Re: I'm wondering what is next.

[Guest guest]

Dearest - I am on the same but more also. Have you discussed being put on a biologic? These drugs bind to one of many inflammation proteins in the disease process and interfere with the message there. TNF binding drugs like Remicade (infusion by IV once every 8 weeks) make a huge difference for many. There are also injectibles which are not my personal preference, siting site reaction allergies and the IM injection itself which is a bit painful. There are also new drugs coming called Rituxan and MRA. One binds with IL-6 which is another key to inflammation and a B cell binder which may also work. All these drugs have come about because of the massive funding done by the CDC etc over the AIDS epidemic. These binding drugs all affect the immune system and try to interfere with its chain reaction. Add remicade to the mix and you will find some relief I think. I know I have. You may not look like it outside but all of us KNOW your suffering and frustration. Hang in there and by all means use www.google.com to enter the key words " Remicade " , " Rituxan " , " MRA " and see what comes up. Hugs Deborah

On 4/2/06, MrsCoylie <dkcoylie@...> wrote:

Hi everyone,I'm having another nasty flare. It is so strange how things can hurtso bad and look so normal.

My rheumy says I shouldn't be having flares if I take my medsproperly. I've been taking them as she says.My RA doesn't show up on blood tests. Although it sounds strange, Iwish it would. I think it would make me feel more confident in taking

all these drugs. I'm on the standard mix of Methetrexate, Plaquinel,Prednisone, Folic Acid. I'm wondering if anyone can tell me what theirDoctor tried after this mix.I also take meds, as needed for Migraines, Asthma, and Alergies.

Thank you,

[Guest guest]

Hello Deborah,

I just had my 2 year physical with my primary care physician and she

convinced me to have another rheumatologist look at my records. She

does think I'm being treated appropriatly but feels my Rheumy should

be explaining things better to me, and listening better as well. I

have to agree. Thank you for your kind words and information.

> >

> > Hi everyone,

> > I'm having another nasty flare. It is so strange how things can

hurt

> > so bad and look so normal.

> > My rheumy says I shouldn't be having flares if I take my meds

> > properly. I've been taking them as she says.

> > My RA doesn't show up on blood tests. Although it sounds strange,

I

> > wish it would. I think it would make me feel more confident in

taking

> > all these drugs. I'm on the standard mix of Methetrexate,

Plaquinel,

> > Prednisone, Folic Acid. I'm wondering if anyone can tell me what

their

> > Doctor tried after this mix.

> > I also take meds, as needed for Migraines, Asthma, and Alergies.

> > Thank you,

> >

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

Hello Deborah,

I just had my 2 year physical with my primary care physician and she

convinced me to have another rheumatologist look at my records. She

does think I'm being treated appropriatly but feels my Rheumy should

be explaining things better to me, and listening better as well. I

have to agree. Thank you for your kind words and information.

> >

> > Hi everyone,

> > I'm having another nasty flare. It is so strange how things can

hurt

> > so bad and look so normal.

> > My rheumy says I shouldn't be having flares if I take my meds

> > properly. I've been taking them as she says.

> > My RA doesn't show up on blood tests. Although it sounds strange,

I

> > wish it would. I think it would make me feel more confident in

taking

> > all these drugs. I'm on the standard mix of Methetrexate,

Plaquinel,

> > Prednisone, Folic Acid. I'm wondering if anyone can tell me what

their

> > Doctor tried after this mix.

> > I also take meds, as needed for Migraines, Asthma, and Alergies.

> > Thank you,

> >

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

I have to agree with Deborah, I would suggest a biologic as I think they are

more aggressive treatments. I think its good that you are being treated for RA

without the blood work to show it. I believe its important to treat the

symptoms

instead of waiting for something to show up in our bloodwork.

Elizabeeth

> >

> > Hi everyone,

> > I'm having another nasty flare. It is so strange how things can hurt

> > so bad and look so normal.

> > My rheumy says I shouldn't be having flares if I take my meds

> > properly. I've been taking them as she says.

> > My RA doesn't show up on blood tests. Although it sounds strange, I

> > wish it would. I think it would make me feel more confident in taking

> > all these drugs. I'm on the standard mix of Methetrexate, Plaquinel,

> > Prednisone, Folic Acid. I'm wondering if anyone can tell me what their

> > Doctor tried after this mix.

> > I also take meds, as needed for Migraines, Asthma, and Alergies.

> > Thank you,

> >

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

i take with methtake and presion and fiocla acid i take clozpame to

help clam me at night every 8 weeks i take remiced it helps make a world

of things change only thing like the meth i sleep alot after the doctor

say some do even doring remiced i sleep.

hey ask you doctor about it they do it in my doctors clicint and i get 1

refill for the colzpame i take 4 at bed time it just helps me sleep when

i can but sometime the pain so bad i dont sleep right it rained so i

been resting alot the doctor say rest is good and eating is good i hope

you get to feeling better tonight i hurt but do the rain we had here...

so how is everyone tonight... email me if you like

angela

i also have pc email right not useing pc cant sit in my chair log time

but when i get better i give my pc email to all who has massger...

i have had this sence 12 years old but got bad the older i got but my ra

doctor wont let me give up

~ .. Siggiez Tag Sig Maker .. ~

*HUGS* TOTAL! give

angelafromky more *HUGS* Get hugs

[Guest guest]

I added Remicade next and that allowed me

to get off Prednisone. I get my next infusion tomorrow and I’m doing so

well we will reduce the amount. We started with 3 mg Remicade per kilogram

body weight and had to go up to 6 mg/kg to get off Prednisone. Most people use

one of the three TNF biologics, Enbrel, Humira, and Remicade. They are

expensive and often insurance handles Remicade differently from the other two

so often that determines what people use.

You really need a rheumatologist who

recognizes your pain and tries to stop it. You might seek a second opinion.

God bless.

From: Rheumatoid Arthritis [mailto:Rheumatoid Arthritis ] On Behalf Of MrsCoylie

Sent: Sunday, April 02, 2006 8:15

AM

Rheumatoid Arthritis

Subject:

I'm wondering what is next.

Hi everyone,

I'm having another nasty flare. It is so

strange how things can hurt

so bad and look so normal.

My rheumy says I shouldn't be having flares if I

take my meds

properly. I've been taking them as she says.

My RA doesn't show up on blood tests. Although it

sounds strange, I

wish it would. I think it would make me feel more

confident in taking

all these drugs. I'm on the standard mix of

Methetrexate, Plaquinel,

Prednisone, Folic Acid. I'm wondering if anyone

can tell me what their

Doctor tried after this mix.

I also take meds, as needed for Migraines, Asthma,

and Alergies.

Thank you,

[Guest guest]

i my self will have too stay on poreson but went down to only 5mg but

remiiecd is 200mg but it helps

do you per meds before you take the remiieced i do to taonayal one

bendloal to help if anything happens they even check your sigs to so the

do good with my heart lugs and blood pusher and puls every 15 minuntes

even the doctor is near if any happens... so far remieced and all my

meds are helping me right now i came down with a little cold from the

rain so they told me dont take the methztake if you are down with a

illness or cold your body is hard to get ride of the illness or cold.

my doctor tells me to stay on all my other meds uitl my little cold gose

away he tells me to drink hot herbo tea with hunny and limen it i even

put sweet in low some ra act up if you get to much sguer in your body so

i had to stop geting to much of sweet i was for 5 years 130 then 115 now

way up to 1552 poounds good ffor my eating distror to,,watch out

depession dose get to you at times i know it dose me one reson my doctor

has me on clozpame 4pills 1mg at night helps my mind and body relax hey

even stress can get to your ra talk to a RA Doctor others dont know much

you have to see RA Doctor other things could happen he can treat to

help you.

i was in a wal chair in 1996 came out and to this day i thank god he

sent me to my doctor he was working the hosapitl at the time 1st time i

meet him to this day he had me in PT For over 1 year after i get more

bettter he thinking about puting me back in PT Hard work istiill have

hard time with my shoulders and legs and arms but he wants to wait to

see if i fellow his oders now 8 hours of sleep sometimes hard a nap in

the day try to walk if its not raining..

~ .. Siggiez Tag Sig Maker .. ~

*HUGS* TOTAL! give

angelafromky more *HUGS* Get hugs

[Guest guest]

Hello Karren, Same here mine dont show up here my sed rates stay fairly normal , and my rf factor is allways negitive but I stay in continous pain or flairs , with the exception of a rash on my arms and a red swollen toe and foot lately mine stays normal looking to to me anyway . john MrsCoylie <dkcoylie@...>

wrote: Hi everyone, I'm having another nasty flare. It is so strange how things can hurt so bad and look so normal. My rheumy says I shouldn't be having flares if I take my meds properly. I've been taking them as she says. My RA doesn't show up on blood tests. Although it sounds strange, I wish it would. I think it would make me feel more confident in taking all these drugs. I'm on the standard mix of Methetrexate, Plaquinel, Prednisone, Folic Acid. I'm wondering if anyone can tell me what their Doctor tried after this mix. I also take meds, as needed for Migraines, Asthma, and Alergies. Thank you,

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