Enbrel

[Guest guest]

Nope - doesn't make me itchy! It has different side effects in all of us

though!

In a message dated 10/20/2004 9:04:28 PM Central Daylight Time,

tr1rt@... writes:

Hi y'all,

For those of you on Enbrel - is it just me or does it make you super itchy

for about 24

hours after each dose?

I like that this drug is working so well but the itchyness is driving me up

a wall.

Tom - in Anchorage, Alaska

[Guest guest]

Try taking some Benadryl.

[ ] Enbrel

>

>

>

> Hi y'all,

>

> For those of you on Enbrel - is it just me or does it make you super itchy

> for about 24

> hours after each dose?

>

> I like that this drug is working so well but the itchyness is driving me

> up a wall.

>

> Tom - in Anchorage, Alaska

>

[Guest guest]

I am only itch at the injection site for a couple of hours.

tr1rt <tr1rt@...> wrote:

Hi y'all,

For those of you on Enbrel - is it just me or does it make you super itchy for

about 24

hours after each dose?

I like that this drug is working so well but the itchyness is driving me up a

wall.

Tom - in Anchorage, Alaska

[Guest guest]

I get the biggest welt say 5-6 " in diameter and it's like the world's

biggest mosquito bite.

It lasts for about a week and it drives me crazy. The dr. mentioned to

ice the area first but then

the injection hurts more. I have tried cortizone cream (prescription

strength) and it sort of helps.

But I cannot give up the Enbrel since it works so well. I guess I will

have to live with it.

ARGH.

desiree

On Oct 21, 2004, at 8:37 AM, Lawrence Lichtenfeld wrote:

>

>

> I am only itch at the injection site for a couple of hours.

>

> tr1rt <tr1rt@...> wrote:

>

>

> Hi y'all,

>

> For those of you on Enbrel - is it just me or does it make you super

> itchy for about 24

> hours after each dose?

>

> I like that this drug is working so well but the itchyness is driving

> me up a wall.

>

> Tom - in Anchorage, Alaska

[Guest guest]

>

>

> Hi y'all,

>

> For those of you on Enbrel - is it just me or does it make you

super itchy for about 24

> hours after each dose?

>

> I like that this drug is working so well but the itchyness is

driving me up a wall.

>

> Tom - in Anchorage, Alaska

LOL! I was just sitting here trying not to scratch and I thought it

HAS to be the enbrel..always happens after a shot. I think I will

ask my doc about taking benedryl with the shot. Thanks for

confirming it for me.

I have een on enbrel for 2 months and am just noticing some subtle

improvements. My p is still very bad. Thanks to messages from this

group I know to hang in there and keep taking it for awhile.

Best,

Marti

[Guest guest]

I was looking at the enbrel site and it lists this as a minor side affect that

should be

mentioned to your doctor... guess I will have to remember to tell my

dermatologist about

that next week...

> >

> >

> > Hi y'all,

> >

> > For those of you on Enbrel - is it just me or does it make you

> super itchy for about 24

> > hours after each dose?

> >

> > I like that this drug is working so well but the itchyness is

> driving me up a wall.

> >

> > Tom - in Anchorage, Alaska

>

> LOL! I was just sitting here trying not to scratch and I thought it

> HAS to be the enbrel..always happens after a shot. I think I will

> ask my doc about taking benedryl with the shot. Thanks for

> confirming it for me.

>

> I have een on enbrel for 2 months and am just noticing some subtle

> improvements. My p is still very bad. Thanks to messages from this

> group I know to hang in there and keep taking it for awhile.

>

> Best,

> Marti

[Guest guest]

Just a quick thought here....Why on earth would he want you to start on

enbrel when you are relatively new to RA (recently diagnosed) and therefore

would

be a super candidate for Minocin?? Even my old rheumatologist who told me

I had RA for too many years to give minocin a try said it is mainly for

people who had had RA less than two years (WRONG!)

Usually docs start you off with the least toxic med and move on when or

if that med fails. Minocin should be a first choice for you, with maybe

some meds for pain. Enbrel is a new and very expensive drug. Many docs get a

'bonus' for signing patients up and getting their insurance to pay for it.

These perks are a definite conflict of interest in my opinion. Many of these

meds have very bad side effects and even if you do well on them at first, the

effects are cummulative with time. I would be very careful of these meds and

research them well. On most of them it is my opinion you are giving up

quantity for quality (hopefully) of life. My old MD was the first one to

point

this out to me.

Personally I want BOTH quantity and quality, something I have been able

to get with the minocin. Just my opinion, Martha

[Guest guest]

Good Luck with your Enbre Andi -- I have had no bad effects from it and I am

sure it is working well eventhough the disease seems to be stronger the meds (I

also take Arava). Please keep us posted on your progress. Cheri

andi <andiwooley@...> wrote:

hi everybody.

haven't been here for awhile as i hate being on the computer for more

than about an hour but i thought it was time i checked back in.

I'm taking mtx,celebrex and am starting enbrel tomorrow. I've been

putting it off for a long time because i'm always scared to try new

meds. I'm afraid of the side effects mostly.But the pa is starting to

effect my work again so it's time. I drempt the other night that my

shoulder was broken with the bone sticking out and bleeding all over

the place. Then I woke up and had to laugh because that's how bad my

shoulder was aching.

One of my new coworkers keeps telling me i'm ada (americans with

disibitlites act) and can get work to supply keyboard and make my

work station more user friendly for me. He also brushes the flakes

off my shoulders. (even my seperated husband doesn't like to do

that). So here I am, also thinking about moving to a warmer climate,

but my job has great medical bennies.

Thanks for being here.

andi

[Guest guest]

I've been on and off of Enbrel for five years. It has been nothing less

than a miracle for some of us. The side effects are generally few and mild

in most cases. Personally, I feel that MTX is a potentially more dangerous

than Enbrel. Enbrel does not require the extensive and regular blood test

that are necessary with MTX. You may even be able to stop MTX. With Enbrel

you can even hope for remission. I went immediately on Enbrel because I

could not tolerate MTX. Good luck and I hope Enbrel is as effective for you

as it has been for me. Hopefully it will make a big difference with your P

as well as your PA. One side effect you may experience will be less

fatigue. The injections are nothing and the infection risk just requires

you to be a little more careful and observant with your exposure and

hygiene.

[ ] enbrel

hi everybody.

haven't been here for awhile as i hate being on the computer for more

than about an hour but i thought it was time i checked back in. I'm taking

mtx,celebrex and am starting enbrel tomorrow. I've been

putting it off for a long time because i'm always scared to try new

meds. I'm afraid of the side effects mostly.But the pa is starting to

effect my work again so it's time. I drempt the other night that my

shoulder was broken with the bone sticking out and bleeding all over

the place. Then I woke up and had to laugh because that's how bad my

shoulder was aching.

One of my new coworkers keeps telling me i'm ada (americans with

disibitlites act) and can get work to supply keyboard and make my

work station more user friendly for me. He also brushes the flakes

off my shoulders. (even my seperated husband doesn't like to do

that). So here I am, also thinking about moving to a warmer climate,

but my job has great medical bennies.

Thanks for being here.

andi

[Guest guest]

Hi Andi,

I was also very very hesitant about starting Enbrel. However, once

I did, within 2 weeks I felt so so much better. I've been on it for

almost 4 months and have one thing to say ...MIRACLE!!!! Before

starting it, I had been on MTX for 4 months with some improvement

but nothing to get excited about. My feet were so swollen that none

of my shoes fit, stairs were impossible. I had it so bad in one of

my fingers that I had to use my thumb to cut a peanut butter and

jelly sandwich..try that some time...wierd. My middle finger on the

other hand was stuck straight up in the air...my " salute " to the

entire situation. I'd " sleep " at night with icepaks on my

ankle/knee and a heating pad on my butt/hips/back/neck. Whatever

wasn't iced or heated was throbbing. I'd wake up every morning and

just lye there dreading the first step. Added to my physical pain

was a bad case of depression..who wouldn't be? Did I mention that

I'm only 38 with a demanding part-time job and a full-time job

raising 3 young kids (8,6 and 2). I was a MESS. That was THEN......

Since starting Enbrel, I'm now able to exercise 4+ days a week. I

even ran a mile a couple weeks ago. I feel like I am cured. I know

this isn't really the case but as long as I feel so great...in my

mind I am. My last bloodwork was almost perfect. I go again

tomorrow and am hopeful that it will be just as good. If so, the

MTX should be reduced again. As an added bonus, the psoriasis which

hadn't been major but was certainly an embarassing nuisance is

totally GONE. My hairdresser is amazed at the difference. My

toenails are almost totally back to normal.

As for the dangers of Enbrel...everyone I've spoken to including my

Reumatologist, primary care Dr., dermatologist, pharmacist, my

sister who is a nurse...everybody says this is MUCH safer than MTX.

I questioned my Reum. and pharmacist about why, if this is true, do

they start on MTX. My Reum. said b/c it's an older drug. My

pharmacist who I totally respect told me what I suspected....$$$$$.

The insurance companies require you to try the cheaper drug first,

regardless of whether it's more dangerous.

About complications...the only problem I had was that early on I had

a strange, extremely itchy rash on my chest. Looking back, I think

it was the combination of a sunburn with a major amount of mosquitoe

bites. I've always been very sensitive to insect bites, I think the

Enbrel might have made my body even more sensitive to them. I'm not

really sure but will be cautious going forward. Also, at the same

time as the rash, I had a flare of psoriasis...worse than I'd ever

had it. It felt like someone hit my head with a hammer. I posted a

question about it to this group and there are others who experienced

the same thing. I rode it out and ithin a couple weeks the flare

was gone leaving me COMPLETELY clear. I agree with the other posts,

you have to be diligent about hygiene. I probably wash my hands 10

times a day...maybe more. I worry about the kids bringing things

home from school...it seems sore throats are a little more sore and

that stuffy noses are a little more stuffed. Pretty minor issues

though when I think back to how I had been feeling.

The shots really are not the least bit painful. My husband does it

but I've also done plenty myself. They don't hurt at all...it's

more mental.....

If by chance Enbrel doesn't work for you...there are other options.

If at some point Enbrel stops working for me I'd probably try

Remicade.

OK...sorry so long. I love Enbrel and if you're suffering....I

can't say enough good things about it. If we had any extra cash, my

husband and I would buy stock in Wyeth. I'd love a job promoting

Enbrel!

Good Luck With It. Please let me know how it goes.........

>

>

> hi everybody.

> haven't been here for awhile as i hate being on the computer for

more

> than about an hour but i thought it was time i checked back in.

> I'm taking mtx,celebrex and am starting enbrel tomorrow. I've been

> putting it off for a long time because i'm always scared to try

new

> meds. I'm afraid of the side effects mostly.But the pa is starting

to

> effect my work again so it's time. I drempt the other night that

my

> shoulder was broken with the bone sticking out and bleeding all

over

> the place. Then I woke up and had to laugh because that's how bad

my

> shoulder was aching.

> One of my new coworkers keeps telling me i'm ada (americans with

> disibitlites act) and can get work to supply keyboard and make my

> work station more user friendly for me. He also brushes the flakes

> off my shoulders. (even my seperated husband doesn't like to do

> that). So here I am, also thinking about moving to a warmer

climate,

> but my job has great medical bennies.

> Thanks for being here.

> andi

[Guest guest]

Dear Priscilla,

When you say fatigue....do you mean not only tiredness but muscle fatigue as

well? I am getting horriffic muscle fatigue and pain in the back of my legs,

along with an all over fatigue, from the Enbrel. The only thing it is helping

is my mouth sores, but I don't know if I can bear this fatigue. The doctor says

it's because it's a protein and I will get used to it. I don't know of anyone

with leg pain from it.

Please let me know if you have this too...

Your friend...Debra

[Guest guest]

I had the same problems when I started Enbrel but stuck with it to

give it a chance and after about 2 months I really started felling

the help this medicine gives. That was almost 2 years ago and I am

still on it. I have had to get off twice because I caught

infections from the grand children, that's when you know how good it

is working. I couldn't wait to start giving the shots again. Last

month my blood pressure went up again, but I have been taking meds

for it anyways so I can't blame it on the Enbrel.

I still get fatigued now and then and have sore legs and feet. But

is a whole lot better then it was before.

Good luck and stick with it awhile to give the medication a chance

to work. Not all of us feel a difference after the first shot.

Dick

[Guest guest]

I was in suicidal pain until I started Enbrel. My RD said I had the most

aggressive case of PA in the hands he had ever seen and would lose the use

of my hands within three months. Cortisone shots reduced the pain and

swelling for a while but never resolved it. And yes, I had flares in the

same joints within weeks. Enbrel was a miracle for me. I had relief from

the first injection. Most of my joint problems and pain resolved within a

couple of weeks but Enbrel cannot repair joint damage that is already

present so I have the frozen joints. I believe your RD is wrong. People

should try Enbrel first with newly diagnosed PA not after the damage is

done. The reason they do not is because it is expensive and the insurance

companies whine. Enbrel has the potential to put you in remission and is,

in my opinion, much safer than MTX, Gold, and a lot of other meds. I

actually demanded to go on it before it was approved for PA. I'm sure glad

I did. If I had listened to the standard treatment options of the time I

would have lost the total use of my hands and probably checked out.

Re: [ ] Psoriatic Arthritis:

Thank you for sharing. Do you still have pain in the frozen joint? I do.

I do see a Rhuematologist. That makes me feel a little better. I am

frustrated with my treatment. I am ready to try Enbrel too. My doc keeps

saying we have to outweight the best treatment for you because there are so

many side effects to the medicines. Believe me, I know this. My regular

internal medicine doctor prescribed several NAISD's before I went to a

rhuematologist. Have you had flare ups in the same fingers a few months

down the road. I'm trying to positive here. I don't know what to expect.

Thanks!

[Guest guest]

I am taking two 25mg injections twice a week of Enbrel. Last night I

injected for about the 4th time since I had stopped for a while due to a sinus

infection. I had a terrible local reaction with a giant hive around each

site.

They were raised and itchy and about the size of half dollars.. I took an

Allegra and that seemed to help somewhat. I know it is not my injection

technique since I have given hundreds of injections when I was working in the

doctor's office. Has anyone had the same reaction?

Janet

[Guest guest]

Did you have hives or just one big bump? I'm very thin. Sometimes if I

inject a spot with little fat I get a big bump. If I cross a blood vessel I

get a bruise and a hive like bump. It doesn't happen often but it does

happen. This is also because I only inject my thighs. I have heard you

never get this problem if you inject your stomach because there is always

more fat. Injecting my stomach creeps me out so I don't do it.

Re: [ ] Enbrel

I am taking two 25mg injections twice a week of Enbrel. Last night I

injected for about the 4th time since I had stopped for a while due to a

sinus

infection. I had a terrible local reaction with a giant hive around each

site.

They were raised and itchy and about the size of half dollars.. I took

an

Allegra and that seemed to help somewhat. I know it is not my injection

technique since I have given hundreds of injections when I was working in

the

doctor's office. Has anyone had the same reaction?

Janet

[Guest guest]

In a message dated 12/17/2004 11:44:39 PM Eastern Standard Time,

ronevans@... writes:

This is also because I only inject my thighs. I have heard you

never get this problem if you inject your stomach because there is always

more fat. Injecting my stomach creeps me out so I don't do it.

I had two huge bumps. One for each injection and believe me fat in the

thighs is not a problem for me. I am going to inject the stomach next and see

what happens.

Janet

[Guest guest]

Hi Janet

When I injected in my stomach, where there is plenty of extra fat, I

never felt anything or had a reaction. my thighs however would bruise

or swell. I didn't like giving it in my stomach so most times did my

thighs. I have the kangaroo pouch in the stomach from c sections and

felt like the drug didn't get through as well as in my leg.I know

that is silly, but I couldn't help feel that way. Freezing the spot

on your leg for injection though definetly helps.

Pat

>

>

> In a message dated 12/17/2004 11:44:39 PM Eastern Standard Time,

> ronevans@s... writes:

>

> This is also because I only inject my thighs. I have heard you

> never get this problem if you inject your stomach because there is

always

> more fat. Injecting my stomach creeps me out so I don't do it.

>

>

> I had two huge bumps. One for each injection and believe me fat

in the

> thighs is not a problem for me. I am going to inject the stomach

next and see

> what happens.

> Janet

>

>

>

[Guest guest]

Hi Ron and Janet,

I have had four shots of Enbrel so far and injected in both sides of my

stomach and each thigh. No Problems in any of these sites but if I had to make a

decision on what was the easiest, I would say the stomach.

Good luck,

[Guest guest]

This is a response to message #4 about Enbrel. I started doing the Enbrel

injections on June 1st this past summer. It has given me my life back. In the

beginning, giving myself 2 shots a week was not something I looked forward to,

but I injected in a fatty part of my tummy (no problem finding that :-) and I

felt nothing. I did occasionally have a small bruise around the injection site

for a few days - that's all. I had been on Methotrexate (20 mg per week) for 18

months and that alone was not helping. Within a month of starting on Enbrel I

had more energy, less brainfog and eventually less pain. I did have 2 wrist

operations over the past 6 months, but my rheumy swears it is the Enbrel that

has improved my condition. When my grandson was born 17 months ago, I couldn't

pick him up or even hold him because my wrists were so painful. Now I have no

problem chasing him around and picking him up.

I recently began the once-a-week dose and again, have not had any difficulty. I

do find it stings a little (very little) and the pharmacist said that was

probably because the dose is twice as strong. I also reduced the Metho down to

15 mg a week and will try to reduce that again in 3 months. I will probably

always need the combination of Metho and Enbrel because research has found that

to be the most successful combination.

I should say that with the Methotrexate it took probably 4 months before that

really kicked in, and the Enbrel took several months as well - so be patient and

keep a positive outlook. You want EXPECT it to help.

Please feel free to email me directly if you would like to talk more. My email

is avangils@....

Warm wishes,

e van Gils

[Guest guest]

I was leary of injecting myself too. I have found that the fear of the injection

was actually

much worse than the real thing. A little like the bark being worse than the

bite. If you have

someone that can come with you for the training and would be willing to help you

with the

injections it might make things easier for you to get used to. My wife gave me

my first at

home injection, I have been injecting myself ever since ( I am usually the first

one up in the

house and it seemed inconvenient to have to rely on someone else to take my

medicine).

The positive effects from the first two injections helped me to overcome any

fear I had of

injecting myself. The strange part of it all is how fast I got used to injecting

myself.

Good luck with the treatments. If your results are anywhere near the results I

have had you

will have no trouble with overcoming the fear. The results will overshadow any

reluctance

you have.

Tom in Anchorage with a seasonal temperature of -5 degrees f

>

>

> Hi all,

>

> I have spent the last month or so just reading your posts and

> haven't " jumped in " to post myself. Very busy these days. Any how,

> I have a new derm that I am seeing (fired my 3rd rhumey) and he is

> very senstive and wonderful. He is my age, 31, maybe that is why we

> get along so well. He just has an excellent bedside manner. That as

> we know, is rare. He started me off on MTX and I have been on it for

> about 4 months. Had to go off of it for a short time with a bad

> chest cold. Now, we are ready to try the Enbrel. I know it is safer

> and more effective most likely, but I am needle phobic. I know I

> have read on here before others like myself who were afraid of

> needles and have begun giving themselves the injections, but I am

> terrified! Does anyone have any friendly advice as far as how to

> psych myself up for this? I don't go in to the docs for the first

> injection training until Feb and I think of this everyday with

> loathing. HELP!

>

> Tamara

[Guest guest]

Hi Tamara,

Maybe you could get someone close to you to do it for you initially and just

don't look at first. Then when you feel ok with that you could start

watching them do it. Finally, hopefully, (lol)

you could try it yourself. I am pretty confident that if you are not

watching the needle go in, you will be saying to whoever is doing it for you,

" Was

that it????? " after they tell you its finished. lol.

Good luck,

[Guest guest]

Hi Tom,

I am certain that you are right about this. I am so hopeful that

the Enbrel will be my miracle drug that I think I am mentally ready

to do anything, including inject myself. Thanks for the support.

Tamara

>

>

> I was leary of injecting myself too. I have found that the fear of

the injection was actually

> much worse than the real thing. A little like the bark being worse

than the bite. If you have

> someone that can come with you for the training and would be

willing to help you with the

> injections it might make things easier for you to get used to. My

wife gave me my first at

> home injection, I have been injecting myself ever since ( I am

usually the first one up in the

> house and it seemed inconvenient to have to rely on someone else

to take my medicine).

> The positive effects from the first two injections helped me to

overcome any fear I had of

> injecting myself. The strange part of it all is how fast I got

used to injecting myself.

>

> Good luck with the treatments. If your results are anywhere near

the results I have had you

> will have no trouble with overcoming the fear. The results will

overshadow any reluctance

> you have.

>

> Tom in Anchorage with a seasonal temperature of -5 degrees f

>

[Guest guest]

Hi ,

Thanks for the advice. I think I will try that. I hope it is just

like you describe.

Tamara

>

> Hi Tamara,

>

> Maybe you could get someone close to you to do it for you

initially and just

> don't look at first. Then when you feel ok with that you could

start

> watching them do it. Finally, hopefully, (lol)

> you could try it yourself. I am pretty confident that if you are

not

> watching the needle go in, you will be saying to whoever is doing

it for you, " Was

> that it????? " after they tell you its finished. lol.

>

> Good luck,

>

>

>

>

>

>

[Guest guest]

Dear Tamara, Congratulations on your decision. I know how hard it is to

make these decisions since the side effects can be really scary with some of

these drugs. So far I’ve tried Enbrel, Humira, MTX, Plaquinel, Sulfa drugs,

predinsone, and Vioxx and all the other anti-inflammatory. I had some

really bad reactions to several of the drugs and got scared pretty bad. Yet

when my doctor suggested Arava, I went ahead and tried it out. Luckily for

me, it’s been 6 months now and no real side effects. I have some minor

stomach upset, but nothing I can’t handle. I guess my point is it takes

courage to try new things and even if Enbrel isn’t your magic potion don’t

give up. Hopefully, it will be the answer to your prayers and you’ll get

your life back or at least part of it.

We are so lucky to be living in an age when these drugs are finally

available to us. I’m not convienced they are for everyone, and I wish they

had helped me more, but at least they are there for others. Take care and

let us know how it goes. Love, Fran

[Guest guest]

Hi Tamara,

I was so so scared at the idea of injections...I can totally relate

to your fear. When I started it this past August, I had my husband

do it...within 2 weeks, the improvement was so dramatic that I

started to look forward to getting them. I was eager to see how far

my recovery would go. A month after starting the Enbrel my husband

had to go away for 2 weeks so I had to try it on my own. It

couldn't have been easier. To be completely honest though, since

changing to the 50 mg. shot, I haven't been able to do it myself.

It's not bad, just seems to sting a little more than the 2 25mgs.

I've yet to hear of one other person say this though so it's

probably just me.

The last time I was at my Reum, my blood work was completely normal

and most importantly, I felt completely symptom free.....zero

psoriasis, zero joint pain. That was after being on Enbrel for 4

months.

Now I have a question for you, you mentioned going off the MTX at

one point b/c of a bad chest cold. I've been battling a bad chest

cold since mid December and can't get totally lose it. I had tried

skipping Enbrel a couple times but didn't think to skip the MTX.

Did your Reum. tell you to skip the MTX? Did skipping it help you

get better? I'm only on 7.5 mg. of the MTX but at this point, I'm

thinking I need to skip everything to start feeling better (and in

the meant time cross my fingers that I don't trigger the PA)

Good luck ! You're going to love the Enbrel ! It totally gave me

my life back !

>

>

> Hi all,

>

> I have spent the last month or so just reading your posts and

> haven't " jumped in " to post myself. Very busy these days. Any

how,

> I have a new derm that I am seeing (fired my 3rd rhumey) and he is

> very senstive and wonderful. He is my age, 31, maybe that is why

we

> get along so well. He just has an excellent bedside manner. That

as

> we know, is rare. He started me off on MTX and I have been on it

for

> about 4 months. Had to go off of it for a short time with a bad

> chest cold. Now, we are ready to try the Enbrel. I know it is

safer

> and more effective most likely, but I am needle phobic. I know I

> have read on here before others like myself who were afraid of

> needles and have begun giving themselves the injections, but I am

> terrified! Does anyone have any friendly advice as far as how to

> psych myself up for this? I don't go in to the docs for the first

> injection training until Feb and I think of this everyday with

> loathing. HELP!

>

> Tamara