people

> out there have probably had them at one time or another. I'm still hoping

> that the increase in medicine he gave me will help at some point -- he

> increased my (can't remember what it's called but it's for malaria )

> medicine I'm also taking more Arava . Thanks a lot for the feedback you've

> given me so far.

>

>

>

>

>

[Guest guest]

Wow, you are not alone. had a gathering in my house, must have been about 20

people, it was really nice. But of course, I had to shop, cook, clean, and in

the middle of the gathering, it was about midnight, I politely excused myself,

because I siply could not stand anymore, my legs were BURNING on fire, I overdid

it. Of course, since my immune system is shot, I added some asthma to the mix,

so there i was coughing, hacking and legs burning.

Well, I simply disappeared from the party for a few hours and went into my room,

left my hubby and fam to deal with everyone. Resting was worse for the first

hour as laying down, immobile doesnt help the burning feeling, but after the

pain pill and a few hours sleep, the burning stopped. Everyone had gone home,

but they know me by now, I simply slip out and go lay down.

I get these incredible bursts of energy once in a while and I think I can go

back to my furious errand running, cleaning, etc and I end up overdoing it.

Plus, I end up dropping things, my grip is not what it used to be.

I should have known when my hands began cramping furiously that I overdid it. I

tried to go past that, running warm water on them, but then my body starting the

burn......

OKD....ok, but learning not to overdue it, even when you feel good.

[Guest guest]

Hi again OKD.

 

Yes, that is what I used to do, over due everything and then suffer in bed for 3

or 4 days.  I told everyone here learning to pace myself was hard for me to do,

but I finally learned the hard way.

I used to do everything all the time and go, go, go.  Well, RA changed that for

me.  Why do we have to learn things the hard way.

 

I am glad you could slip away from your party and go lie down.  Wonderful that

your family and friends understand why you have to do that.  You have taken

yourself past the point of no return, and that beats your body badly.  I hope

from now on, you pace yourself and you will feel so much better when you do.  I

am sorry you are having trouble and pain in your hands.  That must be terrible

and frustrating for you.  I do know what you are going through with your RA. 

I truly hope you can find some relief in your hands, and that the pain/burning

in your legs, will go away.

I do feel all of your pain OKD.  We are dealt so many things with RA.  It is

plain awful for us.

 

I pray you will have many, many pain free days ahead.  I know you are very

tired of all that you are going through.  Hang in there as there are better

days ahead for you.  God Bless you OKD.

 

Hugs,

 

Your friend,

 

Barbara

 

 

[Guest guest]

Barbara:

You know....you should make yourself an official RA Counselor. Every time I read

your words, they are so comforting.

Thanks!!

OKD

[Guest guest]

Hi OKD.

 

I am happy that I can be of comfort to you or anyone here.  I have had such

wonderful support here, comforting letters, and made many good friends here.

 

I do think of you a lot, and hope you have a good appt. with your Rheumy in

April.  Like you said, we must fight hard and move ahead with this ugly beast

RA.

 

Hugs,

 

Barbara

From: OKD <Cofade_2000@...>

Subject: [ ] Re: in a bad flare (was question on pain)

Date: Friday, March 25, 2011, 9:40 AM

 

Barbara:

You know....you should make yourself an official RA Counselor. Every time I read

your words, they are so comforting.

Thanks!!

OKD