RE: Re: Question about clinical studies

[Guest guest]

If the shots are similar to the ones we use for Enbrel, they really are a breeze

once you get over the anxiety of having to give yourself one.  Just ice first,

use the abdomen (has less muscle so hurts less) and inject slowly!   The needle

is about the size of those used by diabetics every day.  Good luck and keep us

posted . . . . . .

At least you'll get your drugs for free and that's a blessing.

 Joanna Hoelscher

[Guest guest]

Naproxen is nothing more than a non-steroidal anti-inflammatory drug (NSAID). 

It does nothing to " treat " PA or any other form of arthritis.  A TNF blocker is

one form of a disease modifying anti-rheumatic drug (DMARD) - all of the DMARDs

attempt to treat the disease by suppressing the immune system but all attack the

problem in slightly different ways.  You're right in that TNF blockers tend to

be much more expensive than the DMARDs that have been in use for a much longer

time but there are likely none that " completely treat " PA.  They are

disease modifiers.  Further, what works for one may not work for another.  Some

doctors - including mine - prefer the TNF blockers because they believe they

offer a greater chance of relief/remission than do some of the older drugs. 

They also have the  potential to work more quickly.  's doctor may want

her on one because of the severity of her disease. 

 Joanna Hoelscher

[Guest guest]

Unfortunately, in double-blind studies, you can never be told whether you're

getting the drug or the placebo.  That's why they're called " double-blind " -

neither those who receive the drug or those who receive the placebo know.  If

they did, it would distort the study results and make them invalid.

The entire purpose of a double-blind study is to judge people's reactions and

see if those on the drug get greater relief than those on the placebo because -

interestingly enough - even the people who receive the placebo report " feeling

better " .  So they have to be able see " statistically significant " higher

reports of relief in the group that actually gets the drug.   

 Joanna Hoelscher

[Guest guest]

If you have interstitial pulmonary fibrosis you should not use MTX it will make

it worse. I know from experience.

Eva

[Guest guest]

--

Be careful with the Naproxen long-term. They had me on 600 mg. of Naproxen

3x a day for at least a year. It might even have been longer.

At first, it seemed to work. But after a year or so, the inflammation began

to return and I started swelling. They finally took me off of it because of

concern about liver damage and increased swelling.

Two years later, I'm having liver and spleen issues -- and I'm having a CT

scan this week to determine why my spleen is enlarged. It could be anything

from a severe infection to cancer/lymphoma.

Naproxen reduces the inflammation, but it doesn't stop the progression of

PA.

In my case, I thought the Naproxen was helping. But underneath, the PA kept

right on attacking my joints.

You might want to discuss options with your doctor. In my case, the

long-term Naproxen use probably hurt my body more than helped it.

Today, my inflammation rate is higher than it has ever been -- and I'm in

severe pain.

Good luck!

Patty

[Guest guest]

Well, I'm not a doctor and so I can't judge but I don't think there are many

(are there any?) who are just on NSAIDs to control their PA.  Time after time

I've read people say how the damage suddenly showed up or the severe pain came

out of nowhere.  It's like a stealth disease - it can do it's dirty work while

you don't even know it's happening.   

 Joanna Hoelscher

[Guest guest]

:  if the study doesn't work out, there is a program provided by the

mfg of Enbrel that gives you the drug for free the first six months and for a

$75 co-pay each of the next six.  No restrictions in terms of income or anything

else other than you can't be on Medicare or Medicaid.  Be sure to ask your

doctor about it if the study doesn't take you or you don't end up taking one of

the 2 drugs. 

Good luck and keep us posted.  Do remember, though, that everybody reacts

differently to Enbrel:  for me, the first result I had was a reduction in the

swelling in my legs and ankles that happened quite literally overnight. 

However, the pain relief came so gradually that you could hardly notice it on a

day to day basis.  Then suddenly one day (for me at about six weeks) I realized

I could actually walk a lot better, go up the stairs without pain and was

feeling almost normal again.

Others have had quicker pain relief; still others even more slowly than I. 

 Joanna Hoelscher

[Guest guest]

Cristina,

I gave the shot myself in the upper leg and never was sore. The one thing I

found out is that you have to eat something before the shot or you going to be

sick. I used to take mine right after breakfast and only for the first one I was

sick because I took it later at the doctors office and had hardly anything in my

stomach. BTW I no longer take the shot or any other arthritis meds.

Take care. Stay well.

Eva

[Guest guest]

:  I have never had a reaction of ANY kind after using Enbrel.  No

injection site soreness, nothing.  Did you ice first?  Don't know where you

injected, but I always do it about 2-3 inches on either side of the navel. 

Remember to switch sides each week and inject slowly.  Oh, and did you use an

injector pen or the regular syringe?   I use the syringe and have been told by

those who have used both that the injector pen is more painful. 

If you get the fever, chills, pain after your second shot, I would at least

report it to your doctor.  Also check out the complete info that's included with

the medication to see if those are reactions that can typically occur.  I don't

remember reading that.  Maybe you just had a touch of the flu or maybe it was

the result of anxiety over giving yourself the injection.  I know it took me two

hours to psych myself up the first time and when it was all over, I thought what

a wuss I'd been because it was nothing!

I can't believe that you were not allowed in the study on the off-chance that

you might be raped and get pregnant because you're not on birth control

pills!!!!!!!!  

I hope it works for you but - again - the relief may come slowly.  Give it

time. 

 Joanna Hoelscher

[Guest guest]

Hi Cristina --

I have taken Enbrel -- and I currently take the Humira shot. I use the

injectable pen.

I found with both that it was easier for me to take in the upper leg.

Usually the site of the injection might turn a bit red or swell for a day,

but that went away pretty quickly.

No other immediate side effects. I typically take mine later in the day, so

that might be the reason I didn't get feel as bad as you do. But after the

first couple of shots, you'll find you get used to the side effects.

There can be times when I feel a bit flu-like on the following day. But

that goes away fairly quickly if I rest and plan for it. I actually haven't

had those symptoms for quite a while. So it might be that your body is just

adjusting to the medication. After a few shots, you might only have some

minor reactions at the site of the injection. I just took my Humira shot

yesterday and I'm feeling fine right now. Just minor swelling at the

injection site. Very minor.

I think everyone's probably different in how they react to the shots. The

injectable pen directions say to squeeze the skin before injecting the

medication. To me, that's much more painful than just sticking it in. I

can't handle the injection in my stomach. So I take it in my leg. I'm sure

everyone is different. So you'll probably figure out what works best for

you over time.

By the way, my rheumatologist told me that it can take up to six months for

these shots to kick in. Most people don't see results during the first

30-60 days.

Good luck!

Patty

[Guest guest]

About the birth control scenario that is ludicrous. I go through this

whenever I am going to have some kind of surgery or what not...Q: " Are you on

birth control? " A: " Yes the foolproof kind. I don't have sex with men and have

not since 1976 " . They usually freak out by that one J but then they tell me I

have to take a pregnancy test anyway...

Do they also ask post menopausal women to go on BC?

Weird how women are pretty much assumed to be " at risk " even if we know we are

safe.

Glad they gave you the Enbrel. I have been on and off it since 2003.

Good luck!

Barb