remicade

[Guest guest]

- When you say "autoimmune" drugs, are you referring to the biologics? or are you referring to immunosuppresants? I'm not sure what class Methotrexate is. My doctor had me on a form of cyclosporine for awhile. Didn't do anything for me. But if your wife can't take biologics (Enbrel, Humira) maybe a stronger course of immunosuppresants might be something you could ask about.

As far as alternative stuff goes - JB has written a thread about a very strict diet his girlfriend is on and she is seeing some improvement. I know that for me, diet and stress play a big part, but it's not a direct overnight correlation. I think that with diet it takes a while to get rid of stuff in your body and for "bad" things to affect it. Same with stress for me. That could be why she doesn't see the connection. Maybe it would be worth her while to try a really strict diet for about two weeks and see then if it makes a difference. All this stuff takes time! Like any drug, there's often a waiting period before it's effectiveness is noticed.

Good luck to you.

gloria

[Guest guest]

what are her eating habits? it has helped me to stop eating red meat, sugars, espartamines like equal, and the pink one and splenda as well as diabetisweet, dairy, fats, and eating a lot of raw or nearly raw vegetables, nuts and fruit and soaking my beans in two waters for 12-14 hours before cooking them as well as the rice.. these are good protien foods and RA does break down muscle and this would be helpful to keep them from breaking down as much. i also find ginger helps to fight the inflamation. just my opinion.. it is best if all foods are organic which means grown without poisons and genetic engineering etc. also raw organic eggs are a good protein source. i use them in a soy shake and feel better .

love.. granny leeP S.. i use an herb called Stevia to sweeten what ever i want sweet and it is GOOD!!!!!

----- Original Message -----

From: paulp_73

Rheumatoid Arthritis

hi all..well for those of you that know me, I just wanted to giveeveryone update. As you know, my wife has had RA for the past 12months. Shes 29 and started taking remicade in March. Now its back to the drawing boards because shes on increased amount of methotrexate, folic acid, and steriods - prendisone (20mg per day)If anyone has any ideas or thoughts, please let me know..i dont wanther to take the 20mg of prendisone beacuse of the long termeffects. Also, any ideas on other treatments would help. I'veheard a lot about the food book, but cant get my wife to belive init because she never hurts after eating any particular food. Any other alternative treatments..acupuncture..etc.Thanks.

[Guest guest]

Hello everyone, This is in VA (where we got hammered with another 8 inches of snow last night & more is expected tonight). I'm sorry your wife developed this reaction to Remicade. Was she taking Benadryl & Tylenol as pre-meds (30 minutes before the treatment to prevent an allergic reaction). It seems to me that the rash would be an allergic reaction instead of lupus but I'm not a doctor. You are right that it isn't a good idea to be on prednisone long-term. I have been on it for 4 years at varying dosages (started at 40 mg and am currently on 4mg). As far as foods go, I'm not convinced that taking out/adding certain foods would be beneficial to me (everyone is different) but it is probably worth trying. You may want to check out Arthritis Today magazine from the Arthritis Foundation (www.arthritis.org). They've done some pretty good articles on the benefits of certain foods (ie the anti-oxidant power of blueberries).

Take care,

Steph in VA

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~>hi all..well for those of you that know me, I just wanted to give

>everyone update. As you know, my wife has had RA for the past 12

>months. Shes 29 and started taking remicade in March. The Remicade

>was helping a lot with a combination with Methotrexate and Folic

>Acid. She received her last infusion in Oct and at that time, she

>went in a week early because she was hurting and they also increased

>the dossage from 3mg/k to 5mg/k. 2 weeks after the infusion, she

>was still hurting and it looks like her body is building antibodies

>against the Remicade. Also, 3-4 months ago, she started getting

>rashes the size of a quarter on her back, behind the ears and now on

>the side of her face and chest. they said it was drug induced LUPUS

>and that all the other autoimmune drugs would cause the same rash.

>We have found that it's being caused my the Remicade and theres only

>like 8 cases of this reported and when its reported, they report it

>in dermatology reports not rheumtology reports.

>

>Now its back to the drawing boards because shes on increased amount

>of methotrexate, folic acid, and steriods - prendisone (20mg per day)

>

>If anyone has any ideas or thoughts, please let me know..i dont want

>her to take the 20mg of prendisone beacuse of the long term

>effects. Also, any ideas on other treatments would help. I've

>heard a lot about the food book, but cant get my wife to belive in

>it because she never hurts after eating any particular food. Any

>other alternative treatments..acupuncture..etc.

>

>Thanks

>

>

>

>

>

[Guest guest]

I like 's suggestion about Arthritis Today and I'd like to add Dr. Weill http://www.drweil.com/app/cda/drw_cda.html who has a lot of information on various healthy foods. I don't follow any rigorous diet and I use traditional medicines, but I do selectively use healthful foods. Good luck and God bless.

----- Original Message -----

From: paulp_73

Rheumatoid Arthritis

Sent: Sunday, December 14, 2003 1:17 AM

Subject: Remicade

hi all..well for those of you that know me, I just wanted to giveeveryone update. As you know, my wife has had RA for the past 12months. Shes 29 and started taking remicade in March. The Remicadewas helping a lot with a combination with Methotrexate and FolicAcid. She received her last infusion in Oct and at that time, shewent in a week early because she was hurting and they also increasedthe dossage from 3mg/k to 5mg/k. 2 weeks after the infusion, shewas still hurting and it looks like her body is building antibodiesagainst the Remicade. Also, 3-4 months ago, she started gettingrashes the size of a quarter on her back, behind the ears and now onthe side of her face and chest. they said it was drug induced LUPUS and that all the other autoimmune drugs would cause the same rash. We have found that it's being caused my the Remicade and theres only like 8 cases of this reported and when its reported, they report it in dermatology reports not rheumtology reports.Now its back to the drawing boards because shes on increased amount of methotrexate, folic acid, and steriods - prendisone (20mg per day)If anyone has any ideas or thoughts, please let me know..i dont wanther to take the 20mg of prendisone beacuse of the long termeffects. Also, any ideas on other treatments would help. I'veheard a lot about the food book, but cant get my wife to belive init because she never hurts after eating any particular food. Any other alternative treatments..acupuncture..etc.Thanks

[Guest guest]

Thanks for the info...right now..she really doesnt believe in the

diet changes to help her RA...I've tried to get her to be more open

minded, but she just doestn't believe it works because after eating

certain foods, she doesnt get a flare up, so that makes her believe

that she doesnt have that issue with her RA..

Been trying to get her to open her mind, but its been a struggle.

Thanks

> what are her eating habits? it has helped me to stop eating red

meat, sugars, espartamines like equal, and the pink one and splenda

as well as diabetisweet, dairy, fats, and eating a lot of raw or

nearly raw vegetables, nuts and fruit and soaking my beans in two

waters for 12-14 hours before cooking them as well as the rice..

these are good protien foods and RA does break down muscle and this

would be helpful to keep them from breaking down as much. i also

find ginger helps to fight the inflamation. just my opinion.. it is

best if all foods are organic which means grown without poisons and

genetic engineering etc. also raw organic eggs are a good protein

source. i use them in a soy shake and feel better .

> love.. granny lee

> P S.. i use an herb called Stevia to sweeten what ever i want

sweet and it is GOOD!!!!!

>

>

> ----- Original Message -----

> From: paulp_73

> Rheumatoid Arthritis

>

>

> hi all..well for those of you that know me, I just wanted to give

> everyone update. As you know, my wife has had RA for the past 12

> months. Shes 29 and started taking remicade in March. Now its

back to the drawing boards because shes on increased amount

> of methotrexate, folic acid, and steriods - prendisone (20mg per

day)

>

> If anyone has any ideas or thoughts, please let me know..i dont

want

> her to take the 20mg of prendisone beacuse of the long term

> effects. Also, any ideas on other treatments would help. I've

> heard a lot about the food book, but cant get my wife to belive

in

> it because she never hurts after eating any particular food.

Any

> other alternative treatments..acupuncture..etc.

>

> Thanks

>

> .

[Guest guest]

Gloria..

Thanks for the long talk we had today...or should i say this

morning.. There talking about the Biologic drugs that she cant

take anymore.

Thanks

> - When you say " autoimmune " drugs, are you referring to the

biologics?

> or are you referring to immunosuppresants? I'm not sure what class

Methotrexate

> is. My doctor had me on a form of cyclosporine for awhile. Didn't

do anything

> for me. But if your wife can't take biologics (Enbrel, Humira)

maybe a

> stronger course of immunosuppresants might be something you could

ask about.

>

> As far as alternative stuff goes - JB has written a thread about a

very

> strict diet his girlfriend is on and she is seeing some

improvement. I know that

> for me, diet and stress play a big part, but it's not a direct

overnight

> correlation. I think that with diet it takes a while to get rid of

stuff in your body

> and for " bad " things to affect it. Same with stress for me. That

could be why

> she doesn't see the connection. Maybe it would be worth her while

to try a

> really strict diet for about two weeks and see then if it makes a

difference.

> All this stuff takes time! Like any drug, there's often a waiting

period before

> it's effectiveness is noticed.

>

> Good luck to you.

> gloria

[Guest guest]

well.. you can lead a horse to water....but.... you know the drill. I was like her when it came to pain pills! didn't want to take them.. my smart talk was..if i'm gona die, i just as soon die with what i got, not what i get from taking pills with all the side effects................................."

when i got to hurting enough, i was glad to have the 'pills'! also when i got bad enough i started researching to see if i could find ways of improving my resistance to the desease.

among other things, before, i had to have a taller seat on the comode as didn't have the strength to get up from a lower commode. now i don't need it. i'm not in total recession, but i'm better than i was and i really think it is from eating healthier.

Wishing you and yours well... love.. grany lee

p.s.... i get tickled when some one tells me "i've been eating that all my life and it didn't hurt me..." ...as they sit there unable to get out of their chair or pick up their coffee cup because their body is either too painful or void of strength.... something did happen to hurt us and the only thing we depended on to build and strengthen our bodies is what we eat and drink.

just a thought..----- Original Message -----

From: paulp_73

Rheumatoid Arthritis

Sent: Monday, December 15, 2003 1:59 AM

Subject: Re: Remicade

Thanks for the info...right now..she really doesnt believe in the diet changes to help her RA...I've tried to get her to be more open minded, but she just doestn't believe it works because after eating certain foods, she doesnt get a flare up, so that makes her believe that she doesnt have that issue with her RA..Been trying to get her to open her mind, but its been a struggle.Thanks.

[Guest guest]

gonna start remicade next week, feeling pretty scared about it. I

have been on Mex,prenisone and salazine sp?. It hasnt done much for

me. I feel miserable and depressed. I would like to hear from you

guys about some of the possible side effects. I would also like to

know what I should ask my reumy for in terms of pain meds. Im not

getting any relief.

Rhonda

[Guest guest]

Rhonda,

The pain of RA can be unbearable. I would ask for some Hydrocodone,

or Oxycodone if your taking Prednisone. Don't be afraid of the

Remicade. The new biologic drugs do wonders. I've been on Enbrel for

6 weeks and what a difference it is starting to make. I don't need to

take my pain meds daily and am weening off the Prednisone. I can see

my knee cap and have flexibility in my knee.

Best of luck,

Jay

> gonna start remicade next week, feeling pretty scared about it. I

> have been on Mex,prenisone and salazine sp?. It hasnt done much for

> me. I feel miserable and depressed. I would like to hear from you

> guys about some of the possible side effects. I would also like to

> know what I should ask my reumy for in terms of pain meds. Im not

> getting any relief.

>

> Rhonda

[Guest guest]

I've been on Remicade for a year and an half. I was started on 3 mg/kg and after 3 treatments went up to 5 mg/kg for two treatments and then to 6 mg/kg which is where I am now. Before going to the 6 mg/kg level I hadn't noticed any significant improvement. I was started with Arava, then added Methotrexate when the Arava alone didn't work. I took myself off Arava and when the Methotrexte alone didn't work I was started on Remicade along with the Methotrexate. I'm now off Prednisone except for flares or when prescribed for some other reason. I've never taken any pain medicines but I have been as high as 40 mg Prednisone daily to be able to function. I've never had any side effects that I can identify from any of my medications. Good luck and God bless.

----- Original Message -----

From: Rhonda McCardell

Rheumatoid Arthritis

Sent: Tuesday, December 30, 2003 10:02 PM

Subject: remicade

gonna start remicade next week, feeling pretty scared about it. I have been on Mex,prenisone and salazine sp?. It hasnt done much for me. I feel miserable and depressed. I would like to hear from you guys about some of the possible side effects. I would also like to know what I should ask my reumy for in terms of pain meds. Im not getting any relief.Rhonda

[Guest guest]

Hi Rhonda, I hope the Remicade helps you, I will keep you in my

prayers, Tawny

> Hi group,

>

> I had my first Remicade treatment today. I sure hope this works.

The

> whole experience was quite interesting. They put me this room with

> six other people who were also being infused. We all I sat in huge

> lounging chairs, there were hooks on the wall where they hung the

> medicine that they were giving us. I was the new kid on the block,

so

> I had to tell my story.

>

> It took about two hours. I brought books which I never got to read

> because I being interview my by fellow remy patients. It all went

> without a hitch. The other topic of discussion was Janet s

> boob.

>

> Im not sure what to expect. I really just want some relief. I do

feel

> a little restless and I have a sore throat. Im interested in what

> anybody can tell me about there experience with Remicade.

>

> Rhonda

[Guest guest]

My RD started me at 3 mg/kg for about three infusions, then 5 mg/kg for about another three, and then 6 mg/kg since then. I didn't have much effect till the dose was raised to 6 mg/kg and now I'm off Prednisone except for special needs. Be patient, but also push for a higher dose if you don't get relief. Good luck and God bless.

----- Original Message -----

From: Rhonda

Rheumatoid Arthritis

Sent: Friday, February 06, 2004 6:05 PM

Subject: remicade

Hi group, I had my first Remicade treatment today. I sure hope this works. The whole experience was quite interesting. They put me this room with six other people who were also being infused. We all I sat in huge lounging chairs, there were hooks on the wall where they hung the medicine that they were giving us. I was the new kid on the block, so I had to tell my story. It took about two hours. I brought books which I never got to read because I being interview my by fellow remy patients. It all went without a hitch. The other topic of discussion was Janet s boob.Im not sure what to expect. I really just want some relief. I do feel a little restless and I have a sore throat. Im interested in what anybody can tell me about there experience with Remicade.Rhonda

[Guest guest]

Hi Rhonda, I'm glad your Remicade treatment went well. Like Grandpavan said, Remicade works differently on everyone. I started at 300 mg every 8 weeks and after about a year I went to 400 mg every 6 weeks, which I've been on for 2 years. That's good that you got to talk with some other arthritis patients. I get my treatment at the local hospital so I usually don't see other Remicade patients. (at least count I'm one of only 4 Remicade patients the hospital has). Like someone else noted, Remicade suppresses your immune system so you want to talk with your rheumy about the sore throat before taking anything.

Take care,

Steph in VA

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ >

>

>

>

>

>

>

>

[Guest guest]

It was PERFECT for me.

After 9 infusions the doctors decided to stop the treatment and in 3

months I was back to severe arthritis falres.

When eventually they gave me a new treatment (after 1 year), I had a

severe allergic reaction and now I cannot get remicade anymore

because of life risks.

Now I am on Humira and it works: not so well as Remicade, but it

works. And it is easier to get.

Good luck

Cecilia

[Guest guest]

Hi ,

That sounds like me but I think it is just menopause with me, but maybe

not. It has been going on now for about 2 years.

I am trying to type this with a very active 8 week old kitten crawling all

over the keyboard.

Cheers,

ette

At 13:05 17/02/04, you wrote:

>Hi all,

>

>Just started Remicade two weeks ago. I have noticed that I have

>become increasingly agitated lately. I also wake up in the middle of

>the night soaking wet from sweat. Anybody else have that experience?

>

>Rhonda

>

>

>

>

>

>

[Guest guest]

I have been on 400 mg Remicade, 0.8 ml Methotrexate, 20 mg Prednisone for about a year and a half. I am only 26 years old was diagnosed at 21 but was told because f the symptoms I had as a child and tests showing borderline, they think I have had it since I was 6. Too young for menopause but let me tell you, am really starting to wonder. Have hot and cold flashes, soak my clothes at night at least twice a night. Just really frustrated. Night sweats suck.... Anybody else experiencing these symptoms. Just curious? E mail me at Smokerscat94@.... Would love to talk to some people with the same problems.

thank you