Re: New here too

[Guest guest]

Welcome, Lissa! I'm sorry that you are having such a hard time right

now. It must be especially difficult to care for five small children

when you're feeling as you do.

May I ask what your doctors are waiting for? Someone should have at

least given you something for your pain by now (something other than MTX

or Plaquenil). Ideally, they also should have narrowed down the

diagnosis enough to be able to have already started you on one of the

disease-modifying antirheumatic drugs (DMARDs) in order to slow or stop

the erosive activity.

Am I to understand from what you wrote that your physicians have been

unwilling to give you an RA diagnosis? What is their best guess about

what is causing the erosions? Is psoriatic arthritis a possibility?

I'm hoping that part of the problem with your treatment is that you've

recently moved. If you currently have a primary care physician, I would

call and ask for help with your pain. There is no need to suffer for a

month more until you see the rheumatologist.

I'm saddened to hear about the death of your friend. If it isn't too

painful for you, I wonder if you wouldn't mind telling us more about her

and her struggle.

Hope you like it here,

[ ] New here too

> Hi all

> You seem a friendly bunch and I feel utterly alone so here goes!

> I have sero-negative arthalgia (joint pain) with erosions in 7 finger

> joints of 1 hand and 5 toe joints of one foot.

> I see the Rheumy next month and HOPE for MTX or plaquenil or

> SOMETHING that will make the pain go away.

> I have been pretty miserable for about 15 months now. Xrays 1 year

> ago showed no abnormalities in my hand. No other joints were xray'd.

> I think I've read every web page out there on RA. I want so

> desperately to feel good again.

> I have 5 kids ages 8, 7, 6, 4, and 2. They really deserve to have a

> mom who can play and enjoy them.

> On the up side, I qualify for a handicapped parking permit! No more

> serching for a parknig space!

> At any rate, we just moved 1000 miles and I would be appreciative of

> any support you guys can give. No one " gets " what this disease is

> about unless they have been there.

> Consequently, my dear friend and co-sufferer died last month from

> complications of RA and Fibromyalgia. She was 33. I'm not coping

> well with that one.

> I'm also not always this depressed, I SWEAR! : )

> Lissa

[Guest guest]

Welcome Lissa. I share 's surprise that you haven't been treated in

spite of all the erosion you are having. Have you been given NOTHING? No

anti-inflammatory, no pain medicine or no DMARD's?? YIKES! No wonder you

are miserable. I am also sero-negative. Enbrel is helping me quite a bit.

I raised 2 kids and know how difficult it is when you're in so much pain. I

can't imagine having to take care of 5 young children. I hope the doctor in

your new location is better than the one you left that didn't treat you.

Hopefully you will find a cocktail of meds that will help. I'm sorry about

your friend.

a

> I have sero-negative arthalgia (joint pain) with erosions in 7 finger

> joints of 1 hand and 5 toe joints of one foot.

> I see the Rheumy next month and HOPE for MTX or plaquenil or

> SOMETHING that will make the pain go away.

> I have been pretty miserable for about 15 months now. Xrays 1 year

> ago showed no abnormalities in my hand. No other joints were xray'd.

> I think I've read every web page out there on RA. I want so

> desperately to feel good again.

> I have 5 kids ages 8, 7, 6, 4, and 2. They really deserve to have a

> mom who can play and enjoy them.

> On the up side, I qualify for a handicapped parking permit! No more

> serching for a parknig space!

> At any rate, we just moved 1000 miles and I would be appreciative of

> any support you guys can give. No one " gets " what this disease is

> about unless they have been there.

> Consequently, my dear friend and co-sufferer died last month from

> complications of RA and Fibromyalgia. She was 33. I'm not coping

> well with that one.

> I'm also not always this depressed, I SWEAR! : )

> Lissa

[Guest guest]

Wow! You guys are great!!

I am on Ultracet and Vioxx. THe vioxx does help a TINY bit. The

Ultracet I can only take at night because of drowsiness. I'm just

not able to sleep with my kids running around destroying things! : )

Luckily, they start school in only 3 weeks and then I only have to

care for 2 of them all day.

Many of you will relate to the story of my Dx. In June 1997, after

the birth of my 3rd, I was miserable. Of course I was. I had a 2, 1

and newborn. It was a TON of work, I was always exhausted, I was

trapped in my house, and I was in pain in nearly every joint in my

body,and I was having severe migraines. I went to the Dr. She

tested my thyroid, told me I was depressed and sent me home with

Zoloft. I was depressed, but the anti-depressants didn't help. In

August 1997, I had a stroke. It was mild, luckily, but I spent the

next year on stroke medication. The great side effect was that I had

little joint pain.

I got pregnant with my 4th and felt like a million bucks (cortico-

steroids are released to prevent your body getting rid of the baby,

most people with RA benefit in the short term with pregnancy). That

actually continued until after the birth of #5 in 2001. I was in

some pain, but not unbearable.

Then, in Jan of 02, I started to feel bad again. Finally, in June I

went to the Dr. She xrayd my hand which was the biggest problem,

listed to me, did all my blood work, gave me celebrex and sent me

home. There were NO defects on the xrays at that time. Her

impression was RA, see a rheumy. I made an appointment in July, but

they couldn't see me until October. (a bunch of bull, if you ask

me). My original dr gave me ultram and ambien so I could get some

sleep.

A week before my appt, the rheumy's office called and informed me

they no longer accept my insurance and an initial consult would be

$300. I kept the appt. the next day, my husband got laid off from

work. Knowing that my hand xray was normal and my bloodwork

negative, I cancelled my appt. (btw, this was all on my 30th bday.

Tell me that wasn't jinxed! On my 20th bday, I got stood up for a

date. What will happen on 40th?!?)

I went back to my primary and asked to change meds and r xray the

hand. In Nov they could see the beginnings of erosion in 1 joint on

my finger, but very mild. She recommended a rheumy and I made

another appt. They had nothing available until June. UGH!!!

My primary care refused to do much else until a rheumy had been

consulted. She wouldn't even renew the pain meds. I changed Dr's.

He xrayed the hand and found 3 smooth, shallow erosions. He dx'd

osteoarthritis, told me to take ibuprofen, and Paxil, another anti-

depressant.

Dave got a job 1000 mile away and moved out while I tried to care off

kids, sell the house, etc.

We got everything doen 2 weeks before the rheumy appt. I cancelled

and moved.

I was out of my meds for over a month and really not able to get out

of bed when I finally got this latest set of xrays. This Dr seems

very concerned and willing to try DMARDs and such, but again the

blood is negative. I see the rheumy Sept 3. I think with the

radiological confirmation, I will get a lot of help now. I HOPE!

Thansk for listening, and sorry for the typos. It's been 3 hours

since I got up and my hands are still stiff.

Lissa

[Guest guest]

I've asked for Enbrel but the dr. said that there is a 6 month wait for the

supply here and that because of my insurance I have to go through the process of

certain meds before they will allow it. Can you describe the shots (I hate

needles but realize I will do anything I have to do.), how often, what

difference you've noticed, etc?

Becky

Re: [ ] New here too

Welcome Lissa. I share 's surprise that you haven't been treated in

spite of all the erosion you are having. Have you been given NOTHING? No

anti-inflammatory, no pain medicine or no DMARD's?? YIKES! No wonder you

are miserable. I am also sero-negative. Enbrel is helping me quite a bit.

I raised 2 kids and know how difficult it is when you're in so much pain. I

can't imagine having to take care of 5 young children. I hope the doctor in

your new location is better than the one you left that didn't treat you.

Hopefully you will find a cocktail of meds that will help. I'm sorry about

your friend.

a

> I have sero-negative arthalgia (joint pain) with erosions in 7 finger

> joints of 1 hand and 5 toe joints of one foot.

> I see the Rheumy next month and HOPE for MTX or plaquenil or

> SOMETHING that will make the pain go away.

> I have been pretty miserable for about 15 months now. Xrays 1 year

> ago showed no abnormalities in my hand. No other joints were xray'd.

> I think I've read every web page out there on RA. I want so

> desperately to feel good again.

> I have 5 kids ages 8, 7, 6, 4, and 2. They really deserve to have a

> mom who can play and enjoy them.

> On the up side, I qualify for a handicapped parking permit! No more

> serching for a parknig space!

> At any rate, we just moved 1000 miles and I would be appreciative of

> any support you guys can give. No one " gets " what this disease is

> about unless they have been there.

> Consequently, my dear friend and co-sufferer died last month from

> complications of RA and Fibromyalgia. She was 33. I'm not coping

> well with that one.

> I'm also not always this depressed, I SWEAR! : )

> Lissa

[Guest guest]

Your poor girl! Five kids is a handful. We have four and I have a home

licensed daycare. Misery loves company, huh?!?!? Ours are now 20, 16, 14, 14.

Three have either learning disabilities or other disabilities. Long story,

someone remind me later to tell it all.

I've always been a tired person and when ours were little I thought it was

normal to be exhausted and in pain from lifting, carrying babies two at a time

(twins) and everything else that went with it like kneeling on the floor all the

time. Then of course I thought I have a daycare and of course I'm tired, should

be, that's normal. Only last year when a friend who also has a daycare referred

a family to me because of her medical condition (RA and Lupus) did I realize I

had something really going on medically. She described her symptoms and it was

like she was describing me 100%. She told me to go to the internist and what

tests to ask for. The dr. humored me of course and was shocked to find out my

RA levels. We were in Pigeon Forge, Tennessee on vacation when he called me

amazed that something really showed up. Before it was thyroid testing and

whatever else they run. I too had been put on anti-depressants (who wouldn't

with so many kids) a few years ago (Celexa) because a different doctor told me I

was depressed with my family's health issues. I kept telling him I wasn't

depressed, just TIRED. I figured, well, he's the doctor so he knows. I later

started with this internist and he immediately ordered a sleep study. I have

sleep apnea, quit breathing on the average of 40 times an hour and was put on a

CPAP machine. That helped but I'm still tired and in pain. I have been slowly

weaned off the Celexa because turns out I was right, I am tired.

Lissa, don't worry about turning 40. Seems that 39 was worse than 40. I called

#40 the 11th anniversary of my 29th birthday........

Becky

[ ] Re: New here too

Wow! You guys are great!!

I am on Ultracet and Vioxx. THe vioxx does help a TINY bit. The

Ultracet I can only take at night because of drowsiness. I'm just

not able to sleep with my kids running around destroying things! : )

Luckily, they start school in only 3 weeks and then I only have to

care for 2 of them all day.

Many of you will relate to the story of my Dx. In June 1997, after

the birth of my 3rd, I was miserable. Of course I was. I had a 2, 1

and newborn. It was a TON of work, I was always exhausted, I was

trapped in my house, and I was in pain in nearly every joint in my

body,and I was having severe migraines. I went to the Dr. She

tested my thyroid, told me I was depressed and sent me home with

Zoloft. I was depressed, but the anti-depressants didn't help. In

August 1997, I had a stroke. It was mild, luckily, but I spent the

next year on stroke medication. The great side effect was that I had

little joint pain.

I got pregnant with my 4th and felt like a million bucks (cortico-

steroids are released to prevent your body getting rid of the baby,

most people with RA benefit in the short term with pregnancy). That

actually continued until after the birth of #5 in 2001. I was in

some pain, but not unbearable.

Then, in Jan of 02, I started to feel bad again. Finally, in June I

went to the Dr. She xrayd my hand which was the biggest problem,

listed to me, did all my blood work, gave me celebrex and sent me

home. There were NO defects on the xrays at that time. Her

impression was RA, see a rheumy. I made an appointment in July, but

they couldn't see me until October. (a bunch of bull, if you ask

me). My original dr gave me ultram and ambien so I could get some

sleep.

A week before my appt, the rheumy's office called and informed me

they no longer accept my insurance and an initial consult would be

$300. I kept the appt. the next day, my husband got laid off from

work. Knowing that my hand xray was normal and my bloodwork

negative, I cancelled my appt. (btw, this was all on my 30th bday.

Tell me that wasn't jinxed! On my 20th bday, I got stood up for a

date. What will happen on 40th?!?)

I went back to my primary and asked to change meds and r xray the

hand. In Nov they could see the beginnings of erosion in 1 joint on

my finger, but very mild. She recommended a rheumy and I made

another appt. They had nothing available until June. UGH!!!

My primary care refused to do much else until a rheumy had been

consulted. She wouldn't even renew the pain meds. I changed Dr's.

He xrayed the hand and found 3 smooth, shallow erosions. He dx'd

osteoarthritis, told me to take ibuprofen, and Paxil, another anti-

depressant.

Dave got a job 1000 mile away and moved out while I tried to care off

kids, sell the house, etc.

We got everything doen 2 weeks before the rheumy appt. I cancelled

and moved.

I was out of my meds for over a month and really not able to get out

of bed when I finally got this latest set of xrays. This Dr seems

very concerned and willing to try DMARDs and such, but again the

blood is negative. I see the rheumy Sept 3. I think with the

radiological confirmation, I will get a lot of help now. I HOPE!

Thansk for listening, and sorry for the typos. It's been 3 hours

since I got up and my hands are still stiff.

Lissa

[Guest guest]

Becky,

Check with your dr. again. There was a wait period initially but they opened

another manufacturing plant recently and I was told (by Enbrel) that the waiting

period should be almost nonexistent soon. My rheumy fought my ins. co. to pay

for it but I did go through lots of meds first and was having problems with

prednisone and needed to get off it. I am a BIG chicken when it comes to

needles and didn't think I could do it but it really is easy. The needle is

very small and fine and you can inject either in the upper fleshy part of your

leg or your abdomen. I do it in my leg alternating and do injections twice

weekly. I feel it has definitely helped my fatigue level and it is supposed to

stop the deformity. The pain level is pretty much the same unfortunately but

that is different with each person. I was very happy with the results as the

fatigue has always been the worst part of the whole deal for me. Anyway, I hope

I helped a little. Good luck to you.

natesmom4@... wrote:

I've asked for Enbrel but the dr. said that there is a 6 month wait for the

supply here and that because of my insurance I have to go through the process of

certain meds before they will allow it. Can you describe the shots (I hate

needles but realize I will do anything I have to do.), how often, what

difference you've noticed, etc?

Becky

Re: [ ] New here too

Welcome Lissa. I share 's surprise that you haven't been treated in

spite of all the erosion you are having. Have you been given NOTHING? No

anti-inflammatory, no pain medicine or no DMARD's?? YIKES! No wonder you

are miserable. I am also sero-negative. Enbrel is helping me quite a bit.

I raised 2 kids and know how difficult it is when you're in so much pain. I

can't imagine having to take care of 5 young children. I hope the doctor in

your new location is better than the one you left that didn't treat you.

Hopefully you will find a cocktail of meds that will help. I'm sorry about

your friend.

a

> I have sero-negative arthalgia (joint pain) with erosions in 7 finger

> joints of 1 hand and 5 toe joints of one foot.

> I see the Rheumy next month and HOPE for MTX or plaquenil or

> SOMETHING that will make the pain go away.

> I have been pretty miserable for about 15 months now. Xrays 1 year

> ago showed no abnormalities in my hand. No other joints were xray'd.

> I think I've read every web page out there on RA. I want so

> desperately to feel good again.

> I have 5 kids ages 8, 7, 6, 4, and 2. They really deserve to have a

> mom who can play and enjoy them.

> On the up side, I qualify for a handicapped parking permit! No more

> serching for a parknig space!

> At any rate, we just moved 1000 miles and I would be appreciative of

> any support you guys can give. No one " gets " what this disease is

> about unless they have been there.

> Consequently, my dear friend and co-sufferer died last month from

> complications of RA and Fibromyalgia. She was 33. I'm not coping

> well with that one.

> I'm also not always this depressed, I SWEAR! : )

> Lissa

[Guest guest]

I have plenty of fleshy parts! This doctor is still in the Provigil fight for

me. I'm sure he will be real happy to go for the next battle! We are

changing insurance carriers January 1 so all three doctor's have already advised

the best of the worst. So far the fatigue has been the worst for me.

Becky

Re: [ ] New here too

Welcome Lissa. I share 's surprise that you haven't been treated in

spite of all the erosion you are having. Have you been given NOTHING? No

anti-inflammatory, no pain medicine or no DMARD's?? YIKES! No wonder you

are miserable. I am also sero-negative. Enbrel is helping me quite a bit.

I raised 2 kids and know how difficult it is when you're in so much pain. I

can't imagine having to take care of 5 young children. I hope the doctor in

your new location is better than the one you left that didn't treat you.

Hopefully you will find a cocktail of meds that will help. I'm sorry about

your friend.

a

> I have sero-negative arthalgia (joint pain) with erosions in 7 finger

> joints of 1 hand and 5 toe joints of one foot.

> I see the Rheumy next month and HOPE for MTX or plaquenil or

> SOMETHING that will make the pain go away.

> I have been pretty miserable for about 15 months now. Xrays 1 year

> ago showed no abnormalities in my hand. No other joints were xray'd.

> I think I've read every web page out there on RA. I want so

> desperately to feel good again.

> I have 5 kids ages 8, 7, 6, 4, and 2. They really deserve to have a

> mom who can play and enjoy them.

> On the up side, I qualify for a handicapped parking permit! No more

> serching for a parknig space!

> At any rate, we just moved 1000 miles and I would be appreciative of

> any support you guys can give. No one " gets " what this disease is

> about unless they have been there.

> Consequently, my dear friend and co-sufferer died last month from

> complications of RA and Fibromyalgia. She was 33. I'm not coping

> well with that one.

> I'm also not always this depressed, I SWEAR! : )

> Lissa

[Guest guest]

Lissa,

Are you on the cancellation list at the RD? It's awful to have to wait so

long to see a RD. There are shortages of rheumatologists in many areas of

the country and that is the reason for the lengthy wait. But sometimes you

can get on the cancellation list and be seen sooner. Sometimes your primary

can make the appointment and get you seen sooner than if you call yourself.

a

> Wow! You guys are great!!

> I am on Ultracet and Vioxx. THe vioxx does help a TINY bit. The

> Ultracet I can only take at night because of drowsiness. I'm just

> not able to sleep with my kids running around destroying things! : )

> Luckily, they start school in only 3 weeks and then I only have to

> care for 2 of them all day.

>

> Many of you will relate to the story of my Dx. In June 1997, after

> the birth of my 3rd, I was miserable. Of course I was. I had a 2, 1

> and newborn. It was a TON of work, I was always exhausted, I was

> trapped in my house, and I was in pain in nearly every joint in my

> body,and I was having severe migraines. I went to the Dr. She

> tested my thyroid, told me I was depressed and sent me home with

> Zoloft. I was depressed, but the anti-depressants didn't help. In

> August 1997, I had a stroke. It was mild, luckily, but I spent the

> next year on stroke medication. The great side effect was that I had

> little joint pain.

>

> I got pregnant with my 4th and felt like a million bucks (cortico-

> steroids are released to prevent your body getting rid of the baby,

> most people with RA benefit in the short term with pregnancy). That

> actually continued until after the birth of #5 in 2001. I was in

> some pain, but not unbearable.

>

> Then, in Jan of 02, I started to feel bad again. Finally, in June I

> went to the Dr. She xrayd my hand which was the biggest problem,

> listed to me, did all my blood work, gave me celebrex and sent me

> home. There were NO defects on the xrays at that time. Her

> impression was RA, see a rheumy. I made an appointment in July, but

> they couldn't see me until October. (a bunch of bull, if you ask

> me). My original dr gave me ultram and ambien so I could get some

> sleep.

>

> A week before my appt, the rheumy's office called and informed me

> they no longer accept my insurance and an initial consult would be

> $300. I kept the appt. the next day, my husband got laid off from

> work. Knowing that my hand xray was normal and my bloodwork

> negative, I cancelled my appt. (btw, this was all on my 30th bday.

> Tell me that wasn't jinxed! On my 20th bday, I got stood up for a

> date. What will happen on 40th?!?)

>

> I went back to my primary and asked to change meds and r xray the

> hand. In Nov they could see the beginnings of erosion in 1 joint on

> my finger, but very mild. She recommended a rheumy and I made

> another appt. They had nothing available until June. UGH!!!

>

> My primary care refused to do much else until a rheumy had been

> consulted. She wouldn't even renew the pain meds. I changed Dr's.

> He xrayed the hand and found 3 smooth, shallow erosions. He dx'd

> osteoarthritis, told me to take ibuprofen, and Paxil, another anti-

> depressant.

>

> Dave got a job 1000 mile away and moved out while I tried to care off

> kids, sell the house, etc.

>

> We got everything doen 2 weeks before the rheumy appt. I cancelled

> and moved.

>

> I was out of my meds for over a month and really not able to get out

> of bed when I finally got this latest set of xrays. This Dr seems

> very concerned and willing to try DMARDs and such, but again the

> blood is negative. I see the rheumy Sept 3. I think with the

> radiological confirmation, I will get a lot of help now. I HOPE!

>

> Thansk for listening, and sorry for the typos. It's been 3 hours

> since I got up and my hands are still stiff.

>

> Lissa

>

>

>

>

>

[Guest guest]

There was a wait but it is over. The shots are not bad at all. They are

subcutaneous (under the skin) so the needle doesn't go in very deep. The

needle is small and I hardly feel it. I'm lucky to have a husband that

gives me the injection in the back of my arm.

a

> I've asked for Enbrel but the dr. said that there is a 6 month wait for the

> supply here and that because of my insurance I have to go through the process

> of certain meds before they will allow it. Can you describe the shots (I hate

> needles but realize I will do anything I have to do.), how often, what

> difference you've noticed, etc?

>

> Becky

[Guest guest]

My husband used to give my son allergy shots so I would want him to do it for me

until I could get comfortable with it.

Becky

Re: [ ] New here too

There was a wait but it is over. The shots are not bad at all. They are

subcutaneous (under the skin) so the needle doesn't go in very deep. The

needle is small and I hardly feel it. I'm lucky to have a husband that

gives me the injection in the back of my arm.

a

> I've asked for Enbrel but the dr. said that there is a 6 month wait for the

> supply here and that because of my insurance I have to go through the

process

> of certain meds before they will allow it. Can you describe the shots (I

hate

> needles but realize I will do anything I have to do.), how often, what

> difference you've noticed, etc?

>

> Becky

[Guest guest]

,

Welcome !!!! I am sorry for your dx of RA, but you come to the

right place. This is a wonderful group for information, and for

support. That is so wonderful you adopted a little girl, I know she

is so precious. She will fill your life so full of joy. Are you on

any other meds besides mtx? Make sure you take Folic acid.

hugs, Tawny

--- In , " natsmom823 " <natsmom823@...>

wrote:

>

> Hi and Happy Friday everyone.

> My name is and I was diagnosed with RA about a month ago after

> about 3 months of tests.

>

> I am a single mom of a beautiful 19 month old girl that I adopted

from

> China back in August. She is God's blessing in my life, and what

> keeps me going!!

>

> I am still in the learning process about what all of this means.

And

> figuring out what my limits are before the exhaustion hits.

>

> I work full time and used to be very active..running and swimming

> especially. I still am as active as I can be, with a curious little

> girl who now walks/runs everywhere.

>

> I am on methotrexate. I take it on Friday nights as to not

interrupt

> my work week. I am having horrible brain fog for 24 hours. Also

late

> last Friday night I was hyperventilating a little bit. Is this

> normal? Does it get better with time?

>

> Also, has anyone found that a change in diet helped?

>

> Wishing everyone a great weekend,

>

>

[Guest guest]

Hi Tawny.

Thank you.

Yes my daughter is amazing (spoken like a mother--ha), at 1 yr old

when I brought her home in Aug she was 12 lbs and could barely sit up

on her own. She is now 19 lbs and running around!

I am also on relafen.

I am taking 400 microrgams of folic acid a day, but this week have

gotten a bunch of sores in my mouth...is this from the mtx? Should I

up my folic acid intake?

> >

> > Hi and Happy Friday everyone.

> > My name is and I was diagnosed with RA about a month ago after

> > about 3 months of tests.

> >

> > I am a single mom of a beautiful 19 month old girl that I adopted

> from

> > China back in August. She is God's blessing in my life, and what

> > keeps me going!!

> >

> > I am still in the learning process about what all of this means.

> And

> > figuring out what my limits are before the exhaustion hits.

> >

> > I work full time and used to be very active..running and swimming

> > especially. I still am as active as I can be, with a curious little

> > girl who now walks/runs everywhere.

> >

> > I am on methotrexate. I take it on Friday nights as to not

> interrupt

> > my work week. I am having horrible brain fog for 24 hours. Also

> late

> > last Friday night I was hyperventilating a little bit. Is this

> > normal? Does it get better with time?

> >

> > Also, has anyone found that a change in diet helped?

> >

> > Wishing everyone a great weekend,

> >

> >

>