Re: My life with RA,......

[Guest guest]

I don't know about the rest of you, but when I'm down hurting so much my

eyes water and thinking it can't get worse, I always seem to find someone

that's having more problems than me. It usually makes my suffering

inconsequential. No matter how bad it gets, someone is having a worse time.

This doesn't exactly offer encouragement, but with every lemon, there's

always lemonade.

Dennis- the lemon today- ;}

[ ] Re: My life with RA,......

>

>

> Jennie, thanks for the kind words, I appreciate them so much. I'm so

> glad to have this group to help me though rough times, not just good.

> I have tried many different meds, and none has worked so far really.

> I'm having a harder time getting around, just tired of pain. With all

> the meds out there, you would think there would be something.

> I'm sure it's been terrible to watch your Mom going through such a

> terrible time. She is a fighter that is for sure, she's a strong

> woman. I look at my 10 year old, and wonder if she will think back

> one day, and that is what she will see. She helps me a lot, and I'm

> grateful. I have always taken care of myself and others, so it's not

> easy for me at all. Some times I think that this is a bad dream, and

> I want to wake up, but of course it's my new life.

> I hope that you continue to have good days, and you are able to keep

> your RA in control, thanks T

>

[Guest guest]

I don't know about the rest of you, but when I'm down hurting so much my

eyes water and thinking it can't get worse, I always seem to find someone

that's having more problems than me. It usually makes my suffering

inconsequential. No matter how bad it gets, someone is having a worse time.

This doesn't exactly offer encouragement, but with every lemon, there's

always lemonade.

Dennis- the lemon today- ;}

[ ] Re: My life with RA,......

>

>

> Jennie, thanks for the kind words, I appreciate them so much. I'm so

> glad to have this group to help me though rough times, not just good.

> I have tried many different meds, and none has worked so far really.

> I'm having a harder time getting around, just tired of pain. With all

> the meds out there, you would think there would be something.

> I'm sure it's been terrible to watch your Mom going through such a

> terrible time. She is a fighter that is for sure, she's a strong

> woman. I look at my 10 year old, and wonder if she will think back

> one day, and that is what she will see. She helps me a lot, and I'm

> grateful. I have always taken care of myself and others, so it's not

> easy for me at all. Some times I think that this is a bad dream, and

> I want to wake up, but of course it's my new life.

> I hope that you continue to have good days, and you are able to keep

> your RA in control, thanks T

>

[Guest guest]

I forgot in the previous post, I had to stop taking anti-inflammatories

because they are messing with my kidneys, so I'm only on Prednesone and MTX,

with lots of pain pills that don't really help. This last year has been

really miserable, almost as bad as when I started having to stay in bed or

in the house only. That starts feeling like a prison. No wonder we have to

deal with depression, too.

Dennis

[ ] Re: My life with RA,......

>

>

> a,....I'm not sure about all the drugs that can help me fight

> this monster. My rheumy has tried to help me, but with the problems

> with insurance, and all, he's doing the best that he can, I truly

> believe. I will talk to him next time, to see if there is something

> else. He really does think the Humira is in my best interest, and he

> wants to keep me on that. How long should you stay on these BRM's

> before you decide their not working? Thanks a, for your support,

> and for a great place to come, T

>

>

>

>

>

>> Tawny,

>> I'm so sorry you haven't been able to find something to help. I

> know it is

>> hard to watch yourself being affected by such a rotten disease. I

> pray for

>> your doctors to find the right meds to give you relief. Have you

> tried

>> everything available? Is your doctor trying hard enough to help

> you?

>> I feel so bad for you. I want so much for you to find your magic

> bullet so

>> that you can enjoy life.

>> a

>>

>> >

>> >

>> > I would like to get my RA in control. I have been in constant pain

>> > for almost 3 years now, with little relief. I have taken a lot of

>> > different meds, but none really seem to help the constant nagging

>> > pain. I am taking the med to prevent the progression of the

>> > disease. But, I still see my hands deforming, so then what?

>> > I can't exercise for the pain. I can't hardly walk, using my

> hands

>> > is tough. It's not what I won't, I have gave a good fight over

> the

>> > last couple of years, but all I see is the disease taking over my

>> > body each day. It's effecting my life so much, and it's hard.

>> > I don't sleep, and I cry until I make myself sick. But, what can

> I

>> > do? How can I take the RA positive? I pray for remission, just a

>> > little relief, but it hasn't happened yet.

>> >

>> >

>> >

>> >

>> >

>> >

>> >

>> >

[Guest guest]

I forgot in the previous post, I had to stop taking anti-inflammatories

because they are messing with my kidneys, so I'm only on Prednesone and MTX,

with lots of pain pills that don't really help. This last year has been

really miserable, almost as bad as when I started having to stay in bed or

in the house only. That starts feeling like a prison. No wonder we have to

deal with depression, too.

Dennis

[ ] Re: My life with RA,......

>

>

> a,....I'm not sure about all the drugs that can help me fight

> this monster. My rheumy has tried to help me, but with the problems

> with insurance, and all, he's doing the best that he can, I truly

> believe. I will talk to him next time, to see if there is something

> else. He really does think the Humira is in my best interest, and he

> wants to keep me on that. How long should you stay on these BRM's

> before you decide their not working? Thanks a, for your support,

> and for a great place to come, T

>

>

>

>

>

>> Tawny,

>> I'm so sorry you haven't been able to find something to help. I

> know it is

>> hard to watch yourself being affected by such a rotten disease. I

> pray for

>> your doctors to find the right meds to give you relief. Have you

> tried

>> everything available? Is your doctor trying hard enough to help

> you?

>> I feel so bad for you. I want so much for you to find your magic

> bullet so

>> that you can enjoy life.

>> a

>>

>> >

>> >

>> > I would like to get my RA in control. I have been in constant pain

>> > for almost 3 years now, with little relief. I have taken a lot of

>> > different meds, but none really seem to help the constant nagging

>> > pain. I am taking the med to prevent the progression of the

>> > disease. But, I still see my hands deforming, so then what?

>> > I can't exercise for the pain. I can't hardly walk, using my

> hands

>> > is tough. It's not what I won't, I have gave a good fight over

> the

>> > last couple of years, but all I see is the disease taking over my

>> > body each day. It's effecting my life so much, and it's hard.

>> > I don't sleep, and I cry until I make myself sick. But, what can

> I

>> > do? How can I take the RA positive? I pray for remission, just a

>> > little relief, but it hasn't happened yet.

>> >

>> >

>> >

>> >

>> >

>> >

>> >

>> >

[Guest guest]

Hi Tawny,you have been on my mind,and i have not yet left for my surgery,so i

decided to check back in.I read your other posts,about your swelling and some of

your other things. Could it be that you have allergies? I have allergies to

alot of meds,some slight and some full blown,most of them are to pain

medications and to antiobitics. The swelling could be due to fluid

retention,alot of people with problems similar to ours have fluid retention that

just need a fluid pill(diuritic)(lasic).I recently had to start 2 different

kinds the first one i was allergic to,or my body could not tolerate,it

aggeervated my condition,so i had to start another one.that is ok if you cant

take pred. that is what my doc would consider a allergy. how are your blood

work coming about? does it look good? also,if you dont money for the meds,if

your doc is a good doc and cares,they will start you on something they have on

hand in the office,and then go from there,they have reps that come into thier

office and they order samples from them. They can order what they want you to

have and you can get it from the drs office. thier are also indignet programs

that you can get forms from the dr office to fill out,turn back in and they

order the meds directly from the manufactor and ship them to your doc.at little

or no cost to you. if you are not comfortable discussing this with your dr,you

can always discuss this the nurse when she comes in first,or call them.Or you

can always add a new dr to your health team.i have a whole team of drs where i

go.

So much of what you are saying about how your daughter will remember you

and things like that i also think about.but if we go away,that will be worse

than the memories of mommy looking and being different. you know,i think now a

days,it is almost normal to be different.lol.....I have 3 kids and was a country

girl who was always very athletic and very active.now i stay at home and do good

to get dinner and laundry done.That is not what i had in mind for my or my kids

future.My husband and kids say that is ok mom,but my oldest,(15)wants it back

the way it used to be.water skiing,ball,etc......he is resentful. So i

understand exactly where you are coming from. My best freind and sister of 20

some yrs , funny that her name is tonya,wont come around because she cant deal

with my being sick.I understand that,and still love her as my sis though.But she

cant watch me deteriote(sp)....... so if you or anyone else need friendship

here,you have it from me Tawny!!!!

I actually cant believe i poured all that out,sorry for writing so

much,but i wanted you to know that you are not alone in your thinking,and you

are in my heart also.

Lupie Hugs ,

Cheryl

Tawny <tawnyokc@...> wrote:

Cheryl,....I will keep you closely in my prayers. I hope that your

recovery is a speedy one, and all will go well. What is going on

with your kidneys and liver?

You are right we are here for a purpose, although I do question that

at times, but I know we just keep going. Big hug your way, T

> I would like to get my RA in control. I have been in constant pain

> for almost 3 years now, with little relief. I have taken a lot of

> different meds, but none really seem to help the constant nagging

> pain. I am taking the med to prevent the progression of the

> disease. But, I still see my hands deforming, so then what?

> I can't exercise for the pain. I can't hardly walk, using my hands

> is tough. It's not what I won't, I have gave a good fight over the

> last couple of years, but all I see is the disease taking over my

> body each day. It's effecting my life so much, and it's hard.

> I don't sleep, and I cry until I make myself sick. But, what can I

> do? How can I take the RA positive? I pray for remission, just a

> little relief, but it hasn't happened yet.

>

>

>

>

>

>

>

[Guest guest]

Hi Tawny,you have been on my mind,and i have not yet left for my surgery,so i

decided to check back in.I read your other posts,about your swelling and some of

your other things. Could it be that you have allergies? I have allergies to

alot of meds,some slight and some full blown,most of them are to pain

medications and to antiobitics. The swelling could be due to fluid

retention,alot of people with problems similar to ours have fluid retention that

just need a fluid pill(diuritic)(lasic).I recently had to start 2 different

kinds the first one i was allergic to,or my body could not tolerate,it

aggeervated my condition,so i had to start another one.that is ok if you cant

take pred. that is what my doc would consider a allergy. how are your blood

work coming about? does it look good? also,if you dont money for the meds,if

your doc is a good doc and cares,they will start you on something they have on

hand in the office,and then go from there,they have reps that come into thier

office and they order samples from them. They can order what they want you to

have and you can get it from the drs office. thier are also indignet programs

that you can get forms from the dr office to fill out,turn back in and they

order the meds directly from the manufactor and ship them to your doc.at little

or no cost to you. if you are not comfortable discussing this with your dr,you

can always discuss this the nurse when she comes in first,or call them.Or you

can always add a new dr to your health team.i have a whole team of drs where i

go.

So much of what you are saying about how your daughter will remember you

and things like that i also think about.but if we go away,that will be worse

than the memories of mommy looking and being different. you know,i think now a

days,it is almost normal to be different.lol.....I have 3 kids and was a country

girl who was always very athletic and very active.now i stay at home and do good

to get dinner and laundry done.That is not what i had in mind for my or my kids

future.My husband and kids say that is ok mom,but my oldest,(15)wants it back

the way it used to be.water skiing,ball,etc......he is resentful. So i

understand exactly where you are coming from. My best freind and sister of 20

some yrs , funny that her name is tonya,wont come around because she cant deal

with my being sick.I understand that,and still love her as my sis though.But she

cant watch me deteriote(sp)....... so if you or anyone else need friendship

here,you have it from me Tawny!!!!

I actually cant believe i poured all that out,sorry for writing so

much,but i wanted you to know that you are not alone in your thinking,and you

are in my heart also.

Lupie Hugs ,

Cheryl

Tawny <tawnyokc@...> wrote:

Cheryl,....I will keep you closely in my prayers. I hope that your

recovery is a speedy one, and all will go well. What is going on

with your kidneys and liver?

You are right we are here for a purpose, although I do question that

at times, but I know we just keep going. Big hug your way, T

> I would like to get my RA in control. I have been in constant pain

> for almost 3 years now, with little relief. I have taken a lot of

> different meds, but none really seem to help the constant nagging

> pain. I am taking the med to prevent the progression of the

> disease. But, I still see my hands deforming, so then what?

> I can't exercise for the pain. I can't hardly walk, using my hands

> is tough. It's not what I won't, I have gave a good fight over the

> last couple of years, but all I see is the disease taking over my

> body each day. It's effecting my life so much, and it's hard.

> I don't sleep, and I cry until I make myself sick. But, what can I

> do? How can I take the RA positive? I pray for remission, just a

> little relief, but it hasn't happened yet.

>

>

>

>

>

>

>

[Guest guest]

Dennis,

I feel the same way. I hate having RA but when I see what others suffer

with, I know it could be worse. I am blessed in so many other ways.

a

> I don't know about the rest of you, but when I'm down hurting so much my

> eyes water and thinking it can't get worse, I always seem to find someone

> that's having more problems than me. It usually makes my suffering

> inconsequential. No matter how bad it gets, someone is having a worse time.

> This doesn't exactly offer encouragement, but with every lemon, there's

> always lemonade.

>

> Dennis- the lemon today- ;}

[Guest guest]

Dennis,

I feel the same way. I hate having RA but when I see what others suffer

with, I know it could be worse. I am blessed in so many other ways.

a

> I don't know about the rest of you, but when I'm down hurting so much my

> eyes water and thinking it can't get worse, I always seem to find someone

> that's having more problems than me. It usually makes my suffering

> inconsequential. No matter how bad it gets, someone is having a worse time.

> This doesn't exactly offer encouragement, but with every lemon, there's

> always lemonade.

>

> Dennis- the lemon today- ;}

[Guest guest]

Tawny, I would start keeping a diary of what changes you are noticing,

if you aren't already.

My former SIL has Crohn's and is no fun. I hope you will ask your doctor

about your new GI symptoms.

While people with RA can have ups and downs, spiraling downward with no

hope for improvement does not have to happen. With the right treatment,

most often, RA can be managed very well.

Please have a frank talk with your rheumatologist and tell him how bad

you are feeling. There are many other treatment strategies open to you.

I'll tell you where to go!

Mayo Clinic in Rochester

http://www.mayoclinic.org/rochester

s Hopkins Medicine

http://www.hopkinsmedicine.org

[ ] Re: My life with RA,......

>

>

> , I have only tried the Humira and oral MTX. Yes, the enzymes

> would go up, I'm not sure how much, enough to keep me off the med. I

> believe that I took 6 MTX pills weekly, not sure how many mgs. I did

> take Folic acid, while on the MTX.

> Is this normal , to get worse? I feel like I'm losing strength

> in my legs, they are very weak. My knees swell, and can't bend my

> legs much. My hands are doing the same thing. I am scared, I'm not

> shamed to admit that. I have problems with my neck, with limited

> movement.

> Also, having other problems with my stomach. I am going to talk to

> the doctor about that. I was diagnosed years ago with IBS. But, now

> I'm having much more problem. After I eat, about 30 minutes later I

> have to go to the bathroom. I have diarrea constantly. If I go

> somewhere I don't eat until I get home, because I am in the

> bathroom. If I don't eat, and I drink something, I sometimes still

> have it, it's just a mess:) I am looking into Crohns disease.

> It's just hard to go each day not knowing what is next. This group

> helps me so much emotionally, and I have met so many wonderful

> people, I'm thankful in so many ways, if I stop, and think about it.

[Guest guest]

Tawny, I would start keeping a diary of what changes you are noticing,

if you aren't already.

My former SIL has Crohn's and is no fun. I hope you will ask your doctor

about your new GI symptoms.

While people with RA can have ups and downs, spiraling downward with no

hope for improvement does not have to happen. With the right treatment,

most often, RA can be managed very well.

Please have a frank talk with your rheumatologist and tell him how bad

you are feeling. There are many other treatment strategies open to you.

I'll tell you where to go!

Mayo Clinic in Rochester

http://www.mayoclinic.org/rochester

s Hopkins Medicine

http://www.hopkinsmedicine.org

[ ] Re: My life with RA,......

>

>

> , I have only tried the Humira and oral MTX. Yes, the enzymes

> would go up, I'm not sure how much, enough to keep me off the med. I

> believe that I took 6 MTX pills weekly, not sure how many mgs. I did

> take Folic acid, while on the MTX.

> Is this normal , to get worse? I feel like I'm losing strength

> in my legs, they are very weak. My knees swell, and can't bend my

> legs much. My hands are doing the same thing. I am scared, I'm not

> shamed to admit that. I have problems with my neck, with limited

> movement.

> Also, having other problems with my stomach. I am going to talk to

> the doctor about that. I was diagnosed years ago with IBS. But, now

> I'm having much more problem. After I eat, about 30 minutes later I

> have to go to the bathroom. I have diarrea constantly. If I go

> somewhere I don't eat until I get home, because I am in the

> bathroom. If I don't eat, and I drink something, I sometimes still

> have it, it's just a mess:) I am looking into Crohns disease.

> It's just hard to go each day not knowing what is next. This group

> helps me so much emotionally, and I have met so many wonderful

> people, I'm thankful in so many ways, if I stop, and think about it.

[Guest guest]

Cheryl,....The swelling is in my joints, I don't really have water

retention. I can look in the mirror, and look at my back. I have

red areas where my pain is, and swelling. Is this what a flare is?

Now I don't know what flaring is, I have had pain for almost 3 years,

no joke, and I'm wondering. Is the RA so active in my body, that's

what I'm thinking.

I am on a patient assistance program for the Humira. Also, my doc

has helped me out quite a bit. They gave me samples of Mobic, which

I couldn't take. I haven't been able to do lab work, or x-rays

because of my situation, which is much needed. Now that the Medicare

starts in January, maybe there is some hope shining though.

It is hard to deal with this, we all think about it, and get

depressed. If not we wouldn't be human. It is hard on our children,

and I know that. They see us in control, doing everything, and then

one day they wake up, and it's like they have a new mom, she looks

the same, but sure don't act right.

I'm sorry to hear about your sister, she will come around. She is

missing out on you, just because your life is turned upside down

basically, don't mean your not the same loving person inside. I'm

glad to have you on the group, and as my friend, I'm the lucky one.

I started on the Lodine once again today. Took one early this

morning, afternoon, thinking about starting out on just 2 a day, then

work my way up to 3. So far no problems with tummy, thank goodness.

Just know that your in my prayers, and I'm here for you, Tawny

> > I would like to get my RA in control. I have been in constant

pain

> > for almost 3 years now, with little relief. I have taken a lot

of

> > different meds, but none really seem to help the constant nagging

> > pain. I am taking the med to prevent the progression of the

> > disease. But, I still see my hands deforming, so then what?

> > I can't exercise for the pain. I can't hardly walk, using my

hands

> > is tough. It's not what I won't, I have gave a good fight over

the

> > last couple of years, but all I see is the disease taking over my

> > body each day. It's effecting my life so much, and it's hard.

> > I don't sleep, and I cry until I make myself sick. But, what can

I

> > do? How can I take the RA positive? I pray for remission, just

a

> > little relief, but it hasn't happened yet.

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

Cheryl,....The swelling is in my joints, I don't really have water

retention. I can look in the mirror, and look at my back. I have

red areas where my pain is, and swelling. Is this what a flare is?

Now I don't know what flaring is, I have had pain for almost 3 years,

no joke, and I'm wondering. Is the RA so active in my body, that's

what I'm thinking.

I am on a patient assistance program for the Humira. Also, my doc

has helped me out quite a bit. They gave me samples of Mobic, which

I couldn't take. I haven't been able to do lab work, or x-rays

because of my situation, which is much needed. Now that the Medicare

starts in January, maybe there is some hope shining though.

It is hard to deal with this, we all think about it, and get

depressed. If not we wouldn't be human. It is hard on our children,

and I know that. They see us in control, doing everything, and then

one day they wake up, and it's like they have a new mom, she looks

the same, but sure don't act right.

I'm sorry to hear about your sister, she will come around. She is

missing out on you, just because your life is turned upside down

basically, don't mean your not the same loving person inside. I'm

glad to have you on the group, and as my friend, I'm the lucky one.

I started on the Lodine once again today. Took one early this

morning, afternoon, thinking about starting out on just 2 a day, then

work my way up to 3. So far no problems with tummy, thank goodness.

Just know that your in my prayers, and I'm here for you, Tawny

> > I would like to get my RA in control. I have been in constant

pain

> > for almost 3 years now, with little relief. I have taken a lot

of

> > different meds, but none really seem to help the constant nagging

> > pain. I am taking the med to prevent the progression of the

> > disease. But, I still see my hands deforming, so then what?

> > I can't exercise for the pain. I can't hardly walk, using my

hands

> > is tough. It's not what I won't, I have gave a good fight over

the

> > last couple of years, but all I see is the disease taking over my

> > body each day. It's effecting my life so much, and it's hard.

> > I don't sleep, and I cry until I make myself sick. But, what can

I

> > do? How can I take the RA positive? I pray for remission, just

a

> > little relief, but it hasn't happened yet.

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

, I will have a long talk with him on my next visit. I think now

that the Medicare will come through, he will be able to help me

more. We can get lab testing, and x-rays just to see how much damage

new damage I have. I do need some surgery, I know that is going to

be in my near future, whether I like it, or not. My right wrist is

useless, I can do nothing with it.

I know that when I was put on the MTX, it did help me. So, maybe I

can go back on that once again. Is the injectons better, ? I

have heard so many say they have less side effects taking the

injection.

I hope that I don't have Crohn's, that needs to be ruled out. I have

a lot of medical problems right now.

I have a question for you ? Could the fibro cause this much

pain? Also, on flaring would this be a flare, how long does the

flaring last? I know where my joints are, my skin is red, swollen,

and warm to touch.

Thanks for being so helpful and caring. That is what makes you so

special, T

> Tawny, I would start keeping a diary of what changes you are

noticing,

> if you aren't already.

>

> My former SIL has Crohn's and is no fun. I hope you will ask your

doctor

> about your new GI symptoms.

>

> While people with RA can have ups and downs, spiraling downward

with no

> hope for improvement does not have to happen. With the right

treatment,

> most often, RA can be managed very well.

>

> Please have a frank talk with your rheumatologist and tell him how

bad

> you are feeling. There are many other treatment strategies open to

you.

>

>

>

>

> I'll tell you where to go!

>

> Mayo Clinic in Rochester

> http://www.mayoclinic.org/rochester

>

> s Hopkins Medicine

> http://www.hopkinsmedicine.org

>

>

> [ ] Re: My life with RA,......

>

>

> >

> >

> > , I have only tried the Humira and oral MTX. Yes, the enzymes

> > would go up, I'm not sure how much, enough to keep me off the

med. I

> > believe that I took 6 MTX pills weekly, not sure how many mgs. I

did

> > take Folic acid, while on the MTX.

> > Is this normal , to get worse? I feel like I'm losing

strength

> > in my legs, they are very weak. My knees swell, and can't bend my

> > legs much. My hands are doing the same thing. I am scared, I'm

not

> > shamed to admit that. I have problems with my neck, with limited

> > movement.

> > Also, having other problems with my stomach. I am going to talk to

> > the doctor about that. I was diagnosed years ago with IBS. But,

now

> > I'm having much more problem. After I eat, about 30 minutes

later I

> > have to go to the bathroom. I have diarrea constantly. If I go

> > somewhere I don't eat until I get home, because I am in the

> > bathroom. If I don't eat, and I drink something, I sometimes

still

> > have it, it's just a mess:) I am looking into Crohns disease.

> > It's just hard to go each day not knowing what is next. This

group

> > helps me so much emotionally, and I have met so many wonderful

> > people, I'm thankful in so many ways, if I stop, and think about

it.

[Guest guest]

, I will have a long talk with him on my next visit. I think now

that the Medicare will come through, he will be able to help me

more. We can get lab testing, and x-rays just to see how much damage

new damage I have. I do need some surgery, I know that is going to

be in my near future, whether I like it, or not. My right wrist is

useless, I can do nothing with it.

I know that when I was put on the MTX, it did help me. So, maybe I

can go back on that once again. Is the injectons better, ? I

have heard so many say they have less side effects taking the

injection.

I hope that I don't have Crohn's, that needs to be ruled out. I have

a lot of medical problems right now.

I have a question for you ? Could the fibro cause this much

pain? Also, on flaring would this be a flare, how long does the

flaring last? I know where my joints are, my skin is red, swollen,

and warm to touch.

Thanks for being so helpful and caring. That is what makes you so

special, T

> Tawny, I would start keeping a diary of what changes you are

noticing,

> if you aren't already.

>

> My former SIL has Crohn's and is no fun. I hope you will ask your

doctor

> about your new GI symptoms.

>

> While people with RA can have ups and downs, spiraling downward

with no

> hope for improvement does not have to happen. With the right

treatment,

> most often, RA can be managed very well.

>

> Please have a frank talk with your rheumatologist and tell him how

bad

> you are feeling. There are many other treatment strategies open to

you.

>

>

>

>

> I'll tell you where to go!

>

> Mayo Clinic in Rochester

> http://www.mayoclinic.org/rochester

>

> s Hopkins Medicine

> http://www.hopkinsmedicine.org

>

>

> [ ] Re: My life with RA,......

>

>

> >

> >

> > , I have only tried the Humira and oral MTX. Yes, the enzymes

> > would go up, I'm not sure how much, enough to keep me off the

med. I

> > believe that I took 6 MTX pills weekly, not sure how many mgs. I

did

> > take Folic acid, while on the MTX.

> > Is this normal , to get worse? I feel like I'm losing

strength

> > in my legs, they are very weak. My knees swell, and can't bend my

> > legs much. My hands are doing the same thing. I am scared, I'm

not

> > shamed to admit that. I have problems with my neck, with limited

> > movement.

> > Also, having other problems with my stomach. I am going to talk to

> > the doctor about that. I was diagnosed years ago with IBS. But,

now

> > I'm having much more problem. After I eat, about 30 minutes

later I

> > have to go to the bathroom. I have diarrea constantly. If I go

> > somewhere I don't eat until I get home, because I am in the

> > bathroom. If I don't eat, and I drink something, I sometimes

still

> > have it, it's just a mess:) I am looking into Crohns disease.

> > It's just hard to go each day not knowing what is next. This

group

> > helps me so much emotionally, and I have met so many wonderful

> > people, I'm thankful in so many ways, if I stop, and think about

it.

[Guest guest]

Tawny

Usually with Crohn's disease you will have severe pain as well as

diarrhea/constipation. Really severe, often imitating appendicitis. Cary

[Guest guest]

Tawny

Usually with Crohn's disease you will have severe pain as well as

diarrhea/constipation. Really severe, often imitating appendicitis. Cary

[Guest guest]

I do have very bad pain with this problem.

> Tawny

>

> Usually with Crohn's disease you will have severe pain as well as

diarrhea/constipation. Really severe, often imitating

appendicitis. Cary

[Guest guest]

I do have very bad pain with this problem.

> Tawny

>

> Usually with Crohn's disease you will have severe pain as well as

diarrhea/constipation. Really severe, often imitating

appendicitis. Cary

[Guest guest]

Tawny,

I had very similar experiences as you with many meds. I can't take

any NSAID's because they tear up my stomach. I have to take Prevacid

twice a day for my stomach and for years also took Prilosec as well

as the Prevacid. Now I have to take IV meds four times a day for

another stomach problem that also causes severe nausea and vomitting.

The IV med, while prescribed for another stomach illness, does help

with nausea and vomitting in general and consequently I was able to

drop the Prilosec and only take Prevacid twice a day.

With the stomach meds control the pain in my gut and relieve the

nausea and vomitting I still can't take any NSAID's but I can take

prednisone and I uses the Duragesic patches for pain control. I also

take neurontin for PN.

Like you too, I also struggled to find a DMARD I could tolerate and

one that worked. Like you, I could not take MTX. In my case I was

getting frequent, severe cases of pneumonia and infections in general

were difficult to heal. But other meds (like Arava) did affect my

liver so I have to avoid meds that are hard on the liver. One type of

DMARD treatment that is very old, but very effective that did help me

a lot was Minocin. That is actually an antibiotic but also used for

RA.

Minocin is fairly inexpensive and my rheumy has many patients who

find it very effective. After that I took Cytoxan, which is a chemo

type drug but given in much smaller doses than for cancer and thus

none of the side affects cancer patients get. Cytoxan was wonderful

for my RA but eventually I had to stop taking it because it was

lowering many of my blood cell counts including white blood cells,

hemoglobin and hematocrit.

Right now I'm taking Imuran, which is similar to Cytoxan but

significantly easier on the body and without the side effects of

Cytoxan.

All of these are much cheaper than most other DMARD's and generally

covered well by most insurances since they are older, proven

medications.

Perhaps one of these drug combinations might help you also. You sound

very much like I felt for years. My RA is also in my lungs so my

breathing was affected too, which made it imperative we find a drug

that would halt the progression of damage. I can't afford for my

lungs to get worse.

I can identify very closely with so much of what you are going

through and truly understand the frustration of not being able to

find a drug that helps. The only thing I can say, which so many

others have said so well, is try hard not to give up (much easier

said than done when your pain is so severe and when so many of the

pain meds are so harsh on your stomach. Also, keep communicating with

your rheumy and be willing to keep trying other meds.

You may want to talk to your rheumy about the meds that have helped

me to see if they are possibilities for you. Your rheumy is certainly

the one most qualified to know what are good options for you --- I'm

not a doctor. But sometimes it's good to ask about specific options.

Doctors are like everyone else; they sometimes don't think about

certain medications because they just may not have many patients

taking them...........sort of one of those things where you tend to

prescribe what you prescribe most often and what you've found most

effective in the majority of your patients and you may not think

about these other options.

Again, I'm just sharing my experiences with drugs that have helped my

RA and my pain because you and I seem to have so much in common.

Take care and I hope you, too, can soon find a medication combination

that brings you relief. It really is miserable to live your life in

such significant pain.

Elaine

>

> ,....my rheumy does as much as he can with my resources. I'm

on

> the Humira assistance program right now, but I just don't see

much.

> On my next visit I will talk to him about other meds. It just gets

> so frustrating to be the same everyday, but maybe a little worse.

> I have thought about a trial, I have actually contacted one here in

> the city, just waiting to see if I qualify.

> I don't think I have actually tried DMARDS, I will ask him on my

next

> visit. Do you take them along with the Humira? I have taken MTX,

> and that didn't go very well with my liver. So, maybe that is why

> he's keeping me off those, not sure. I am suppose to be on the anti-

> inflammatory med right now, but it's just making me sick. It is

> Lodine 300mg, three times a day. Which I have been on Motrin,

Mobic,

> and just can't tolerate them.

> Thanks so much for having us all here, so we can let our tears

flow

> when we need to, and someone will listen, Tawny

>

>

[Guest guest]

Tawny,

I had very similar experiences as you with many meds. I can't take

any NSAID's because they tear up my stomach. I have to take Prevacid

twice a day for my stomach and for years also took Prilosec as well

as the Prevacid. Now I have to take IV meds four times a day for

another stomach problem that also causes severe nausea and vomitting.

The IV med, while prescribed for another stomach illness, does help

with nausea and vomitting in general and consequently I was able to

drop the Prilosec and only take Prevacid twice a day.

With the stomach meds control the pain in my gut and relieve the

nausea and vomitting I still can't take any NSAID's but I can take

prednisone and I uses the Duragesic patches for pain control. I also

take neurontin for PN.

Like you too, I also struggled to find a DMARD I could tolerate and

one that worked. Like you, I could not take MTX. In my case I was

getting frequent, severe cases of pneumonia and infections in general

were difficult to heal. But other meds (like Arava) did affect my

liver so I have to avoid meds that are hard on the liver. One type of

DMARD treatment that is very old, but very effective that did help me

a lot was Minocin. That is actually an antibiotic but also used for

RA.

Minocin is fairly inexpensive and my rheumy has many patients who

find it very effective. After that I took Cytoxan, which is a chemo

type drug but given in much smaller doses than for cancer and thus

none of the side affects cancer patients get. Cytoxan was wonderful

for my RA but eventually I had to stop taking it because it was

lowering many of my blood cell counts including white blood cells,

hemoglobin and hematocrit.

Right now I'm taking Imuran, which is similar to Cytoxan but

significantly easier on the body and without the side effects of

Cytoxan.

All of these are much cheaper than most other DMARD's and generally

covered well by most insurances since they are older, proven

medications.

Perhaps one of these drug combinations might help you also. You sound

very much like I felt for years. My RA is also in my lungs so my

breathing was affected too, which made it imperative we find a drug

that would halt the progression of damage. I can't afford for my

lungs to get worse.

I can identify very closely with so much of what you are going

through and truly understand the frustration of not being able to

find a drug that helps. The only thing I can say, which so many

others have said so well, is try hard not to give up (much easier

said than done when your pain is so severe and when so many of the

pain meds are so harsh on your stomach. Also, keep communicating with

your rheumy and be willing to keep trying other meds.

You may want to talk to your rheumy about the meds that have helped

me to see if they are possibilities for you. Your rheumy is certainly

the one most qualified to know what are good options for you --- I'm

not a doctor. But sometimes it's good to ask about specific options.

Doctors are like everyone else; they sometimes don't think about

certain medications because they just may not have many patients

taking them...........sort of one of those things where you tend to

prescribe what you prescribe most often and what you've found most

effective in the majority of your patients and you may not think

about these other options.

Again, I'm just sharing my experiences with drugs that have helped my

RA and my pain because you and I seem to have so much in common.

Take care and I hope you, too, can soon find a medication combination

that brings you relief. It really is miserable to live your life in

such significant pain.

Elaine

>

> ,....my rheumy does as much as he can with my resources. I'm

on

> the Humira assistance program right now, but I just don't see

much.

> On my next visit I will talk to him about other meds. It just gets

> so frustrating to be the same everyday, but maybe a little worse.

> I have thought about a trial, I have actually contacted one here in

> the city, just waiting to see if I qualify.

> I don't think I have actually tried DMARDS, I will ask him on my

next

> visit. Do you take them along with the Humira? I have taken MTX,

> and that didn't go very well with my liver. So, maybe that is why

> he's keeping me off those, not sure. I am suppose to be on the anti-

> inflammatory med right now, but it's just making me sick. It is

> Lodine 300mg, three times a day. Which I have been on Motrin,

Mobic,

> and just can't tolerate them.

> Thanks so much for having us all here, so we can let our tears

flow

> when we need to, and someone will listen, Tawny

>

>

[Guest guest]

Well Tawny-

If you do have Crohn's, at least some of the meds that work for RA also work for

Crohn's. I hope you'll get 2 for the price of one when you find one that works.

Cary

[Guest guest]

Well Tawny-

If you do have Crohn's, at least some of the meds that work for RA also work for

Crohn's. I hope you'll get 2 for the price of one when you find one that works.

Cary

[Guest guest]

Hi Elaine,....You are going through quite a bit yourself. Some of

the meds are so hard to deal with. I will try Prevacid, isn't that

over the counter? I appreciate you taking the time to write me, and

let me know there are different meds to work with, and I just have to

find the right one for me. I was in the hospital recently for the

inflammation in the heart, which I'm suppose to be on the anti-

inflammatory, it's just so hard to take it. I will keep you in my

prayers, and know that I'm here, T

> >

> > ,....my rheumy does as much as he can with my resources. I'm

> on

> > the Humira assistance program right now, but I just don't see

> much.

> > On my next visit I will talk to him about other meds. It just

gets

> > so frustrating to be the same everyday, but maybe a little worse.

> > I have thought about a trial, I have actually contacted one here

in

> > the city, just waiting to see if I qualify.

> > I don't think I have actually tried DMARDS, I will ask him on my

> next

> > visit. Do you take them along with the Humira? I have taken

MTX,

> > and that didn't go very well with my liver. So, maybe that is

why

> > he's keeping me off those, not sure. I am suppose to be on the

anti-

> > inflammatory med right now, but it's just making me sick. It is

> > Lodine 300mg, three times a day. Which I have been on Motrin,

> Mobic,

> > and just can't tolerate them.

> > Thanks so much for having us all here, so we can let our tears

> flow

> > when we need to, and someone will listen, Tawny

> >

> >

[Guest guest]

Hi Elaine,....You are going through quite a bit yourself. Some of

the meds are so hard to deal with. I will try Prevacid, isn't that

over the counter? I appreciate you taking the time to write me, and

let me know there are different meds to work with, and I just have to

find the right one for me. I was in the hospital recently for the

inflammation in the heart, which I'm suppose to be on the anti-

inflammatory, it's just so hard to take it. I will keep you in my

prayers, and know that I'm here, T

> >

> > ,....my rheumy does as much as he can with my resources. I'm

> on

> > the Humira assistance program right now, but I just don't see

> much.

> > On my next visit I will talk to him about other meds. It just

gets

> > so frustrating to be the same everyday, but maybe a little worse.

> > I have thought about a trial, I have actually contacted one here

in

> > the city, just waiting to see if I qualify.

> > I don't think I have actually tried DMARDS, I will ask him on my

> next

> > visit. Do you take them along with the Humira? I have taken

MTX,

> > and that didn't go very well with my liver. So, maybe that is

why

> > he's keeping me off those, not sure. I am suppose to be on the

anti-

> > inflammatory med right now, but it's just making me sick. It is

> > Lodine 300mg, three times a day. Which I have been on Motrin,

> Mobic,

> > and just can't tolerate them.

> > Thanks so much for having us all here, so we can let our tears

> flow

> > when we need to, and someone will listen, Tawny

> >

> >

[Guest guest]

That is so true!

> Well Tawny-

> If you do have Crohn's, at least some of the meds that work for RA

also work for Crohn's. I hope you'll get 2 for the price of one when

you find one that works. Cary