Jump to content
RemedySpot.com
Sign in to follow this  
Guest guest

Remicade

Rate this topic

Recommended Posts

Guest guest

Althea,

I feel the same way about Enbrel. It is important to know the side effects

so you know what to look for and can make an educated decision to take it or

not. We have made an educated decision to take the meds since the benefits

outweigh the potential side effects.

I keep hoping something better will come along, but we¹d still be in the

same boat not knowing what the long term side effects would be.

a

> I am on Remicade but sure get the ebie geebies when you talk about

> it. I know though that it has helped the deterioration of my joints

> since I was on it. I wouldn't go off it unless something else came

> along that promised as much.

>

> No it doesn't help my aches all the time but when my joints were

> xrayed 2 years ago there was damage starting from the RA...now the

> damage has stayed the same and I only think that is because of the

> Remicade.

>

> Any medication is a risk for side effects but I am willing to make

> this risk and from all the studies I have read the side effects are

> minimal and you are under a doctors care at all times. You have to

> be blood tested every 8 weeks to monitor changes and even the

> slightest change to liver counts are dealt with.

>

> God bless,

> Althea

>

>

>

>

Share this post


Link to post
Share on other sites
Guest guest

My biggest problem with Remicade has been the IV process itself. I have been on

prednisone for too many years and my veins are not very big in the first place.

It took almost two hours and eight pokes to start the IV last time.The center

wants me to have a port implanted - my rheumatologist says no - too great a risk

for infection. Enough. I may stry Humira depending on the next infusion. Anyway,

while Remicade has not been a miracle for me....it has helped especially my

hands and shoulders and uppper body joints in general - still have some knee and

ankle and edema problems. I am also on MTX and folic acid. I had huge rheumatoid

nodules on my elbows- I had a doc remove one from my feet whoo would not touch

the elbows they were so big. After about a year and a half on Remicade - they

are completely gone without surgery. My improvement was gradual and I do believe

MTX must be taken in combo.

Best of luck!

> I don't post here much, but read the posts daily. I and 35 and was

> diagnosed in April with RA. I introduced myself to the group at

> that time.

>

> Right away, my rheumy put me on mtx, bextra, folic acid. He has

> upped my mtx every month by 5 mg.(am now at 25 mg.)and the swelling

> is still not gone from my feet. He is very aggressive and told me

> yesterday that he will not be satisfied until I have NO

> inflammation. So, in October (barring any miracle healing by the

> mtx), he wants to start me on Remicade. My husband is adamant that

> I not do it. He thinks that I just keep adding more medication and

> am only trading one problem for another because of the side

> effects. I have had no problems or side effects with mtx.

>

> Does anyone out there who is or has been on Remicade have any

> suggestions or helpful advice? My rheumy is really worried about

> joint damage, as I am. He says that he knows that it seems like he

> is being aggressive, but my RA is so acute that that is the only way

> to approach it.

>

> I would appreciate any comments.

>

> Thanks!

>

>

>

>

>

>

>

Share this post


Link to post
Share on other sites
Guest guest

Your husband might benefit from doing some research himself. Maybe

you could find pictures of someone with severe joint damage. My mom

has such disfigured hands and feet, and that is common with someone

who's had RA for over 20 years because the medicines were not

available back then. If you could show him pictures, and explain

that without a biological drug in RA that is not responding, you will

end up disabled for the rest of your life. You are not on a slippery

slope of more and more drugs. The way insurance works, you have to

try certain drugs first, and you only get the expensive biological

one's after you demonstrate that the first drugs are not enough.

For me, when I got RA, a biological drug was the only acceptable

treatment. Of course, I could not simply choose which medicine I

thought would work best. My rheumy had to try mtx alone first. We

did just what you are doing now. I am on Humira and mtx and

prednisone and folic acid. I have no side effects from any of them,

except I do have bone loss from the prednisone. My rheumy promises I

will never end up like my mom, and I believe in him.

Your husband just does not understand this disease yet. Does he go

to your rheumy appts with you? Does he look online at the latest

research and opinions that RA must be treated aggressively from day

1? If he doesn't want to do those things, then tell him he does not

have a right to inject his uninformed opinion on your treatment.

I wish you the best with the Remicade.

Jennie

> I don't post here much, but read the posts daily. I and 35 and was

> diagnosed in April with RA. I introduced myself to the group at

> that time.

>

> Right away, my rheumy put me on mtx, bextra, folic acid. He has

> upped my mtx every month by 5 mg.(am now at 25 mg.)and the swelling

> is still not gone from my feet. He is very aggressive and told me

> yesterday that he will not be satisfied until I have NO

> inflammation. So, in October (barring any miracle healing by the

> mtx), he wants to start me on Remicade. My husband is adamant that

> I not do it. He thinks that I just keep adding more medication and

> am only trading one problem for another because of the side

> effects. I have had no problems or side effects with mtx.

>

> Does anyone out there who is or has been on Remicade have any

> suggestions or helpful advice? My rheumy is really worried about

> joint damage, as I am. He says that he knows that it seems like he

> is being aggressive, but my RA is so acute that that is the only

way

> to approach it.

>

> I would appreciate any comments.

>

> Thanks!

>

Share this post


Link to post
Share on other sites
Guest guest

, I can understand your husband's attitude, because my husband

felt the same way and frankly, sometime I do too. It is frightening

to put yourself at increased risk for just about every disease in the

book by taking certain medications, and it is upsetting to have to

take more meds just to counteract the side effects of the others

you're taking. All of us have to walk that fine line balancing the

potential benefits against the possible negative (or worse!) side

effects.

I did take my husband to one of my doctor appointments and it was

very helpful. He had a chance to meet him and ask any questions he

had. I have a great rheumatologist, and knowing the trust that I

have in this doctor has helped my husband learn to trust his opinion

more, too. I've never had a problem with my husband not believing how

much pain I was having or anything like that. I developed arthritis

almost literally over night, so he saw firsthand the difference it

made in me. But the disease is frightening to him, as it is to me,

but he reads the articles I print out for him (I'm careful not to

overwhelm him with too much), and I think the education has really

helped.

> Your husband might benefit from doing some research himself. Maybe

> you could find pictures of someone with severe joint damage. My

mom

> has such disfigured hands and feet, and that is common with someone

> who's had RA for over 20 years because the medicines were not

> available back then. If you could show him pictures, and explain

> that without a biological drug in RA that is not responding, you

will

> end up disabled for the rest of your life. You are not on a

slippery

> slope of more and more drugs. The way insurance works, you have to

> try certain drugs first, and you only get the expensive biological

> one's after you demonstrate that the first drugs are not enough.

>

> For me, when I got RA, a biological drug was the only acceptable

> treatment. Of course, I could not simply choose which medicine I

> thought would work best. My rheumy had to try mtx alone first. We

> did just what you are doing now. I am on Humira and mtx and

> prednisone and folic acid. I have no side effects from any of

them,

> except I do have bone loss from the prednisone. My rheumy promises

I

> will never end up like my mom, and I believe in him.

>

> Your husband just does not understand this disease yet. Does he go

> to your rheumy appts with you? Does he look online at the latest

> research and opinions that RA must be treated aggressively from day

> 1? If he doesn't want to do those things, then tell him he does

not

> have a right to inject his uninformed opinion on your treatment.

>

> I wish you the best with the Remicade.

>

> Jennie

>

> --- In , " mskettler " <mskettler@y...>

wrote:

> > I don't post here much, but read the posts daily. I and 35 and

was

> > diagnosed in April with RA. I introduced myself to the group at

> > that time.

> >

> > Right away, my rheumy put me on mtx, bextra, folic acid. He has

> > upped my mtx every month by 5 mg.(am now at 25 mg.)and the

swelling

> > is still not gone from my feet. He is very aggressive and told

me

> > yesterday that he will not be satisfied until I have NO

> > inflammation. So, in October (barring any miracle healing by the

> > mtx), he wants to start me on Remicade. My husband is adamant

that

> > I not do it. He thinks that I just keep adding more medication

and

> > am only trading one problem for another because of the side

> > effects. I have had no problems or side effects with mtx.

> >

> > Does anyone out there who is or has been on Remicade have any

> > suggestions or helpful advice? My rheumy is really worried about

> > joint damage, as I am. He says that he knows that it seems like

he

> > is being aggressive, but my RA is so acute that that is the only

> way

> > to approach it.

> >

> > I would appreciate any comments.

> >

> > Thanks!

> >

Share this post


Link to post
Share on other sites
Guest guest

Jennie,

I am still fighting going on enbrel. As I mentioned, I take antibiotic

treatment which is also a DMARD. Have any of you tried that before going on

the harder drugs? I think I will eventually have to go on enbrel but for

now I'm trying to stick with the antibiotics. The deformity in my thumb

does scare me but I am so afraid of enbrel and having to watch so carefully

for infections and lymphoma.

ette

>

Share this post


Link to post
Share on other sites
Guest guest

ette,

I did not try antibiotic therapy. I know my mom feels better when

she takes antibiotics, but I don't think any of her rheumy's have

ever mentioned it. I agree with trying other things first, but I am

much more afraid of disfigurement and disability. Those things are

almost guaranteed when you have RA. The risk of lymphoma is small

based on the stuff posted yesterday. And my mom has had to stop

Enbrel for a few weeks when she's had a severe illness, but it's not

been a problem for her. So it's 100% change of joint damage or a

tiny change of lymphoma (in my mind).

I remember when my mom first took Enbrel. She already had severe

joint destruction. But she called one day and was just elated, she

called Enbrel a miracle. After so many years of watching her in pain

and deteriorating, it was amazing to hear her describe feeling good

again. And knowing the for me, Humira can prevent me ever getting

the problems she has now, I do not worry about the side effects too

much. These days, my mom is still in almost constant pain even with

the Enbrel. It's because she has bone on bone in her hands and feet,

her wrists are a disaster and her ankles are about to collapse. She

was on mtx for 10 years and she's been on Enbrel since before it was

officially approved. She does not have any problems (other than

osteoporosis, but this is more likely from the seizure medication

than the prednisone) except for the one major problem of no joints.

I have had bone loss from the prednisone I've taken, but that can be

combated with exercise and calcium supplements.

I think we both have valid fears, they are just concentrated on

opposite things. Watching for joint damage and side effects are BOTH

important. As long as you don't allow your fear of the drugs let the

RA win the war, it is certainly okay to be careful about what drugs

you take to treat it.

Jennie

--- In , " Warren Portnoy " <wport@c...>

wrote:

> Jennie,

>

> I am still fighting going on enbrel. As I mentioned, I take

antibiotic

> treatment which is also a DMARD. Have any of you tried that before

going on

> the harder drugs? I think I will eventually have to go on enbrel

but for

> now I'm trying to stick with the antibiotics. The deformity in my

thumb

> does scare me but I am so afraid of enbrel and having to watch so

carefully

> for infections and lymphoma.

>

> ette

> >

Share this post


Link to post
Share on other sites
Guest guest

ette,

I am on Enbrel and have no bad side effects. I don't have frequent

infections, even though my white blood cell count is still below normal

from previous medications. When I get sick, I just don't inject the

Enbrel until I get well. I have been on Enbrel for over a year now and

have been sick only a couple of times, once with a stomach virus and

once with a summer cold.

From the articles on lymphoma that a and have recently sent,

it seems that we have a higher risk of lymphoma with uncontrolled

inflammation from RA.

Deformities scare me a lot more than Enbrel does. So far I don't have

any, thank goodness, and I think it's because Enbrel has halted the

progression of the RA. I had nodules on my elbows, and I do believe

that they have disappeared since I've been on Enbrel. My fingers, which

used to be so swollen, look just about normal now.

Sue

On Wednesday, July 28, 2004, at 03:14 PM, Warren Portnoy wrote:

>

> I am still fighting going on enbrel. As I mentioned, I take antibiotic

> treatment which is also a DMARD. Have any of you tried that before

> going on

> the harder drugs? I think I will eventually have to go on enbrel but

> for

> now I'm trying to stick with the antibiotics. The deformity in my

> thumb

> does scare me but I am so afraid of enbrel and having to watch so

> carefully

> for infections and lymphoma.

>

> ette

Share this post


Link to post
Share on other sites
Guest guest

Hi Sue,

I am glad to hear that you are doing well on enbrel. Do you take anything

else with it? My fingers are swollen right now and I don't like the way

they feel or the fact that I can't wear my rings. It's good to know that

enbrel can stop that. Do you still have symptoms while on enbrel? Do you

inject yourself, how often?

Thanks,

ette

>

Share this post


Link to post
Share on other sites
Guest guest

Jennie,

What is the difference in enbrel and humira? Is one better than another? I

want to ask my doctor if I can continue with the antibiotics and add a

little of either enbrel or humira. I am concerned about the stiffness in my

hands and ankles. Do you still have stiffness on these other drugs?

ette

Share this post


Link to post
Share on other sites
Guest guest

ette,

I¹ve been on Enbrel since it was approved in 1998. During this time I have

never had a problem with infection. I¹m careful to stop Enbrel if I have a

cold. Enbrel has been a life saver for me. I have read a great deal about

antibiotics but my disease is longstanding and antibiotics are most

effective early in the disease. I¹ve recently moved to another state and

will be curious to see if any of the doctors here will prescribe

antibiotics. Enbrel has given me such a better quality of life that for me

it is worth the risks of the possible side effects. Everyone has to make

that decision themselves.

a

> Jennie,

>

> I am still fighting going on enbrel. As I mentioned, I take antibiotic

> treatment which is also a DMARD. Have any of you tried that before going on

> the harder drugs? I think I will eventually have to go on enbrel but for

> now I'm trying to stick with the antibiotics. The deformity in my thumb

> does scare me but I am so afraid of enbrel and having to watch so carefully

> for infections and lymphoma.

>

> ette

>> >

>

>

>

>

>

Share this post


Link to post
Share on other sites
Guest guest

ette, I also take Bextra. I can't take mtx because my white blood

cell count is still low, even after stopping it. I inject myself twice

a week. I still have a little stiffness, but not enough to even

complain about. I know that I'm not in remission, because I can tell

when it's time to inject Enbrel. A few little aches and pains come, but

are quickly gone after I inject Enbrel. Enbrel has been like a miracle

drug for me, and I'm thankful that it's available.

At one point (before Enbrel) my fingers were so swollen that I couldn't

squeeze out a wash cloth; I couldn't open a bottle or jar; and I

couldn't cut my own meat. My knees hurt so badly that I would pee

standing up over the commode so that I wouldn't have to bend them.

I am so thankful that I have a wonderful rheumy who attacked my RA

aggressively from the start. I don't think that I have any joint damage

because of this.

Sue

On Thursday, July 29, 2004, at 11:37 AM, Warren Portnoy wrote:

> Hi Sue,

>

> I am glad to hear that you are doing well on enbrel. Do you take

> anything

> else with it? My fingers are swollen right now and I don't like the

> way

> they feel or the fact that I can't wear my rings. It's good to know

> that

> enbrel can stop that. Do you still have symptoms while on enbrel? Do

> you

> inject yourself, how often?

Share this post


Link to post
Share on other sites
Guest guest

Sue,

I also am having trouble opening bottles of water - I used a rubber opener.

I am glad to hear that the enbrel has made such a difference. I wonder why

you still have pain if the inflammation is better. Is there much difference

in enbrel and humira?

I am really thinking it's time I give it a try.

Thanks again,

ette

Share this post


Link to post
Share on other sites
Guest guest

ette,

Since my RA symptoms started I have had periods with pain and no

inflamation. I have no idea why that is, but I think you can have

swelling inside the joint, or the joint is otherwise being attacked,

and not always have enough to show outward swelling. Sometimes I go

to my rheumy complaining of a joint that hurts, and it doesn't look

swollen to me. Then he'll push on it and I'll scream out in pain

(resisting the urge to smack him really hard). Of course, his

response when I do that is always to push on it a couple more times.

If I am watching him do it, it always seems squishy when he pushes.

So I think in those cases it's swollen, just not that much.

Jennie

--- In , " Warren Portnoy " <wport@c...>

wrote:

> Sue,

>

> I also am having trouble opening bottles of water - I used a rubber

opener.

> I am glad to hear that the enbrel has made such a difference. I

wonder why

> you still have pain if the inflammation is better. Is there much

difference

> in enbrel and humira?

>

> I am really thinking it's time I give it a try.

>

> Thanks again,

> ette

Share this post


Link to post
Share on other sites
Guest guest

ette, I have very little pain. I don't take any medications for

pain. I just meant that I can sometimes tell when it's time for the

Enbrel shot because I will have just a tiny bit of pain, hardly enough

to even notice. Without the Enbrel, I think my RA would soon come back

full force.

Enbrel and Humira are both TNF (tumor necrosis factor) antagonists. TNF

is involved in inflammation. Enbrel has been on the market longer than

Humira. With Enbrel, you give the shots twice a week and you have to

mix it yourself, which is no big deal because it gets to be almost

automatic. Sometime in the near future it will be premixed and will be

given once a week. Humira already comes premixed, and the shots are

given once every two weeks, I believe. But some people say that the

shots sting.

I had to make the decision between Enbrel and Humira. I chose Enbrel

because it has a longer track record.

Sue

On Friday, July 30, 2004, at 02:48 PM, Warren Portnoy wrote:

>

> I also am having trouble opening bottles of water - I used a rubber

> opener.

> I am glad to hear that the enbrel has made such a difference. I

> wonder why

> you still have pain if the inflammation is better. Is there much

> difference

> in enbrel and humira?

>

> I am really thinking it's time I give it a try.

Share this post


Link to post
Share on other sites
Guest guest

Hi all I was diagnosed 5 months ago with RA i am on remicade. I still hurt. I

have gone to my Rhuemy in total pain he looks at my hands and squeezes them then

tells me it is impossible to hurt and be in as much pain as i claim. is it

possible to not show signs like that. A mri showed damage in my hands. my

inflammation level by blood test is low. it does not make sense that i hurt so

much. My crp 5 months ago was .039 I hurt alot more now and my crp before my

remicade treatment the other day .4 . The morning my hubby drew the blood i was

having a good day not really any stiffness. Since my remicade I feel horrible

and my whole body aches. My dr. says that he only deals with inflammation not

mental issues.(a real jerk he is) When we move to St. louis i will be getting a

new dr. So now i wonder if something else is wrong with me? What do you all

think. Thanks Latisha

ette,

Since my RA symptoms started I have had periods with pain and no

inflamation. I have no idea why that is, but I think you can have

swelling inside the joint, or the joint is otherwise being attacked,

and not always have enough to show outward swelling. Sometimes I go

to my rheumy complaining of a joint that hurts, and it doesn't look

swollen to me. Then he'll push on it and I'll scream out in pain

(resisting the urge to smack him really hard). Of course, his

response when I do that is always to push on it a couple more times.

If I am watching him do it, it always seems squishy when he pushes.

So I think in those cases it's swollen, just not that much.

Jennie

--- In , " Warren Portnoy " <wport@c...>

wrote:

> Sue,

>

> I also am having trouble opening bottles of water - I used a rubber

opener.

> I am glad to hear that the enbrel has made such a difference. I

wonder why

> you still have pain if the inflammation is better. Is there much

difference

> in enbrel and humira?

>

> I am really thinking it's time I give it a try.

>

> Thanks again,

> ette

Share this post


Link to post
Share on other sites
Guest guest

Latisha- I mentioned seeing Dr. or associate at St. Louis U's med school

rheumatology clinic. I have a lot of faith in him. He should explore and be able

to explain your readings. Are you on MTX with Remicade. You will sometimes feel

crummy for a few days after Remicade but I wonder given your symptoms. I

experience major fatigue for a few days after infusion.

-------------- Original message from Latisha Vallone : --------------

> Hi all I was diagnosed 5 months ago with RA i am on remicade. I still hurt. I

> have gone to my Rhuemy in total pain he looks at my hands and squeezes them

then

> tells me it is impossible to hurt and be in as much pain as i claim. is it

> possible to not show signs like that. A mri showed damage in my hands. my

> inflammation level by blood test is low. it does not make sense that i hurt so

> much. My crp 5 months ago was .039 I hurt alot more now and my crp before my

> remicade treatment the other day .4 . The morning my hubby drew the blood i

was

> having a good day not really any stiffness. Since my remicade I feel horrible

> and my whole body aches. My dr. says that he only deals with inflammation not

> mental issues.(a real jerk he is) When we move to St. louis i will be getting

a

> new dr. So now i wonder if something else is wrong with me? What do you all

> think. Thanks Latisha

>

>

> ette,

>

> Since my RA symptoms started I have had periods with pain and no

> inflamation. I have no idea why that is, but I think you can have

> swelling inside the joint, or the joint is otherwise being attacked,

> and not always have enough to show outward swelling. Sometimes I go

> to my rheumy complaining of a joint that hurts, and it doesn't look

> swollen to me. Then he'll push on it and I'll scream out in pain

> (resisting the urge to smack him really hard). Of course, his

> response when I do that is always to push on it a couple more times.

> If I am watching him do it, it always seems squishy when he pushes.

> So I think in those cases it's swollen, just not that much.

>

> Jennie

>

>

> > Sue,

> >

> > I also am having trouble opening bottles of water - I used a rubber

> opener.

> > I am glad to hear that the enbrel has made such a difference. I

> wonder why

> > you still have pain if the inflammation is better. Is there much

> difference

> > in enbrel and humira?

> >

> > I am really thinking it's time I give it a try.

> >

> > Thanks again,

> > ette

>

>

>

>

Share this post


Link to post
Share on other sites
Guest guest

Good grips have a wonderful gadget- it is pie shaped and adjusts to meet bottle

size - just fit and twist- great when hands are sore.

-------------- Original message from " Warren Portnoy " : --------------

> Sue,

>

> I also am having trouble opening bottles of water - I used a rubber opener.

> I am glad to hear that the enbrel has made such a difference. I wonder why

> you still have pain if the inflammation is better. Is there much difference

> in enbrel and humira?

>

> I am really thinking it's time I give it a try.

>

> Thanks again,

> ette

>

>

>

>

>

>

>

Share this post


Link to post
Share on other sites
Guest guest

Latisha, I'm sorry that you have such a jerk for a doctor! How

insensitive he seems to be, and you sure don't need that right now.

I'm not sure about Remicade, I have never tried that med, so I don't

know how long it takes to start working. Are you on anything else

with the Remicade, I would think so.

I hope you will be moving soon, I would not go back,....Tawny

> > Sue,

> >

> > I also am having trouble opening bottles of water - I used a

rubber

> opener.

> > I am glad to hear that the enbrel has made such a difference. I

> wonder why

> > you still have pain if the inflammation is better. Is there much

> difference

> > in enbrel and humira?

> >

> > I am really thinking it's time I give it a try.

> >

> > Thanks again,

> > ette

>

>

>

>

Share this post


Link to post
Share on other sites
Guest guest

No im not on MTX which i just read somewhere that remicade is ONLY given with

MTX so i dont know why the doc hasnt put me on. I asked him to and that is when

i had that horrible visit with him. Im young (31) and look healthy so i guess i

dont look like im dieing in pain plus with my bloold levels of inflammation

being so low? Does anyone know of any studies done in the blood work of

inflammation and how much it changes like can it be low in the afternoon and

then in eve be higher by quite a bit. I would like to see studies on people who

had their blood drawn everyday for a month to see the if it changes alot. I

wonder since i felt ok the other day and it didnt seem that bad and now i feel

horrible. My doc said that its not possible for me to feel so crappy after a

treatment that the same day i should feel great with remicade. But then again

how would he know anything he doesnt have RA and doesnt have to put up with all

the drugs we do. I'd like to give him a dose of a few things and

see how he feels after. lol ok i admit that is a bit evil. sorry. :) Thanks

everyone. Latisha

k.j.choate@... wrote:Latisha- I mentioned seeing Dr. or associate at

St. Louis U's med school rheumatology clinic. I have a lot of faith in him. He

should explore and be able to explain your readings. Are you on MTX with

Remicade. You will sometimes feel crummy for a few days after Remicade but I

wonder given your symptoms. I experience major fatigue for a few days after

infusion.

-------------- Original message from Latisha Vallone : --------------

> Hi all I was diagnosed 5 months ago with RA i am on remicade. I still hurt. I

> have gone to my Rhuemy in total pain he looks at my hands and squeezes them

then

> tells me it is impossible to hurt and be in as much pain as i claim. is it

> possible to not show signs like that. A mri showed damage in my hands. my

> inflammation level by blood test is low. it does not make sense that i hurt so

> much. My crp 5 months ago was .039 I hurt alot more now and my crp before my

> remicade treatment the other day .4 . The morning my hubby drew the blood i

was

> having a good day not really any stiffness. Since my remicade I feel horrible

> and my whole body aches. My dr. says that he only deals with inflammation not

> mental issues.(a real jerk he is) When we move to St. louis i will be getting

a

> new dr. So now i wonder if something else is wrong with me? What do you all

> think. Thanks Latisha

>

>

> ette,

>

> Since my RA symptoms started I have had periods with pain and no

> inflamation. I have no idea why that is, but I think you can have

> swelling inside the joint, or the joint is otherwise being attacked,

> and not always have enough to show outward swelling. Sometimes I go

> to my rheumy complaining of a joint that hurts, and it doesn't look

> swollen to me. Then he'll push on it and I'll scream out in pain

> (resisting the urge to smack him really hard). Of course, his

> response when I do that is always to push on it a couple more times.

> If I am watching him do it, it always seems squishy when he pushes.

> So I think in those cases it's swollen, just not that much.

>

> Jennie

>

>

> > Sue,

> >

> > I also am having trouble opening bottles of water - I used a rubber

> opener.

> > I am glad to hear that the enbrel has made such a difference. I

> wonder why

> > you still have pain if the inflammation is better. Is there much

> difference

> > in enbrel and humira?

> >

> > I am really thinking it's time I give it a try.

> >

> > Thanks again,

> > ette

>

>

>

>

Share this post


Link to post
Share on other sites
Guest guest

> Hi all I was diagnosed 5 months ago with RA i am on remicade. I

still hurt.>

Hi Latisha,

I'm so sorry your pain has not gotten better with treatment. Can you

see another doctor ASAP--even your family doc if you can't get into a

rheumy? Seems like you need something for pain relief NOW. To have a

doctor insinuate that your perception of pain is a mental problem is

very inappropriate.

S.

Share this post


Link to post
Share on other sites
Guest guest

My doc said that its not possible for me to feel so crappy after a

treatment that the same day i should feel great with remicade. But

then again how would he know

EXACTLY! YOU know, and that's all that matters. A better doctor would

believe you.

S.

Share this post


Link to post
Share on other sites
Guest guest

In a message dated 28/07/2004 11:42:23 Central Standard Time,

mskettler@... writes:

> Does anyone out there who is or has been on Remicade have any

> suggestions or helpful advice?

My mom tried to keep me from starting Remicade, too. I'll say what I said to

her: I would rather be able to function and work than be in a wheelchair.

If Remicade keeps me on my feet, I'll deal with the side effects. I haven't

really had any side effects to speak of, and have been working 2 jobs...well

worth it to me. Cary

Share this post


Link to post
Share on other sites
Guest guest

Lynn, I hope that you can start back on the Remciade. Since you took

it before, you will know what to expect. I hope that the insurance

comes through, and you can get started soon. I just don't understand

why we have so many problems with insurance? They rip us off, and

then we still have to beg for help, it upsets me a little:(

I hope that you enjoy the weekend, and get some good news for us,

telling us your approved for your med, take care, Tawny

PS:Happy Halloween, don't eat too much candy!!!

--- In , Ruf-Caimi <ruf-caimi@e...>

wrote:

> I have been in such a terrible flare that yesterday the Rheumy

decided

> maybe it is time for remicade. I have held off doing this for a

long

> time. But the last couple of month have been terrible. I think it

> started when I went back to school. I have to wait and see if my

> insurance will pay for it. When I called they told me no.

However, the

> Rheumy says they will pay for it. I tried remicade four years ago

and

> it was great. I had to stop because of stomach problems. Right

now the

> worse is I wake up in pain. So I will have to wait and see.

> Hope everyone is doing okay and will be able to enjoy Halloween.

> Lynn (MeMom)

Share this post


Link to post
Share on other sites
Guest guest

Lynn,

I¹m sorry you¹re still flaring. You¹ve been flaring way to long, so I hope

your insurance will approve the Remicade without and problems. I hope it is

as helpful as it was before and you have no side effects. Do you think

stress is causing the flare?

a

> I have been in such a terrible flare that yesterday the Rheumy decided

> maybe it is time for remicade. I have held off doing this for a long

> time. But the last couple of month have been terrible. I think it

> started when I went back to school. I have to wait and see if my

> insurance will pay for it. When I called they told me no. However, the

> Rheumy says they will pay for it. I tried remicade four years ago and

> it was great. I had to stop because of stomach problems. Right now the

> worse is I wake up in pain. So I will have to wait and see.

> Hope everyone is doing okay and will be able to enjoy Halloween.

> Lynn (MeMom)

>

>

>

>

Share this post


Link to post
Share on other sites
Guest guest

Thank you and I agree about the insurance companies. We have to pay so

much for the insurance and than they don't want to give us anything. I

will let you know how it turns out. My son is having a Halloween party

tonight. Tomorrow night is my granddaughters b-day so we always go there

for Halloween. Have a good Halloween,

Lynn

Tawny wrote:

> Lynn, I hope that you can start back on the Remciade. Since you took

> it before, you will know what to expect. I hope that the insurance

> comes through, and you can get started soon. I just don't understand

> why we have so many problems with insurance? They rip us off, and

> then we still have to beg for help, it upsets me a little:(

> I hope that you enjoy the weekend, and get some good news for us,

> telling us your approved for your med, take care, Tawny

> PS:Happy Halloween, don't eat too much candy!!!

>

>

> > I have been in such a terrible flare that yesterday the Rheumy

> decided

> > maybe it is time for remicade. I have held off doing this for a

> long

> > time. But the last couple of month have been terrible. I think it

> > started when I went back to school. I have to wait and see if my

> > insurance will pay for it. When I called they told me no.

> However, the

> > Rheumy says they will pay for it. I tried remicade four years ago

> and

> > it was great. I had to stop because of stomach problems. Right

> now the

> > worse is I wake up in pain. So I will have to wait and see.

> > Hope everyone is doing okay and will be able to enjoy Halloween.

> > Lynn (MeMom)

>

>

>

Share this post


Link to post
Share on other sites

Join the conversation

You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

Loading...
Sign in to follow this  

×
×
  • Create New...