is this the best it will get?

[Guest guest]

Hi Charlotte,

I couldn't tolerate sulfasalazine and have never been on Plaquenil, so I

can't really help in that dep't. I do know that every once in a while, I try

a med that works very well for a while and then just kind of peters out.

Then we go on a hunt for the next wonder-drug that will help. Unfortunately

our bodies " get used " to how a med works after a while and we develope a

tolerance to it. However there are some new studies out now that really look

promising and there are new meds on the market every day. Hang in there. I

hope that you find your perfect " coctail " soon and begin to feel a little

more comfortable.

Love and Hugs

Stacey in PA

[Guest guest]

Hi All,

A quick question. I was diagnosed w/ RA in March and have

been on plaquinel since then. In early June the doc added 2000

mg of sulfasalazine. That made me pretty sick so I took a few

weeks off from that and started the brand name version of

sulfasalazine in early July. The brand name version is enteric

coated and doesn't upset my stomach, so I've stayed on it, along

with the plaquinel.

I've had flares on and off, maybe every week or so since I was

diagnosed. Sometimes they're accompanied by swelling,

sometimes just pain. All mostly in my hands and feet. I'm

holding up pretty well, haven't missed any work, but am totally

exhausted in the off hours and I'm losing weight (which isn't

necessarily a bad thing)

I saw the doc last week who, based on looking at my

not-so-swollen hands, said the disease wasn't really under

control, but wasn't real severe. He wants me to stay on my

current meds for another 2 months and then if things aren't

much better perhaps try methotrexate.

Has anyone had success with plaquinel and/or sulfasalazine?

Or, is it just a first-line treatment that everyone gets to satisfy

their

HMOs before something stronger and more expensive is

prescribed?

I realize I should consider myself lucky not to be in constant pain

and discomfort, but I'm wondering if I'll ever get any long term

relief.

best to all and thank you

charlotte

[Guest guest]

Hi, Charlotte.

What treatment you receive depends on your doctor, you, your disease

status, and your response to the medications. Unfortunately, insurance

is also a part of the equation.

It's sounds as if you are managing pretty well, but that things could be

improved. I would move to another drug combination if you don't feel

better in the two-month period that your doctor suggested (if it is

acceptable to you to wait that long). If you get markedly worse, I would

contact the doc immediately and think about starting something else

sooner.

Do you have any erosions or joint deformities? I hope the doctor did

baseline studies and is monitoring you carefully. You don't want to be

on milder DMARDs if destruction is occurring.

Good luck. It can get better.

[ ] is this the best it will get?

> Hi All,

>

> A quick question. I was diagnosed w/ RA in March and have

> been on plaquinel since then. In early June the doc added 2000

> mg of sulfasalazine. That made me pretty sick so I took a few

> weeks off from that and started the brand name version of

> sulfasalazine in early July. The brand name version is enteric

> coated and doesn't upset my stomach, so I've stayed on it, along

> with the plaquinel.

> I've had flares on and off, maybe every week or so since I was

> diagnosed. Sometimes they're accompanied by swelling,

> sometimes just pain. All mostly in my hands and feet. I'm

> holding up pretty well, haven't missed any work, but am totally

> exhausted in the off hours and I'm losing weight (which isn't

> necessarily a bad thing)

> I saw the doc last week who, based on looking at my

> not-so-swollen hands, said the disease wasn't really under

> control, but wasn't real severe. He wants me to stay on my

> current meds for another 2 months and then if things aren't

> much better perhaps try methotrexate.

> Has anyone had success with plaquinel and/or sulfasalazine?

> Or, is it just a first-line treatment that everyone gets to satisfy

> their

> HMOs before something stronger and more expensive is

> prescribed?

> I realize I should consider myself lucky not to be in constant pain

> and discomfort, but I'm wondering if I'll ever get any long term

> relief.

> best to all and thank you

> charlotte

[Guest guest]

Charlotte, I was put on plaquenel when I was first diagnoised 15

yrs. ago. It worked for me for about 3 years then started backing

off so the doctor wanted me to try gold shots. I did that for 3

months without change. He then put me on methotrexate, which works

the best but not completely, I have tried everything out there so far

and nothing works for me but the methotrexate.

They want to find something that works before the damage.

Hope they find something that helps you soon. Isn't it sad that

insurance won't help with some meds even if they will help your

illness.

in WA

[Guest guest]

Hi Charlotte:

I was put on Plaquenil, Prednisone, and Motrin when I

was first diagnosed 3 years ago with RA. My doctor

kept me on Pred for about a month or so to help with

the pain and swelling until the Plaquenil kicked in.

I think it took me about 6 months to really feel good

on it and I also kept taking Motrin 3 times a day. I

was able to stay on the Plaquenil and Motrin for

almost 2-1/2 years until the RA became aggressive

again. I am now on Arava, Methotrexate and Bextra

with Prednisone thrown in when I flare really bad - I

try to avoid taking it if I can. I think a lot of

doctors start you on Plaquenil because it is one of

the drugs with the least amount of side effects - you

need to get your eyes checked about every 6 months for

retinal problems - but otherwise there is no real

problem with the liver which is what most of the other

medications can adversely affect. With the

medications I am on now, I get blood work every 8

weeks to check liver enzymes - never needed any blood

work while on Plaquenil. Are you also taking any

Motrin or Bextra? Have you been offered Prednisone -

it's the drug we love to hate but it sure does help

with the pain and inflammation - maybe ask your doctor

if he or she thinks that a short course of that could

help you until the Plaquenil gives more relief. If

you don't have more relief within the next couple of

months then maybe you need something stronger but I

would have much prefered to stay on Plaquenil than to

be taking the meds I am now. As far as continuing to

have flares, I still have them and have had since

being diagnosed and the fatigue is ever present - no

matter what drugs we are on it seems we still have the

flares and fatigue. Good luck and let us know how you

are doing -

Kathe in CA

__________________________________________________

[Guest guest]

Hi in WA and Charlotte, I started on plaquenel and methotrexate when I

was first diagnosed with RA along with severall other meds..it is hard to

know what is working...but my rheummy said because I had severe RA she

wanted to start aggressively to prevent further joint damage...I have

improved so much from where I was at in the beginning...I don't know what

meds to attribute it to...the reheummy says it is the combination...I still

have pain, stiffness, swelling...but usually not incapacitating anymore...my

quality of life has absolutely improved from a year ago...so most days I

don't complain...just stretch and do some range of motion exercise (light)

before moving...I wish you both the good luck in finding a combo of meds

that works for you...I have the same insur fights...I don't understand why

they can't get that it's cheaper for them to treat aggressively rather than

have to treat more involved later...it seems a simple concept to me...oh

well...I just go day by day and try to focus on the good things...simple

pleasures, like being able to walk the 200 feet to the mailbox, getting in

the backyard to check out my tomato plants, putsy in the workshop and

yard..I no longer bike or golf and have learned new ways to get daily tasks

done...this group is a great support I don't feel like I give back

much...but appreciate the info and support being there...I hope I can give

back sometimes too...sleep is probably the biggest challenge I seem to do

the 2 hours down 1 hour up routine each night...Don't know what got me going

on this discourse....but it is 4:30 a.m....I have to get up at 6:30 for

work...so hope to see if I can find the sandman again for a few hours...hope

you have a great pain free day and find the answers you are looking

for...there are people here who have great info...and all it takes is

asking....marge

[ ] Re: is this the best it will get?

> Charlotte, I was put on plaquenel when I was first diagnoised 15

> yrs. ago. It worked for me for about 3 years then started backing

> off so the doctor wanted me to try gold shots. I did that for 3

> months without change. He then put me on methotrexate, which works

> the best but not completely, I have tried everything out there so far

> and nothing works for me but the methotrexate.

>

> They want to find something that works before the damage.

>

> Hope they find something that helps you soon. Isn't it sad that

> insurance won't help with some meds even if they will help your

> illness.

>

> in WA

>

>

>

>

[Guest guest]

Hi Charlotte...I had the stomach problems with a lot of the meds and tried a

lot of the px meds to help with nausea etc...I have settled on over the

counter gaviscon which reallyseems to help...also switching to injection mtx

rather than pills makes a diff...I talked to a local pharmacist who helped

me divide the bucket of meds into before and after I eat something and

whether to take in am or pm...it really made a diff for my stomach...hope

this helps...marge

[ ] is this the best it will get?

> Hi All,

>

> A quick question. I was diagnosed w/ RA in March and have

> been on plaquinel since then. In early June the doc added 2000

> mg of sulfasalazine. That made me pretty sick so I took a few

> weeks off from that and started the brand name version of

> sulfasalazine in early July. The brand name version is enteric

> coated and doesn't upset my stomach, so I've stayed on it, along

> with the plaquinel.

> I've had flares on and off, maybe every week or so since I was

> diagnosed. Sometimes they're accompanied by swelling,

> sometimes just pain. All mostly in my hands and feet. I'm

> holding up pretty well, haven't missed any work, but am totally

> exhausted in the off hours and I'm losing weight (which isn't

> necessarily a bad thing)

> I saw the doc last week who, based on looking at my

> not-so-swollen hands, said the disease wasn't really under

> control, but wasn't real severe. He wants me to stay on my

> current meds for another 2 months and then if things aren't

> much better perhaps try methotrexate.

> Has anyone had success with plaquinel and/or sulfasalazine?

> Or, is it just a first-line treatment that everyone gets to satisfy

> their

> HMOs before something stronger and more expensive is

> prescribed?

> I realize I should consider myself lucky not to be in constant pain

> and discomfort, but I'm wondering if I'll ever get any long term

> relief.

> best to all and thank you

> charlotte

>

>

>

>

[Guest guest]

Marge, I am so glad that you are getting good results from the

combination of Plaquinel and Methotrexate. They have tried every

combination they can with me, Plaquinel, then Plaquinel and gold

shots, then plaquinel and methotrexate, methotrexate alone (did good

on this one for a while) added to methotrexate oral up to 30 mg.,

then added sulfazaladine to methotrexate (worked for a while), then

mxt injections (no difference), added enbrel (didn't work at all),

then Remicade, 5 infusions (didn't work at all), then Kineret (didn't

work at all), now I am on methotrexate injections, 27 mg. I wake up

each morning wondering if I should set down, stand up, walk, nothing

helps, I am almost in a panic. I think reality is setting in and I

wonder what is next, it is really scary.

Getting out of the car to walk to the store the other day my husband

as me if I hurt my knee or something, I said something like " No they

just hurt. " I wanted to say " HELLO I STILL HAVE RHUEMATODOID

ARTHRITIS " . I guess if it takes 15 yrs for it to set in with me I

can't expect them to catch on any faster.

I said I wouldn't whine and here I am. I don't want my family or

anyone else to feel sorry for me I just want them to understand why I

hurt or why I am so tired.

in WA

Here I am whining and there are people like Deb in FL having such a

bad time. Hope she is better today. Still praying!

[Guest guest]

:

Wow, you have been through the mill haven't you? Is

there any medication they haven't tried? How

frustrating it must be for you - I am currently on

Methotrexate 15 mg. on Friday, Arava 20 mg. daily, and

Bextra 10 mg. 1 or 2 a day. So far, it's holding me

pretty good - still have flares and fatigue of course,

but not as bad as they have been in the past. Have

you tried Arava?

It would be nice if family and friends really

understood this disease, but I don't think it will

ever happen. My husband and kids understand to a

degree and are sympathetic on my really bad days, but

whenever my husband feels aching in his joints (he is

50 after all!) he asks if RA is contagious! Now he

says we need to go on walks together to get my joints

better - okay, will give it a try, but we live on a

killer hill so it should be interesting!

Hang in there -

Kathe in CA

__________________________________________________

[Guest guest]

Kathe, Sorry I forgot the Arava, yes I have tried Arava but didn't

work. Have been luck that I haven't had stomach problem because of

the meds. and really didn't have reactions or side affects they just

didn't work for me.

My husband is alway trying to make me better also. He gives me

little suggestions now and then, he has no clue, God love him.

Remicade sounds like it is helping a lot of folks on here.

in WA

[Guest guest]

Hi, yes I am lucky that i have found good docs...when I complain to my

Rheummy, she just smiles and says 'yes marge, you still have ra " and

proceeds to adjust meds where needed...when I see the struggle others are

having in finding a good doc...I relly feel blessed...she listens and

responds...She wants me to consider rem in Oct..because she feels it would

improve my quality life even more...I just wonder, if I should change what

seems to be working pretty well...until it's not effective anymore...I do

the same thing about thinking what to do when I first wake up...I stretch

and get my body parts moving before getting out of bed...that seems to

help...of course its' about the 3rd or 4th time each night I get up...I seem

to only sleep about 2 hours before I stiffin and hurt and have to move

around, other than being fatigued the days go pretty well...so I count

myself lucky. your " hello I still have ra " to your husband sounded just

like my rheummy telling me to get to some acceptance....and she ishelping

me learn to live with it...best I can for today...hour by hour....hope your

days get better....marge

[ ] Re: is this the best it will get?

> Marge, I am so glad that you are getting good results from the

> combination of Plaquinel and Methotrexate. They have tried every

> combination they can with me, Plaquinel, then Plaquinel and gold

> shots, then plaquinel and methotrexate, methotrexate alone (did good

> on this one for a while) added to methotrexate oral up to 30 mg.,

> then added sulfazaladine to methotrexate (worked for a while), then

> mxt injections (no difference), added enbrel (didn't work at all),

> then Remicade, 5 infusions (didn't work at all), then Kineret (didn't

> work at all), now I am on methotrexate injections, 27 mg. I wake up

> each morning wondering if I should set down, stand up, walk, nothing

> helps, I am almost in a panic. I think reality is setting in and I

> wonder what is next, it is really scary.

>

> Getting out of the car to walk to the store the other day my husband

> as me if I hurt my knee or something, I said something like " No they

> just hurt. " I wanted to say " HELLO I STILL HAVE RHUEMATODOID

> ARTHRITIS " . I guess if it takes 15 yrs for it to set in with me I

> can't expect them to catch on any faster.

>

> I said I wouldn't whine and here I am. I don't want my family or

> anyone else to feel sorry for me I just want them to understand why I

> hurt or why I am so tired.

>

> in WA

>

> Here I am whining and there are people like Deb in FL having such a

> bad time. Hope she is better today. Still praying!

>

>

>

>

[Guest guest]

Marge,

I¹m glad you have a great doctor, one that listens and wants to offer you

relief. Sleep is also my biggest challenge. I¹ve tried many meds over the

years, but am now looking for alternatives. I found one med that worked

wonders for 2 years, but then it quit (trazadone). I haven't had any luck

finding a replacement. It is much worse for you because you are working.

At least I can lay down and rest when I need to. I hope tonight is a good

night and you get some sleep.

a

> Hi, yes I am lucky that i have found good docs...when I complain to my

> Rheummy, she just smiles and says 'yes marge, you still have ra " and

> proceeds to adjust meds where needed...when I see the struggle others are

> having in finding a good doc...I relly feel blessed...she listens and

> responds...She wants me to consider rem in Oct..because she feels it would

> improve my quality life even more...I just wonder, if I should change what

> seems to be working pretty well...until it's not effective anymore...I do

> the same thing about thinking what to do when I first wake up...I stretch

> and get my body parts moving before getting out of bed...that seems to

> help...of course its' about the 3rd or 4th time each night I get up...I seem

> to only sleep about 2 hours before I stiffin and hurt and have to move

> around, other than being fatigued the days go pretty well...so I count

> myself lucky. your " hello I still have ra " to your husband sounded just

> like my rheummy telling me to get to some acceptance....and she ishelping

> me learn to live with it...best I can for today...hour by hour....hope your

> days get better....marge

[Guest guest]

(((((((())))))))))

All I can do is send you hugs. I know it¹s scary to think what the future

brings, especially when you¹re not responding to any of the meds.

I know it¹s not much consolation, but you have lots of people here that DO

get it.

Hopefully one day so will your family.

a

> Marge, I am so glad that you are getting good results from the

> combination of Plaquinel and Methotrexate. They have tried every

> combination they can with me, Plaquinel, then Plaquinel and gold

> shots, then plaquinel and methotrexate, methotrexate alone (did good

> on this one for a while) added to methotrexate oral up to 30 mg.,

> then added sulfazaladine to methotrexate (worked for a while), then

> mxt injections (no difference), added enbrel (didn't work at all),

> then Remicade, 5 infusions (didn't work at all), then Kineret (didn't

> work at all), now I am on methotrexate injections, 27 mg. I wake up

> each morning wondering if I should set down, stand up, walk, nothing

> helps, I am almost in a panic. I think reality is setting in and I

> wonder what is next, it is really scary.

>

> Getting out of the car to walk to the store the other day my husband

> as me if I hurt my knee or something, I said something like " No they

> just hurt. " I wanted to say " HELLO I STILL HAVE RHUEMATODOID

> ARTHRITIS " . I guess if it takes 15 yrs for it to set in with me I

> can't expect them to catch on any faster.

>

> I said I wouldn't whine and here I am. I don't want my family or

> anyone else to feel sorry for me I just want them to understand why I

> hurt or why I am so tired.

>

> in WA

>

> Here I am whining and there are people like Deb in FL having such a

> bad time. Hope she is better today. Still praying!

>

>

>

[Guest guest]

Well, I worked hard to stay up this evening and thought I could crash at

10:30...here it is 11 and guess who is awake? I took a pain pill for my

legs and knees and a sleeping pill...hoping it will kick in...let the dogs

out so they won't need to go out later...they would sleep through the night,

if I didn't get up to wander..poor dogs..they get up and go room to room

with me crashing until I move again...I guess I'll watch the news and then

try to sleep..6:30 will come early and it is a long day tomorrow...have an

evening meeting too. I have a van and will take a nap during the day if I

need to; but I wonder if the naps help...or mess my sleep up at night...no

naps today so it's a good chance to find out..body is tired, eyes and legs

wide awake...thanks for the wishes...hope a restful night for you too.marge

Re: [ ] Re: is this the best it will get?

> Marge,

> I¹m glad you have a great doctor, one that listens and wants to offer you

> relief. Sleep is also my biggest challenge. I¹ve tried many meds over

the

> years, but am now looking for alternatives. I found one med that worked

> wonders for 2 years, but then it quit (trazadone). I haven't had any luck

> finding a replacement. It is much worse for you because you are working.

> At least I can lay down and rest when I need to. I hope tonight is a good

> night and you get some sleep.

> a

>

>

>

> > Hi, yes I am lucky that i have found good docs...when I complain to my

> > Rheummy, she just smiles and says 'yes marge, you still have ra " and

> > proceeds to adjust meds where needed...when I see the struggle others

are

> > having in finding a good doc...I relly feel blessed...she listens and

> > responds...She wants me to consider rem in Oct..because she feels it

would

> > improve my quality life even more...I just wonder, if I should change

what

> > seems to be working pretty well...until it's not effective anymore...I

do

> > the same thing about thinking what to do when I first wake up...I

stretch

> > and get my body parts moving before getting out of bed...that seems to

> > help...of course its' about the 3rd or 4th time each night I get up...I

seem

> > to only sleep about 2 hours before I stiffin and hurt and have to move

> > around, other than being fatigued the days go pretty well...so I count

> > myself lucky. your " hello I still have ra " to your husband sounded

just

> > like my rheummy telling me to get to some acceptance....and she

ishelping

> > me learn to live with it...best I can for today...hour by hour....hope

your

> > days get better....marge

>

>

>

>

[Guest guest]

((((((((((((((((Marge))))))))))))))))))))

I’m so sorry you’re having trouble sleeping. I’ve had the same problem, and

I know how frustrating it can be. The difference is that I work at home,

and you have to go in and work all day. You may be right about the naps

being part of the problem. I’m not able to nap (never have been able to),

but my husband had sleep problems and once he gave up afternoon naps it

resolved itself nicely.

Much love,

Carol

Re: [ ] Re: is this the best it will get?

Well, I worked hard to stay up this evening and thought I could crash at

10:30...here it is 11 and guess who is awake? I took a pain pill for my

legs and knees and a sleeping pill...hoping it will kick in...let the dogs

out so they won't need to go out later...they would sleep through the night,

if I didn't get up to wander..poor dogs..they get up and go room to room

with me crashing until I move again...I guess I'll watch the news and then

try to sleep..6:30 will come early and it is a long day tomorrow...have an

evening meeting too. I have a van and will take a nap during the day if I

need to; but I wonder if the naps help...or mess my sleep up at night...no

naps today so it's a good chance to find out..body is tired, eyes and legs

wide awake...thanks for the wishes...hope a restful night for you too.marge

Re: [ ] Re: is this the best it will get?

> Marge,

> I¹m glad you have a great doctor, one that listens and wants to offer you

> relief. Sleep is also my biggest challenge. I¹ve tried many meds over

the

> years, but am now looking for alternatives. I found one med that worked

> wonders for 2 years, but then it quit (trazadone). I haven't had any luck

> finding a replacement. It is much worse for you because you are working.

> At least I can lay down and rest when I need to. I hope tonight is a good

> night and you get some sleep.

> a

>

>

>

> > Hi, yes I am lucky that i have found good docs...when I complain to my

> > Rheummy, she just smiles and says 'yes marge, you still have ra " and

> > proceeds to adjust meds where needed...when I see the struggle others

are

> > having in finding a good doc...I relly feel blessed...she listens and

> > responds...She wants me to consider rem in Oct..because she feels it

would

> > improve my quality life even more...I just wonder, if I should change

what

> > seems to be working pretty well...until it's not effective anymore...I

do

> > the same thing about thinking what to do when I first wake up...I

stretch

> > and get my body parts moving before getting out of bed...that seems to

> > help...of course its' about the 3rd or 4th time each night I get up...I

seem

> > to only sleep about 2 hours before I stiffin and hurt and have to move

> > around, other than being fatigued the days go pretty well...so I count

> > myself lucky. your " hello I still have ra " to your husband sounded

just

> > like my rheummy telling me to get to some acceptance....and she

ishelping

> > me learn to live with it...best I can for today...hour by hour....hope

your

> > days get better....marge

>

>

>

>

[Guest guest]

Hi to all who have shared in the middle of the night...thanx it really is

great to know some of you are out there and responding, although it is

somewhat bitter sweet because that means you are wandering in the night

too...I have really focused during the day to not take naps and to watch

caffeine intake in the evenings...the last 2 nights, I have added warm milk

when I take the sleeping pill...and I have slept about 4 hours strraight

each night...the leg restlessness has gone and I really am feeling more

rested...I have never been a good sleeper, and am one of those who can sit

or lay down during the day and fall to sleep within seconds for a 15 minute

nap and feel rested; but don't sleep long even at night...5-6 hours max; but

since RA has arrived...sleeping at night has been worse. I have avoided

naps the last two days and sleep has been short but better. I will continue

to try to avoid the naps; but what else can you do when the RA fog hits in

the middle of the day? Just closing my eyes for 15 minutes makes a

difference...so it is a quandry...thanks for all of your wishes to

me...it's nice! It is 5:30, I let the dogs out and am waiting for them to

come back in, and will lay down for an hour before the alarm goes off for

work. Hope you are sleeping through the night...marge

Re: [ ] Re: is this the best it will get?

>

>

> > Marge,

> > I¹m glad you have a great doctor, one that listens and wants to offer

you

> > relief. Sleep is also my biggest challenge. I¹ve tried many meds over

> the

> > years, but am now looking for alternatives. I found one med that worked

> > wonders for 2 years, but then it quit (trazadone). I haven't had any

luck

> > finding a replacement. It is much worse for you because you are

working.

> > At least I can lay down and rest when I need to. I hope tonight is a

good

> > night and you get some sleep.

> > a

> >

> >

> >

> > > Hi, yes I am lucky that i have found good docs...when I complain to my

> > > Rheummy, she just smiles and says 'yes marge, you still have ra " and

> > > proceeds to adjust meds where needed...when I see the struggle others

> are

> > > having in finding a good doc...I relly feel blessed...she listens and

> > > responds...She wants me to consider rem in Oct..because she feels it

> would

> > > improve my quality life even more...I just wonder, if I should change

> what

> > > seems to be working pretty well...until it's not effective anymore...I

> do

> > > the same thing about thinking what to do when I first wake up...I

> stretch

> > > and get my body parts moving before getting out of bed...that seems to

> > > help...of course its' about the 3rd or 4th time each night I get

up...I

> seem

> > > to only sleep about 2 hours before I stiffin and hurt and have to move

> > > around, other than being fatigued the days go pretty well...so I count

> > > myself lucky. your " hello I still have ra " to your husband sounded

> just

> > > like my rheummy telling me to get to some acceptance....and she

> ishelping

> > > me learn to live with it...best I can for today...hour by hour....hope

> your

> > > days get better....marge

> >

> >

> >

> >