Re: I Have Severe RA & A Question To Ask

[Guest guest]

Hi Barbara, Welcome to the group. I'm Steph in Virginia. I'm 29 and was dx'd with severe RA in 1999 when I was 22. I take Methotrexate, Folic Acid, Prednisone, Ibuprofen, Flexerill, Azulfidine & Remicade. Before I was dx'd I used to dance (ballet, tap, jazz, etc.) I started Remicade 8 months after I was dx'd and immediately felt a difference. 2 years after my diagnosis tried took a 6 week ballet class and struggled through half of it before I quit. My rheumy advised me to try something new, so I tried walking. I walked in a dozen 5K walks over 3 years & walked the Honolulu Marathon in 2001 and the Bermuda half marathon in 2002 while raising $ for the Arthritis Fdtn. My most recent walk was my local Arthritis Walk, which I helped plan. I understand your apprehension to another medication and your questioning of the truth in the ads. If I were in your shoes I would feel the same way. Remicade doesn't give me back all of who I was

before I got RA, but I'm grateful for the small parts of "pre-RA Steph" it gives me and the new doors it has opened. Take care, Steph in VA Barbara <ash_belle@...> wrote: Hi everyone. My name is Barbara. I'm 41 years old. I was diagnosed with RA 6 years ago (I still work full time). My RA is severe. I have good days & bad days. I take Plaquenil, Methotrexate, Naprosyn, Darvocet, Medrol & Folic Acid. So far, that combo seems to be working

& I haven't had any major side affects from the medication. My rheumatologist is considering adding Remicade because the xrays of my wrists show arthritic erosion, so he wants me to get them xrayed every 6 months to watch for any changes. Right away I thought...oh great, more medication. I see the commercials on tv for various RA meds showing people who have severe RA & couldn't do "anything" before taking the advertised medication. They took this miracle drug & now they can go water skiing and get on their knees to do gardening. First of all, water skiing is out of the question for me as I cannot swim. If I could do that before my RA diagnosis, I definitely could not do that now & would probably end up at the local E/R from excruciating pain in every joint of my body. I cannot get on my knees with my RA, so I cannot imagine one with severe RA able to do gardening on their knees & to be out in the direct sunlight for an extended time period.

When I go to church, I cannot kneel to pray so I position myself on the edge of the pew to "kneel" as best as I can. Of course I am speaking from my own experience with my severe RA. Is it me or does it seem like the people in these commercials advertising these (expensive) RA drugs that the activities they're able to do since taking that medication are somewhat unrealistic? If anyone here is on the combo of Methotrexate & Remicade, please let me know how that is working for you. I would appreciate any advice.Best wishes to all of you for a pain free day,Barbaraemail: ash_belle ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ The 2007Charlottesville Arthritis Walk was a success! We raised almost $30,000 for research & programs for people with arthritis! My team, Team Lakeside, raised about $200 and money is still

coming in through May! "Never underestimate the power of a small, dedicated group of people to change the world -- indeed, it's the only thing that ever has." (Margaret Mead)

Sick sense of humor? Visit TV's Comedy with an Edge to see what's on, when.

[Guest guest]

Hi! Anyone in andria VA area know of a good

OB/GYN? My husband and I would like to get pregnant

for the first time next year and I need to find

someone who has experience with pregnancy and RA.

Thanks,

Mosoriak

andria VA

--- DeNicola-

<stephdenicola@...> wrote:

> Hi Barbara,

> Welcome to the group. I'm Steph in Virginia.

> I'm 29 and was dx'd with severe RA in 1999 when I

> was 22. I take Methotrexate, Folic Acid, Prednisone,

> Ibuprofen, Flexerill, Azulfidine & Remicade. Before

> I was dx'd I used to dance (ballet, tap, jazz, etc.)

> I started Remicade 8 months after I was dx'd and

> immediately felt a difference. 2 years after my

> diagnosis tried took a 6 week ballet class and

> struggled through half of it before I quit. My

> rheumy advised me to try something new, so I tried

> walking. I walked in a dozen 5K walks over 3 years &

> walked the Honolulu Marathon in 2001 and the Bermuda

> half marathon in 2002 while raising $ for the

> Arthritis Fdtn. My most recent walk was my local

> Arthritis Walk, which I helped plan. I understand

> your apprehension to another medication and your

> questioning of the truth in the ads. If I were in

> your shoes I would feel the same way. Remicade

> doesn't give me back all of who I was before I got

> RA, but I'm grateful for the small

> parts of " pre-RA Steph " it gives me and the new

> doors it has opened.

>

> Take care,

> Steph in VA

>

> Barbara <ash_belle@...> wrote:

> Hi everyone. My name is Barbara. I'm 41

> years old. I was diagnosed with RA 6 years ago (I

> still work full time). My RA is severe. I have good

> days & bad days. I take Plaquenil, Methotrexate,

> Naprosyn, Darvocet, Medrol & Folic Acid. So far,

> that combo seems to be working & I haven't had any

> major side affects from the medication. My

> rheumatologist is considering adding Remicade

> because the xrays of my wrists show arthritic

> erosion, so he wants me to get them xrayed every 6

> months to watch for any changes. Right away I

> thought...oh great, more medication. I see the

> commercials on tv for various RA meds showing people

> who have severe RA & couldn't do " anything " before

> taking the advertised medication. They took this

> miracle drug & now they can go water skiing and get

> on their knees to do gardening. First of all, water

> skiing is out of the question for me as I cannot

> swim. If I could do that before my RA diagnosis, I

> definitely could not do that now &

> would probably end up at the local E/R from

> excruciating pain in every joint of my body. I

> cannot get on my knees with my RA, so I cannot

> imagine one with severe RA able to do gardening on

> their knees & to be out in the direct sunlight for

> an extended time period. When I go to church, I

> cannot kneel to pray so I position myself on the

> edge of the pew to " kneel " as best as I can. Of

> course I am speaking from my own experience with my

> severe RA. Is it me or does it seem like the people

> in these commercials advertising these

> (expensive) RA drugs that the activities they're

> able to do since taking that medication are somewhat

> unrealistic? If anyone here is on the combo of

> Methotrexate & Remicade, please let me know how that

> is working for you. I would appreciate any advice.

> Best wishes to all of you for a pain free day,

> Barbara

>

> email: ash_belle@...

>

>

>

>

>

>

>

>

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

> The 2007Charlottesville Arthritis Walk was a

> success!

> We raised almost $30,000 for research & programs

> for people with arthritis! My team, Team Lakeside,

> raised about $200 and money is still coming in

> through May!

>

> " Never underestimate the power of a small,

> dedicated group of people to change the world --

> indeed, it's the only thing that ever has. "

> (Margaret Mead)

>

>

>

>

>

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

> Sick sense of humor? Visit TV's Comedy with

> an Edge to see what's on, when.

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[Guest guest]

In a message dated 5/19/2007 4:12:32 P.M. Pacific Daylight Time, stephdenicola@... writes:

.. Is it me or does it seem like the people in these commercials advertising these (expensive) RA drugs that the activities they're able to do since taking that medication are somewhat unrealistic? If anyone here is on the combo of Methotrexate & Remicade, please let me know how that is working for you. I would appreciate any advice.Best wishes to all of you for a pain free day,

I think these medications do make a difference. I am taking Arava and Enbrel (as well as many others- NSAIDs, baclofen, etc. etc.) and they DO make a difference. I would give it a shot.(pun unintended).

AbbySee what's free at AOL.com.

[Guest guest]

Someone wrote: Is it me or does it seem like the people in these commercials advertising these (expensive) RA drugs that the activities they're able to do since taking that medication are somewhat unrealistic?

Ardeith writes: I'm going to pay more attention to the commercials.....I have had the impression they were aimed at folks with osteo-arthritis, more than those of us with RA, or with severe RA. Celebrex is all that kept me out of a wheel-chair for several years. I was fortunate to be in on the original drug study for Celebrex and it worked so well for a long time. But my RA became aggressive again, and I went on Enbrel..... which, so far, is still keeping me out of a wheelchair most times. I use the store's go-buggy when I go shopping, and my own go-buggy when I want to go to the flea market. If not for those electric "ponies" I couldn't do many things I enjoy.

I don't need a wheelchair, yet, but I can't be on my feet for more that a few minutes at a time......and it's not my feet that hurt....it's the combined osteo and RA.....in my spine.

Standing up is just not a joy........

Ardy

[Guest guest]

Hello ! Can you stand to go to Fairfax? Oh wait they have an office in andria! Go to http://www.northernvirginiagyn.com/ and try to see Dr. Damon Hou. He is the widow of my rheumy that died, Dr. Lawson (he's young Dr. Lawson died at age 48). Dr. Hou specializes in high risk pregnancies, especially RA. Dr. Lawson told me I should see him before he died(but I'm not ready for kids yet). Take care, Steph in Charlottesville, VA Emge Mosoriak <lemge1@...> wrote: Hi! Anyone in andria VA area know of a goodOB/GYN? My husband and I would like to get pregnantfor the first time next year and I need to findsomeone who has experience with pregnancy and RA.Thanks, Mosoriakandria VA--- DeNicola-<stephdenicola > wrote:> Hi Barbara,> Welcome to the group. I'm Steph in Virginia.> I'm 29 and was dx'd with severe RA in 1999 when I> was 22. I take Methotrexate, Folic Acid, Prednisone,> Ibuprofen, Flexerill, Azulfidine & Remicade. Before> I was dx'd I used to dance (ballet, tap, jazz, etc.)> I started Remicade 8 months after I was dx'd and> immediately felt a difference. 2 years after my> diagnosis tried took a 6 week ballet class

and> struggled through half of it before I quit. My> rheumy advised me to try something new, so I tried> walking. I walked in a dozen 5K walks over 3 years & > walked the Honolulu Marathon in 2001 and the Bermuda> half marathon in 2002 while raising $ for the> Arthritis Fdtn. My most recent walk was my local> Arthritis Walk, which I helped plan. I understand> your apprehension to another medication and your> questioning of the truth in the ads. If I were in> your shoes I would feel the same way. Remicade> doesn't give me back all of who I was before I got> RA, but I'm grateful for the small> parts of "pre-RA Steph" it gives me and the new> doors it has opened.> > Take care,> Steph in VA > > Barbara <ash_belle > wrote:> Hi everyone. My name is Barbara. I'm 41>

years old. I was diagnosed with RA 6 years ago (I> still work full time). My RA is severe. I have good> days & bad days. I take Plaquenil, Methotrexate,> Naprosyn, Darvocet, Medrol & Folic Acid. So far,> that combo seems to be working & I haven't had any> major side affects from the medication. My> rheumatologist is considering adding Remicade> because the xrays of my wrists show arthritic> erosion, so he wants me to get them xrayed every 6> months to watch for any changes. Right away I> thought...oh great, more medication. I see the> commercials on tv for various RA meds showing people> who have severe RA & couldn't do "anything" before> taking the advertised medication. They took this> miracle drug & now they can go water skiing and get> on their knees to do gardening. First of all, water> skiing is out of the question for me as I

cannot> swim. If I could do that before my RA diagnosis, I> definitely could not do that now & > would probably end up at the local E/R from> excruciating pain in every joint of my body. I> cannot get on my knees with my RA, so I cannot> imagine one with severe RA able to do gardening on> their knees & to be out in the direct sunlight for> an extended time period. When I go to church, I> cannot kneel to pray so I position myself on the> edge of the pew to "kneel" as best as I can. Of> course I am speaking from my own experience with my> severe RA. Is it me or does it seem like the people> in these commercials advertising these > (expensive) RA drugs that the activities they're> able to do since taking that medication are somewhat> unrealistic? If anyone here is on the combo of> Methotrexate & Remicade, please let me know how that> is

working for you. I would appreciate any advice.> Best wishes to all of you for a pain free day,> Barbara> > email: ash_belle > > > > > > > >~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~> The 2007Charlottesville Arthritis Walk was a> success! > We raised almost $30,000 for research & programs> for people with arthritis! My team, Team Lakeside,> raised about $200 and money is still coming in> through May!> > "Never underestimate the power of a small,> dedicated group of people to change the world --> indeed, it's the only thing that ever has."> (Margaret Mead)> > > > > > ---------------------------------> Sick sense of humor? Visit TV's Comedy

with> an Edge to see what's on, when. __________________________________________________________No need to miss a message. Get email on-the-go with for Mobile. Get started.http://mobile./mail ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ The 2007Charlottesville Arthritis Walk was a success! We raised almost $30,000 for research & programs for people with arthritis! My team, Team Lakeside, raised about $200 and money is still

coming in through May! "Never underestimate the power of a small, dedicated group of people to change the world -- indeed, it's the only thing that ever has." (Margaret Mead)

Don't be flakey. Get for Mobile and always stay connected to friends.

[Guest guest]

Barbara

I'm on Enbrel, not Remicade. I was hesitant to go on it when my doc

suggested it. I thought I was doing fairly well on MTX alone. There

were things I couldn't do, but I didn't feel like I was ready for one

of the big guns. My rheumy finally convinced me that since I still

had visible immflamation, joint damage was still occuring and I

needed stronger meds.

That was about nine months ago, and I'm glad I listened to him.

Enbrel has helped me more than I thought it would. I'm almost, not

quite, but almost back to where I was pre-RA. After being on Enbrel

for about two months, I was able to take my rings off my finger for

the first time in a year and a half. I'm also able to get up and

down off of the floor fairly easily now--something that was quite a

struggle before. I can actually see my ankles!

I think it's worth a try, if for nothing else to stop or slow down

the progression of joint damage. Once you have joint damage it's

there. Personally I want to prevent or postpone the damage as long

as I can.

Good luck with your decision!

dordale

>

> Hi everyone. My name is Barbara. I'm 41 years old. I was

diagnosed

> with RA 6 years ago (I still work full time). My RA is severe. I

> have good days & bad days.

>

> I take Plaquenil, Methotrexate, Naprosyn, Darvocet, Medrol & Folic

> Acid. So far, that combo seems to be working & I haven't had any

> major side affects from the medication. My rheumatologist is

> considering adding Remicade because the xrays of my wrists show

> arthritic erosion, so he wants me to get them xrayed every 6 months

> to watch for any changes. Right away I thought...oh great, more

> medication.

>

> I see the commercials on tv for various RA meds showing people who

> have severe RA & couldn't do " anything " before taking the

advertised

> medication. They took this miracle drug & now they can go water

> skiing and get on their knees to do gardening. First of all, water

> skiing is out of the question for me as I cannot swim. If I could

do

> that before my RA diagnosis, I definitely could not do that now &

> would probably end up at the local E/R from excruciating pain in

> every joint of my body. I cannot get on my knees with my RA, so I

> cannot imagine one with severe RA able to do gardening on their

knees

> & to be out in the direct sunlight for an extended time period.

>

> When I go to church, I cannot kneel to pray so I position myself on

> the edge of the pew to " kneel " as best as I can. Of course I am

> speaking from my own experience with my severe RA. Is it me or

does

> it seem like the people in these commercials advertising these

> (expensive) RA drugs that the activities they're able to do since

> taking that medication are somewhat unrealistic?

>

> If anyone here is on the combo of Methotrexate & Remicade, please

let

> me know how that is working for you. I would appreciate any advice.

>

> Best wishes to all of you for a pain free day,

>

> Barbara

>

> email: ash_belle@...

>