RE: Re: From Humira to Enbrel--no relief

[Guest guest]

In the US there are laws on people with disability that may give

you some rights for accommodations from your employer. I don’t know

what these are but I do know they exist. If you work for a large enough

company they may have a human resources group that could advise you without

informing your management. Otherwise you might contact your local public

health to see if they can direct you to some help. I’ve been on

Remicade and Methotrexate for about 7 years and doing quite well on that

combination. I believe that a biologic like Enbrel, Humira, Remicade, or

Orencia work better when paired with a DMARD (Disease-Modifying Anti-Rheumatic

Drug) like Methotrexate because that reduces the likelihood that your body will

reject the medication.

You might also look into Rituxin because I think that is a

couple of all-day infusions given every 6 months to a year. I’m not

that familiar with this medication but I gather it seems to work well for some

people. I hope you get effective treatment. God bless.

From:

Rheumatoid Arthritis

[mailto:Rheumatoid Arthritis ] On Behalf Of Jane

McElhiney

Sent: Friday, February 13, 2009 9:17 AM

Rheumatoid Arthritis

Subject: Re: From Humira to Enbrel--no relief

Hi all,

I was on Humera for about 2.5 years and it gradually stopped working.

My new rheumy (ins changed) suggested trying Enbrel because the next

step was Orencia and I didn't want to take time from work. The Enbrel

didn't work so I started on Orencia and have found great relief from it.

Now however, due to a " restructuring " at my employer's, I have been

laid off and I don't know how to explain that I need and afternoon off

once a month for medical reasons.

I don't know which is worse being unemployed or RA, no, don't answer

that because right now I am whining. (In the US)

Thanks for listening and the Orencia is great. I intend to find out

if I can get it anyplace else because now the whole procedure only

takes 2 hours vs 4 in the beginning.

Jane.

> >

> > How long they work is also another problem. When I first went on

> > Enbrel it lasted a full week, but not anymore. I tried Humira and

> > that made the whole situation even worse so I went back to Enbrel.

>

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[Guest guest]

Thanks for sharing.

From: Jane McElhiney <babajane50@...>Subject: Re: From Humira to Enbrel--no reliefRheumatoid Arthritis Date: Friday, February 13, 2009, 12:17 PM

Hi all,I was on Humera for about 2.5 years and it gradually stopped working.My new rheumy (ins changed) suggested trying Enbrel because the nextstep was Orencia and I didn't want to take time from work. The Enbreldidn't work so I started on Orencia and have found great relief from it. Now however, due to a "restructuring" at my employer's, I have beenlaid off and I don't know how to explain that I need and afternoon offonce a month for medical reasons.I don't know which is worse being unemployed or RA, no, don't answerthat because right now I am whining. (In the US)Thanks for listening and the Orencia is great. I intend to find outif I can get it anyplace else because now the whole procedure onlytakes 2 hours vs 4 in the beginning.Jane.> >> > How long they work is also another problem. When I first went on> > Enbrel it lasted a full week, but not anymore. I tried Humira and> > that made the whole situation even worse so I went back to Enbrel.>

[Guest guest]

humira worked only a few months for me. Just had my second dose of Rituximab 8 hour infusion, it is shit stuff but works but not as good as i was told. my immune system is fighting back now my doc wants me to go back on methotrexate again with rituximab every 9 mths! The thing is these new drugs are not long lasting and seem to make the desease process only worse. THe methotrexate makes me another person feel shit . took the shit for 4 yrs took myself off. so now i'm confused and not really happy with taking doctors direction as hve told him i didn't tolerate first time and will not take antidepressants. body fucked not going to let them take my mind. feel i'm at a dead end been there done that! doc said last treatment $12,000 so should follow his advice! wat ya think?

Rheumatoid Arthritis From: angie_phea@...Date: Wed, 22 Apr 2009 04:07:29 -0700Subject: Re: Re: From Humira to Enbrel--no relief

Thanks for sharing.

From: Jane McElhiney <babajane50 >Subject: Re: From Humira to Enbrel--no reliefRheumatoid Arthritis Date: Friday, February 13, 2009, 12:17 PM

Hi all,I was on Humera for about 2.5 years and it gradually stopped working.My new rheumy (ins changed) suggested trying Enbrel because the nextstep was Orencia and I didn't want to take time from work. The Enbreldidn't work so I started on Orencia and have found great relief from it. Now however, due to a "restructuring" at my employer's, I have beenlaid off and I don't know how to explain that I need and afternoon offonce a month for medical reasons.I don't know which is worse being unemployed or RA, no, don't answerthat because right now I am whining. (In the US)Thanks for listening and the Orencia is great. I intend to find outif I can get it anyplace else because now the whole procedure onlytakes 2 hours vs 4 in the beginning.Jane.> >> > How long they work is also another problem. When I first went on> > Enbrel it lasted a full week, but not anymore. I tried Humira and> > that made the whole situation even worse so I went back to Enbrel.>

hi humira

Download the new Windows Live Looking for a place to manage all your online stuff?

[Guest guest]

Is there anything that will stop the pain and the stiffness. When I wake up in the mornings I can hardly make it out of bed. Some time I start to feel sorry for myself and then I think that I am bless because there are some one in worst shape than I am but the sorrow comes back and I start all over again. I am Praying for each of you along with myself.

From: Jane McElhiney <babajane50 (DOT) com>Subject: [rheumatoid_ arthritis] Re: From Humira to Enbrel--no reliefrheumatoid_arthriti sgroups (DOT) comDate: Friday, February 13, 2009, 12:17 PM

Hi all,I was on Humera for about 2.5 years and it gradually stopped working.My new rheumy (ins changed) suggested trying Enbrel because the nextstep was Orencia and I didn't want to take time from work. The Enbreldidn't work so I started on Orencia and have found great relief from it. Now however, due to a "restructuring" at my employer's, I have beenlaid off and I don't know how to explain that I need and afternoon offonce a month for medical reasons.I don't know which is worse being unemployed or RA, no, don't answerthat because right now I am whining. (In the US)Thanks for listening and the Orencia is great. I intend to find outif I can get it anyplace else because now the whole procedure onlytakes 2 hours vs 4 in the beginning.Jane.> >> > How long they work is also another problem. When I first went on> > Enbrel it lasted a full week, but not anymore. I tried Humira and> > that made the whole situation even worse so I went back to Enbrel.>

hi humira

Download the new Windows Live Looking for a place to manage all your online stuff?

[Guest guest]

I am on methotrexate now and it makes me sick and lately I had more pain and stiffness. I hurt some days 24 hrs and I hate taking pain meds. I have to go back to the Dr. on the 15th he's got to give me some thing else.

From: Jane McElhiney <babajane50 (DOT) com>Subject: [rheumatoid_ arthritis] Re: From Humira to Enbrel--no reliefrheumatoid_arthriti sgroups (DOT) comDate: Friday, February 13, 2009, 12:17 PM

Hi all,I was on Humera for about 2.5 years and it gradually stopped working.My new rheumy (ins changed) suggested trying Enbrel because the nextstep was Orencia and I didn't want to take time from work. The Enbreldidn't work so I started on Orencia and have found great relief from it. Now however, due to a "restructuring" at my employer's, I have beenlaid off and I don't know how to explain that I need and afternoon offonce a month for medical reasons.I don't know which is worse being unemployed or RA, no, don't answerthat because right now I am whining. (In the US)Thanks for listening and the Orencia is great. I intend to find outif I can get it anyplace else because now the whole procedure onlytakes 2 hours vs 4 in the beginning.Jane.> >> > How long they work is also another problem. When I first went on> > Enbrel it lasted a full week, but not anymore. I tried Humira and> > that made the whole situation even worse so I went back to Enbrel.>

hi humira

Download the new Windows Live Looking for a place to manage all your online stuff?

[Guest guest]

are you joking the last treatment cost what?

From: Jane McElhiney <babajane50 (DOT) com>Subject: [rheumatoid_ arthritis] Re: From Humira to Enbrel--no reliefrheumatoid_arthriti sgroups (DOT) comDate: Friday, February 13, 2009, 12:17 PM

Hi all,I was on Humera for about 2.5 years and it gradually stopped working.My new rheumy (ins changed) suggested trying Enbrel because the nextstep was Orencia and I didn't want to take time from work. The Enbreldidn't work so I started on Orencia and have found great relief from it. Now however, due to a "restructuring" at my employer's, I have beenlaid off and I don't know how to explain that I need and afternoon offonce a month for medical reasons.I don't know which is worse being unemployed or RA, no, don't answerthat because right now I am whining. (In the US)Thanks for listening and the Orencia is great. I intend to find outif I can get it anyplace else because now the whole procedure onlytakes 2 hours vs 4 in the beginning.Jane.> >> > How long they work is also another problem. When I first went on> > Enbrel it lasted a full week, but not anymore. I tried Humira and> > that made the whole situation even worse so I went back to Enbrel.>

hi humira

Download the new Windows Live Looking for a place to manage all your online stuff?

[Guest guest]

Please remember that RA is a parasitic disease.  It is smart like any parasite (bacteria, virus, bug) and will often find a way to outsmart your meds.  There are a few things that are important to know.  Methotrexate is a chemotherapy drug and its single job is to stop cells from dividing, in essence stopping their growth.  Since the disease process in RA causes white blood cells to divide too quickly and then attack the joints, MTX slows them down, confuses them and hampers their division.  That is why MTX is a companion drug to any biologic, to help the biologic work.  Enbrel and Humira are TNF blocking biologics.  You are now on a B-cell blocker which is the newest biologic.  There will be a new one blocking IL-6 Proteins which shows great promise.  I myself have been on Remicade since 2000.  I receive an infusion every 8 weeks or so.  This is in conjunction with MTX.  My disease has changed over 15 years but I am as aggressive with it as it is with me.  Every step it takes, I am one step ahead.  I follow my doctors RX to the letter and I have not had to change any of my meds since I started on Remicade.  I think its important to mention that while your inflammation may be in check and your joints not as sore, fatigue, fibromyalgia and a host of secondary processes brought on by the medications or the disease over time should be considered.  My Rheumatologist sits me down and explains things to me as a collegue because I have done extensive biological research in medical journals to better understand how my disease works and how the medications work.  It takes alot of the fear of the unknown out of the equation.  RA is much more progressive in Men because of a lack of estrogen.  Be sure to talk to your RD about a bone builder and be sure to get a bone scan right away if you havent already. Deborah

                                                                                                     On Thu, Apr 23, 2009 at 8:12 AM, roger pitcher <smartdog_8@...> wrote:

humira worked only a few months for me. Just had my second dose of Rituximab 8 hour infusion, it is shit stuff but works but not as good as i was told. my immune system is fighting back now my doc wants me to go back on methotrexate again with rituximab every 9 mths! The thing is these new drugs are not long lasting and seem to make the desease process only worse. THe methotrexate makes me another person feel shit . took the shit for 4 yrs took myself off. so now i'm confused and not really happy with taking doctors direction as hve told him i didn't tolerate first time and will not take antidepressants. body fucked not going to let them take my mind. feel i'm at a dead end been there done that! doc said last treatment $12,000 so should follow his advice! wat ya think?

 

Rheumatoid Arthritis From: angie_phea@...Date: Wed, 22 Apr 2009 04:07:29 -0700

Subject: Re: Re: From Humira to Enbrel--no relief

Thanks for sharing.

From: Jane McElhiney <babajane50@...>Subject: Re: From Humira to Enbrel--no relief

Rheumatoid Arthritis Date: Friday, February 13, 2009, 12:17 PM

Hi all,I was on Humera for about 2.5 years and it gradually stopped working.My new rheumy (ins changed) suggested trying Enbrel because the nextstep was Orencia and I didn't want to take time from work. The Enbrel

didn't work so I started on Orencia and have found great relief from it. Now however, due to a " restructuring " at my employer's, I have beenlaid off and I don't know how to explain that I need and afternoon off

once a month for medical reasons.I don't know which is worse being unemployed or RA, no, don't answerthat because right now I am whining. (In the US)Thanks for listening and the Orencia is great. I intend to find out

if I can get it anyplace else because now the whole procedure onlytakes 2 hours vs 4 in the beginning.Jane.

> >> > How long they work is also another problem. When I first went on> > Enbrel it lasted a full week, but not anymore. I tried Humira and> > that made the whole situation even worse so I went back to Enbrel.

>

hi humira

Download the new Windows Live Looking for a place to manage all your online stuff?

[Guest guest]

I have no problem with oral Methotrexate but I have heard from

many others who say that by switching to injections of Methotrexate they have

much reduced digestive tract problems. Please ask your doctor about this. God

bless.

From: Rheumatoid Arthritis

[mailto:Rheumatoid Arthritis ] On Behalf Of Etta Sterrett

Sent: Thursday, April 23, 2009 6:38 PM

Rheumatoid Arthritis

Subject: RE: Re: From Humira to Enbrel--no relief

I am on methotrexate now and it makes me sick and

lately I had more pain and stiffness. I hurt some days 24 hrs and I hate

taking pain meds. I have to go back to the Dr. on the 15th he's got to give

me some thing else.

[Guest guest]

while my diagnoisis is not confirmed, at this point I know my vit.D level was low at 12, my rh factor was high at 255, and ced rate and ana was positive. Fighting fm since 89 I know this pain is different, in knees and tight hand and wrists hurt, strength low in hands. My feet were hurting and ankles were swollen and couldn't move faster than a 100 yr. old but that has subsided. Took a predisone pack a few weeks back and that changed it and now have been taking an anti inflammatory for a few weeks. I move but my knees make me waddle and am tired mostly from not doing anything and trying. Trying to keep in good spirits but crying daily as I hit road blocks and discover things I can't do right now.

RA doc took more bloodwork and xrays and will see me May 1. Was stumped as I didn't have symetrical pains but just said difinitely something underlying here. So we will see next week. I am worried about the meds, side effects horrible especially if you take things for a long period. Hair loss, stomach problems things to make you feel sick besides the pain, reading can be scary, everyone seems more negative than hopeful to have a change with the meds. Ane the costs of these things. Does anyone walk normal and do anything they use to? As I read no one seems satisfied at all, now I am use to limits with the fm but also use to up swings as well, take them when you can but this is really scaring me.

Any good news out there? I really would like to be prepared when I see the dr. about the meds and which ones are a good one to start or what questions to ask. Any knowledge accepted with gratitude.

Thanks,

From: Jane McElhiney <babajane50 (DOT) com>Subject: [rheumatoid_ arthritis] Re: From Humira to Enbrel--no reliefrheumatoid_arthriti sgroups (DOT) comDate: Friday, February 13, 2009, 12:17 PM

Hi all,I was on Humera for about 2.5 years and it gradually stopped working.My new rheumy (ins changed) suggested trying Enbrel because the nextstep was Orencia and I didn't want to take time from work. The Enbreldidn't work so I started on Orencia and have found great relief from it. Now however, due to a "restructuring" at my employer's, I have beenlaid off and I don't know how to explain that I need and afternoon offonce a month for medical reasons.I don't know which is worse being unemployed or RA, no, don't answerthat because right now I am whining. (In the US)Thanks for listening and the Orencia is great. I intend to find outif I can get it anyplace else because now the whole procedure onlytakes 2 hours vs 4 in the beginning.Jane.> >> > How long they work is also another problem. When I first went on> > Enbrel it lasted a full week, but not anymore. I tried Humira and> > that made the whole situation even worse so I went back to Enbrel.>

hi humira

Download the new Windows Live Looking for a place to manage all your online stuff?

[Guest guest]

LEUCOVORIN.  Ask your Doctor about taking it.  It works very well indeed.  DeborahOn Fri, Apr 24, 2009 at 2:51 AM, Harold Van Tuyl <hvantuyl@...> wrote:

I have no problem with oral Methotrexate but I have heard from

many others who say that by switching to injections of Methotrexate they have

much reduced digestive tract problems.  Please ask your doctor about this.  God

bless.

 

 

From: Rheumatoid Arthritis

[mailto:Rheumatoid Arthritis ] On Behalf Of Etta Sterrett

Sent: Thursday, April 23, 2009 6:38 PM

Rheumatoid Arthritis

Subject: RE: Re: From Humira to Enbrel--no relief

I am on methotrexate now and it makes me sick and

lately I had more pain and stiffness. I hurt some days 24 hrs and I hate

taking pain meds. I have to go back to the Dr. on the 15th he's got to give

me some thing else.

 

[Guest guest]

I think most people get their RA pretty well controlled so they

either never come to a message board or come for a while and then leave.

The ones who post are most likely to be those who have problems. I post

fairly often in response to others but I usually don’t bother to say that

I’m doing quite well. I’m not sure I’m slowed down at

all by RA because at my age (81) I’m slowed down by that.

The immune system is a tremendously complex system and anything

that affects one part of the immune system can cause effects in other parts of

the system as well. If we take a medication to block one part of the

immune system that is causing us problems our bodies try to find ways to

restore that part of the immune system so that whatever we take to block it

becomes less effective with time. I take Remicade to block part of the

immune system called TNF and I also take Methotrexate to block the attacks on

the Remicade. At least that’s what I understand the medications are

for, and they have worked well for me for over 7 years. It is not unusual

for our bodies to find a work-around to thwart anything that upsets the immune

system. Unfortunately with an autoimmune disease the body does not

recognize that the immune system itself is causing the problem. The

immune system thinks it is functioning quite well when it attacks our joints so

it does not try to find a work-around.

Treatments can have adverse side effects and they vary from one

treatment to the next. The side effects for the most part are quite minor

or are unlikely and are reversible when the treatment is stopped. Untreated

RA on the other hand is quite likely to lead to permanent joint damage, pain,

and a wheelchair with no chance of reversal. Most of us prefer the unlikely

and reversible effects rather than the likely and permanent effects. I

hope you get effective treatment. God bless.

From:

Rheumatoid Arthritis

[mailto:Rheumatoid Arthritis ] On Behalf Of

ish

Sent: Friday, April 24, 2009 6:33 AM

Rheumatoid Arthritis

Subject: Re: Re: From Humira to Enbrel--no relief

while my diagnoisis is not confirmed, at this point I know

my vit.D level was low at 12, my rh factor was high at 255, and ced rate and

ana was positive. Fighting fm since 89 I know this pain is different,

in knees and tight hand and wrists hurt, strength low in hands. My

feet were hurting and ankles were swollen and couldn't move faster than

a 100 yr. old but that has subsided. Took a predisone pack a few weeks

back and that changed it and now have been taking an anti inflammatory for a

few weeks. I move but my knees make me waddle and am tired mostly from

not doing anything and trying. Trying to keep in good spirits but

crying daily as I hit road blocks and discover things I can't do right now.

RA doc took more bloodwork and xrays and will see me May

1. Was stumped as I didn't have symetrical pains but just said difinitely

something underlying here. So we will see next week. I am worried

about the meds, side effects horrible especially if you take things for a

long period. Hair loss, stomach problems things to make you feel sick

besides the pain, reading can be scary, everyone seems more negative than

hopeful to have a change with the meds. Ane the costs of these

things. Does anyone walk normal and do anything they use to? As I

read no one seems satisfied at all, now I am use to limits with the fm but

also use to up swings as well, take them when you can but this is really

scaring me.

Any good news out there? I really would like to be

prepared when I see the dr. about the meds and which ones are a good one to

start or what questions to ask. Any knowledge accepted with gratitude.

Thanks,