Question

[Guest guest]

If not in the store there, she can order it from Amazon.com.

Eva

From: Cooky Stonkey <cookee1comcast (DOT) net>

Subject: rheumatic question

" rheumatic " <rheumatic@gro u ps.com>

Date: Thursday, January 1, 2009, 4:08 PM

Happy 2009 to all of you wonderful people.

This may sound silly because why would someone push on their joints on

purpose! I have been on AP for 11 years (Minocin and Clindy IV's). I

consider myself in remission and have been for a while. I have few flares

and they don't last but 2 days or so when they do occur. BUT if I press on

my knuckles or other joints they are very sore but the soreness goes away

when I stop pressing. I'm not talking about pressing hard but like when you

wring your hands or cup your elbow. Question is.does anyone else have

this????? It seems it is only the joints that were inflamed and painful when

I had the disease.

I must say I am in quite a bit of discomfort right now. I was to have help

from a cousin at Christmas and she did not show up till all the cooking was

done! So I did a lot of dough rolling for Polish perogies and grating

potatoes for dumplings for polish hulushki. I made nut rolls and made 6

batches of pitzels. I also put on all the lights on the tree and carried

stuff too heavy for me. I'm not sure if I should increase my Minocin (I

still take 100mgms M and F). Pain meds do not help. Even anti inflams do not

help. I may just have to wait this out. For all of you debating on starting

Minocin..yes you too can do all this after you are on AP!! NO it did not

take 11 years to do this.

Enough of my whining (grin). Thanks for listening.

cooky

[Guest guest]

I don't usually eat them and I ate a lot over the holidays. Well I will

experiment after the joints are back to normal.

Thanks for the suggestion.

cooky

From: rheumatic [mailto:rheumatic ] On Behalf

Of ehgooding

Sent: Thursday, January 01, 2009 11:23 PM

rheumatic

Subject: RE: rheumatic question

Hi Cooky,

If I eat potatoes (even a small amount) my joints kill me. I see you've

been grating potatoes and wonder if that might be the cause of some of your

pain? Just a thought. El

[Guest guest]

Dolores it almost sounds like fibromyalgia. When I say I have a flare it is

usually like that along with a hand of foot joint. I have less now. I take

Ultram and Advil. When we traveled to Hawaii in October nothing helped. You

might also try Malic acid and double the dose. MSM doesn't seem to help but

if you take it for a while and stop you will notice the difference. I think

I'll start those 2 today again. I get lazy and feel good so I stop taking

them.

As for the food.my mother was the best cook in the world. I miss her a lot

and not just for her food. I wish I had paid more attention to her when she

cooked. As it was I had to experiment last year and this year I did very

well. I only make them on Christmas BUT now my husband has requested Easter

too and maybe a small amount in between J))) no way to make a small amount

of perogies.

Hope you have a good 2009.

Cooky

Hi Cooky, Wow! You made me hungry. I miss my New York apt. I lived two

blocks from a polish neighborhood and haven't had a decent perogie in

months. I wish you lived near me. I would love to learn how to make them

fresh. That and everything else you mentioned! Yum! For those who are

avoiding white flour, is there a substitute gluten free flour? Take care &

Happy New Year. Now for the serious question. You say your joints hurt.

With me it is not the joints that hurt, but the entire muscle. The term,

pain in the ass took on new meaning for me. I hurt in the long leg muscles,

the glutes, arms and neck. All the joints are doing fine. Blood tests show

that I have inflammation. Am on MP, so I take Minocin 100mg every other

day, and Zith every 10th day. In Jan or Feb, I will start back on the oral

clindamycin, thereby including all 3 antibiotics Are the muscle aches

considered a herx? They don't wax and wane. I am

always sore. I have Scleroderma. Dolores & Mike

[Guest guest]

Erythromycin must be taken on a full stomach. You will barf your guts out if

you don't. Eating does not harm the absorption.

Cooky

From: rheumatic [mailto:rheumatic ] On Behalf

Of a

Sent: Saturday, January 03, 2009 9:54 AM

rheumatic

Subject: rheumatic question

Does anyone know if it is as important for absorption with

erythromycin to take it on an empty stomach as it is with the

tetracyclines? I have been taking it on a full stomach since in the

past I wasn't able to tolerate it at all and vomited. THis time on

[Guest guest]

Cooky,

I don't know if this is what you are referring to about pressing on the

joints....

But when I go to the chiropractor sometimes he would press on a " knot " in my

muscle. It would hurt like anything. I could feel the know, and also felt when

it " popped " . Once it popped, then the muscle relaxed and my back pain would

subside.

Roni

rheumatic question

rheumatic

> Happy 2009 to all of you wonderful people. <BR><BR>> This may sound silly

because why would someone push on their joints on

> purpose! I have been on AP for 11 years (Minocin and Clindy IV's). I

> consider myself in remission and have been for a while. I have few flares

> and they don't last but 2 days or so when they do occur. BUT if I press on

> my knuckles or other joints they are very sore but the soreness goes away

> when I stop pressing. I'm not talking about pressing hard but like when you

> wring your hands or cup your elbow. Question is.does anyone else have

> this????? It seems it is only the joints that were inflamed and painful when

> I had the disease.

> I must say I am in quite a bit of discomfort right now. I was to have help

> from a cousin at Christmas and she did not show up till all the cooking was

> done! So I did a lot of dough rolling for Polish perogies and grating

> potatoes for dumplings for polish hulushki. I made nut rolls and made 6

> batches of pitzels. I also put on all the lights on the tree and carried

> stuff too heavy for me. I'm not sure if I should increase my Minocin (I

> still take 100mgms M and F). Pain meds do not help. Even anti inflams do not

> help. I may just have to wait this out. For all of you debating on starting

> Minocin..yes you too can do all this after you are on AP!! NO it did not

> take 11 years to do this.

> Enough of my whining (grin). Thanks for listening.

> cooky

>

[Guest guest]

No that is not it but I do know what you mean about having a knot. I get

them in my back sometimes.

The hurt pressing my joints is usually in my knuckles or elbows and it is

the joint or the bone not muscle or tendon. Today the only that hurts when

squeezed is my thumb and that was a bad problem before remission.

I do appreciate you thinking about this tho.

Hugs,

Cooky

From: rheumatic [mailto:rheumatic ] On Behalf

Of rbarna dejazzd.com

Sent: Saturday, January 03, 2009 6:04 PM

rheumatic

Subject: Re: rheumatic question

Cooky,

I don't know if this is what you are referring to about pressing on the

joints....

But when I go to the chiropractor sometimes he would press on a " knot " in my

muscle. It would hurt like anything. I could feel the know, and also felt

when it " popped " . Once it popped, then the muscle relaxed and my back pain

would subside.

[Guest guest]

Pamela's mixes are a very good gluten free flour.Cari

On Thu, Jan 1, 2009 at 7:47 PM, mike rosner <martysfolks2004@...>wrote:

> For those who are avoiding white flour, is there a substitute gluten

> free flour? Dolores & Mike

>

>

>

[Guest guest]

Hi ,

Elevated lymphocytes could be due to a number of factors and how

elevated they are will lead you into one direction or another.

If they're REALLY high, like in the hundreds, then I would certainly

look into leukemia as a cause but if they're just slightly elevated,

it could be from a cold or other virus (lymphocytes fight viral

infections).

Autoimmune disorders can also raise lymphocytes so I guess it all

depends on how high they are to determine how likely one cause is

over another.

Tracey

>

>

> Folks, a friend just asked me whether elevated lymphocytes are what

indicate the presence of cancer. I don't know. Do you?

>

> _________________________________________________________________

> Windows Live™: Keep your life in sync.

> http://windowslive.com/howitworks?

ocid=TXT_TAGLM_WL_t1_allup_howitworks_012009

>

>

[Guest guest]

, thanks a million.

From: traceyincanada@...

Date: Sun, 11 Jan 2009 04:15:56 +0000

Subject: [ ] Re: Question

Hi ,

Elevated lymphocytes could be due to a number of factors and how

elevated they are will lead you into one direction or another.

If they're REALLY high, like in the hundreds, then I would certainly

look into leukemia as a cause but if they're just slightly elevated,

it could be from a cold or other virus (lymphocytes fight viral

infections).

Autoimmune disorders can also raise lymphocytes so I guess it all

depends on how high they are to determine how likely one cause is

over another.

Tracey

>

>

> Folks, a friend just asked me whether elevated lymphocytes are what

indicate the presence of cancer. I don't know. Do you?

>

> __________________________________________________________

> Windows Live™: Keep your life in sync.

> http://windowslive.com/howitworks?

ocid=TXT_TAGLM_WL_t1_allup_howitworks_012009

>

>

[Guest guest]

Hello Connie

I've just been tested for it but don't have the results yet.

Best wishes

Elaine

[ ] Question

I was looking over some of the notes my Rhumatologist wrote out on my last

visit and she had written down that I had the HLAB27+ which is Ankylosing

Spondylitis I found out, and she said that it makes for weird RA. Does anyone

else have this? I would sure like to hear from you/

God Bless

Connie

[Guest guest]

 

  

________________________________

From: Elaine and <spikeandmaddie@...>

@...

Sent: Saturday, April 4, 2009 12:40:11 PM

Subject: Re: [ ] Question

Hello Connie

I've just been tested for it but don't have the results yet.

Best wishes

Elaine

[ ] Question

I was looking over some of the notes my Rhumatologist wrote out on my last visit

and she had written down that I had the HLAB27+ which is Ankylosing Spondylitis

I found out, and she said that it makes for weird RA. Does anyone else have

this? I would sure like to hear from you/

God Bless

Connie

[Guest guest]

Sorry about the empty post I hit the wrong key.  LOL

Connie

 

 

________________________________

From: Elaine and <spikeandmaddie@...>

Sent: Saturday, April 4, 2009 12:40:11 PM

Subject: Re: [ ] Question

Hello Connie

I've just been tested for it but don't have the results yet..

Best wishes

Elaine

[ ] Question

I was looking over some of the notes my Rhumatologist wrote out on my last visit

and she had written down that I had the HLAB27+ which is Ankylosing Spondylitis

I found out, and she said that it makes for weird RA. Does anyone else have

this? I would sure like to hear from you/

God Bless

Connie

[Guest guest]

Connie,

HLA-B27 is associated with ankylosing spondylitis (AS), but not RA. RA

and AS are two separate diseases.

Not an MD

On Sat, Apr 4, 2009 at 12:06 PM, Connie <conniefalaschi@...> wrote:

> I was looking over some of the notes my Rhumatologist wrote out on my

> last visit and she had written down that I had the HLAB27+ which

> is Ankylosing Spondylitis I found out, and she said that it makes for weird

> RA.  Does anyone else have this?  I would sure like to hear from you/

> God Bless

> Connie

[Guest guest]

Potassium is one of the minerals your heart needs to keep going normally. A

lot of drugs affect the potassium levels but you can get a good bit from

fruit, juices and potatoes.

[ ] Question

Hi Friends!

I have a question if anybodys blood work came back ( low potassium) I had

blood work done Friday Dr called this morning and told me to come back for

anthor blood test incase the lab made a mistake anybody with this problem? I

have been on Methotreate for 3 weeks now. I see my DR Thrusday for the first

time due to that there is no rheumy in my town. Marie

[Guest guest]

Hi Marie:

Yes, my blood showed low potassium, so I take 2 a day, and have been

doing so for quite a while. I am also low in Magnesium, so I take 2 of

those a day also. Both were found with my blood work, and they continue

to screen them each month. Always something, plus another pill or pills

to take. I keep trying to get rid of some of my meds., but it seems I

get more to take!!!!

Wishing you pain free days ahead.

Hugs,

Barbara

>

> Hi Friends!

>

> I have a question if anybodys blood work came back ( low potassium) I

had blood work done Friday Dr called this morning and told me to come

back for anthor blood test incase the lab made a mistake anybody with

this problem? I have been on Methotreate for 3 weeks now. I see my DR

Thrusday for the first time due to that there is no rheumy in my town.

Marie

>

[Guest guest]

Hi Jaunita:

It is very crucial. My RA reared its ugly head, and in 5 days I went

from a totally functioning woman, to one who could not dress myself,

feed myself, walk, etc. I was in outrageous pain, swollen all over, and

my hands swelled so bad and went into a claw like state. I thought I

had a Brain tumor, or Brain cancer. I saw my PCP the next day, and a

Rheumy the day after that.

She started me right away with 2 Pred. injections, several RX's for MTX,

Pred., pain meds, etc. She said treating it aggressively is the best

way to go. I could bearly walk, and I was using crutches. She started

me on very high doses of Pred. each day. I think I started out with

60mg. pills a day, then drecreasing as she ordered. It has been six

years since I was diag. and I have no joint or bone damage. I am also

basically pain free each day. I do have flares, but not that often, and

never as bad as my first one.

I had never heard of RA, and when I found out what it was, I was scared

to death. Now, I just take it in stride.

Wishing you pain free days ahead, and that you have a great Rheumy.

Hugs,

Barbara

>

> When for the first time you have an RA flare up...how crucial is it to

get treatment? And how long have you gals waited for treatment? I had an

injury in January and the middle of March he decided to test me. The

following week he said it was RA. It's taking long to get an appointment

for just consultation. I was reading about irreversible damages. I'm so

afraid.

>

>

> ita

>

[Guest guest]

Hi ita,

I'm very sorry for the dx of RA. I hope you can get in to see a rheumy

soon. I was dx about 7yrs ago, and it gets really frustrating. I am on

humira and mtx to help stop the progression. I'm also on a pain med to

help me. When I'm in a bad flare, I rely on prednisone for a short

time, and it helps so much.

It is very scary when your first get dx. You have come to a great

place for information, and people who understand what your going

through. You take care, and you can email me anytime, if you just need

someone to chat with.

Gentle hugs, Tawny

>

> When for the first time you have an RA flare up...how crucial is it to

get treatment? And how long have you gals waited for treatment? I had an

injury in January and the middle of March he decided to test me. The

following week he said it was RA. It's taking long to get an appointment

for just consultation. I was reading about irreversible damages. I'm so

afraid.

>

>

> ita

>

[Guest guest]

Hi Tawny,

My rheumy wants to put me on either Humira or Orencia. How has the Humira

worked for you? Any side effects? Would appreciate anything you can tell me

because I am one of those who is allergic to most meds. Also scared to death

to try something new!

Thank you!

Shay in Michigan

-- [ ] Re: Question

Hi ita,

I'm very sorry for the dx of RA. I hope you can get in to see a rheumy

soon. I was dx about 7yrs ago, and it gets really frustrating. I am on

humira and mtx to help stop the progression. I'm also on a pain med to

help me. When I'm in a bad flare, I rely on prednisone for a short

time, and it helps so much.

It is very scary when your first get dx. You have come to a great

place for information, and people who understand what your going

through. You take care, and you can email me anytime, if you just need

someone to chat with.

Gentle hugs, Tawny

>

> When for the first time you have an RA flare up...how crucial is it to

get treatment? And how long have you gals waited for treatment? I had an

injury in January and the middle of March he decided to test me. The

following week he said it was RA. It's taking long to get an appointment

for just consultation. I was reading about irreversible damages. I'm so

afraid.

>

>

> ita

>

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

[Guest guest]

i am heading there quick,too,vicki,

i don't have ra,just sjogrens,hashimotos,vitiligo,psoriasis,fibro,cfids,sleep

disorders,hpa dysfunction,etc. i have complained to my mom when i was 12 yrs old

of being tired all the time, i am 50 now and know why. i had all this stuff low

grade when i was a kid!

i'm not on any biologics yet,tried mtx,plaq,could not tolerate side effects,

will be starting enbrel soon, and on pred, not helping at all.

i read that when our immune systems over-react and over-produce immune

chemicals, as in autoimmune diseases,the extra chemicals in circulation is what

makes us so fatigued. the research was confirmed by injectiing the same immune

chemicals into cancer patients to help their immune system, and they developed

all the same horrible fatigue symptoms.i believe this injection was done long

after chemo.

take care, it is hard to hang in there most days,not to mention hormone changes,

and i still work full time,desk job luckily,

margaret

>

> I am wondering if any one else has had issues with ongoing tiredness ? I am

diagnosed with rapidly progressing RA, Fibromalgia, osteoarthritis, {which I was

unaware a person could have both RA and OA} and osteoporosis.

>

> I am on Humira, MTX, oxycontin {both extended and immediate release} Lyrica,

zolpidem, and cymbalta. My pain level remains at about 7, I have trouble staying

awake, have both a cane and walker which I need off and on, meaning sometimes I

can motivate ok and others I cannot even walk the pain is so intense. I had to

give in and go to a bathtub seat as I was falling from slips so often.

>

>

[Guest guest]

It's true that RA and Fibro, etc can cause this fog you're experiencing. For

a long time, I fought that same battle, forgetting every day and not wanting

to move. Now that I'm working on my quality of sleep, I'm getting back

toward normal. A good restful sleep is very important.

Dennis in eastexas

On Fri, Apr 10, 2009 at 8:01 AM, Vicki <gramvick@...> wrote:

>

>

> I am wondering if any one else has had issues with ongoing tiredness ? I am

> diagnosed with rapidly progressing RA, Fibromalgia, osteoarthritis, {which I

> was unaware a person could have both RA and OA} and osteoporosis.

>

> I am on Humira, MTX, oxycontin {both extended and immediate release}

> Lyrica, zolpidem, and cymbalta. My pain level remains at about 7, I have

> trouble staying awake, have both a cane and walker which I need off and on,

> meaning sometimes I can motivate ok and others I cannot even walk the pain

> is so intense. I had to give in and go to a bathtub seat as I was falling

> from slips so often.

>

> I am only 48 years old, manager of Burger King and need to be able to

> motivate myself. I find myself falling asleep while standing up, my memory

> is failing, My crew tells me things and if I don't write it down I

> completely forget the entire conversation. On my two days off a week I

> rarely even get out of bed.

>

> My Rhuemy and GP both just contribute it all to RA and Fibro telling me not

> to worry. Upping the dosages of my meds is usually their answer.

>

> I am just wondering if anyone else is having some of the same issues.

>

> Vicki

> Iowa

>

[Guest guest]

Hi Shay,

As you know meds work differently on each person. I have not had any

terrible side effects from the humira. The med stings when going on,

but only for a couple of seconds. When I first started the humira, I

would have swelling and redness at the injection site, but that doesn't

happen anymore. I really believe not taking the mtx and humira, would

have me in the bed 24-7. I do have a lot of problems with the RA, but

its because I never took any RA meds, until way later in life. I was dx

in 02, but my rheumy thinks I've had RA for a very long time. I was

scared when first dx, and then all these meds. But, I took the chance,

and I am happy. You really need to find a med that works for you, and

sometimes it takes awhile. I have thought about trying Orienca, maybe

one day. We just have to keep trying, no matter how slow we get. I

can't get out much, but just getting up in the morning, taking care of

my needs, is a blessing to me.

You take care, and know were always here. If you need someone to talk

to, email me anytime, Tawny

>

> Hi Tawny,

> My rheumy wants to put me on either Humira or Orencia. How has the

Humira

> worked for you? Any side effects? Would appreciate anything you can

tell me

> because I am one of those who is allergic to most meds. Also scared to

death

> to try something new!

> Thank you!

> Shay in Michigan

>

[Guest guest]

Vicki,

I am very fatigued! I feel its due to a part of the dieseases and meds. I also

have fibro, and I have memory loss really bad, it seems to get worse.

You have a big responsibility at work, and I know its hard for you. It's very

hard to work, and be on the medications to help you function daily. Sometimes,

one might have to change jobs, something easier, or stop working. Which I know

usually can't be done, it just really sucks.

I'm sorry your having so much trouble. I hope you can get someone who can give

you better advice. Just take care, and be strong.

Gentle Hugs, Tawny

>

> I am wondering if any one else has had issues with ongoing tiredness ? I am

diagnosed with rapidly progressing RA, Fibromalgia, osteoarthritis, {which I was

unaware a person could have both RA and OA} and osteoporosis.

>

> I am on Humira, MTX, oxycontin {both extended and immediate release} Lyrica,

zolpidem, and cymbalta. My pain level remains at about 7, I have trouble staying

awake, have both a cane and walker which I need off and on, meaning sometimes I

can motivate ok and others I cannot even walk the pain is so intense. I had to

give in and go to a bathtub seat as I was falling from slips so often.

>

> I am only 48 years old, manager of Burger King and need to be able to motivate

myself. I find myself falling asleep while standing up, my memory is failing, My

crew tells me things and if I don't write it down I completely forget the entire

conversation. On my two days off a week I rarely even get out of bed.

>

> My Rhuemy and GP both just contribute it all to RA and Fibro telling me not to

worry. Upping the dosages of my meds is usually their answer.

>

> I am just wondering if anyone else is having some of the same issues.

>

> Vicki

> Iowa

>

>

[Guest guest]

Oh, Vicki - I am right there with you. The fatigue is horrible lately for me. I

don't know how you are even able to hold down a job - I know I couldn't. This is

what my day looks like:

up at 6am

down between 8:30a-10:30a (depending on how I feel)

up at 2p-2:30p

down at 3p-4:30p

up at 5p-5:30p

down for the night around 9pm

I spend more time in bed than I do out of it and awake. I am due to have my

bloodwork repeated next week. Maybe that will show something. If not, then I see

my PC on the 21st and my Rheumy on the 29th. They will definitely be getting an

earful by then!

I take MTX, sulfasalazine and percocet for the RA. I stopped taking 3 of the 4

pills of Neurontin due to weight gain and I stopped the prednisone for the same

reason (weaned off both).

Let me know if you are able to get to the bottom of your fatigue. I'm so

frustrated as this is no way for me to live.....Doreen

I am wondering if any one else has had issues with ongoing tiredness ? I am

diagnosed with rapidly progressing RA, Fibromalgia, osteoarthritis, {which I was

unaware a person could have both RA and OA} and osteoporosis.

I am on Humira, MTX, oxycontin {both extended and immediate release} Lyrica,

zolpidem, and cymbalta. My pain level remains at about 7, I have trouble staying

awake, have both a cane and walker which I need off and on, meaning sometimes I

can motivate ok and others I cannot even walk the pain is so intense. I had to

give in and go to a bathtub seat as I was falling from slips so often.

I am only 48 years old, manager of Burger King and need to be able to motivate

myself. I find myself falling asleep while standing up, my memory is failing, My

crew tells me things and if I don't write it down I completely forget the entire

conversation. On my two days off a week I rarely even get out of bed.

My Rhuemy and GP both just contribute it all to RA and Fibro telling me not to

worry. Upping the dosages of my meds is usually their answer.

I am just wondering if anyone else is having some of the same issues.

Vicki

Iowa

[Guest guest]

I have RA, FMS,Migraines & CFS.....sometimes the CFS gets me the worse. When I

have minimal pain days...the fatigue alone kills me more. No energy or

motivation at all. I'm just so sleepy all day, yet I have insomnia at night. The

forgetfulness UGH! Don't even want to deal with phones..much less the PC. This

makes me so grumpy with the world. If it wasn't for my lil ones...I'd given up

along time ago.

ita

>

> I am wondering if any one else has had issues with ongoing tiredness ? I am

diagnosed with rapidly progressing RA, Fibromalgia, osteoarthritis, {which I was

unaware a person could have both RA and OA} and osteoporosis.

>

> I am on Humira, MTX, oxycontin {both extended and immediate release} Lyrica,

zolpidem, and cymbalta. My pain level remains at about 7, I have trouble staying

awake, have both a cane and walker which I need off and on, meaning sometimes I

can motivate ok and others I cannot even walk the pain is so intense. I had to

give in and go to a bathtub seat as I was falling from slips so often.

>

> I am only 48 years old, manager of Burger King and need to be able to motivate

myself. I find myself falling asleep while standing up, my memory is failing, My

crew tells me things and if I don't write it down I completely forget the entire

conversation. On my two days off a week I rarely even get out of bed.

>

> My Rhuemy and GP both just contribute it all to RA and Fibro telling me not to

worry. Upping the dosages of my meds is usually their answer.

>

> I am just wondering if anyone else is having some of the same issues.

>

> Vicki

> Iowa

>

>

[Guest guest]

I have been on Enbrel, not Humira. They are very similar medications.

When I had to choose between the two, I chose Enbrel, partly because

it had been around longer. I think that they have similar side

effects. Each of us reacts in our own individual way to a particular

medication, so you can't predict how you might react.

I've heard some say here that Humira stings going in, but I don't know

if that's always true or not. I still use the twice-weekly 25mg Enbrel

that I have to mix myself. It has no preservatives, so it doesn't

sting. It also seems to last longer for me.

Sue

On May 25, 2009, at 4:45 PM, Kathy Egenbacher wrote:

> HI, has anyone taken Embel and Humira? If so what are the

> differences between the two in side effects?

> thank you,

> Kathy

>