starting enbrel

[Guest guest]

- I'm not sure if Enbrel is " officially " considered a DMARD, but I do

know that Celebrex and Prednisone only won't protect your joints. Also, the

prednisone should only be used short term until the inflammation is somewhat

under control.

I think you should be sure to talk to your rheumy about long term options.

FWIW,

---------------

Moderator 2 cents: Uh , long term use of low dose pred is used by some

Rheumys. My Rheumy and local doc both think only in a brief dose to get thru a

bad patch and believe in pain meds. There are a lot of Rheumys prescribing pred

long term. PatB

[Guest guest]

In a message dated 10/3/2001 5:32:20 PM Eastern Daylight Time,

TADEL630@... writes:

<< There are a lot of Rheumys prescribing pred long term. PatB >>

Wow Pat - that goes against all I've read about steriods, but then I don't

have a medical degree! (does it feel like to anyone else though that they are

working on their medical degree what with all the information we need to

process to deal with this disease?!?)

" Dr. "

[Guest guest]

No, I defiantly want off the prednisone. I had to fire my 1st rhuemy cause he

kept increasing my dose. My current rheumy doesn't believe in pain meds. I

had to get my vicodin from my GP who also happens to believe in the short term

use of prednisone for flare ups. I was on mtx before and it didn't work. I

just want to be sure that I am protecting my joints from any further damage.

The enbrel video said that it would not reverse any damage but it didn't say

anything about protecting against further damage.

>>> TADEL@... 10/03/01 03:18PM >>>

- I'm not sure if Enbrel is " officially " considered a DMARD, but I do

know that Celebrex and Prednisone only won't protect your joints. Also, the

prednisone should only be used short term until the inflammation is somewhat

under control.

I think you should be sure to talk to your rheumy about long term options.

FWIW,

---------------

Moderator 2 cents: Uh , long term use of low dose pred is used by some

Rheumys. My Rheumy and local doc both think only in a brief dose to get thru a

bad patch and believe in pain meds. There are a lot of Rheumys prescribing pred

long term. PatB

[Guest guest]

Hi Angera,

I was really interested in this email as I am currently waiting for

Enbrel since the end of December. Can I ask you how long you had to

wait to get on the Enbrel? I am really in need of this drug--I can

hardly walk lately and pain is enough to make you think of suicide

(that's not to say that I'm thinking of ending my own life, just that it

hurts enough to). Please tell me that you did not have to wait much

longer than what I have already been waiting for it. Good luck on this

drug. I really hope that today is a good day for you--a day with

managable pain. Thanks for answering my question about the wait for the

Enbrel. Stay warm.

caljersey@... wrote:

> I just got a call from Merck Medco saying that they will me mailing

> me

> my first month's dosage of Enbel on Tuesday.

>

> Those of you who are on Enbrel now, have you gained any weight, or do

> I

> have any other types of side effects to look for.

> I have been off of Prednisone for 6 months now and have lost 51 lbs.

> I

> do not want to put the weight back on again. I thought I read back a

> couple of months that there is a weight gain being on Enbrel.

>

> I will be going to my Rheumy next week to show me and my hubby how to

> give the shots and explain everthing to me, but I was just wanting to

> know from any of you on the list what this " wonder drug " has done for

> you, and are you pleased with being on it.

>

> Thanks,

> Angera

>

>

>

>

>

>

>

>

>

>

>

>

>

>

[Guest guest]

How long where you on the waiting list for Enbrel? I have been

waiting since mid-December!!!!

> I just got a call from Merck Medco saying that they will me mailing

me

> my first month's dosage of Enbel on Tuesday.

>

> Those of you who are on Enbrel now, have you gained any weight, or

do I

> have any other types of side effects to look for.

> I have been off of Prednisone for 6 months now and have lost 51

lbs. I

> do not want to put the weight back on again. I thought I read back

a

> couple of months that there is a weight gain being on Enbrel.

>

> I will be going to my Rheumy next week to show me and my hubby how

to

> give the shots and explain everthing to me, but I was just wanting

to

> know from any of you on the list what this " wonder drug " has done

for

> you, and are you pleased with being on it.

>

> Thanks,

> Angera

[Guest guest]

In a message dated 03/22/2002 4:36:06 AM Eastern Standard Time,

RnCSiam@... writes:

> Can I ask you how long you had to

> wait to get on the Enbrel?

- I only had to wait about a month or two - but I've been on it for

about six months and I think I started right before this last " shortage "

I hope you get it soon

[Guest guest]

I have been using Enbrel for a couple years now. I have experienced some

weight gain, but it was a good thing. I have always been fairly thin (most

people said that I was really really thin, but they are wrong). When I

started the Enbrel I was bruising pretty much every time I injected it, no

matter where I tried. I managed to put on a few pounds so that I now have

some extra around the middle. No more bruises. And most folks now just say

I'm really thin. :-)

There are a couple other side effects that I have noticed. My pain has been

reduced, I no longer take NSAIDS on a daily basis. I sleep better. My intake

of Methotrexate has been reduced. I want to spend more time on the lake

fishing. I'm trying to learn to cope with the side effects of Enbrel. I

figure that it will take a few more years.

I was worried about injecting myself and dull needles and stuff like that for

a while. Now I can stab myself quicker than a skid row junky, and smile the

whole time. Dull needles? Just push a little harder.

happy trails - Rob Glover

<<SNIPPED>>

Those of you who are on Enbrel now, have you gained any weight, or do I

have any other types of side effects to look for.

Thanks,

Angera

[Guest guest]

Angera & others,

I am now in my second month of Enbrel and have noticed no adverse

side effects. After my first injection I did feel a little light

headed but I am not sure if that was due to the medication or my

nerves at giving myself an injection. My guess is it was from my

nerves as it went away by the second injection. I also experienced

an extreme euphoria for the first couple of weeks. My rhuemy says

that this is not uncommon in people who respond quickly to the

Enbrel. I guess you are just so happy not to be in pain anymore.

I have recently lost 25 lbs. and so far I have not gained any of it

back after being on the Enbrel. In fact I am hoping to lose more now

that I can be more physically active.

As for the wait to get on Enbrel, I was on the list for 5 weeks

before getting my enrollment card and then it took me several more

weeks before I could actually get the Enbrel. Part of the delay was

due to miscommunication between my rhumy's office and the pharmacy

and I hope no one here ever has to wait because of something like

that. The good news is that if it works for you, it is worth the

wait. Two months ago I couldn't walk unassisted and my life felt

like a living nightmare. Now I feel like I can do anything.

Good luck with the Enbrel

Amy

[Guest guest]

,

I have a really good Rheumy and she filled out all the paperwork for my

insurance to approve me. I was approved by my insurance right away due

do all the different kinds of arthritis I have and have tried everything

from taking gold capsules right up to methotrexate. So I had a pretty

good history of trying to get this horrible disease under control.

It took about a month before I got a call from Merck Medco giving me an

ID # to use to order my medication. Our insurance went to prescription

by mail this year so it has taken about 2 weeks since I mailed in the

new prescription and them calling me to tell me it will be delivered on

Tuesday.

I could have started in January, but I had knee surgery and did not want

to take the chance of getting an infection until my knee healed. And to

be honest, I was a little scared (and still am) about trying it. So I

procrastinated a little until my husband couldn't stand seeing me in

such pain and said let's go for it.

I know how you feel about the pain. Sometimes I just can't take it

either and sit and cry. I have a very sympathetic husband that helps me

around the house and never complains. I know it is hard for him working

all day and coming home to make dinner and doing dishes.

I do have a question for you, if you don't mind me asking? Did your Dr.

get the approval from your insurance and did you get a packet from Merck

Medco to fill out to get your ID #? If not, then maybe ask your Rheumy

about it. Now I don't know how true this is, but Merck Medco told me

that once you get the ID# you are pushed to the top of the list and

guaranteed your meds monthly. I didn't believe it at first, but when

that package comes on Tuesday I will be a believer.

You try and feel better and keep warm too. I don't where you live but I

am fortunate, we live in Southern California and the weather has been

marvelous this winter. Right now it is 80 degrees. We have been

fortunate not having a wet winter this year. You hang in there and have

another talk with your Rheumy about that ID#.

Angera

[Guest guest]

Amy,

I want to thank you for your post on Enbrel. This has eased my mind

quite a bit. I hope it works as well for me as it does for you. Maybe

I will be able to retire my cane and be able to take walks with my

husband again. I hope that I will not have a weight gain, too. I

worked so hard getting the 51 lbs. off.

Thank you again.

Angera

[Guest guest]

Rob,

I love the side effects you mentioned, especially the reduction in pain

and sleeping better. It would be so nice to go to bed and not have to

take a sleeping pill every night (since 1994). I have given up on

NSAIDS and have been taking Darvocet because of such bad pain. I want

to get off of Darvocet but nothing else helps anymore.

Thanks for your input.

Angera

[Guest guest]

Hi Angera...I have been on Enbrel since last June. I haven't gained any weight.

I may have lost 5 lbs. Enbrel wires me up like a bit of cheap speed or bad

coffee. I take Klonopin to take the edge off. I think the weigh gain that some

people get is because after being in so much pain for so long, and taking the

drugs associated with the pain, they get their appetite back when the Enbrel

gives them relief. I know it has been a miracle for me. I no longer take any

pain medications. The minor side effect I have is a bargain for the

effectiveness and probably beneficial in a less high strung person. I only

regret not starting it sooner. I hope you do as well. Rgds Ronnie

[ ] Starting Enbrel

I just got a call from Merck Medco saying that they will me mailing me

my first month's dosage of Enbel on Tuesday.

Those of you who are on Enbrel now, have you gained any weight, or do I

have any other types of side effects to look for.

I have been off of Prednisone for 6 months now and have lost 51 lbs. I

do not want to put the weight back on again. I thought I read back a

couple of months that there is a weight gain being on Enbrel.

I will be going to my Rheumy next week to show me and my hubby how to

give the shots and explain everthing to me, but I was just wanting to

know from any of you on the list what this " wonder drug " has done for

you, and are you pleased with being on it.

Thanks,

Angera

[Guest guest]

" I'm trying to learn to cope with the side effects of Enbrel. I

figure that it will take a few more years. "

Rob, please elaborate on the side effects you have experienced on Enbrel. Am

waiting on having a MRI on April 1 which is part of neurological work-up to

determine if I have latent (Spelling? anyway, no symptoms--just a 10 year

old MRI that noted " lesions " in a certain part of brain) MS--if found will

not be able to take Enbrel--and I want to learn all about Enbrel's side

effects before April 5 when hopefully I, too, will be prescribed Enbrel.

Thanks-- in Virginia

---- Original Message -----

From: <ama3655@...>

< >

Sent: Friday, March 22, 2002 4:43 PM

Subject: [ ] Re: Starting Enbrel

>

> I have been using Enbrel for a couple years now. I have experienced some

> weight gain, but it was a good thing. I have always been fairly thin (most

> people said that I was really really thin, but they are wrong). When I

> started the Enbrel I was bruising pretty much every time I injected it, no

> matter where I tried. I managed to put on a few pounds so that I now have

> some extra around the middle. No more bruises. And most folks now just say

> I'm really thin. :-)

>

> There are a couple other side effects that I have noticed. My pain has

been

> reduced, I no longer take NSAIDS on a daily basis. I sleep better. My

intake

> of Methotrexate has been reduced. I want to spend more time on the lake

> fishing. I'm trying to learn to cope with the side effects of Enbrel. I

> figure that it will take a few more years.

>

> I was worried about injecting myself and dull needles and stuff like that

for

> a while. Now I can stab myself quicker than a skid row junky, and smile

the

> whole time. Dull needles? Just push a little harder.

>

> happy trails - Rob Glover

>

>

> <<SNIPPED>>

> Those of you who are on Enbrel now, have you gained any weight, or do I

> have any other types of side effects to look for.

>

> Thanks,

> Angera

>

>

>

>

[Guest guest]

Hi Angera,

Thank you for answering my question about how long it took you to

get the Enbrel. My doctor and I took care of the paperwork and faxed it

to them in a day's time from him writing me the script and my insurance

approved it the same day and again faxed the info. ( I too have gone

through every drug for my PA, starting with 24 coated asprins a day to

gold, to NSADS, to methatrexate and I just finished on Arava which was

the last to quit on me. I am currently living off of steroids which he

just doubled the amount of since I am in so much pain and can barely

even walk these days.) It will be 4 months next month since I have been

waiting to get the Enbrel. I have heard from the Enbrel maker saying

that I am on their waiting list and when it becomes available, I'll get

it. I saw my rheumy the other day and he said that 50 people were

waiting in the rheumology department at my clinic for the drug to be

sent from the company that makes it. He said that there is a severe

shortage again. You must have gotten approved for the Enbrel before the

this last shortage started again. Thank you for your anwers. Enjoy the

warm weather you are having in CA. I live in WI and it has been colder

and wetter this month than the whole winter has been. Hope you get the

results you need and want from the Enbrel. Thanks again for answering

me.

caljersey@... wrote:

> ,

>

> I have a really good Rheumy and she filled out all the paperwork for

> my

> insurance to approve me. I was approved by my insurance right away

> due

> do all the different kinds of arthritis I have and have tried

> everything

> from taking gold capsules right up to methotrexate. So I had a pretty

>

> good history of trying to get this horrible disease under control.

>

> It took about a month before I got a call from Merck Medco giving me

> an

> ID # to use to order my medication. Our insurance went to

> prescription

> by mail this year so it has taken about 2 weeks since I mailed in the

> new prescription and them calling me to tell me it will be delivered

> on

> Tuesday.

>

> I could have started in January, but I had knee surgery and did not

> want

> to take the chance of getting an infection until my knee healed. And

> to

> be honest, I was a little scared (and still am) about trying it. So I

>

> procrastinated a little until my husband couldn't stand seeing me in

> such pain and said let's go for it.

>

> I know how you feel about the pain. Sometimes I just can't take it

> either and sit and cry. I have a very sympathetic husband that helps

> me

> around the house and never complains. I know it is hard for him

> working

> all day and coming home to make dinner and doing dishes.

>

> I do have a question for you, if you don't mind me asking? Did your

> Dr.

> get the approval from your insurance and did you get a packet from

> Merck

> Medco to fill out to get your ID #? If not, then maybe ask your

> Rheumy

> about it. Now I don't know how true this is, but Merck Medco told me

> that once you get the ID# you are pushed to the top of the list and

> guaranteed your meds monthly. I didn't believe it at first, but when

> that package comes on Tuesday I will be a believer.

>

> You try and feel better and keep warm too. I don't where you live but

> I

> am fortunate, we live in Southern California and the weather has been

> marvelous this winter. Right now it is 80 degrees. We have been

> fortunate not having a wet winter this year. You hang in there and

> have

> another talk with your Rheumy about that ID#.

>

> Angera

>

>

>

>

>

>

>

>

>

>

>

>

>

>

[Guest guest]

In a message dated 3/22/2002 6:57:20 PM Eastern Standard Time,

caljersey@... writes:

> Now I don't know how true this is, but Merck Medco told me

> that once you get the ID# you are pushed to the top of the list and

> guaranteed your meds monthly. I didn't believe it at first, but when

> that package comes on Tuesday I will be a believer.

>

>

Hi Angera - I do know that I got the enbrel fairly quickly after I had an ID

number. I can relate to what you said about sitting and crying over the

pain. I am still able to work a full time job, but some days I come home and

cry because I'm so tired and so sore. My husband helps a lot and it sounds

like yours does too. I don't really have a good solution to that one, but

venting here often helps with the frustration of the pain. While my husband

is wonderfully supportive and will often bring me dinner in bed or help me to

bed and then bring me tea, he can't know the pain that we feel. Only someone

with PA can understand it.

Anyway, hope you are feeling ok today and I wish you all the best with the

enbrel. It has helped me a bit, but for some, it's been nothing short of

miraculous!

So hope for the miracle

[Guest guest]

Hey ,

Where do you live in VA?

I am in Lynchburg...

betty

[Guest guest]

- I listed the side effects that I have noted, those being reduced

pain, better sleep, etc. I figure it might take another hundred years or so

to learn how to cope.

I'm still hangin in there - Rob Glover

>

> " I'm trying to learn to cope with the side effects of Enbrel. I

> figure that it will take a few more years. "

>

> Rob, please elaborate on the side effects you have experienced on Enbrel. Am

> waiting on having a MRI on April 1 which is part of neurological work-up to

> determine if I have latent (Spelling? anyway, no symptoms--just a 10 year

> old MRI that noted " lesions " in a certain part of brain) MS--if found will

> not be able to take Enbrel--and I want to learn all about Enbrel's side

> effects before April 5 when hopefully I, too, will be prescribed Enbrel.

> Thanks-- in Virginia

>

[Guest guest]

Live in Fairfax<virginia here.My P has flared so I guess it is back to light

treatments. One day it is freezing and the next your sweating and my P is

going nuts.I stop taking birth control after nine years.I wonder if that

would make my P flare.When I was pregent my P was nothing.i feel like I have

gotten use to the pain.I feel like if I am always going to be in pain then I

want to take as least amount of pills.I am hoping that with excerise and a

better diet that will help and then add in a little bit of pills.

[Guest guest]

Ronnie,

Thank you for the information. One question though. When you get that

" wired " feeling does it prevent you from sleeping, or does it wear off

by the evening.

Listening to everyone's comments are making me feel less worried about

side effects and can't wait to get started and have this pain go away.

Have a great day,

Angera

[Guest guest]

,

Did you try calling Merck Medco directly? The person I talked to dealt

only with Enbrel. I know this because I asked her about another

prescription and she told me she just handles the Enbrel questions and

problems. I started with all the paper work in November or December and

was approved, but like I said I didn't send in the prescription until

this month due to knee surgery in January and the worry of infection. I

can't figure out how they pick and choose who gets it. I think it

should be first come first get. I didn't think I would get it this fast

either.

I really don't know why I got it right away. I was also told about the

shortage and I thought when I sent my prescription in I would be told of

a long wait. What I was told by the Merck Medco person was that they

are building a new plant and are running way behind schedule in

finishing it and once the plant is up and running, there will be no

problems with getting the drug.

My heart goes out to you because we all know how much pain this disease

causes, and I will keep my fingers crossed (when I can do that, lol) and

pray that you get yours soon.

Heres hoping you have a pain free day.

Angera

-------------

Moderator Note: " first com first get " can lead to problems. The company wants to

make sure that the patients on Enbrel keep getting a regular supply. PatB

[Guest guest]

,

Thank you for answering and the understanding.

I had to retire from a job I loved because I couldn't make it to Friday.

I just about made it to Thursday. I was lucky and got a Disability

Retirement and received my full retirement benefits. It was a blessing.

I worked for a School District for almost 20 years as an Office Manager

and just hated leaving it. But it was for the best. My body was just

worn out from the daily work routine. My husband told me it was not

worth my health for another paycheck. I knew he was right and finally

gave in. Now I enjoy being a housewife again. Believe me, I understand

what you are going through working and coming home and just wanting to

lay down and make the pain go away. I am so happy for you that you too

have an understanding husband. It really helps, because like you said,

no one knows the pain like all of us do on this list. This list is a

blessing. I have been on it since it first started. I have been

lurking for a long time because my father, sister-n-law, and

father-n-law had passed away in a 5 month period and I was in no shape

mentally to do anything. I just started writing on the list again and my

grieving is starting to lessen. I know this pain, too, will pass.

I want to thank all of you who have answered my questions on Enbrel.

Listening to all of you has really made me feel so much better and less

anxious.

This list has a wonderful group of people.

Angera

[Guest guest]

I actually inject at night. usually just an hour or two before bed. The side

effect is cumulative so I don't get a " rush " after the injection. Most people

simply experience a mild euphoria over time after a few weeks. I'm sure my

problem is more from being a hyper Type A artistic personality to begin with. I

have a hard time tolerating caffeine. Really, Enbrel is probably safer than MTX

with less side effects. The injections are nothing. I would definitely give it

a chance. Ronnie E.

Re: [ ] Starting Enbrel

Ronnie,

Thank you for the information. One question though. When you get that

" wired " feeling does it prevent you from sleeping, or does it wear off

by the evening.

Listening to everyone's comments are making me feel less worried about

side effects and can't wait to get started and have this pain go away.

Have a great day,

Angera

[Guest guest]

I'm with you on this one. I wish there was one thing we all could stop

doing, or start doing, that would keep our arthritis from flaring. But it

sure looks like everyone is a little bit different, even though we all

suffer from the same disease. I have been on pain management therapy only

for several years now, taking only a mild antihistimine as a muscle relaxer,

two Aleve (naproxen sodium) a day, and 1,000-1,500 mg. of glucosamine

chondroitin a day. That seems to help. Of course, with all the years of

taking NSAIDs, I now have problems with acid-producing foods, so I am also

taking Zantac daily. I haven't had a really bad flare for some time, but I

know when I do that I will be able to make better choices about medication

because of what I'm learning from the other folks in this group. Thank you

all. -- Jan O', Alaska

Re: [ ] Re: Starting Enbrel

> Live in Fairfax<virginia here.My P has flared so I guess it is back to

light

> treatments. One day it is freezing and the next your sweating and my P is

> going nuts.I stop taking birth control after nine years.I wonder if that

> would make my P flare.When I was pregent my P was nothing.i feel like I

have

> gotten use to the pain.I feel like if I am always going to be in pain then

I

> want to take as least amount of pills.I am hoping that with excerise and a

> better diet that will help and then add in a little bit of pills.

>

>

>

[Guest guest]

Betty, sorry for the lateness of my reply-my computer has been down for a

week due to our moving to York County (Yorktown) from Newport News. Also, I

was diagnosed with bacterial (mycoplasma--sp?) pneumonia on 3/19--caused by

a bacteria everyone else's body resists and throws off--due to my immune

system being suppressed, so actually away from computer two weeks. We

moved to provide me a bedroom downstairs--it is making a very positive

difference for me. Also, we could meet in Richmond--my sister lives there.

I do not know anyone personally who has PA and would love to get together or

talk by phone! Please e-mail me at hatchettd@... with your phone

number--I have a cell phone and could call with no charge anywhere in

Virginia. Thanks so much for your contact--anyone else in Virginia who

would like to talk, etc. please e-mail me direct with your phone number and,

of course, at the same time I will share mine, too-- in Virginia

Re: [ ] Re: Starting Enbrel

> Hey ,

>

> Where do you live in VA?

>

> I am in Lynchburg...

>

> betty

>

>

>

[Guest guest]

Dear Angera...I am truly sorry to hear you are having such a tuff time. I and a

couple of other people I talked to on this board and at my RD's office did have

immediate relief with the first dose. I was nearly normal in 3 weeks. I have

been told that I was very responsive though. Usually it takes about 3 months to

really kick in. I don't want to bum you out but I have also talked to people

that Enbrel didn't work at all for. In my opinion it comes down to this disease

is not understood. It is more of a collection of symptoms. There is no smoking

gun. No definite cause identified. I believe the reason for my positive

response was that although I had a very aggressive case of PA, I only have had

major symptoms for a couple of years. It seems the earlier PA is identified the

better your chance of hitting it with a therapy that works for you. Some people

do very well on just MTX or Sulfasalasine. Some people swear by Minocine. I'm

sure if I had started Enbrel earlier that I wouldn't have joint damage. It

seems to be my drug.

I think your RD is right. Give it a chance. He may want you to change to 3

injections a week. If Enbrel doesn't work for you try Remicaid or one of the

newer drugs coming on line. Just don't give up. There are options. Also if

you are taking that much darvocet you might want to try something else. They

didn't do much for me when I needed them. Vicodine or Codine Tylenol worked

better for me. Sometimes it helps just to rotate pain meds. Also an

antianxiety drug like Zanax or Klonopin may be helpful in coping. Talk to your

doctor. Again, you have my heartfelt sympathy for your ordeal. I've been there.

RGDS Ronnie E.

[ ] Starting Enbrel

Ronnie E.,

I am a little behind in reading my posts, and when I came to yours I had

to ask you a couple of questions, if you don't mind.

I started my Enbrel treatment and have had 3 shots already. I feel no

different, may be even worse. I sat up in bed last night at midnight

and cried my eyes out, because I had pain where I never had pain before.

I am now taking 2 Darvocets every 6 hours instead of 1.

You said you had immediate improvement when you started the drug. Are

you talking about the first dose, first couple of weeks, month. . . . .?

I even called my Rheumy and she said give it time. Like you said, it is

suppose to be the " miracle drug " . I haven't seen the miracle yet.

Am I asking or should I say expecting too much too soon? I am just

praying that I am not in the percentage of people where it does not

work.

Hoping to hear from you or anyone else who is on Enbrel that can give me

some type of timeline as to when to expect some relief. I know everyone

is different, but it seems from reading the posts, people sing such high

praises for the fast relief.

Thanks,

Angera