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Re: Re: Flare out of Nowhere

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Hi

Went to my RA appt today and looks like there is a Humira study that

I'll be trying out. It's a study where the first dose is placebo, but

the rest are Humira. It's a 3 month study, they call it a marketing

study put out by the makers of Humira. First 3 months all costs are

paid, even the medication...then after that IF the drug works, they try

to get you funding to stay on the drug. My insurance will cover it so I

won't need that part. You also get a palm pilot to keep a diary with and

you turn that in every so often. Best part is, I'll get 3 months of

being closely watched on the drug, I'll save 3 months prescriptions, and

they give me shots for the first 3 times while teaching my husband and I

how to do it. Oh well, we'll see what happens!

Wouldn't you know it, the day I go for my appt, I don't have any aches.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Maggie

http://www.4HockeyFans.com

http://www.4FloridaHockey.com

MSN: Maggies1429

AOL: Maggies85

wrote:

>Maggie,

>

>I definitely recommend Humira. It does take a few weeks to kick in though, but

>its been the best drug for me so far. My Rheummy went for the big guns right

>away, and I started on Enbrel. Humira just works better for me, but everyone

>is different. I am due to take my shot in 2 days, so that along with this

>horrendous humidity may have something to do with this flare.

>

>

>

>

>

>

>

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Hi Maggie -

Good luck with the Humira - I've been feeling really good lately on it! Not sure if it is the meds or the sunnier climate here in Oregon - but whatever it is - I'm feeling more normal and a lot less pain!

The study you talk about below doesn't sound right to me having worked for an insurance company and with pharmacists who reviewed those type of studies etc. Usually you don't know if it is placebo or the real meds, that is how they determine if it really works or not. I hope you are right, otherwise, you may not get the real medicinal benefit of Humira, if in fact you are just receiving placebo for 3 months and don't know it. I'd definitely stick it out and ask a few more questions as it really does work for me and it appears a few others on here as well.

I have noticed that the folks who are on Humira on here, I think are all working, including myself, I'm holding down a full-time job, got diagnosed 3 yrs ago, and am 45 now. I doubt very much I'd be still working if I hadn't been put on the better drugs within the first year or so. I could barely start my car, get dressed, and at one point, I wasn't sure if I could even get out of the bathtub, and I live alone. I couldn't push up with my sore wrists, or my sore feet - it was awful - I am no where near that bad anymore - but I still have bad flare-ups - but only really bad ones about twice a year. I definitely still have physical limitations though, as my right wrist doesn't allow me to lift very much or twist it - but I've learned to live with my limitations - you just have to know when to rest and not overdo it - which is really hard sometimes - I used to be very athletic and active - so even though I don't golf or play tennis anymore because

of my wrists, I walk 3 times a week about 3 miles, and I'm hoping to start swimming again here soon in hopes that will build my strength and energy, without aggravating my inflammation.

Good luck - keep me posted!

Maggie <meshouse@...> wrote:

Hi Went to my RA appt today and looks like there is a Humira study that I'll be trying out. It's a study where the first dose is placebo, but the rest are Humira. It's a 3 month study, they call it a marketing study put out by the makers of Humira. First 3 months all costs are paid, even the medication...then after that IF the drug works, they try to get you funding to stay on the drug. My insurance will cover it so I won't need that part. You also get a palm pilot to keep a diary with and you turn that in every so often. Best part is, I'll get 3 months of being closely watched on the drug, I'll save 3 months prescriptions, and they give me shots for the first 3 times while teaching my husband and I how to do it. Oh well, we'll see what happens!Wouldn't you know it, the day I go for my appt, I don't have any

aches.~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~Maggiehttp://www.4HockeyFans.comhttp://www.4FloridaHockey.comMSN: Maggies1429AOL: Maggies85 wrote:>Maggie,>>I definitely recommend Humira. It does take a few weeks to kick in though, but >its been the best drug for me so far. My Rheummy went for the big guns right >away, and I started on Enbrel. Humira just works better for me, but everyone >is different. I am due to take my shot in 2 days, so that along with this >horrendous humidity may have something to do with this flare.>>>> >> >

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Hi!

I'm glad to hear that Humira is working well for you. I'm 45 too and

main problems are in the right hand and wrist...same things you describe.

When I went to the doctors today I told him I wanted to be on Humira as

I don't want to waste time doing the other study that takes a year and a

half and may end up with placebo anyway for that time. he said there is

a Humira study called HERO (Humira Efficacy Response Optimization). It's

for Humira to do for marketing. he and the study nurse talked to me and

said that the first screening visit we get placed in 1 of 2 study groups

for the first 2 weeks of the study drug dosing. Randomly you get

selected where the first dose could be placebo or humira. Starting

study visit 2 all subjects get humira up to week 10. I had to read the

paperwork to make sure that we/I get humira right away...or it was a no

go for me.

You sound like you're doing great on it! I hope I get as good of

results that you do.

Did you have burning when you get the injection? I mentiond that I had

read where people said it burns them. The nurse said to keep the

medication at room temp for an hour before your injection or you can ice

the injection site before and after.

Yep, I'm nervous :o

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Maggie

http://www.4HockeyFans.com

http://www.4FloridaHockey.com

MSN: Maggies1429

AOL: Maggies85

sunshine wrote:

> Hi Maggie -

>

> Good luck with the Humira - I've been feeling really good lately on

> it! Not sure if it is the meds or the sunnier climate here in Oregon

> - but whatever it is - I'm feeling more normal and a lot less pain!

>

> The study you talk about below doesn't sound right to me having worked

> for an insurance company and with pharmacists who reviewed those type

> of studies etc. Usually you don't know if it is placebo or the real

> meds, that is how they determine if it really works or not. I hope

> you are right, otherwise, you may not get the real medicinal benefit

> of Humira, if in fact you are just receiving placebo for 3 months and

> don't know it. I'd definitely stick it out and ask a few more

> questions as it really does work for me and it appears a few others on

> here as well.

>

> I have noticed that the folks who are on Humira on here, I think are

> all working, including myself, I'm holding down a full-time job, got

> diagnosed 3 yrs ago, and am 45 now. I doubt very much I'd be still

> working if I hadn't been put on the better drugs within the first year

> or so. I could barely start my car, get dressed, and at one point, I

> wasn't sure if I could even get out of the bathtub, and I live alone.

> I couldn't push up with my sore wrists, or my sore feet - it was awful

> - I am no where near that bad anymore - but I still have bad flare-ups

> - but only really bad ones about twice a year. I definitely still

> have physical limitations though, as my right wrist doesn't allow me

> to lift very much or twist it - but I've learned to live with my

> limitations - you just have to know when to rest and not overdo it -

> which is really hard sometimes - I used to be very athletic and active

> - so even though I don't golf or play tennis anymore because of my

> wrists, I walk 3 times a week about 3 miles, and I'm hoping to

> start swimming again here soon in hopes that will build my strength

> and energy, without aggravating my inflammation.

>

> Good luck - keep me posted!

>

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Hi! By the way, my name is Margi. Did your mother name you Margaret too? lol

Don't worry about the injection. A lot of men have told me they could never inject themselves, pretty funny, but sometimes you have to do what it takes to be healthy. I don't find it troublesome at all! It does sting if you inject too fast, so I slowly push the plunger in after I have put the needle in - yikes! I know it sounds like it hurts, but you pinch the skin on your thigh, that is where I give myself the shots, and it just goes in your skin layer, you have to make sure you don't get a blood vessel - but I've never got one - they give you very good directions and I suggest maybe doing it in a nurse's presence the first time if you are apprehensive.

So just think about all it takes is a couple of minutes and you are done! And hopefully you will have the relief I have had! It is well worth it the shots! Believe me, after awhile, it is just second nature, and you'll feel like a nurse, and want to give others a shot! :)

Good luck - let me know how it works for you!

Maggie <meshouse@...> wrote:

Hi!I'm glad to hear that Humira is working well for you. I'm 45 too and main problems are in the right hand and wrist...same things you describe. When I went to the doctors today I told him I wanted to be on Humira as I don't want to waste time doing the other study that takes a year and a half and may end up with placebo anyway for that time. he said there is a Humira study called HERO (Humira Efficacy Response Optimization). It's for Humira to do for marketing. he and the study nurse talked to me and said that the first screening visit we get placed in 1 of 2 study groups for the first 2 weeks of the study drug dosing. Randomly you get selected where the first dose could be placebo or humira. Starting study visit 2 all subjects get humira up to week 10. I had to read the paperwork to make sure

that we/I get humira right away...or it was a no go for me.You sound like you're doing great on it! I hope I get as good of results that you do.Did you have burning when you get the injection? I mentiond that I had read where people said it burns them. The nurse said to keep the medication at room temp for an hour before your injection or you can ice the injection site before and after.Yep, I'm nervous :o~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~Maggiehttp://www.4HockeyFans.comhttp://www.4FloridaHockey.comMSN: Maggies1429AOL: Maggies85sunshine wrote:> Hi Maggie -> > Good luck with the Humira - I've been feeling really good lately on > it! Not sure if it is the meds or the sunnier climate here in Oregon > - but whatever it is - I'm

feeling more normal and a lot less pain! > > The study you talk about below doesn't sound right to me having worked > for an insurance company and with pharmacists who reviewed those type > of studies etc. Usually you don't know if it is placebo or the real > meds, that is how they determine if it really works or not. I hope > you are right, otherwise, you may not get the real medicinal benefit > of Humira, if in fact you are just receiving placebo for 3 months and > don't know it. I'd definitely stick it out and ask a few more > questions as it really does work for me and it appears a few others on > here as well.> > I have noticed that the folks who are on Humira on here, I think are > all working, including myself, I'm holding down a full-time job, got > diagnosed 3 yrs ago, and am 45 now. I doubt very much I'd be still >

working if I hadn't been put on the better drugs within the first year > or so. I could barely start my car, get dressed, and at one point, I > wasn't sure if I could even get out of the bathtub, and I live alone. > I couldn't push up with my sore wrists, or my sore feet - it was awful > - I am no where near that bad anymore - but I still have bad flare-ups > - but only really bad ones about twice a year. I definitely still > have physical limitations though, as my right wrist doesn't allow me > to lift very much or twist it - but I've learned to live with my > limitations - you just have to know when to rest and not overdo it - > which is really hard sometimes - I used to be very athletic and active > - so even though I don't golf or play tennis anymore because of my > wrists, I walk 3 times a week about 3 miles, and I'm hoping to > start swimming again here soon in hopes that will

build my strength > and energy, without aggravating my inflammation. > > Good luck - keep me posted! >

Start your day with - make it your home page

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On another board I follow there is someone who went throught the same Humira study and as I recall had good success. I hope you also have success. God bless.

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

From: Maggie

Rheumatoid Arthritis

Sent: Tuesday, July 19, 2005 6:22 PM

Subject: Re: Re: Flare out of Nowhere

Hi Went to my RA appt today and looks like there is a Humira study that I'll be trying out. It's a study where the first dose is placebo, but the rest are Humira. It's a 3 month study, they call it a marketing study put out by the makers of Humira. First 3 months all costs are paid, even the medication...then after that IF the drug works, they try to get you funding to stay on the drug. My insurance will cover it so I won't need that part. You also get a palm pilot to keep a diary with and you turn that in every so often. Best part is, I'll get 3 months of being closely watched on the drug, I'll save 3 months prescriptions, and they give me shots for the first 3 times while teaching my husband and I how to do it. Oh well, we'll see what happens!Wouldn't you know it, the day I go for my appt, I don't have any aches.~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~Maggiehttp://www.4HockeyFans.comhttp://www.4FloridaHockey.comMSN: Maggies1429AOL: Maggies85 wrote:>Maggie,>>I definitely recommend Humira. It does take a few weeks to kick in though, but >its been the best drug for me so far. My Rheummy went for the big guns right >away, and I started on Enbrel. Humira just works better for me, but everyone >is different. I am due to take my shot in 2 days, so that along with this >horrendous humidity may have something to do with this flare.>>>> >> >

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hehe, yes I'm a Margaret too...have been called Margie, Margee, and

Marge til I settled for Maggie.

Thanks for the helpful hints. It's good to know that we can come here

for some help. I thought all these years with RA I'd be used to needles

after all the steriod shots and blood tests...but this one is scary to

me. I think after a few I'll be ok with it.

Here is something I found on the web about the study:

http://www.centerwatch.com/patient/studies/stu69185.html

at the doctors office they have posters and pamplets on it. I guess if

anyone is interested they can contact their doctor instead of using the

site link.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Maggie

http://www.4HockeyFans.com

http://www.4FloridaHockey.com

MSN: Maggies1429

AOL: Maggies85

sunshine wrote:

> Hi! By the way, my name is Margi. Did your mother name you Margaret

> too? lol

>

> Don't worry about the injection. A lot of men have told me they could

> never inject themselves, pretty funny, but sometimes you have to do

> what it takes to be healthy. I don't find it troublesome at all! It

> does sting if you inject too fast, so I slowly push the plunger in

> after I have put the needle in - yikes! I know it sounds like it

> hurts, but you pinch the skin on your thigh, that is where I give

> myself the shots, and it just goes in your skin layer, you have to

> make sure you don't get a blood vessel - but I've never got one - they

> give you very good directions and I suggest maybe doing it in a

> nurse's presence the first time if you are apprehensive.

>

> So just think about all it takes is a couple of minutes and you are

> done! And hopefully you will have the relief I have had! It is well

> worth it the shots! Believe me, after awhile, it is just second

> nature, and you'll feel like a nurse, and want to give others a shot! :)

>

> Good luck - let me know how it works for you!

>

>

>

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