New to list

[Guest guest]

Hi Donna,

we use Vegan parmesan alternative by SOYCO, I get it at the health food

store. Ingredients are water, tofu, canola oil, sea salt, citric acid,

calcium phosphate, natural flavors, vitamine A palmitate, riboflavin. It was

hard to find for a while because Oprah mentioned it on her show as a weight

loss product, and it dissapeared of the shelves as quickly as it was being

sticked, AAAARGH! Here's their email in case you can't find it

www.galaxyfoods.com . You don't need a prescription for PolyViSol, we got it

our local pharmacy. Good Luck

Re: New to list

>

>

> Hi There,

> You could have pizza without the cheese, or bring along some " mock "

> parmesian cheese to throw on top.

> For a multi Dr. G suggested Poly Vi Sol we use the liquid drops and mix

them

> in juice, you can't really taste them.

>

>

> Hi ,

> What brand of mock parmesian cheese do you suggest? (and where to find

them -- I'm in the L.A. area) Most of what I am finding in the health food

stores have a significant amount of milk protein in them.

> Re the Poly Vi Sol, do you need a prescription for that, or can I just

pick it up at a place like Whole Foods? Forgive the dumb questions; I'm

just overwhelmed by all this...yesterday had his blood work done, and

they must have filled 15 vials! The poor little guy was a real trooper,

but Mommy was a wreck!

> Donna

>

>

>

[Guest guest]

Hi ,

I like to by multi-vitamins from Kirkman lab www.kirkmanlabs.com . They come in

capsules, you just open it and pour the powder to diluted juice, absolutely no

additional taste. Be sure you order regular formula, not megadoses. As for

treats, my son is little (3 y) and he likes food I give him, he does not like to

taste unusual food out of the house, so we do not have much problems. I give him

his own food to daycare (he attends regular daycare two mornings a week ).

We learned that we have to give up some events with completely forbidden food,

so that's life. My sone is GFCF and soy free, and I am almost full time working

mom, so you got it.

I have some useful websites for food ordering. let me know if you'd like this

information.

Good luck

Regina

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

[Guest guest]

Hi Gail, I'm Debbie. It's nice to have you join us. I am recently

diagnosed with RA and in the process of deciding whether to start on Metho.

I have made my decision to go ahead and take it. I'm just scared of it, but

I think I need to put that fear aside and do what's best for my body. I

have great confidence in my doctors to take good care of me.

Welcome to the group. I have found everyone to be so supportive and

friendly. You will undoubtable love each and every person here. (((Hugs)))

Debbie Mc

-- [ ] New To List

Hi Everyone, I'm a new subscriber , but was diagnosed with RA when I was 42.

...That was twelve years ago. (modestly telling my age )

Everyday is still a struggle in spite of my high tolerance to pain. I'm

looking forward to sharing posts and reading how others cope with this

painful joint disease.

Gail

[Guest guest]

HI Gail..I was diagnosed last month at 43 years of age. Although I have just

joined this group I wanted to say hello and give you my best wishes. After

twelve years I am sure you have lots to share that would help newly dx'd people

like myself.

Take care

To look at something as though we had never seen it before requires great

courage.

- Henri Matisse

[ ] New To List

Hi Everyone, I'm a new subscriber , but was diagnosed with RA when I was

42....That was twelve years ago.

[Guest guest]

Hi ,

Yes, I could share a lot with this group since I've had RA for 12+ years. But I

promise I won't whine and complain...even though I know it's ok every now and

then. I've been on almost every kind of treatment there is for RA...And at the

present I'm on placquanil and Methatrexate. and of coarse the only pain reliever

that works for me is Ibuprofen.

As I can remember the first year was the worst....I guess it's because you're

not used to such fatigue and joint pain. But hopefully you newly diagnosed on

the list will have some remission periods...I did in the first few years and

you'll really welcome them after several months of pain.

I don't want to make this too long especially since I'm new to the list...But I

do want to say....NEVER GIVE UP....keep going when you feel good ...rest on your

bad day's.....When you give in to RA that's when it can really get you.

Sorry this was so long but I could share so much since I've had RA for so long.

Best wishes to all,

Gail

[ ] New To List

Hi Everyone, I'm a new subscriber , but was diagnosed with RA when I was

42....That was twelve years ago.

[Guest guest]

Hi Debbie,

I'm taking the Methatrexate myself. I don't take the pill form but the liquid

injection type . My insurance doesn't cover my medications so the liquid

injection form is much cheaper and works just like the pill form. It does make

me a little nauseated for a few hrs after I take it...But soon over. Be sure and

take folic acid supplements if you do take the Meth.

Good luck and hope it works for you.

Gail ( thanks for the welcome )

[ ] New To List

Hi Everyone, I'm a new subscriber , but was diagnosed with RA when I was 42.

..That was twelve years ago. (modestly telling my age )

Everyday is still a struggle in spite of my high tolerance to pain. I'm

looking forward to sharing posts and reading how others cope with this

painful joint disease.

Gail

[Guest guest]

Your advise just from your note below has already meant so much to me. Some days

it has been hard not to give up as far as trying to stay positive goes! Somehow

it means alot hearing it come from another RA person. Today has been a rest day

for me and I have a hard time accepting these days. Thanks.

Re: [ ] New To List

Hi ,

>I don't want to make this too long especially since I'm new to the

list...But I do want to say....NEVER GIVE UP....keep going when you feel good

....rest on your bad day's.....When you give in to RA that's when it can really

get you.

[Guest guest]

Hi Gail, and welcome to the group! I've been here for a few months now, and

found lots of information as well as warmth and support. I was diagnosed

with RA this past February, so I'm fairly new to this disease. I'm taking

Methotrexate and Plaquenil, and am still having my share of bad days. I

actually had symptoms for about 4 years, but didn't bring it up to my doctor

until I could no longer tolerate the pain. Knowing what I know now, I wish

I had brought it up sooner.

Since you've had this disease for awhile now, I'm looking forward to your

insight!

Hugs,

Carol in FL

[ ] New To List

Hi Everyone, I'm a new subscriber , but was diagnosed with RA when I was

42....That was twelve years ago. (modestly telling my age )

Everyday is still a struggle in spite of my high tolerance to pain. I'm

looking forward to sharing posts and reading how others cope with this

painful joint disease.

Gail

[Guest guest]

Hi Carol,

Thanks for the warm welcome...I hope I can be of some help to you newly

diagnosed on the list...Since I've had this for so many years, any of you feel

free to ask me question about my experiences...I'm certainly not a DR. or pro on

the subject...But I have experienced several surgery's due to the RA, and would

be glad to answer any questions pertaining to my years with RA.

I agree Carol, You should have seen the DR. sooner, but I can understand why

you didn't...Sometimes I still find myself in denial of the severity of my

disease. Just try and keep a positive attitude and never give in.

Gail ( from north Alabama )

[ ] New To List

Hi Everyone, I'm a new subscriber , but was diagnosed with RA when I was

42....That was twelve years ago. (modestly telling my age )

Everyday is still a struggle in spite of my high tolerance to pain. I'm

looking forward to sharing posts and reading how others cope with this

painful joint disease.

Gail

[Guest guest]

hi gail, kathy in il here 42. still trying to nail down the diagnosis, but

going towards reactive arthritis and fibromyalgia. i also have glaucoma and

an ulcer. i'm a widow and have an 18 yr old son. i've had carpal tunnel and

tarsal tunnel surgeries bilaterally. these people are great here. welcome

kathy in il

[Guest guest]

,

I'm so proud that my note helped encourage you. I do know how you feel

though...And on somedays I still get kinda down and have myself a "

Pity-Party " ...Then I realize ...I could have a more life threatening

disease...And then I get back on track again.

( all on the list )...I've had two surgeries on my feet...My right foot

was re-constructed...I have pin's and metal devices that would probably set off

an alarm at an air-port....( thank goodness I don't fly ) These surgeries have

kept me going and believe it or not...I still cut my lawn ( no riding mower

either ) I intend to keep going with this and no matter how down and out you

get...There's still a lot of living to do. Things will get better...It takes a

while to accept this ( RA ) as being a part of your everyday life.

Hugs,

Gail

Re: [ ] New To List

Hi ,

>I don't want to make this too long especially since I'm new to the

list...But I do want to say....NEVER GIVE UP....keep going when you feel good

....rest on your bad day's.....When you give in to RA that's when it can really

get you.

[Guest guest]

Thanks Kathy, What a wonderful group of people I have already met on the list.

We all know what each is experiencing. Everyday pain is a miserable thing, This

is a wonderful way to vent your feelings and emotions.....That alone will make

us feel better.

Gail In Al

Re: [ ] New To List

hi gail, kathy in il here 42. still trying to nail down the diagnosis, but

going towards reactive arthritis and fibromyalgia. i also have glaucoma and

an ulcer. i'm a widow and have an 18 yr old son. i've had carpal tunnel and

tarsal tunnel surgeries bilaterally. these people are great here. welcome

kathy in il

[Guest guest]

Hi gail..i'm new to the list and i think i am in denial..i went to a

rheumatologist and he tole me i have ra.. but my blood work doesn't

show positive.

i have it in my hands, wrists, knees, ankles and feet.. whatever

joint is affected on my right side is the same on my left side...i am

in constant pain and have been on plaquenel for 3 months but because

of the side effects, i had to stop taking them..and anyway i didn't

find they were helping me.

can you tell me what your symptoms are and what a " bad day " is like

for you.

patsy

> Hi Carol,

>

> Thanks for the warm welcome...I hope I can be of some help to you

newly diagnosed on the list...Since I've had this for so many years,

any of you feel free to ask me question about my experiences...I'm

certainly not a DR. or pro on the subject...But I have experienced

several surgery's due to the RA, and would be glad to answer any

questions pertaining to my years with RA.

> I agree Carol, You should have seen the DR. sooner, but I can

understand why you didn't...Sometimes I still find myself in denial

of the severity of my disease. Just try and keep a positive attitude

and never give in.

>

>

> Gail ( from north Alabama )

>

>

>

>

[Guest guest]

Hi Patsy,

Welome to the list. Sorry for the reason you joined. I'm relatively new,

don't remember exactly when I joined, but was officially diagnosed in late

January, so probably sometime around then.

I do not have positive blood work for RA either. Inflammation was present in

a bone scan and I have an elevated C-Reactive protein.

My rheumy is now thinking more along the lines of psoriatic arthritis,

which, if I understood him correctly, would be consistent with a negative RA

factor.

I too have swelling and pain in my feet, ankles, knees, hands, wrists and

shoulders. I was symptomatic for approximately 2 years before I made my

way to a rheumatologist who took one look at me and knew what was wrong.

Pretty amazing after complaining to my pcp with no results for that length

of time. I went almost a year with sleep deprivation because of the

unremitting pain when I was lying in bed.

Prednisone was a godsent, pain virtually disappeared during the months I

took it, while waiting for another drug, methotrexate, to kick in. Took

about 3 months. It is not as effective on the pain as the prednisone was,

but for the most part I feel pretty good. I haven't needed anything stronger

than Tylenol when I start flare ups of pain.

How long ago were you diagnosed?

Were you put on any other medications besides the plaquenil?

Is your rheumy going to try you on other medications?

This is a great group, you will learn a lot and find lots of compassion and

sympathy.

Suzanne

[ ] Re: New To List

>

> Hi gail..i'm new to the list and i think i am in denial..i went to a

> rheumatologist and he tole me i have ra.. but my blood work doesn't

> show positive.

>

> i have it in my hands, wrists, knees, ankles and feet.. whatever

> joint is affected on my right side is the same on my left side...i am

> in constant pain and have been on plaquenel for 3 months but because

> of the side effects, i had to stop taking them..and anyway i didn't

> find they were helping me.

>

> can you tell me what your symptoms are and what a " bad day " is like

> for you.

>

> patsy

>

>

> > Hi Carol,

> >

> > Thanks for the warm welcome...I hope I can be of some help to you

> newly diagnosed on the list...Since I've had this for so many years,

> any of you feel free to ask me question about my experiences...I'm

> certainly not a DR. or pro on the subject...But I have experienced

> several surgery's due to the RA, and would be glad to answer any

> questions pertaining to my years with RA.

> > I agree Carol, You should have seen the DR. sooner, but I can

> understand why you didn't...Sometimes I still find myself in denial

> of the severity of my disease. Just try and keep a positive attitude

> and never give in.

> >

> >

> > Gail ( from north Alabama )

[Guest guest]

Hi Patsy,

After 12 years of this...I have bad day's everyday...Especially in the

mornings. Like yourself, Both sides of my body are affected in the same joints.I

seem to have the traveling kind of RA. It attacks my shoulders and stay's for a

few months...Which I can tolerate fairly well...but as of the last 4

months...It's really attacking my knees. My DR. did x-rays and said my cartilage

wasn't worn completely out as of now......He suggested giving me the knee shots

called SYNVISC* HYLAN G-F 20...a series of three....One shot per week for 3

weeks....It's a lubrication of oil similar to that in your knee socket...If I'm

lucky enough to be one of the 80% of whom it helps, I'll b so happy. These shots

are really for those who have The OSTEO Arthritis...But he thought it might be

beneficial for me.

Patsy back to your question....My first beginning symptoms were swollen

knuckles, swollen wrists, all warm to the touch....I had 50cc of fluid drained

from my left knee...I felt tired run-down ALL the time and I ran a low grade

temp.

I've been cutting my lawn today, Although I know I'm putting stress on my sore

knee joints...And will really pay the price tomorrow...But it's these kind of

things that keep me going.

I've dealt with RA now for 12+ yrs......and The times I feel my best each day is

around 5 or 6:00 PM.

I know exactly what each of you are going through...It's an un-describable

burning pain....But we must all encourage each other. I have accepted it as my

everyday life and when I DO have a good day...I really appreciate how it used to

be.

Best wishes to all of you.

Gail

[ ] Re: New To List

Hi gail..i'm new to the list and i think i am in denial..i went to a

rheumatologist and he tole me i have ra.. but my blood work doesn't

show positive.

i have it in my hands, wrists, knees, ankles and feet.. whatever

joint is affected on my right side is the same on my left side...i am

in constant pain and have been on plaquenel for 3 months but because

of the side effects, i had to stop taking them..and anyway i didn't

find they were helping me.

can you tell me what your symptoms are and what a " bad day " is like

for you.

patsy

> Hi Carol,

>

> Thanks for the warm welcome...I hope I can be of some help to you

newly diagnosed on the list...Since I've had this for so many years,

any of you feel free to ask me question about my experiences...I'm

certainly not a DR. or pro on the subject...But I have experienced

several surgery's due to the RA, and would be glad to answer any

questions pertaining to my years with RA.

> I agree Carol, You should have seen the DR. sooner, but I can

understand why you didn't...Sometimes I still find myself in denial

of the severity of my disease. Just try and keep a positive attitude

and never give in.

>

>

> Gail ( from north Alabama )

>

>

>

>

[Guest guest]

Hi There

Just wanted to share that both my husband and I have sero negative RA,

where our blood work is negative also…we were offered doxycyline or

minocin after we refused the plaquenil because the side effects seemed

harsh .

Here is a link that might shed some light..as I do believe some kind of

DMARD is going to be needed to alleviate damage to your bones. I am not

sure your doctor offers the AP protocol but this link might give you

some insight as to why you need some kind of DMARD….but this is just my

personal opinion and situation that is shedding this light.

http://www.ra-infection-connection.com/

Sincerely

[ ] Re: New To List

Hi gail..i'm new to the list and i think i am in denial..i went to a

rheumatologist and he tole me i have ra.. but my blood work doesn't

show positive.

i have it in my hands, wrists, knees, ankles and feet.. whatever

joint is affected on my right side is the same on my left side...i am

in constant pain and have been on plaquenel for 3 months but because

of the side effects, i had to stop taking them..and anyway i didn't

find they were helping me.

can you tell me what your symptoms are and what a " bad day " is like

for you.

patsy

> Hi Carol,

>

> Thanks for the warm welcome...I hope I can be of some help to you

newly diagnosed on the list...Since I've had this for so many years,

any of you feel free to ask me question about my experiences...I'm

certainly not a DR. or pro on the subject...But I have experienced

several surgery's due to the RA, and would be glad to answer any

questions pertaining to my years with RA.

> I agree Carol, You should have seen the DR. sooner, but I can

understand why you didn't...Sometimes I still find myself in denial

of the severity of my disease. Just try and keep a positive attitude

and never give in.

>

>

> Gail ( from north Alabama )

>

>

>

>

[Guest guest]

> Gail, welcome and hello. I am 51 (until next month) and have had

RA for 15 years. I have been on all the I am on Methotrexate and

have been for at least 10 years (?) They have try everything with MX

but with no bennifit, I have joint swelling and am very careful of my

joints.

I have been in Oregon for a week helping my older sister and her

husband pack to move here and over did, so have more swelling the

last couple of days.

I think that I am luck though that I have had this not to fun disease

for that long and have very little damage, a little scary that the

Arthritis drugs don't work to well for me, that is except

methotrexate (27mg a wk). Even the Mx is not working as well as it

did.

Have read some good articles on this site.

Hope you enjoy the group. in WA>

>

>

[Guest guest]

> Welcome Gail. I was diagnosed around age 20 and am now 47. Currently I am on

> Enbrel, methotrexate,and vioxx and will be adding minocycline starting

> tomorrow. I too have a high tolerance to pain and use a hot tub for pain

> relief. Ultram also helps on the bad days. I¹m never without pain, but I¹m a

> lot better than I used to be.

> Hugs,

> a

>

>

>

> [ ] New To List

>

> Hi Everyone, I'm a new subscriber , but was diagnosed with RA when I was

> 42....That was twelve years ago. (modestly telling my age )

> Everyday is still a struggle in spite of my high tolerance to pain. I'm

> looking forward to sharing posts and reading how others cope with this

> painful joint disease.

>

> Gail

>

>

>

>

[Guest guest]

Hi Patsy,

My blood work has been negative for over 25 years, and my diagnoses is still

RA. Because it was negative I was also in denial for many years. Since

reading so much, I¹ve learned a lot about this disease and now accept that I

have RA although my blood test is negative.

I have it in both ankles, knees, shoulders, elbow (just one so far) and

wrists.

Since all the studies are saying that this disease should be treated early

and aggressively, I hope your doctor has a plan of treatment for you. 20%

of people with RA are seronegative.

My blood test shows high levels of inflammation (sed rate and CRP).

My joints are stiff, especially in the morning and after I sit. During a

flare they are hot and swollen. And they hurt! RA causes erosion of the

joint, and there are many meds that can slow it down. I¹ve had both knees

replaced already when I was 43.

I¹m looking forward to getting to know you.

Hugs,

a

On 6/15/02 2:59 AM, " justliloleme51 " <pattiw@...> wrote:

>

> Hi gail..i'm new to the list and i think i am in denial..i went to a

> rheumatologist and he tole me i have ra.. but my blood work doesn't

> show positive.

>

> i have it in my hands, wrists, knees, ankles and feet.. whatever

> joint is affected on my right side is the same on my left side...i am

> in constant pain and have been on plaquenel for 3 months but because

> of the side effects, i had to stop taking them..and anyway i didn't

> find they were helping me.

>

> can you tell me what your symptoms are and what a " bad day " is like

> for you.

>

> patsy

>

>

>> > Hi Carol,

>> >

>> > Thanks for the warm welcome...I hope I can be of some help to you

> newly diagnosed on the list...Since I've had this for so many years,

> any of you feel free to ask me question about my experiences...I'm

> certainly not a DR. or pro on the subject...But I have experienced

> several surgery's due to the RA, and would be glad to answer any

> questions pertaining to my years with RA.

>> > I agree Carol, You should have seen the DR. sooner, but I can

> understand why you didn't...Sometimes I still find myself in denial

> of the severity of my disease. Just try and keep a positive attitude

> and never give in.

>> >

>> >

>> > Gail ( from north Alabama )

>> >

>> >

>> >

>> >

>

>

>

[Guest guest]

In a message dated 6/16/02 12:04:33 PM Central Daylight Time,

paula54@... writes:

> Welcome Gail. I was diagnosed around age 20 and am now 47. Currently I am

> on

> > Enbrel, methotrexate,and vioxx and will be adding minocycline starting

> > tomorrow. I too have a high tolerance to pain and use a hot tub for pain

> > relief. Ultram also helps on the bad days. I¹m never without pain, but

> I¹m a

> > lot better than I used to be.

> > Hugs,

> > a

> >

a, I don't have a prescription for Ultram right now, but have used it in

the past. It was almost a " miracle " medication for me. I have severe Reflux

disease, causing scar tissue and ulcers in my esophagus. I can't take ANY

aspirin, ibuprofen,

antiinflammatory medications, etc.... due to the stomach and esophagus

problems. The Ultram was the first non-narcotic medication that I could

tolerate and that worked on the RA and other pain from the Lupus. Anybody

out there that has the stomach problems should ask about the Ultram. Just

putting in my two cents worth -

Alice in

Texas

[Guest guest]

Welcome Kathe.

I was also raised on a farm and very much miss the lifestyle. My favorite

was the fresh milk from the cow with all that wonderful cream. I look at

our empty fields and wish I were physically able to make use of them. Sorry

about your loss of the jewelry making. I hope one day your meds will work

and allow you to do it again. Has your doctor considered remicade? Since

it acts a lot like enbrel, it may be an option if your insurance will cover

it. Enbrel has made a world of difference to me, and I wish there were

enough for everyone.

I hope this shortage is over soon.

Don¹t worry about rambling here. We¹re a pretty gabby group!

Hugs,

a

On 6/15/02 1:36 PM, " Kathe Sabetzadeh " <lv2ryd@...> wrote:

> Hi - I have been reading the posts now for about a

> month and have found this group to be very helpful. I

> tend to ramble on but bear with me as I give you some

> STATs!

>

> I am 48 at the end of June and was diagnosed 3 years

> ago. I had been working for 2 years with a friend

> designing and handmaking jewelry, had aching joints in

> my fingers but attributed that to doing too much

> jewelry - lots of small, very intricate work. Prior to

> that, I had worked many years in medical transcribing

> so my hands and wrists have had quite the workout over

> the years! Then one day, the pain did not go away,

> increased overnight to almost unbearable, and by the

> morning my hands were like two red, swollen, hot

> little balloons. My doctor got blood work done and

> placed me on Prednisone and Motrin. When the blood

> work came back RA positive, she put me on Plaquenil

> too. I took Prednisone for only a month. Needless to

> say, the jewelry making had to stop and I lost my

> little bit of extra income. It wasn't much but did

> make me feel better to contribute to the upkeep of my

> horses (not really hubby's sport) but they are my

> therapy!

>

> The Plaquenil and Motrin did well for about 2-1/2

> years and then the RA became more aggressive attacking

> my elbows and Methotrexate was added (I was not really

> crazy for this idea but...),and Pred till the Metho

> kicked in. I was pretty good for about 3 more months,

> the RA got aggressive again this time my shoulders and

> hips, and my doctor took me off Plaq, and added Arava

> to the Metho and again more Prednisone until they

> kicked in together. She also switched the Motrin to

> Bextra. She really wants me on Embrel but you all know

> the story with that. I have been trying to avoid the

> Pred taking but after having brochitis for the past

> week and flaring bad, I gave in to the pain yesterday,

> and started Pred again last night - hate that med but

> already feel it working on my joints - and disrupting

> my sleep!

>

> We live on a small farm here in So Calif, myself, my

> husband, my son who is 18 and my daughter who is 15 -

> she helps a lot with the horses. We have assorted

> fowl - chickens, ducks, geese, turkeys, pigeons, and

> rabbits, 5 dogs and 4 horses. Quite the petting zoo.

> My husband does the heavy unloading of the hay and

> feed and my daughter picks up with the corrals and

> such when I can't do it. I try to ride as much as

> possible but it is getting a little harder to groom,

> hoof pick, and saddle (luckily my horse is short or I

> would never make it); however, I am determined to keep

> riding - it's my therapy. My husband has even built

> me a stairstep, with handrails no less, for me to

> climb up so I can mount easier and then off I go.

> When I'm riding I feel " normal " again if you can

> understand that - my daughter and I trail ride and go

> team sorting on occasion - I feel really good when I

> ride - horses are good for the soul.

>

> So, the wait for the Embrel continues - I have heard

> that maybe, maybe, by the end of the year they will be

> accepting new patients into the program. Hopefully

> sooner than that - I'm tired of being tired and achy.

> Since this RA journey has begun I have also been

> diagnosed with Raynaud's (my dad has this too, his

> mother had RA, and her male siblings suffered from

> some sort of immune system disease as far as I can

> tell - they are all dead now), I have tingling from

> time to time in my hands and fingers, I am developing

> TMJ from arthritis in my jaw, and I am developing

> cataracts which my doctor attributes in part to the

> Metho and Pred. RA - the gift that keeps on giving!

>

> Anyway, sorry to have rambled on so long, hope some of

> you have been able to hang in there to read this all!

>

> Kathe in CA

>

>

>

> __________________________________________________

>

[Guest guest]

Hi a: Thanks for the welcome. Yes, Remicade has

been brought up briefly but if I can hold out for the

Embrel I would rather do that. However, if the

current meds don't stop the progression of the

disease, we may have to rethink the Remicade option.

We don't have any cows here, although my husband has

brought up the idea of getting one - I think we have

plenty enough animals thanks - but we have more eggs

than we ever believed possible! Life here is good,

very casual and I really enjoy bringing my kids up in

this place - would have loved to have lived here as a

child myself, but I'm basically a city girl.

Kathe in CA

__________________________________________________

[Guest guest]

Thanks for the welcome and the weather link, a, And I thought I had RA for a

long time already.

My youngest daughter Who lives in Nashville was diagnosed at the age of 20

too...She's 26 now and just got married last November. I knew very well when she

started having her symptoms that she was developing RA. At least I was 42 when I

was diagnosed.

She sees a very good rheumotologist in Nashville and she's on the Remicade and

Meth. I could just cry my eyes out for her cause she's so young and wants to

have a child in about 2 years from now. Her DR. said that she could after

staying off all her meds for 4 to 6 months....In fact he told her most women

kinda go through a remission period when pregnant.

She's tall and thin and to look at her ( probably like a lot of us ) you'd

never know she has RA. But we all know that our pain is silent to others.

I also have a twin sister who developed RA about 3 years after I did. We don't

know where this came from in our immediate family ( aunts, uncles, mom, dad,

G/mother or g/dads) no traces of it in either side.

This is a warm and helpful group.

Gail

[ ] New To List

>

> Hi Everyone, I'm a new subscriber , but was diagnosed with RA when I was

> 42....That was twelve years ago. (modestly telling my age )

> Everyday is still a struggle in spite of my high tolerance to pain. I'm

> looking forward to sharing posts and reading how others cope with this

> painful joint disease.

>

> Gail

>

>

>

>

[Guest guest]

Alice,

Just my 2 cents.. My pcp prescribed ultram before I was diagnosed. This was

during the time I was in great pain, unable to sleep and begging for pain

medication so I could sleep. Didn't work at all for me. Didn't give me one

iota of relief. The worst thing was that it had an effect on me like a diet

pill! I was all reved up and ready to go! What a horrible night that was.

Didn't sleep a wink, in pain and all reved up. Stupid me, couldn't believe

it was the drug, so I tried it again, same result. Strange, cause one of my

coworkers can take one and sleep for 12 hours. I wish! Would have been

great...

My next try was lortab. It worked a little to dull the pain for a few hours,

but I felt like I was coming down off a two day drunk as the drug wore off.

That was just as horrible in its own way.

Thankfully, I haven't needed anything strong since starting treatment.

Suzanne

Re: [ ] New To List

In a message dated 6/16/02 12:04:33 PM Central Daylight Time,

paula54@... writes:

> Welcome Gail. I was diagnosed around age 20 and am now 47. Currently I

am

> on

> > Enbrel, methotrexate,and vioxx and will be adding minocycline starting

> > tomorrow. I too have a high tolerance to pain and use a hot tub for

pain

> > relief. Ultram also helps on the bad days. I¹m never without pain, but

> I¹m a

> > lot better than I used to be.

> > Hugs,

> > a

> >

a, I don't have a prescription for Ultram right now, but have used it

in

the past. It was almost a " miracle " medication for me. I have severe

Reflux

disease, causing scar tissue and ulcers in my esophagus. I can't take ANY

aspirin, ibuprofen,

antiinflammatory medications, etc.... due to the stomach and esophagus

problems. The Ultram was the first non-narcotic medication that I could

tolerate and that worked on the RA and other pain from the Lupus. Anybody

out there that has the stomach problems should ask about the Ultram. Just

putting in my two cents worth -

Alice in

Texas

[Guest guest]

In a message dated 6/17/02 5:56:44 AM Central Daylight Time,

suzshay@... writes:

> Alice,

>

> Just my 2 cents.. My pcp prescribed ultram before I was diagnosed. This

> was

> during the time I was in great pain, unable to sleep and begging for pain

> medication so I could sleep. Didn't work at all for me. Didn't give me

> one

> iota of relief. The worst thing was that it had an effect on me like a diet

> pill! I was all reved up and ready to go! What a horrible night that was.

> Didn't sleep a wink, in pain and all reved up. Stupid me, couldn't believe

> it was the drug, so I tried it again, same result. Strange, cause one of my

> coworkers can take one and sleep for 12 hours. I wish! Would have been

> great...

>

> My next try was lortab. It worked a little to dull the pain for a few

> hours,

> but I felt like I was coming down off a two day drunk as the drug wore off.

> That was just as horrible in its own way.

>

> Thankfully, I haven't needed anything strong since starting treatment.

>

> Suzanne

>

>

Suzanne, Isn't it strange how medications work with one person and do

nothing (or worse) for the next? I take darvocet if I'm having a really bad

day, but it's kinda like taking a really strong tylenol, doesn't make me

sleepy and only works for a little while. If my mother takes ANYTHING with

even a grain of codeine in it, she hallucinates, throws up, etc.... I just

had a friend tell me that Prevacid did nothing for one of her family members,

but it's the only thing that has stopped the burn from the acid reflux for

more than just a couple of hours, in the last twenty years!

Alice in Texas