Enbrel Question

[Guest guest]

I've been on Sulfasalasine for like three months and have not had a very good reaction to it. Actually my GI doctor thinks I'm allergic to it.. I've been throwing up every morning for the last month.. I'm scheduled for a medicine change and I really want to be switched to Enbrel (not so sure about giving myself a shot though) I know so many poly kids who have had such good results with it.. and my gosh you another one. I'm not sure if that would be the next med my doctor would put me on though, I have a feeling she'll want to go with the MTX... I know they try to go with the easier meds first then move onto the harder meds. Should I ask her about Enbrel..or see if she comes up with it on her own. I got something in the mail a few days ago from RA Acess about Enbrel and it seems amazing. Plus I'd rather have a medicine that I take every few days or once a week rather then taking 6-9 pills a day.. My kidneys are not doing so well with all the meds..

Poly JRA 18

[Guest guest]

Hi Robin,

Geez your story just sent chills all over me.I have a 4yr old systemic diagnosed 2 yrs ago this month.He was put on prednisilone then MTX and by December 01 put on the waiting list for Enbrel with the assumption he would get it within a couple of months.Boy,were they wrong!!!In the meantime my son was maxed out on Ibuprofin,maxed out on MTX they added Plaquenil and went ahead and maxed him out on that also.Knowing that the wait for Enbrel could be several months away and nothing but pred would calm his stubborn ankle he underwent two drains and injections.Even they didn't help when the pred dose got to low.August of last year I read about an Enbrel study(Through this list)in Cincinatti,we live in Tn.I talked directly to D.Lovell for about an hour.All medical records were faxed and our first appointment was in Sept.I came home on a Saturday went to the pharmacy and low and behold someone didn't pick up their Enbrel and I got to bring it home.I was on cloud 9 and Monday got his first shot.It took him 9 days to see a responce,he just jumped right out of bed and jumped and ran around like he should.From that moment on the steroid taper was a total breeze,not the first hint of Arthur and he's been like that ever since.We were told that being systemic he probably wouldn't respond as well as a poly kid but it was most definately his miricle drug.He is off the steroids and his Ibuprofin has been cut by 2/3 and this Wed we see our rheumy who will most like reduce the MTX.June 23 we go for our 4th study visit and being systemic, was treated like a king back in March,they were so amazed at his responce.The sad part is this study had been going on all along but took me 9 months to find out about it,oh well,better late then never.He has lost almost 10 lbs of pred weight and grown almost 3 inches in just 3 months.The pred never really effected his height like most systemic kids but since getting off his curve has jumped to the 75% and his weight is back on the chart for the first time in almost 2yrs.I worry that someday the Enbrel will just quit working but until that day comes I just enjoy watching him run circles around his older sister.

Hugs

Becki and 4systemic

[Guest guest]

Robin,

My son, Buzz, has been on Enbrel now for a few months. He was on Remicade but his doctor moved back to his country. They said he couldn't take Rem. with him not being under his treatment. I guess because it is a procedure, with the I.V. Buzz has been doing well with the Enbrel, he did better on Rem though. He has had a few flares he was not having on Rem. They are still nothing like before, however. I believe that is why his new rhem., whom we finally got to see last week, move him up to inj. meth. He also takes Salsicylate, Singular, Neurontin, and Klonopin. He has asthma and fibromyalgia also. They still view him as poly. and anky. spondylistis. I still over all think Enbrel is wonderful, he is much much better than before he was ever on either drug.

Amy, mom to Buzz

Enbrel question

Hi Everyone, (I am sorry that this is so long!)

I first joined this group 2 years ago when my son was first diagnosed with poly jra at age 2. I attribute my sons current good health to this group. When my son was diagnosed he was severely affected to the point that he could barely walk, he couldn't straighten his legs, and he was losing the use of his hands and wrists. Developmentally he was going backwards. I sent him to UCLA's ped. rheum dept. because his wonderful regular pediatrician was at UCLA. They said that he needed to be treated agressively but that the ideal medicine to put him on was not available - that being Enbrel. At the time, the waiting list for enbrel existed and they said it would be a year or longer for him to have access to the medicine. So instead we put him on a large combination of drugs - nothing really helped him and he stopped growing, became anemic and was generally not healthy. I was so distraught. Not only that, but my all around experience at UCLA from the nurses, to the doctor, to the P/T and O/T was less than desirable. Then someone from this group mentioned that their daughter went to Children's Hospital for her first appt. and would be receiving her first dosage of Enbrel the next week. This bit of info was amazing to me and I inquired about how her daughter could get the med. without having to be placed on the waiting list. I was informed about the program going on at Children's that allowed immediate access to the drug. I promptly called Children's and to end a LONG story, we switched to a wonderful hospital with a wonderful doctor, wonderful nurses and wonderful P/T and O/T specialists. But best of all - we were able to have our son placed on Enbrel. The morning after his first shot my son jumped out of bed and ran - no kidding. This drug has been a miracle for my son. I can only imagine what condition he would be in now if he had to have spent that time without Enbrel. He is so tall and has such a healthy glow and he is also in a medicated state of remission. We are scheduled to cut his dosage in half at our next visit. I am so thankful for this group. I am so glad that there is an ample supply of enbrel now for our children. But I am wondering this...( I have been away from this group for a while and rejoined recently) I see many children who are on many medications - many that I have not even heard of - Have these children ever tried Enbrel or is it that the drug just did not work for them? I am very interested in getting an idea of how Enbrel is working for others. What are your experiences with this drug? I know that children with systemic jra don't have as much success with it. I hear it is more a 50/50 chance of it working for them. But what about those with Poly jra or pauci? Please, if you have time, let me know about your experiences with this drug (or lack thereof). Did your children's doctors feel that this drug was important to try or did they suggest that you try other drugs first? This subject interests me greatly. Thank you. - RobinTo leave this mailing list, send request to: -unsubscribe

[Guest guest]

Hi Amy, I can't believe that his Doctor would have gotten him transfered

into the care of, another doctor before leaving!

So as he wouldn't have to stop treatment of the Remicade!

That seems so rediculous to me, that he had to stop, simply because that

doctor left the country!?

Emrel, my sister is on Embrel for her RA and yes she is having it! I

don't recall her mentioning any nose bleeds and not certain she does

injt.meth, but I will ask her! I know she is doing quite well on he

Embrel.

With all the things they say Buzz has, I don't know how they still say he

only poly?

Since I've been here and started with a new doctor, I gave him my entire

history from the very first flare/attack. Which put me in the hospital,

he told me that, it sounded like stills disease.

Yet all the doctors before never said any such think nor did I ever hear

anything like, pauci, poly or systemic until I found this group! all I

ever kniw was, that I had Rheumatoid Arthritis, Juvenile onset.

As I look back over the course of these 35 years of living with it, I

truely believe, that I was not given the proper course of treatment!

This disease has more twists and turns! than a jigsaw puzzle!

Good thoughts, prayers and Hugs! for the

Buzz O Nator!

Uncle Rusty Limbs

[Guest guest]

Uncle Rusty,

It was a matter of the Neumors hospital where his doctor was. They wouldn't

let him even talk about a new doctor to his patients. I don't really

understand all of what was going on. We did finally decide to go to

Shriner's in Shreveport, which is 6 hours away. They will at least help us

with transportation and all. The only doctors here in Alabama are not ped.

rheum. I don't feel comfortable with them. The new doctor at Shriner's

seemed wonderful. He felt Buzz needed to be treated a little more

aggressively, hence the inj. meth. Personally, I feel they may think

Systemic. He kept asking about fevers and rashes. I told him he does have

low grade fevers when he flares and sore throat, wheezing, fatigue, he just

doesn't get a rash. What he does have is bad eczema is what his doctor has

always said. He also has irritable bowel. Every joint in his body has been

affected in one way or another. He is better under control than he was, so

we are just so thankful for that.

Amy, mom to Buzz

Re: Enbrel question

>

> Hi Amy, I can't believe that his Doctor would have gotten him transfered

> into the care of, another doctor before leaving!

> So as he wouldn't have to stop treatment of the Remicade!

> That seems so rediculous to me, that he had to stop, simply because that

> doctor left the country!?

> Emrel, my sister is on Embrel for her RA and yes she is having it! I

> don't recall her mentioning any nose bleeds and not certain she does

> injt.meth, but I will ask her! I know she is doing quite well on he

> Embrel.

> With all the things they say Buzz has, I don't know how they still say he

> only poly?

> Since I've been here and started with a new doctor, I gave him my entire

> history from the very first flare/attack. Which put me in the hospital,

> he told me that, it sounded like stills disease.

> Yet all the doctors before never said any such think nor did I ever hear

> anything like, pauci, poly or systemic until I found this group! all I

> ever kniw was, that I had Rheumatoid Arthritis, Juvenile onset.

> As I look back over the course of these 35 years of living with it, I

> truely believe, that I was not given the proper course of treatment!

> This disease has more twists and turns! than a jigsaw puzzle!

> Good thoughts, prayers and Hugs! for the

> Buzz O Nator!

> Uncle Rusty Limbs

>

>

> To leave this mailing list, send request to:

> -unsubscribe

>

>

[Guest guest]

Amy, 6 hours away! wow! but Shrinners is really a GREAT hospital. And I

sue Buzz will do great! And yes it is odd that Neumors Hospital wouldn't

let the doctor even talk to him about another doctor!?

But again, he is at a great place now!

You know I have always had fevers, joint swelling and an occainal

irritable bowel too! Only one time though do I remember a rash! but not

as a child it was in my 20's and only the one time!

It was a large pinkish rash that went from my neck down my left shoulder

to stop just above my left peck!

Odd, but that is this jra for ya!

HPLTA Uncle Rusty

[Guest guest]

Robin first I want to say that I am thrilled to read about the great

improvement in your son. I'm so happy for him and for you!! This was so

encouraging to read .

Casey has been out of remission less than 2 months. So we're still finding

our way, I believe. (IDK if you read my intro - Casey was first diagnosed

when she was a year old, and went into remission when she was 6. She's been

off all meds and considered " cured " until April when she had a flare the

like of which I'd never seen nor imagined. She went from running and

jumping and climbing trees and riding a bike, to being unable to dress or

shower or feed herself, and unable to walk more than a few feet. The first

time was not anything like this, this is like a different disease, in it's

severity.) Dr. D discussed different approaches at our first visit. The

MTX did a good job for her the first time, so I wanted to go with that again

while I did more research for myself on the different options. We'd gotten

her bloodwork back, Dr. D's office called and said they wanted to see her

immediately, we got in the car and left...so I'd had no opportunity to learn

about or consider any of the newer treatments that have emerged in the last

6 years.

After Casey didn't get good results with the oral MTX, at our 2nd visit Dr.

D recommended trying the injectable form at a higher dose. If this doesn't

show a good result, then he wants to go to the enbrel next. She's also on

naproxin and is almost off her pred - just 5 mg./day (down from 30mg/day

originally) and tomorrow is her last pred. Plus folate, 400 mg/day.

That's my admittedly limited experience. This subject also interests me

greatly. I can read literature but the experiences of others are what I

really am learning the most from.

Sherry

http://www.ittybittybirdiebites.com

MAY SPECIALS - http://www.ittybittybirdiebites.com/special0305.html

Bid on Itty Bitty Birdie Bites at The Parrotlet Alliance Auction at

http://www.parrotletalliance.org/ and support a great organization!

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

From: " DIGIACOMO ROBIN " rnpdigiacomo@...

What are your experiences with this drug? I know that children with

systemic jra don't have as much success with it. I hear it is more a 50/50

chance of it working for them. But what about those with Poly jra or pauci?

Please, if you have time, let me know about your experiences with this drug

(or lack thereof). Did your children's doctors feel that this drug was

important to try or did they suggest that you try other drugs first? This

subject interests me greatly. Thank you. - Robin

[Guest guest]

My son has never experienced the back pain that you describe. How long does the back pain last? How soon after your injection does the back pain start? If it starts immediately, maybe it is not due to the injection, but more your nervousness about having to do the injection. Other than itchiness/redness at the injection site, I cannot think of anything that would happen immediately after giving the shot. Most things might require a little time to manifest themselves - but I am NO expert. It will be interesting to know if anyone else experiences this. And the big question - overall, do you feel (besides the backpain) that the enbrel is providing you some relief from your current arthritis pain? Robin & (age 5, polyjra) Enbrel Question Hello Group, So I recently started taking Enbrel. I've given myself two shots and I've noticed that after I take the show I get a really bad pain in my lower back. At first I thought it was because I was tensing up because I was afraid of the shot. But by the second shot I was ok and i didn't really tense up. Yet still this really bad aching pain all throughout my lower back. I give my injections on my stomach because my legs are rather skinny and I dont want to acidently peirce my muscle.. granted I know thats probably not possible but I was wondering if anyone has experienced this type of pain. (poly JRA and Spondy 18) To leave this mailing list, send request to: -unsubscribe

[Guest guest]

Hi ,

Haley takes .08 ml of Enbrel twice a week. She has never complained about any pains after taking the injections. I think you need to call your doctor and ask about this. What dosage are you taking?

Terrie & Haley (9 poly)

[Guest guest]

I take the full dosage of Enbrel.. I think its probably just from me tensing up. But it literally lasts for hours after the dosage. It feels like a combination of like the inside of my hip bones in the back and the muscles surrounding it that hurt. I think I will wait for my next injection to see if it happens again. But other then that I think it might be working. My level of energy has seemed to improve... It might be to early to know.. but I'm excited to see what happens.. I've heard good stuff about this medication.. and Im very ready for this JRA stuff to go away..

(poly JRA and spondy 18)

[Guest guest]

Yeah I've been sitting down no one ever told me about the whole straight position thing.. I do have the new Enbrel system.. but my rheumatologists have always used the 27 gauge needles at their office. They provided 23 guage needles to withdraw the enbrel that had a replacable needle so you could screw on a 27 guage needle once the enbrel was in the syringe. I'll try that standing up thing.. I give myself the shots so I thought sitting would be easier.. but I guess if it helps the back pain it would be fine with me..

(poly JRA and Spondy 18)

[Guest guest]

o,

only takes 1.1ml of Enbrel a week,so I don't have any experiance with

the 50mg shots.I did however pidle with looking up Enbrel and noticed while the

25mg vials have alot more inactive ingrediants then the 50mg vials, there are

differances.The 50mg vials have stuff in them that aren't in the 25mg vials.

Have you questioned about the smallest needle you can get on a 2ml syringe?

If it doesn't seem to be working I would see the pharmacist.I asked our

rheumy if you could get a 1.5ml or 2ml syringe with a 27 gauge needle and the

answer was no.Something tells me however that you can get a 2ml syringe where

the

needles screw off,just like the 25mg vial kits.Our 1 ml syringes do that and

are perfectly compatable with the needle that comes with the Enbrel.You might

just be able to buy 2ml and 1ml syringes with screw off needles and draw up

2-25mg vials at once.

I always by exta syringes so after it's all drawn up I can screw on a brand

new needle before giving the shot(excellant advice Georgina,HUGS).

I would be concerned over the strange chest feeling but would have thought

the small amount of alcahol in the 25mg vials would hurt where the 50mg vials

don't have it.

Sorry I don't have an answer but their might be an option and still give it

as one shot.

Good luck

Hugs

Becki and 6 systemic

[Guest guest]

The once a week dosage new Enbrel is a 1cc shot. It's just a more highly

concentrated Enbrel.. its 1cc of dilutent with 50mg of Enbrel instead of 1cc

dilutent with 25mg of Enbrel. It burns more because it has more of a

preservative in it since it is pre-made, not to mention the fact that there is

more

concentration in the new Enbrel. I have not taken it yet the new Enbrel that

is.. but my rhuemi told me to expect that these shots will hurt more.

[Guest guest]

In a message dated 1/14/05 9:01:35 PM Central Standard Time,

Arthurnator@... writes:

> o,

> only takes 1.1ml of Enbrel a week,so I don't have any experience with

> the 50mg shots. I did however piddle with looking up Enbrel and noticed

> while the

> 25 mg vials have alot more inactive ingrediants then the 50mg vials, there

> are

> differances.The 50mg vials have stuff in them that aren't in the 25mg vials.

> Have you questioned about the smallest needle you can get on a 2ml syringe?

> If it doesn't seem to be working I would see the pharmacist.I asked our

> rheumy if you could get a 1.5ml or 2ml syringe with a 27 gauge needle and

> the

> answer was no.Something tells me however that you can get a 2ml syringe

> where the needles screw off,just like the 25mg vial kits.Our 1 ml syringes do

> that and

> are perfectly compatable with the needle that comes with the Enbrel.You

> might

> just be able to buy 2ml and 1ml syringes with screw off needles and draw up

> 2-25mg vials at once.

> I always by exta syringes so after it's all drawn up I can screw on a brand

> new needle before giving the shot(excellant advice Georgina,HUGS).

> I would be concerned over the strange chest feeling but would have thought

> the small amount of alcahol in the 25mg vials would hurt where the 50mg

> vials

> don't have it.

> Sorry I don't have an answer but their might be an option and still give it

> as one shot.

> Good luck

> Hugs

> Becki and 6 systemic

>

Hi,

About a month ago when I went to pick up the Enbrel I asked so many questions

that I got the pharmacist kind of upset. He told me that it cannot get

transferred into another vial and that the needle will not come off.

She never did complain before about getting the injections using the 2 25 mg

ones. She has gotten used to it I guessed. Since it is my wife that gives it

to her and we did not give it to her for 2 weeks because she was sick, I

thought that she had gotten nervous.

Thanks for your reply.

o Salas

[Guest guest]

Helen - maybe try giving the benedryl before the injection. Hunter is not on

Enbrel (yet) but the nurse who gives it said that she does give benedryl to

several of her patients that come in each week who have on site injections (not

all Enbrel users though). Hope things get better soon - Sandi Ken Hunter (6

Systemic)

[Guest guest]

Helen,

Rest assured the delay of shot reactions is normal.Unfortunately it's also

uncomfortable and I have heard the tummy is the most sensative.

The good news is that it will stop but may take a while.

I'm sorry Nick is so itchy, just assure him that it will stop and this type

of reaction is common.

went the first 2 months with nothing then reacted for 3 months and

nothing now for 2years.

Love and hugs

Becki and 6 systemic

[Guest guest]

Around six months after taking Enbrel I had a weird reaction to it, the

swelling the welts, my doctor said that sometimes it happens and to take

benydril

if it got worse she would take me off it. The reactions lasted about a

month, and now its back to normal. She said it can happen because the immune

system is changing, but it should go away and not come back..

Lots of love

[Guest guest]

Helen - Do you rotate the sites?? I know you are supposed to rotate the

sites in order to avoid these type of reactions. If you are rotating the

sites and still having the reactions I would call your rheumy... Caroline

rarely had reactions, maybe two or three times. But, they also looked like

welts and took a few days to go away...

I'm sorry that Nick has to go through this. I sure hope he's not developing

a reaction to it!

Alia and Caroline, age 3, poly and uveitis

Enbrel Question

Hi everyone..

Im sadly behind on posts and hope to get caught up once i get the

kiddos off to school, but in the meantime I have a quick question to

all those on enbrel.

Nick has been on enbrel since dec and is doing fantastic. In the

past there was no sign of any injection sight reactions but for the

last 2 shots hes had quite a reaction, the area swells up, gets red

and " welty " looking and itches badly. His shot last thursday still

left a red welt on saturday, it was gone finally on sunday. I was

hoping it was a one time thing, but last nights shot has him clawing

at his tummy this morning, its swollen again and he cant leave it

alone, hes stratching it constantly. I even gave him benadryl this

morning to try and help the itching.

Any thoughts??? I know injection site reactions are common, but why

are they starting now??? and what can i do to help. This is really

bothering him.

Hugs Helen and (7,systemic)

[Guest guest]

-Yea we rotate the sites.. but they are always on his belly, never

on legs or arms. I hope the benadryl helps.. hes scratching itlike a

mad fool, he will take the skin off his belly if he doesnt stop.

hey, did you see the plug for the JAM on Kare11 this morning.. it

was around 6.30am. I hope they will also cover it with a report...

Any sign of the bracelets yet???? I cant wait!!

hows Miss C doing, ear infection cleared up????

hugs Helen and (7,systemic)

-- In , " Pranke, Alia " <Alia.Pranke@t...>

wrote:

> Helen - Do you rotate the sites?? I know you are supposed to

rotate the

> sites in order to avoid these type of reactions. If you are

rotating the

> sites and still having the reactions I would call your rheumy...

Caroline

> rarely had reactions, maybe two or three times. But, they also

looked like

> welts and took a few days to go away...

>

> I'm sorry that Nick has to go through this. I sure hope he's not

developing

> a reaction to it!

>

> Alia and Caroline, age 3, poly and uveitis

>

> Enbrel Question

>

>

>

> Hi everyone..

>

> Im sadly behind on posts and hope to get caught up once i get the

> kiddos off to school, but in the meantime I have a quick question

to

> all those on enbrel.

>

> Nick has been on enbrel since dec and is doing fantastic. In the

> past there was no sign of any injection sight reactions but for

the

> last 2 shots hes had quite a reaction, the area swells up, gets

red

> and " welty " looking and itches badly. His shot last thursday still

> left a red welt on saturday, it was gone finally on sunday. I was

> hoping it was a one time thing, but last nights shot has him

clawing

> at his tummy this morning, its swollen again and he cant leave it

> alone, hes stratching it constantly. I even gave him benadryl this

> morning to try and help the itching.

>

> Any thoughts??? I know injection site reactions are common, but

why

> are they starting now??? and what can i do to help. This is really

> bothering him.

>

> Hugs Helen and (7,systemic)

>

>

>

>

>

>

>

>

[Guest guest]

Hmm... Hopefully the benadryl will work. What a bummer!

I called Friday and they hadn't shipped yet. I am calling today. I told them

I need them by Thursday so **hopefully**. I want to get them to people by

Saturday at the latest.

Caroline is doing well. Her ear infection seems gone. We just finished up

her Zithromax. She's been running a low grade fever (100-101) every night

for the past week. I am not sure what that is all about, but we'll just

watch and see.

No, I missed that. I'm usually watch High 5 or Peep on TLC at that time!

Caroline shows!!

Alia and Caroline, age 3, poly and uveitis

Enbrel Question

>

>

>

> Hi everyone..

>

> Im sadly behind on posts and hope to get caught up once i get the

> kiddos off to school, but in the meantime I have a quick question

to

> all those on enbrel.

>

> Nick has been on enbrel since dec and is doing fantastic. In the

> past there was no sign of any injection sight reactions but for

the

> last 2 shots hes had quite a reaction, the area swells up, gets

red

> and " welty " looking and itches badly. His shot last thursday still

> left a red welt on saturday, it was gone finally on sunday. I was

> hoping it was a one time thing, but last nights shot has him

clawing

> at his tummy this morning, its swollen again and he cant leave it

> alone, hes stratching it constantly. I even gave him benadryl this

> morning to try and help the itching.

>

> Any thoughts??? I know injection site reactions are common, but

why

> are they starting now??? and what can i do to help. This is really

> bothering him.

>

> Hugs Helen and (7,systemic)

>

>

>

>

>

>

>

>

[Guest guest]

-Thanks Becki...

Im glad to hear it should stop. My hubby was a bit freaked, but i

knew it was fairly common, i just expected it at the beginning, not

3 months into it...

Hows doing these days???

Hugs Helen and (7,systemic)

-- In , Arthurnator@w... wrote:

> Helen,

> Rest assured the delay of shot reactions is normal.Unfortunately

it's also

> uncomfortable and I have heard the tummy is the most sensative.

> The good news is that it will stop but may take a while.

> I'm sorry Nick is so itchy, just assure him that it will stop and

this type

> of reaction is common.

> went the first 2 months with nothing then reacted for 3

months and

> nothing now for 2years.

> Love and hugs

> Becki and 6 systemic

>

>

>

[Guest guest]

-..

Seems like this happens often after taking the enbrel for some

time... I'm glad to hear it will go away. I guess ill start to give

Nick benadryl before his shots for while.

thanks

Hugs Helen and (7,systemic)

-- In , bncknwurnumber@a... wrote:

> Around six months after taking Enbrel I had a weird reaction to

it, the

> swelling the welts, my doctor said that sometimes it happens and

to take benydril

> if it got worse she would take me off it. The reactions lasted

about a

> month, and now its back to normal. She said it can happen

because the immune

> system is changing, but it should go away and not come back..

>

> Lots of love

>

>

>

>

[Guest guest]

Hello,

My experience with the Enbrel is 6 doses long...so take this for what it is

worth.

I read the same info on injection site reaction before starting the Enbrel. To

avoid any chance of a random injection reaction, I go overboard when it comes to

sterilization of the injection site. Here is my exact proceedure in case you

want to try it out to see if it changes your results. Other than this...I would

suggest that it is your body reacting to the shot.

1. I first take 3 cotton balls and soak them with rubbing alcohol. I scrub the

heck out of a 4 inch by 4 inch section of my belly to the left or right of the

belly button. I have no hair in this area so it makes it easy to know it is

clean.

2. I then take 3 more cotton balls and put a liberal amount of alcohol on them

and wipe them around the area again.

3. I then take 3 more cotton balls and put just a bit of alcohol on them and

wipe away what was left behind the last time leaving only a thin amount on the

skin which drys fairly quickly.

4. The syringe is laying inside a ziploc plastic baggy where it spent the

previous 30 minutes waiting to get to room temp (as per the instructions on the

pre-filled syringes). I pull it out of the bag, take off the rubber stopper

cap, stab it into the clean chunk of fat and VERY VERY SLOWLY inject. I would

say that it takes me a good minute and a half to get the plunger all the way

down. My thought on this is that the tissues surrounding the injection area

have to absorb this amount of liquid...and if I introduce it slowly enough...it

might not upset the area. If you just punched down the plunger and forced that

liquid into this solid area (I guess fat is sort of a solid?)...I picture it

being the equivelant of a punch to that area...so why wouldn't it bruise. The

liquid sort of pinches or maybe it is a slight burning sensation as it goes

in...but I am a wuse for pain. I have only had a small bruise show up one time

and it was the day after my 3rd injection. It took the bulk

of a week to go away as most bruises do.

5. After I pull out the needle, I wipe the spot lightly with another alcohol

soaked cotton ball and put a bandaid over the spot for at least a half hour. I

don't shower or do anything to get the area nasty for at least a half hour.

Anyway, It seems to work for me to do it this way without any reaction (with

the one exception which was more than likely caused by my trembling hand jerking

the needle around inside than anything else anyway).

Are you filling your own syringes or using the 50ml prefilled? Are you

injecting once a week or more? How is it working for you for the pain? I am

having unbelievable success with the Enbrel myself.

Take care and I hope this helps a bit. Let me know.

Rob

[Guest guest]

Dear Rob:

Thanks very much for taking the time to reply. I really appreciate it.

BTW, my doctor's nurse practitioner said that they have seen responses

in 2 weeks. So, it sounds as if you may be one of the lucky ones!

My kids (teens) say my energy is much increased. I am in week three. I

had not noticed much of a specific effect, but I'd have to say the

kids are right, I am getting much more done per day than I have for

years. We will see. With waxing and waning of the disease, I've been

through one or two brief periods of feeling better that appeared to be

random in origin---no new treatments, no new lifestyle changes. I was

told to give it the standard 12 weeks before deciding if enbrel worked.

As for technique...mine is nearly identical to yours, except I didn't

wait terribly long today after mixing the drug. However, the bruises

appeared after dosings in which I did wait. The bruises took at least

a week to appear. That is making me think it is more your second

suggestion, a reaction to the drug. The scary looking rash appeared at

about 10 days but is gone now.

I may call and ask my NP's opinion. If I learn anything, I will post it.

Thanks again!

Ann

[Guest guest]

It seems to depend on the person. It only worked for about 24 hrs for my

daughter. It is not a long acting drug but not sure on the half life. We never

skipped even when really sick except maybe one dose, not the whole time she was

on antibiotics. It seems to depend on the doctor. And is the fever JRA related

or infection. I would talk to your rheumy about your concerns since there is a

variety of ideas about the length but I know that it does not remain in the

system for very long, hence twice a week dosing. The one shot must be a little

bit different. Sorry not very helpful.

e, mom to joe 19 poly + lupus (rheupus)

jahutslar <shutslar@...> wrote:

Kendra is on enbrel. I was wondering when you have to be off of it due

to illness, how long the last dose stays in your system. a month ago

she had to miss a week and a half due to a sinus infection. the past

week she had a fever so she missed a dose again. she seems to have

alot more pain/stiffness when she misses. i realize that just being

sick does that to her, but i was wondering how fast missing the enbrel

affects her?

thanks

Jill & kendra 11 jra

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