New member

[Guest guest]

OKD,

I guess all of us who have been on methotrexate were afraid of all the

side effects. I remember when my rheumy gave the the brochure to read.

I thought that if it didn't kill me, it might help me. LOL. But it is

a tried and true med for RA. When you're on it, the doctor will order

frequent blood work to monitor the side effects. He should tell you to

take folic acid to mitigate the side effects. The makers have to list

all of the possible side effects. That doesn't mean that you'll get

them all. If the side effects are too bad, your doctor can switch you

to something else.

Good luck, and don't be scared. RA scares me much more than any of the

meds prescribed for it. And you're wise to be wary of prednisone, as

it also has a boatload of bad side effects.

Welcome to the group, and let us know how it goes.

Sue

On Jun 1, 2009, at 7:56 PM, cofade_2000 wrote:

> Hello everyone:

>

> I am a 50 yr old mother of three. I have hashimoto's thyroiditis, I

> had a hystrectomy about 2 years ago, so about 3 months ago, when I

> began to have what I can only describe as searing, burning bone pain

> in the long bones of both my legs, I told my primary care doc, she

> immediately sent me to my endocrinologist who then upped my

> synthroid, to no avail. The searing paid then traveled down to my

> knees and then I could no longer sleep, from the throbbin pain, then

> I was so dead tired, I almost couldnt function, I took off a week

> from work and sleep for 4 days straight, then my hands becme stiff

> anbd hurt, the bones on the top of one foot were hurting, i felt

> like my foot was going to break, I was miserable and became secrelty

> very scared (without telling my family), so I went back to my

> doctor, she then called a rhemuatologist who suggested cartain blood

> tests since autoimmune diseases can causes various ailments, sure

> enuf, my rheumatoid factor was sky high and I also had a serious Vit

> D deficiency. Fst forward to today, after I see the

> rhemuatologist. She started me on 5 mgs a day of prednisone, and I

> feel so much better, she added 50,00 unit of vit d and I started

> 2,000 a dy of fish oil and calcium. I added dark berries every day

> to my diet (cherries, blueberries, blackberry). I am afraid of

> prednisone, because my kids are asthmatics and I know its not

> something to stya on for long. It has been 3 weeks, and I get

> breakthru in my back and hands, but I feel like a million times

> better. This week I am starting methotrexate (after some liver

> testing) and I am afraid of the side effects I hear about, but the

> sering pain without the drug is so bad< i cant deal with the pain.

> I saw pain management specialist. She gave me Flexoril and Mobic,

> but it didnt do anything, stopped even making me sleepy after awhile

> at night (so at least it put me to sleep for a few days)

>

> I would appreciate any tips or comments.

>

> Thanks sincerely

>

> OKD

>

[Guest guest]

Thanks so much for your reply Barbara.  Mostly, I guess, what I am afraid of is

the " blow-up " you get with prednisone and the renal problems associated with

methothrexate.  When you do the research the possibilities of drug side effects

can be scary.  My aunt has RA so bad that she injects herself and takes 2 drugs

aside from that, so I sort of dred what may come.

 

I am wondering if anyone here had good results from alternative therapies, i.e.

Chinese Herbal Medicines, etc?  I am going to read thru the archives, before I

ask anymore, but I thank you for responding.

 

OKD

From: Barbara <bcreedon@...>

Subject: [ ] Re: New Member

Date: Tuesday, June 2, 2009, 8:37 AM

Hi OKD:

Welcome to our group of wonderful caring people.

I was sorry to read how much pain you are in and what you are going

through.  RA is hard to live with, but when you find the right

" cocktail " of meds., you will feel so much better.

I have had RA for 5 years, and it came on very suddenly.  I went from a

totally functioning woman in 5 days, to someone swollen with pain

everywhere, could not get out of bed without help, couldn;t dress myself

or feed myself.  I thought I had a brain tumor.  Saw my PCP, who sent me

to a Rheumy the next day.  She confirmed I had RA, and started me on MTX

right away.  I really didn't care what she gave me as long as I could

get out of all that pain and suffering.  I had never heard of RA before.

She also gave me 2 shots of Pred., and an RX to take it everyday.

I now inject myself with MTX once a week, take 10 mg. of Pred. daily for

6 years now, Sulfasalazine, and Placquenil.  These have worked

wonderfully for me.  My RA is under control, I have blood work each

month, and my Rheumy monitors me carefully.  My flares are shorter in

duration, and longer in between.  I am pretty much pain free.

I am grateful for what I can do, and I don't dwell on what I used to be

able to do.  I just take one day at a time.  I set goals for myself each

day as to what I want to get done.  If I can do some of them, I am

happy.  My days of being a worldbeater are over.  I don't appoligize to

anyone anymore if I can't go with them.  I felt guilty before if I said

no, and that made things harder on me.  My family and friends have been

wonderful to me and so supportive.  It did take awhile for them to

really underestand the daily battle I had.

I am 69 years old, and doing the best I can to have a nice life.  My

feet and ankles, hands and wrists were the worst with RA.  When I have a

bad flare, I just stay in bed.  It is impossible for me to walk when my

feet and ankles are so bad.  I just try to make the best of it.

I know you will feel so much better when you have a great Rheumy, and

your meds. begin to work.  It does take time though.  I have resigned

the fact that I will be on Pred. for the rest of my life.  Have tried

many times to get off it, but all the symptons come back, and I can't

endure all that pain and suffering.  I did put on 30 lbs., but I just

try to get past that.  I had to chose between vanity and no pain.  I

chose no pain.

Wishing you pain free days ahead.

Hugs,

Barbara

--- In , " cofade_2000 " <Cofade_2000@...>

wrote:

>

> Hello everyone:

>

> I am a 50 yr old mother of three. I have hashimoto's thyroiditis, I

had a hystrectomy about 2 years ago, so about 3 months ago, when I began

to have what I can only describe as searing, burning bone pain in the

long bones of both my legs, I told my primary care doc, she immediately

sent me to my endocrinologist who then upped my synthroid, to no avail.

The searing paid then traveled down to my knees and then I could no

longer sleep, from the throbbin pain, then I was so dead tired, I almost

couldnt function, I took off a week from work and sleep for 4 days

straight, then my hands becme stiff anbd hurt, the bones on the top of

one foot were hurting, i felt like my foot was going to break, I was

miserable and became secrelty very scared (without telling my family),

so I went back to my doctor, she then called a rhemuatologist who

suggested cartain blood tests since autoimmune diseases can causes

various ailments, sure enuf, my rheumatoid factor was sky high and I

also had a serious Vit D deficiency. Fst forward to today, after I see

the rhemuatologist. She started me on 5 mgs a day of prednisone, and I

feel so much better, she added 50,00 unit of vit d and I started 2,000 a

dy of fish oil and calcium. I added dark berries every day to my diet

(cherries, blueberries, blackberry). I am afraid of prednisone, because

my kids are asthmatics and I know its not something to stya on for long.

It has been 3 weeks, and I get breakthru in my back and hands, but I

feel like a million times better. This week I am starting methotrexate

(after some liver testing) and I am afraid of the side effects I hear

about, but the sering pain without the drug is so bad< i cant deal with

the pain. I saw pain management specialist. She gave me Flexoril and

Mobic, but it didnt do anything, stopped even making me sleepy after

awhile at night (so at least it put me to sleep for a few days)

>

> I would appreciate any tips or comments.

>

> Thanks sincerely

>

> OKD

>

------------------------------------

[Guest guest]

My diagnosis from the Rheumy is Ra.

From: tdianaok <tdianaok@...>

Subject: [ ] Re: New Member

Date: Monday, June 1, 2009, 11:54 PM

Welcome OKD,

What is your diagnosis from the rheumy and endocrinologist?  You have

been through a lot, and I know your just wanting some peace.  The RA

meds are very scary, and we've all been where you are.  I hope your

doctor can figure out what's going on, and get you feeling better.

Take care,

Tawny

--- In , " cofade_2000 " <Cofade_2000@...>

wrote:

>

> Hello everyone:

>

> I am a 50 yr old mother of three. I have hashimoto's thyroiditis, I

had a hystrectomy about 2 years ago, so about 3 months ago, when I began

to have what I can only describe as searing, burning bone pain in the

long bones of both my legs, I told my primary care doc, she immediately

sent me to my endocrinologist who then upped my synthroid, to no avail.

The searing paid then traveled down to my knees and then I could no

longer sleep, from the throbbin pain, then I was so dead tired, I almost

couldnt function, I took off a week from work and sleep for 4 days

straight, then my hands becme stiff anbd hurt, the bones on the top of

one foot were hurting, i felt like my foot was going to break, I was

miserable and became secrelty very scared (without telling my family),

so I went back to my doctor, she then called a rhemuatologist who

suggested cartain blood tests since autoimmune diseases can causes

various ailments, sure enuf, my rheumatoid factor was sky high and I

also had a serious Vit D deficiency. Fst forward to today, after I see

the rhemuatologist. She started me on 5 mgs a day of prednisone, and I

feel so much better, she added 50,00 unit of vit d and I started 2,000 a

dy of fish oil and calcium. I added dark berries every day to my diet

(cherries, blueberries, blackberry). I am afraid of prednisone, because

my kids are asthmatics and I know its not something to stya on for long.

It has been 3 weeks, and I get breakthru in my back and hands, but I

feel like a million times better. This week I am starting methotrexate

(after some liver testing) and I am afraid of the side effects I hear

about, but the sering pain without the drug is so bad< i cant deal with

the pain. I saw pain management specialist. She gave me Flexoril and

Mobic, but it didnt do anything, stopped even making me sleepy after

awhile at night (so at least it put me to sleep for a few days)

>

> I would appreciate any tips or comments.

>

> Thanks sincerely

>

> OKD

>

------------------------------------

[Guest guest]

Hi,

I am sorry you are diagnosed with RA. I am glad you found this group, a

nice place to be.

My RA is severe, my rheumy fights it very aggresively with:methotrexate,

humira, and mobic. I take lortab for the pain, and flexeril for my neck

pain. I really believe we need these meds to stop the progression of

the disease.

I am having a terrible time with vitamin d deficiency. I am curious to

wonder if there is a underlying disease, no one knows about. I plan to

have a talk with my primary doc Friday. My rheumy has just been giving

me prescriptions for it, and I need to find out what is causing it.

I'm glad you joined our group, looking forward to knowing more about

you,

Hugs, Tawny

> >

> >

> > Welcome OKD,

> >

> > What is your diagnosis from the rheumy and endocrinologist? You have

> > been through a lot, and I know your just wanting some peace. The RA

> > meds are very scary, and we've all been where you are. I hope your

> > doctor can figure out what's going on, and get you feeling better.

> >

> > Take care,

> >

> > Tawny

[Guest guest]

Stan, I'm glad that I waited until I was past 60 to get RA, and I'm

glad that there are such good medications like Enbrel to treat it with.

Sue

On Jun 5, 2009, at 12:45 PM, stanpfister@... wrote:

>

> Good to hear from you, I've noticed you haven't been on a lot lately

> and I know you were dealing with things (like chunks out of your arm

> and such). says we're doing just fine on our own in the

> wreaking havoc department. . The two things I've learned to

> appreciate in having RA for me is having a little later in life (I'm

> 56) and being pretty healthy before that. It really upsets me to

> read these posts when young people are diagnosed with RA. I know we

> have to play the hand we are dealt but I think it harsh. The other

> is having RA now because these is so much available in terms of

> treatment and support. Before getting involved in this group I did a

> lot of research and talked with a lot of people in the health care

> biz. Before MTX there wasn't really anything going on except maybe a

> bottle of whiskey and a piece of leather, " here, bit on this when

> things get really bad! " My girlfriend's family had a friend years

> ago who had hands that look like giant sunflowers from the effects

> of RA. Off course, they had to tell me " all " about it the day after

> I was diagnosed.

>

[Guest guest]

Now if only they'd get me on one of them!

Stan

Sent: Friday, June 5, 2009 1:43:43 PM GMT -08:00 US/Canada Pacific

Subject: Re: [ ] New Member

Stan, I'm glad that I waited until I was past 60 to get RA, and I'm  

glad that there are such good medications like Enbrel to treat it with.

Sue

[Guest guest]

Hi :

Welcome to our wonderful group of people here. I was so sorry to read

that you have R.A. We all know what you are going through each and

every day.

Do you have a Rheumy yet? If so, have you called him/her to tell them

the pain you are in, and that the pain is keeping you up all night? One

thing with R.A., you have to rest and get plenty of sleep. That is so

important.

We all have had to give up some things we always did do. I just

concentrate on the things I can still do. It is so important to try and

have a positive attitude while dealing with R.A. I just do the best I

can each day. I plan out my day, and try to get the things I want to do

done. If that doesn't happen, then I will do them the next day. I pace

myself, which was very hard for me to do. R.A. has changed my life, but

I still have my life. I have learned to deal with it as best as I can.

R.A. reared its ugly head to me 6 years ago. I had never heard of it,

and was scared to death with all I had to deal with. My Rheumy started

treating it aggressively from day one. It took a while for me to find

the right " cocktail of meds " to get me under control. I have been in a

med. induced remission since last Oct. I am free of pain totally. I

still can't believe it has happened for me. How long this will last no

one knows. But I am most thankful for this time with no pain and

suffering.

If you could just take one day at a time, you would feel better and not

get overwhelmed with all we have to deal with R.A. That is what I do.

Sometimes it would be minute by minute. No one truly knows what we deal

with daily, or how bad the pain really is. But everyone here does. You

can vent, cry, talk, etc. here. We all understand, and have been

through it a long time.

I hope you can get your pain under control. It is so hard to suffer

like that day in and day out. Try to rest when you can. It does make a

difference for us.

Wishing you pain free days ahead. I care.

Hugs,

Barbara

--- In , " shelly_avery " <shelly_avery@...>

wrote:

>

> I just wanted to take a minute and introduce myself. My name is

and I'm 40 yrs old. I'm married and we have a 9yr old son with

hemophilia. I have been dealing with severe pain for 3 yrs and just 3

months ago recieved the diagnoses of RA. I have started 2 different

kinds of meds but had to quit taking one of them because of side

affects. The reason why I joined this group at this time of the morning

is because I have been up all night in pain. I was sitting here trying

everything I could think of to try to lesson the pain and it's just one

of those nights that the pain won't let up so I decided that it was time

to go online and try to find some support. I feel so alone in this

journey that it would be nice to talk to people that understand what I'm

going through. One thing that bothers me is that I can't do what I used

to be able to do. Every day things along with doing things with my son.

I so hope that this gets better. Well I have cried enough for tonight. I

look forward to getting to know everyone. Thank you for listening

>

>

> Mom to the blessing from above

>

[Guest guest]

Hi - You are not alone! I am sorry that you are suffering so much. At

times, the heating pad is my best friend. I wrap it around my hands, feet,

knees, back and just sit in the recliner for what seems like days. Then the

swelling subsides, along with some of he pain, and I go on with my 2 boys (8 and

9 years old). They have learned over time to please not grab my hands! Like

you, it saddens me that I do not run and play with them like I used to.

Recently, they have made comments about it. About how I do not play with them

like I used to, or go outside like I used to (It's only 110 degrees out there

with 98% humidity- in the morning!) I keep trying each day, but once they are

down for the night, I am DONE. I have nothing left for my husband or even

myself. Back into the recliner with a heating pad and the cycle starts over. I

have not slept in a bed for 4 months, because the back and hip pain. I eat

Fioricet pain med like it is candy! I am on the RA meds, and have the yucky

side effects, trying to find a way through this. My problem with all of this,

is seeing a depression settling over me. Kind of like watching a train wreck

and having no way to stop it or slow it down. Grrrrr. Anyway- I have no magic

answers to all of this. Just want you to know that you are not alone. I wish

you a pain-free and energy filled day! - in hot, hot, hot south

Louisiana

>

> I just wanted to take a minute and introduce myself. My name is and

I'm 40 yrs old. I'm married and we have a 9yr old son with hemophilia. I have

been dealing with severe pain for 3 yrs and just 3 months ago recieved the

diagnoses of RA. I have started 2 different kinds of meds but had to quit

taking one of them because of side affects. The reason why I joined this group

at this time of the morning is because I have been up all night in pain. I was

sitting here trying everything I could think of to try to lesson the pain and

it's just one of those nights that the pain won't let up so I decided that it

was time to go online and try to find some support. I feel so alone in this

journey that it would be nice to talk to people that understand what I'm going

through. One thing that bothers me is that I can't do what I used to be able to

do. Every day things along with doing things with my son. I so hope that this

gets better. Well I have cried enough for tonight. I look forward to getting

to know everyone. Thank you for listening

>

>

> Mom to the blessing from above

>

[Guest guest]

,

Welcome to the group. You will find a lot of empathy here.

We have all learned, and are learning to focus on the things we can do and stop

dealing with the things we no longer can.

 

There are many accomodations we can learn to make life easier.

This is a good place to vent.

 

Cordially,

Raniolo

From: shelly_avery <shelly_avery@...>

Subject: [ ] New Member

Date: Thursday, July 9, 2009, 4:22 AM

I just wanted to take a minute and introduce myself. My name is and I'm

40 yrs old. I'm married and we have a 9yr old son with hemophilia. I have been

dealing with severe pain for 3 yrs and just 3 months ago recieved the diagnoses

of RA. I have started 2 different kinds of meds but had to quit taking one of

them because of side affects. The reason why I joined this group at this time of

the morning is because I have been up all night in pain. I was sitting here

trying everything I could think of to try to lesson the pain and it's just one

of those nights that the pain won't let up so I decided that it was time to go

online and try to find some support. I feel so alone in this journey that it

would be nice to talk to people that understand what I'm going through. One

thing that bothers me is that I can't do what I used to be able to do. Every day

things along with doing things with my son. I so hope that this gets better.

Well I have cried enough

for tonight. I look forward to getting to know everyone. Thank you for

listening

Mom to the blessing from above

[Guest guest]

You're not alone. Unfortunately pain is the one thing we all seem to have in

common, that and what we have to go through to get a effective treatment plan.

However, you will find outside of this group that very few people understand

what it means to have this disease. It's strange, my GP seems to get it but my

Rheumatologist is from another planet and she works with people like us

everyday. When you have a good day then you have to take advantage of it, and

save the less demanding things for when you're not having a good day, kids get

it. Hope this helps.

Stan,

Seattle, Cloudy.

Subject: [ ] New Member

I just wanted to take a minute and introduce myself.  My name is and I'm

40 yrs old.  I'm married and we have a 9yr old son with hemophilia.  I have

been dealing with severe pain for 3 yrs and just 3 months ago recieved the

diagnoses of RA.  I have started 2 different kinds of meds but had to quit

taking one of them because of side affects.  The reason why I joined this group

at this time of the morning is because I have been up all night in pain.  I was

sitting here trying everything I could think of to try to lesson the pain and

it's just one of those nights that the pain won't let up so I decided that it

was time to go online and try to find some support.  I feel so alone in this

journey that it would be nice to talk to people that understand what I'm going

through.  One thing that bothers me is that I can't do what I used to be able

to do.  Every day things along with doing things with my son.  I so hope that

this gets better.  Well I have cried enough for tonight.  I look forward to

getting to know everyone.  Thank you for listening

Mom to the blessing from above  

[Guest guest]

Hi - welcome to the group! You've come to the right place - there are so

many wonderful, caring people here. I'm sorry you have been up during the night

with the pain. I've been there many a times and it still happens occasionally. I

thank God every day for the internet and my computer! I think I would go out of

my mind if I were isolated from the outside world and had nowhere to turn when

things got rough.

What kind of meds are you taking for your RA? I take Enbrel, MTX and

Sulfasalazine. I take prednisone only for 5 days at a time when I have a flare

up. I have also been diagnosed with Fibromyalgia, so I take Neurontin for that.

I take Percocet for the pain, but may have to change that depending on how the

FDA decides to handle it. The key is to find a Rheumatologist who will work with

you to treat this aggressively. Everyone has a different combination of meds -

the goal is to bring you into remission. You don't have to suffer in pain, so

talk to your doctor about getting some kind of medication to help you through

those times when the pain is out of control.

There are a lot of things that I can't do anymore like I used to - I've just had

to change my mindset and make it a challenge to find new and creative ways to do

those things and to accept the things that I just can't do anymore. Check out

The Spoon Theory:

http://www.butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf It has

been a blessing to me and a lot of other people in understanding how we have to

arrange our days in order to get through them. The woman in the story has Lupus,

but the limitations are similar to any and all chronic illnesses - including RA.

Let your husband read it too - it will help him to better understand what you're

going through.

I'm sorry to hear your son has hemophilia. I know its something that he has to

be very careful with - I pray the doctors have it under control as well.

Again - welcome to the group - please post, vent, share or rant anytime you need

or want to. We're all here for you.....Doreen

I just wanted to take a minute and introduce myself. My name is and I'm

40 yrs old. I'm married and we have a 9yr old son with hemophilia. I have been

dealing with severe pain for 3 yrs and just 3 months ago recieved the diagnoses

of RA. I have started 2 different kinds of meds but had to quit taking one of

them because of side affects. The reason why I joined this group at this time

of the morning is because I have been up all night in pain. I was sitting here

trying everything I could think of to try to lesson the pain and it's just one

of those nights that the pain won't let up so I decided that it was time to go

online and try to find some support. I feel so alone in this journey that it

would be nice to talk to people that understand what I'm going through. One

thing that bothers me is that I can't do what I used to be able to do. Every

day things along with doing things with my son. I so hope that this gets

better. Well I have cried enough for tonight. I look forward to getting to

know everyone. Thank you for listening

Mom to the blessing from above

[Guest guest]

Rob, since I had a stomach ulcer from Aleve a few years ago, I now

take generic Tylenol. The Enbrel that I'm on is working so well that I

don't need anything else.

You don't have to wean off of NSAIDS, but you do need to wean off of

prednisone.

Sue

On Nov 11, 2010, at 10:06 PM, keenoy1979 wrote:

> Hello ,

>

> I am a 31 year old male.I was diagnosed with ra 7 years ago.This

> year has been the worst year of my life.I've been able to hide it

> for the last 6 years,but this flare i had was keeping me bed

> ridden.My rheumy has me on enbrel and methotrexate injections.All my

> pain has been gone for a month and it has been great.I am trying to

> get off of NSAIDS because of stomach problems.Any suggestions?

>

> thanks

[Guest guest]

To solve the issue with my stomach and NSAIDS, I was prescribed Omeprazole

(Prilosec) daily. In the beginning, I bought Prilosec and took 1/2 a pill

every morning. Now I'm off both of them and my tummy likes me again.

I'm trying to afford Enbrel so I can get some relief from the extreme pain

I've been suffering. Lately it's been staying at a 8-9 range and not

slacking up.

Dennis in eastexas

On Thu, Nov 11, 2010 at 9:06 PM, keenoy1979 <KEENOY13@...> wrote:

>

>

> Hello ,

>

> I am a 31 year old male.I was diagnosed with ra 7 years ago.This year has

> been the worst year of my life.I've been able to hide it for the last 6

> years,but this flare i had was keeping me bed ridden.My rheumy has me on

> enbrel and methotrexate injections.All my pain has been gone for a month and

> it has been great.I am trying to get off of NSAIDS because of stomach

> problems.Any suggestions?

>

> thanks

>

> rob

>

[Guest guest]

Dennis,

I'm sorry that you're still suffering from extreme pain. Can you get

help from the company that makes Enbrel?

Sue

On Nov 12, 2010, at 4:27 PM, Dennis W wrote:

> To solve the issue with my stomach and NSAIDS, I was prescribed

> Omeprazole

> (Prilosec) daily. In the beginning, I bought Prilosec and took 1/2 a

> pill

> every morning. Now I'm off both of them and my tummy likes me

> again.

>

> I'm trying to afford Enbrel so I can get some relief from the

> extreme pain

> I've been suffering. Lately it's been staying at a 8-9 range and not

> slacking up.

>

[Guest guest]

No, Sue, Enbrel has stupid policies. If I have no prescription insurance, I

can get the meds for free or a small copay, $10 or so. With insurance (such

as it is), I have to pay the full copay, about $250-300 per month. It's

either all or none! It seems to me that they should have some

middle-of-the-road compromise for those of us with small incomes and no

prospect for pay increases, thanks to the government (%@$#(). I have to find

help from one of the assistance programs. I'd use another med, but they all

seem to have the same policies, so I can't protest that way. I don't know

yet, but I'd bet I'll be denied because of a $270/mo retirement income I

started getting last year. I have told them what I think of the policy in a

nice but firm way. I don't ever use profanity of any kind but do have enough

of a vocabulary to stop them in their tracks most of the time. I do love

that, they don't usually know what to say!

Thanks to the others that have given me best wishes. The thoughts are really

appreciated. And the pain is more like 7-8 today, getting better...

Dennis in eastexas

On Fri, Nov 12, 2010 at 3:39 PM, marysue <marysue@...> wrote:

>

>

> Dennis,

>

> I'm sorry that you're still suffering from extreme pain. Can you get

> help from the company that makes Enbrel?

>

> Sue

>

>

> On Nov 12, 2010, at 4:27 PM, Dennis W wrote:

>

> > To solve the issue with my stomach and NSAIDS, I was prescribed

> > Omeprazole

> > (Prilosec) daily. In the beginning, I bought Prilosec and took 1/2 a

> > pill

> > every morning. Now I'm off both of them and my tummy likes me

> > again.

> >

> > I'm trying to afford Enbrel so I can get some relief from the

> > extreme pain

> > I've been suffering. Lately it's been staying at a 8-9 range and not

> > slacking up.

> >

>

[Guest guest]

Thank you Steve! The wonderful welcoming response of the members of this

group is really so encouraging. I appreciate it and am glad I found such a

great group of people!

Jen

On Mon, Jan 31, 2011 at 5:49 AM, wonderwhat <wonderwhat72@...> wrote:

>

>

> Jen, I am so glad that you have a positive outlook. I am a soon to be 59

> y.o. man who was diagnosed with RA after having diverticulitis, back

> surgery, prostate cancer, and glaucoma issues in addition to my Dad passing

> away with Alzheimer's disease and Mom being diagnosed with it over the last

> 4 years. I was recently diagnosed with depression as well and left the

> church I was pastoring. I have learned to use these as experiences I can

> help other people with (I am a pastor). The main key to this is personal

> research. In addition, groups like this and, if you can find one, an

> arthritis support group. Your plight as a single Mom makes the journey even

> more fun. I will be praying for you and may you be encouraged by your

> rheumatologist and friends every step of the way. You will always have

> friends here to help you through!

>

> Steve S

> nna, AR

>

>

[Guest guest]

Hello everyone. I am brand new to the group. Only heard about like a couple

of weeks ago. I have 2 beautiful kids, ages 4 & 6 that need help.. I am trying to

see dr goldberg, ordered his book as well, but i just have a quick question. Are

your kids on a special diet? you know.. like GFCF soy free sugar free?

Thank you in advance for your support

[Guest guest]

does have a particular diet and its goal is to avoid irritating an already

out of whack immune system. It's somewhat similar to a low carb diet in that you

push proteins and vegetables, only two servings of fruit per day (that would

include fruit juice) because of sugar content, no whole grains (whole grains are

more difficult to process and thus can set off the immune system. If you need to

get protein in through the use of a sandwich, you plain white bread. No dairy

from cow's. We use goat's milk products.

There are some things that are not acceptable on the diet: no berries, cherries,

tropical fruits, no nuts. Processed peanut butter, such a s JIF, is ok as long

as the child isn't allergic. Other foods may be eliminated depending on the

individual.

I hope this helps. Please keep in mind that the goal of the diet is to choose

foods that are easily processed and won't set off the immune system. My son had

a unexplained rash over most of his body. Pediatricians couldn't figure out what

it was for two years. Turned out to be whole grains. The rash cleared up after a

few weeks on the diet.

All the best,

Robyn

From: mshommas <mm39041@...>

Subject: New member

Date: Wednesday, February 23, 2011, 10:47 PM

 

Hello everyone. I am brand new to the group. Only heard about like a

couple of weeks ago. I have 2 beautiful kids, ages 4 & 6 that need help.. I am

trying to see dr goldberg, ordered his book as well, but i just have a quick

question. Are your kids on a special diet? you know.. like GFCF soy free sugar

free?

Thank you in advance for your support

[Guest guest]

Hi Bill and welcome! I get Enbrel from the VA and it's my key for good living

with RA. I work full time, exercise, and chase my boys ages 7 and 2. Within a

week on Enbrel i stopped gelling up, wasn't tired, and now have normal labs and

no morning stiffness. So certainly all mess have potential side effects, but for

me, this is the way to go. I even took Enbrel while pregnant with my youngest

son. We are lucky to have VA care as many RA patients cannot afford a biologic.

And for natural interventions, I do pilates, take fish oil and turmeric, and

find that swimming helps a lot. I think reducing gluten and sugar is a good idea

as well. Kate f

Sent from my iPhone

On Mar 24, 2011, at 7:44 PM, " Bill " <bschroeder9@...> wrote:

> greetings to the group.

>

> I have been battling RA for a little over a year now. I am on methotrexate.

>

> There is still so much I don't understand about RA. I am in treatment at the

VA hospital and the resources there are limited.

>

> My RA came on very quickly after a vacation to Washington DC with my son.

>

> I'm researching other treatment options at this time. The VA has offered to

start me on Humira. I'm not sure I'm crazy about this medication after some of

the horror stories I have read.

>

> I've always been a believer in natural treatments but have no idea what works

with RA.

>

> I was told the Tai-chi is helpful. I worked out every day many years ago and

have recently returned to this exercise.

>

> Any way, I'm looking forward to communicating with the group, and learning a

few things.

>

> I am 62 years old and A lifetime resident of Florida. I live in Safety

Harbor,a small town on Tampa Bay. I am a retired cop.

>

> Best to all

>

> Bill S.

>

>

[Guest guest]

Bill,

Any natural treatments that you use should be complementary, not used

instead of medications. When you have RA, you need to be on a DMARD to

prevent joint damage, which is irreversible. If the VA has offered you

Humira, I'd say you were lucky, because many can't afford to be on a

biologic.

Like Kate, who also replied to you, I am on Enbrel. I believe she and

I qualify as Enbrel evangelists because it works so well for us. I can

hardly tell that I have RA. Humira works in a similar way to Enbrel. I

would go ahead and start on a biologic, if I were you. If you have too

many adverse side effects, you can always be switched to something

else. Frequent blood work will be done to monitor you.

Add as much Tai-chi or other exercise as you're able to. Let us know

what you decide. And good luck!

Sue

On Mar 24, 2011, at 8:44 PM, Bill wrote:

> greetings to the group.

>

> I have been battling RA for a little over a year now. I am on

> methotrexate.

>

> There is still so much I don't understand about RA. I am in

> treatment at the VA hospital and the resources there are limited.

>

> My RA came on very quickly after a vacation to Washington DC with my

> son.

>

> I'm researching other treatment options at this time. The VA has

> offered to start me on Humira. I'm not sure I'm crazy about this

> medication after some of the horror stories I have read.

>

> I've always been a believer in natural treatments but have no idea

> what works with RA.

>

> I was told the Tai-chi is helpful. I worked out every day many years

> ago and have recently returned to this exercise.

>

> Any way, I'm looking forward to communicating with the group, and

> learning a few things.

>

> I am 62 years old and A lifetime resident of Florida. I live in

> Safety Harbor,a small town on Tampa Bay. I am a retired cop.

>

> Best to all

>

> Bill S.

>

>

>

> ------------------------------------

>

>

[Guest guest]

Welcome to the group, Bill! I hope you find something that works for

you. I wouldn't necessarily be put off by the horror stories... people

always post if they have something bad to say about something, but all

the people who have normal, 'boring' experiences with a drug don't post

about it because, frankly, that's less interesting than a horror story.

Soni

On 3/25/2011 11:44 AM, Bill wrote:

>

> greetings to the group.

>

> I have been battling RA for a little over a year now. I am on

> methotrexate.

>

> There is still so much I don't understand about RA. I am in treatment

> at the VA hospital and the resources there are limited.

>

> My RA came on very quickly after a vacation to Washington DC with my son.

>

> I'm researching other treatment options at this time. The VA has

> offered to start me on Humira. I'm not sure I'm crazy about this

> medication after some of the horror stories I have read.

>

> I've always been a believer in natural treatments but have no idea

> what works with RA.

>

> I was told the Tai-chi is helpful. I worked out every day many years

> ago and have recently returned to this exercise.

>

> Any way, I'm looking forward to communicating with the group, and

> learning a few things.

>

> I am 62 years old and A lifetime resident of Florida. I live in Safety

> Harbor,a small town on Tampa Bay. I am a retired cop.

>

> Best to all

>

> Bill S.

>

>

[Guest guest]

Welcome to our wonderful group Bill.  I think you have a good chance with the

VA to start Humira.  The biological drugs do work well for some.

 

I have not had to try them yet.  I found my wonderful " Cocktail " of RA meds,

and have been in a medicine induced remission for 2 years now.  I have my life

back, which I am most grateful for.

 

I hope your Rheumy begins to treat your RA agressively to prevent joint

damage.  I too take MTX each week, plus my other RA meds.

 

I moved here to Florida 7 years ago for my RA as I could not live on Cape Cod

due to the N.E. weather.  I am so much better here.

 

I hope you feel better soon.  Try to rest as much as you can as it does help

with the tiredness.

 

Hugs,

 

Barbara

>

>

>

> ------------------------------------

>

>

[Guest guest]

hi bill

 

i was on humira but it didn't work, went on enbrel it worked for 12 years then

stopped

was on orencia for 6 months with no help, now trying actemra, had my first

infusion today i hope this works,have ra for 27 years, was also on gold pills

for 10 years,don't be afraid of these drugs, the pain is worst, had no side

effects

with any of these drugs

 

ann

nj

From: Bill <bschroeder9@...>

Subject: [ ] New Member

Date: Thursday, March 24, 2011, 8:44 PM

 

greetings to the group.

I have been battling RA for a little over a year now. I am on methotrexate.

There is still so much I don't understand about RA. I am in treatment at the VA

hospital and the resources there are limited.

My RA came on very quickly after a vacation to Washington DC with my son.

I'm researching other treatment options at this time. The VA has offered to

start me on Humira. I'm not sure I'm crazy about this medication after some of

the horror stories I have read.

I've always been a believer in natural treatments but have no idea what works

with RA.

I was told the Tai-chi is helpful. I worked out every day many years ago and

have recently returned to this exercise.

Any way, I'm looking forward to communicating with the group, and learning a few

things.

I am 62 years old and A lifetime resident of Florida. I live in Safety Harbor,a

small town on Tampa Bay. I am a retired cop.

Best to all

Bill S.

[Guest guest]

Bill,

I totally understand how you feel. I felt the same way. This disease has a lot

of complications. Please remember everyone is different. What works for you may

not work for me, or others. Try to read as much as you can about this disease.

The Arthritis Foundation has some great publications that helped me understand

this disease.

It is important to get medication early to prevent damage. Talk to your doctor

about potential side effects. My husband works at the Kansas City VA and my Dad

goes to the VA for RA and Chronic Lukumia. I know that they can get any

medication you would want. They can order it. Tell your doc that you are worried

about Humaria. Maybe they can start you on a different medication.

It will get better, you are already on a DMARD, Disease Modifying

Anti-Rheumatic, in Methotrexate, also known as MTX. So the MTX is already

helping. MTX has been frequently associated with more side effects than Humaria,

but again each person is different. I had bad side effects with MTX the first

time but not the second time I tried it. I had no effects with Humeria but got

horrible rashes on Enbrel.

Tai Chi is helpful but the big help I have gotten, again I may be different than

you, was from accupuncture and meditation. I am also on a veggie diet that has a

lot of anti-inflammation foods in it. I also drink herbal teas that I researched

to see which ones were the best for RA. I also drink Matcha Green tea, which has

a good amount of anti inflammation properties. These are in addition to the

traditional medication not a substitution.

Take care, I am happy to share my experience with natural remidies if you want.

I have also been on Enbrel, Plaqunil, MTX, Sulfasalizine, Remicade and Orencia.

BJ

>

> greetings to the group.

>

> I have been battling RA for a little over a year now. I am on methotrexate.

>

> There is still so much I don't understand about RA. I am in treatment at the

VA hospital and the resources there are limited.

>

> My RA came on very quickly after a vacation to Washington DC with my son.

>

> I'm researching other treatment options at this time. The VA has offered to

start me on Humira. I'm not sure I'm crazy about this medication after some of

the horror stories I have read.

>

> I've always been a believer in natural treatments but have no idea what works

with RA.

>

> I was told the Tai-chi is helpful. I worked out every day many years ago and

have recently returned to this exercise.

>

> Any way, I'm looking forward to communicating with the group, and learning a

few things.

>

> I am 62 years old and A lifetime resident of Florida. I live in Safety

Harbor,a small town on Tampa Bay. I am a retired cop.

>

> Best to all

>

> Bill S.

>