Re: Having trouble with my RA and meds!

[Guest guest]

Hiya Holly,So sorry to hear you are having a rough time.Your doc is

definatly telling you the right thing to do is give up work,until

your RA and lupus is under control.Its the hardest thing in the

world to come to terms with.You need to take stock of your body,and

listen to it.RA demands respect,and until you can do this you cannot

move in the right direction.Take time for yourself,even if its when

you have a bath,light candles and start gelling to your body and its

limits.RA is a law unto its self,good luck with your treatments i

hope they soon get you sorted with a drug that suits you and that

works for you.I will be thinking about you! Hugs

--- In , " Holly " <hollybgroovin2003@...>

wrote:

>

> I was only diagnosed last November with lupus and RA, and I guess I

> just assumed that I would be doing better already. I know it

> sometimes takes awhile but I'm getting impatient and my doctor is

> starting to worry me. My doctor has been consulting with other

> rheumys regarding my situation. The problem is that I have been on

> high doses of many things and since last november my sed rate has

more

> than tripled and continues to rise (and so does the pain!). I

can't

> take some of the best medications because of the lupus and many

> allergies, so I am very limited in what meds I can take. My rheumy

> sat me down today and told me that that I needed to get serious

about

> this ( I was there to pick up some short term disability papers).

> This whole time I have been working 40+ hours as a computer

operator,

> coming home, making dinner, laundry and raising 2 amazining little

> boys. I never rest even when I am in severe pain. I don't know my

> limits yet, which often throughs me into a major flare,but the

minute

> I start feeling even a little bit better I throw myself into

> overdrive. My doctor explained to me how important it is to rest

and

> let my body heal. I was told about a month ago that if we cant

get my

> ra under control that I would be in a wheelchair by my 27th

birthday.

> She later explained that it wasn't because I wouldn't be able to

> walk, it was because I would be in so much pain I would need a

> wheelchair. My worst pain is in my feet and I use a cane for it

right

> now. Then after our talk she told me that she wants me out of work

for

> at least 6 months and then " we'll talk " . My rheumy describes my RA

as

> progressing at a dangerously aggresive pace. Anybody know what

that

> means? I'm still new to this. I just don't understand any of

this,

> and I am very scared of how fast all this has happened. Don't get

me

> wrong, I am not new to RA. I am new to the diagnosis. I was

> misdiagnosed with multiple scleroris almost 2 years ago now. I

didn't

> have any plaques on my brain, but I did on my spine as well as

erosion

> that my rheumy thinks is somewhat due to the RA. My doctor will be

> giving me a MRI of my spine soon to see how it has changes. So

very

> sorry for the long post, I guess I just want someone to tell me

they

> have been through all this with the misdiagnosis and the rapid

> progression. What does rapid progression of my RA mean for me?

> Thanks for all your help and support. You guys have helped me

through

> this more than you can ever know. Holly

>

[Guest guest]

Holly, how did your rheumatologist decide that you have both RA and lupus?

Has your physician considered Rituxan (rituximab) for you?

Not an MD

I'll tell you where to go!

Mayo Clinic in Rochester

http://www.mayoclinic.org/rochester

s Hopkins Medicine

http://www.hopkinsmedicine.org

[ ] Having trouble with my RA and meds!

>I was only diagnosed last November with lupus and RA, and I guess I

> just assumed that I would be doing better already. I know it

> sometimes takes awhile but I'm getting impatient and my doctor is

> starting to worry me. My doctor has been consulting with other

> rheumys regarding my situation. The problem is that I have been on

> high doses of many things and since last november my sed rate has more

> than tripled and continues to rise (and so does the pain!). I can't

> take some of the best medications because of the lupus and many

> allergies, so I am very limited in what meds I can take. My rheumy

> sat me down today and told me that that I needed to get serious about

> this ( I was there to pick up some short term disability papers).

> This whole time I have been working 40+ hours as a computer operator,

> coming home, making dinner, laundry and raising 2 amazining little

> boys. I never rest even when I am in severe pain. I don't know my

> limits yet, which often throughs me into a major flare,but the minute

> I start feeling even a little bit better I throw myself into

> overdrive. My doctor explained to me how important it is to rest and

> let my body heal. I was told about a month ago that if we cant get my

> ra under control that I would be in a wheelchair by my 27th birthday.

> She later explained that it wasn't because I wouldn't be able to

> walk, it was because I would be in so much pain I would need a

> wheelchair. My worst pain is in my feet and I use a cane for it right

> now. Then after our talk she told me that she wants me out of work for

> at least 6 months and then " we'll talk " . My rheumy describes my RA as

> progressing at a dangerously aggresive pace. Anybody know what that

> means? I'm still new to this. I just don't understand any of this,

> and I am very scared of how fast all this has happened. Don't get me

> wrong, I am not new to RA. I am new to the diagnosis. I was

> misdiagnosed with multiple scleroris almost 2 years ago now. I didn't

> have any plaques on my brain, but I did on my spine as well as erosion

> that my rheumy thinks is somewhat due to the RA. My doctor will be

> giving me a MRI of my spine soon to see how it has changes. So very

> sorry for the long post, I guess I just want someone to tell me they

> have been through all this with the misdiagnosis and the rapid

> progression. What does rapid progression of my RA mean for me?

> Thanks for all your help and support. You guys have helped me through

> this more than you can ever know. Holly

[Guest guest]

I'm not quite sure how my rheumy diagnosed me with both lupus and ra. I do know

that I get the " butterfly rash " on my cheeks and I have problems with my

kidneys. When I first came to my rheumy my kidneys were on the verge of going

into failure, and now I have to have tests done almost every 2 weeks. My rheumy

has never talked to my about rituxan. All I know is that it was backed by the

same company that is researching MRA, which my rheumy does want me to try.

Holly

<Matsumura_Clan@...> wrote: Holly, how did your

rheumatologist decide that you have both RA and lupus?

Has your physician considered Rituxan (rituximab) for you?

Not an MD

I'll tell you where to go!

Mayo Clinic in Rochester

http://www.mayoclinic.org/rochester

s Hopkins Medicine

http://www.hopkinsmedicine.org

[ ] Having trouble with my RA and meds!

>I was only diagnosed last November with lupus and RA, and I guess I

> just assumed that I would be doing better already. I know it

> sometimes takes awhile but I'm getting impatient and my doctor is

> starting to worry me. My doctor has been consulting with other

> rheumys regarding my situation. The problem is that I have been on

> high doses of many things and since last november my sed rate has more

> than tripled and continues to rise (and so does the pain!). I can't

> take some of the best medications because of the lupus and many

> allergies, so I am very limited in what meds I can take. My rheumy

> sat me down today and told me that that I needed to get serious about

> this ( I was there to pick up some short term disability papers).

> This whole time I have been working 40+ hours as a computer operator,

> coming home, making dinner, laundry and raising 2 amazining little

> boys. I never rest even when I am in severe pain. I don't know my

> limits yet, which often throughs me into a major flare,but the minute

> I start feeling even a little bit better I throw myself into

> overdrive. My doctor explained to me how important it is to rest and

> let my body heal. I was told about a month ago that if we cant get my

> ra under control that I would be in a wheelchair by my 27th birthday.

> She later explained that it wasn't because I wouldn't be able to

> walk, it was because I would be in so much pain I would need a

> wheelchair. My worst pain is in my feet and I use a cane for it right

> now. Then after our talk she told me that she wants me out of work for

> at least 6 months and then " we'll talk " . My rheumy describes my RA as

> progressing at a dangerously aggresive pace. Anybody know what that

> means? I'm still new to this. I just don't understand any of this,

> and I am very scared of how fast all this has happened. Don't get me

> wrong, I am not new to RA. I am new to the diagnosis. I was

> misdiagnosed with multiple scleroris almost 2 years ago now. I didn't

> have any plaques on my brain, but I did on my spine as well as erosion

> that my rheumy thinks is somewhat due to the RA. My doctor will be

> giving me a MRI of my spine soon to see how it has changes. So very

> sorry for the long post, I guess I just want someone to tell me they

> have been through all this with the misdiagnosis and the rapid

> progression. What does rapid progression of my RA mean for me?

> Thanks for all your help and support. You guys have helped me through

> this more than you can ever know. Holly

[Guest guest]

--- In , " " <Matsumura_Clan@...>

wrote:

>

> Holly, how did your rheumatologist decide that you have both RA and

lupus?

>

> Has your physician considered Rituxan (rituximab) for you?

>

>

>

> Not an MD

>

> I'll tell you where to go!

>

> Mayo Clinic in Rochester

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

>

> s Hopkins Medicine

> http://www.hopkinsmedicine.org

>

>

> [ ] Having trouble with my RA and meds!

>

>

> >I was only diagnosed last November with lupus and RA, and I guess I

> > just assumed that I would be doing better already. I know it

> > sometimes takes awhile but I'm getting impatient and my doctor is

> > starting to worry me. My doctor has been consulting with other

> > rheumys regarding my situation. The problem is that I have been on

> > high doses of many things and since last november my sed rate has more

> > than tripled and continues to rise (and so does the pain!). I can't

> > take some of the best medications because of the lupus and many

> > allergies, so I am very limited in what meds I can take. My rheumy

> > sat me down today and told me that that I needed to get serious about

> > this ( I was there to pick up some short term disability papers).

> > This whole time I have been working 40+ hours as a computer operator,

> > coming home, making dinner, laundry and raising 2 amazining little

> > boys. I never rest even when I am in severe pain. I don't know my

> > limits yet, which often throughs me into a major flare,but the minute

> > I start feeling even a little bit better I throw myself into

> > overdrive. My doctor explained to me how important it is to rest and

> > let my body heal. I was told about a month ago that if we cant get my

> > ra under control that I would be in a wheelchair by my 27th birthday.

> > She later explained that it wasn't because I wouldn't be able to

> > walk, it was because I would be in so much pain I would need a

> > wheelchair. My worst pain is in my feet and I use a cane for it right

> > now. Then after our talk she told me that she wants me out of work for

> > at least 6 months and then " we'll talk " . My rheumy describes my RA as

> > progressing at a dangerously aggresive pace. Anybody know what that

> > means? I'm still new to this. I just don't understand any of this,

> > and I am very scared of how fast all this has happened. Don't get me

> > wrong, I am not new to RA. I am new to the diagnosis. I was

> > misdiagnosed with multiple scleroris almost 2 years ago now. I didn't

> > have any plaques on my brain, but I did on my spine as well as erosion

> > that my rheumy thinks is somewhat due to the RA. My doctor will be

> > giving me a MRI of my spine soon to see how it has changes. So very

> > sorry for the long post, I guess I just want someone to tell me they

> > have been through all this with the misdiagnosis and the rapid

> > progression. What does rapid progression of my RA mean for me?

> > Thanks for all your help and support. You guys have helped me through

> > this more than you can ever know. Holly

>

Hi Holly, my name is Janet and as for the rapid progression, I went

from being able to work but with pain to not being able to move well

at all. I have no upper body strength, I have 5 fingers allready

deformed, as well as some of my toes, and every joint in my body

screams with pain every day. I don't know about the treatment yet.

I'm still waiting to get a medical card to be able to see one. I take

lots of ibuprofen all day, and try to stay in when it's cold out. At

least you should have the confort of knowing you are getting the help

you need by a doctor. Try to slow down and do what he says. Good

luck. Janet

[Guest guest]

Holly,

So, when you received a diagnosis of MS initially, why? What MS-like

problems do you have?

What does your rheumatologist believe is going on with your spine?

Has she given the problem a name?

Do you have RA-like changes in your hands or feet?

Not an MD

I'll tell you where to go!

Mayo Clinic in Rochester

http://www.mayoclinic.org/rochester

s Hopkins Medicine

http://www.hopkinsmedicine.org

>

> I'm not quite sure how my rheumy diagnosed me with both lupus and

ra. I do know that I get the " butterfly rash " on my cheeks and I

have problems with my kidneys. When I first came to my rheumy my

kidneys were on the verge of going into failure, and now I have to

have tests done almost every 2 weeks. My rheumy has never talked to

my about rituxan. All I know is that it was backed by the same

company that is researching MRA, which my rheumy does want me to

try. Holly

[Guest guest]

I was actually diagnosed with probable MS when I was in the hospital. I was

admitted to the hospital almost 2 years ago because I lost all feeling in my

left hand. It started while I was at school and by the time I reached the

hospital I was stuttering and slurring my words. I also had complete loss of

feeling in the middle of my upper back between my shoulder blades, and was

having trouble walking, and an electric type shock throughout my body. They

first thought I had has a stroke, then heart disease, and finally ended up with

early MS because I had no sinificant plaques on my brain. Oh and I had a

positive bambinski sign and a positive ANA. I was then treated for MS by my

neurologist for a couple of months until he had me do another mri of my brain

and spine. No changes on my brain so he said I didn't have MS and diagnosed me

with a chemical imbalance and sent me home. I do RA changes in my hands and

feet and will have more xrays done here in 2weeks to see where we are.

When my rheumy got all my previous medical records she said that it showed some

erosion on my upper spine which would explain a lot of the symptoms that landed

me in the hospital she also brought up degenerative disk disease and will be

running more tests soon. So apparently I have had RA for a couple of years but

didn't start on the meds that I needed until November when I was also dignosed

with lupus/lupus nephritis (kidneys are doing much better now). Best wishes,

Holly

<Matsumura_Clan@...> wrote: Holly,

So, when you received a diagnosis of MS initially, why? What MS-like

problems do you have?

What does your rheumatologist believe is going on with your spine?

Has she given the problem a name?

Do you have RA-like changes in your hands or feet?

Not an MD

I'll tell you where to go!

Mayo Clinic in Rochester

http://www.mayoclinic.org/rochester

s Hopkins Medicine

http://www.hopkinsmedicine.org

>

> I'm not quite sure how my rheumy diagnosed me with both lupus and

ra. I do know that I get the " butterfly rash " on my cheeks and I

have problems with my kidneys. When I first came to my rheumy my

kidneys were on the verge of going into failure, and now I have to

have tests done almost every 2 weeks. My rheumy has never talked to

my about rituxan. All I know is that it was backed by the same

company that is researching MRA, which my rheumy does want me to

try. Holly

[Guest guest]

Have you been tested for antiphospholipid antibodies, Holly?

Not an MD

I'll tell you where to go!

Mayo Clinic in Rochester

http://www.mayoclinic.org/rochester

s Hopkins Medicine

http://www.hopkinsmedicine.org

Re: [ ] Re: Having trouble with my RA and meds!

>I was actually diagnosed with probable MS when I was in the hospital. I

>was admitted to the hospital almost 2 years ago because I lost all feeling

>in my left hand. It started while I was at school and by the time I

>reached the hospital I was stuttering and slurring my words. I also had

>complete loss of feeling in the middle of my upper back between my shoulder

>blades, and was having trouble walking, and an electric type shock

>throughout my body. They first thought I had has a stroke, then heart

>disease, and finally ended up with early MS because I had no sinificant

>plaques on my brain. Oh and I had a positive bambinski sign and a positive

>ANA. I was then treated for MS by my neurologist for a couple of months

>until he had me do another mri of my brain and spine. No changes on my

>brain so he said I didn't have MS and diagnosed me with a chemical

>imbalance and sent me home. I do RA changes in my hands and feet and will

>have more xrays done here in 2weeks to see where we are.

> When my rheumy got all my previous medical records she said that it showed

> some erosion on my upper spine which would explain a lot of the symptoms

> that landed me in the hospital she also brought up degenerative disk

> disease and will be running more tests soon. So apparently I have had RA

> for a couple of years but didn't start on the meds that I needed until

> November when I was also dignosed with lupus/lupus nephritis (kidneys are

> doing much better now). Best wishes, Holly

[Guest guest]

Not that I know of. I have heard of that before, but am not sure what it is. I

will ask my doctor tomorrow when I go in. Best wishes, Holly

<Matsumura_Clan@...> wrote: Have you been tested for

antiphospholipid antibodies, Holly?

Not an MD

I'll tell you where to go!

Mayo Clinic in Rochester

http://www.mayoclinic.org/rochester

s Hopkins Medicine

http://www.hopkinsmedicine.org

Re: [ ] Re: Having trouble with my RA and meds!

>I was actually diagnosed with probable MS when I was in the hospital. I

>was admitted to the hospital almost 2 years ago because I lost all feeling

>in my left hand. It started while I was at school and by the time I

>reached the hospital I was stuttering and slurring my words. I also had

>complete loss of feeling in the middle of my upper back between my shoulder

>blades, and was having trouble walking, and an electric type shock

>throughout my body. They first thought I had has a stroke, then heart

>disease, and finally ended up with early MS because I had no sinificant

>plaques on my brain. Oh and I had a positive bambinski sign and a positive

>ANA. I was then treated for MS by my neurologist for a couple of months

>until he had me do another mri of my brain and spine. No changes on my

>brain so he said I didn't have MS and diagnosed me with a chemical

>imbalance and sent me home. I do RA changes in my hands and feet and will

>have more xrays done here in 2weeks to see where we are.

> When my rheumy got all my previous medical records she said that it showed

> some erosion on my upper spine which would explain a lot of the symptoms

> that landed me in the hospital she also brought up degenerative disk

> disease and will be running more tests soon. So apparently I have had RA

> for a couple of years but didn't start on the meds that I needed until

> November when I was also dignosed with lupus/lupus nephritis (kidneys are

> doing much better now). Best wishes, Holly