Enbrel question

[Guest guest]

Have you talked to you Rheumy about it??? I havn't any side effects at all.

Your reaction sounds more like what I suffered when I was taking MTX orally.

Maybe you cannot tolerate the Enbrel or maybe it is reacting with some other

medication you're taking. When I got my prescription, they gave me only a

1-month supply, just in case I had a reaction to it and couldn't tolerate it.

Call you rheum ASAP.

Carol in Vancouver, Washington

In a message dated 3/1/03 11:26:50 AM Pacific Standard Time, tamvas1@...

writes:

> I have taken 2 shots of enbrel and after both shots have become sick

> to my stomach and absolutely exhausted. Has this happend to anyone

> else? Did it go away? It is lasting for days and about the time it

> does go away it's time for another shot!

> Tammy

>

[Guest guest]

I've taken already 3 shots and did not notice any reaction at all.

You should call your doctor and ask him.

> I have taken 2 shots of enbrel and after both shots have become

sick

> to my stomach and absolutely exhausted. Has this happend to anyone

> else? Did it go away? It is lasting for days and about the time

it

> does go away it's time for another shot!

> Tammy

[Guest guest]

In a message dated 3/1/2003 2:26:35 PM Eastern Standard Time,

tamvas1@... writes:

> have taken 2 shots of enbrel and after both shots have become sick

> to my stomach and absolutely exhausted. Has this happend to anyone

> else? Did it go away? It is lasting for days and about the time it

> does go away it's time for another shot!

> Tammy

>

Now I am scared hearing this. I am starting tomorrow. I usually get every

side effect available from meds. I hope this is not the case with Embrel.

Janet

[Guest guest]

Janet, All you can do is try it and see what happens. You may have absolutely

no problems. I haven't any side effects at all (cross my fingers). Hopefully,

it will stay that way.

Carol in Vancouver, Washington

In a message dated 3/2/03 5:44:26 PM Pacific Standard Time, fam24@...

writes:

> Now I am scared hearing this. I am starting tomorrow. I usually get every

>

> side effect available from meds. I hope this is not the case with Embrel.

> Janet

>

[Guest guest]

In a message dated 3/4/2003 5:29:44 AM Eastern Standard Time,

pookiegut@... writes:

> My Dr. REFUSED to start me on Enbrel when I had a slight cold. I think he

> might be a little overly cautious, but it still made me feel safe. I think

> you will be fine. If the cold starts to get WORSE, make sure you call

> him/her!

>

>

I started the Embrel yesterday and today I have ended up with a painful sinus

infection. I went to my PCP and he started me on Cipro. I know one shot

could not have caused it because I have been sick since sunday after flying

on saturday. Wouldn't you know it. I get sick the first time I have to take

the Embrel and I haven't been sick in months. I also would like to know

if anyone has experience flushing of the face from the Embrel. Since the

injection yesterday my face keeps turning red, getting hot and flushing. I

look up all the side effects and one of them in rare cases is vasodilation

and flushing.

Janet

[Guest guest]

In a message dated 3/4/2003 5:42:07 AM Eastern Standard Time,

tboelhauf@... writes:

> . Do you have P

> and PA?

>

> Terri in Texas

Thanks for you answer Terri. Yes, I have had p on and off for about 20

years. The joint pain started an little later but has been the worse the

last few months.

Janet

[Guest guest]

Janet, I haven't had anything like that. Have you called your rheumy yet?

Carol in Vancouver, Washington

In a message dated 3/5/03 12:51:46 AM Pacific Standard Time, fam24@...

writes:

> Since the

> injection yesterday my face keeps turning red, getting hot and flushing. I

>

> look up all the side effects and one of them in rare cases is vasodilation

>

> and flushing.

>

[Guest guest]

Janet,

Funny you should mention this " flushing problem " . I thought it was a

symptom of menopause. I have been on Enbrel since January, but I

remember having the flushing for a long time before that. The

whole " red face " thing is not much fun and when you get it, you can't

make it go away.. I would say to check with your doctor, it could

be a sign of something else.

On Monday my doctor took me off the Enbrel temporarily because of a

UTI and said I could continue when the infection cleared up. I have a

7 day course of Cipro, then wait for another week for the test to

determine if the infection has cleared before I can start my shots

again. I missed my shot on Tuesday, and do I ever feel the pain! I

didn't know that when you stop the Enbrel the symptoms return (fast).

I also didn't know that you could stop the medication in case of an

infection, then return to it after the infection has cleared. I

haven't noticed any flushing lately, but now that I am aware of this

I will keep and eye on it. If I here of something I will let you know.

Dori

> In a message dated 3/4/2003 5:29:44 AM Eastern Standard Time,

> pookiegut@a... writes:

>

> > My Dr. REFUSED to start me on Enbrel when I had a slight cold. I

think he

> > might be a little overly cautious, but it still made me feel

safe. I think

> > you will be fine. If the cold starts to get WORSE, make sure you

call

> > him/her!

> >

> >

>

> I started the Embrel yesterday and today I have ended up with a

painful sinus

> infection. I went to my PCP and he started me on Cipro. I know

one shot

> could not have caused it because I have been sick since sunday

after flying

> on saturday. Wouldn't you know it. I get sick the first time I

have to take

> the Embrel and I haven't been sick in months. I also would like

to know

> if anyone has experience flushing of the face from the Embrel.

Since the

> injection yesterday my face keeps turning red, getting hot and

flushing. I

> look up all the side effects and one of them in rare cases is

vasodilation

> and flushing.

> Janet

>

>

>

[Guest guest]

I had to skip the last 2 doses of Enbrel cause I've been sick.

(Boo hoo!) Anyway, my doc's aide/nurse said that since Enbrel

lowers your immune system activity, it takes a lot longer to fight

off colds, which is why they recommend to go off it while sick. I

suppose it also makes us more susceptable to infection

(according to the drug side effect literature anyway) so they want

us to be careful when our defenses are busy fighting a cold.

As far as the red face 'flushing' goes, my good friend who is also

my acupuncturist and I discuss this often because it happens

with me (from various foods, perhaps from Enbrel, for all sorts of

reasons). Now, we're talking about oriental medicine, so the

whole symptoms/diagnosis/treatment process is an entirely

different language (literally and figuratively). That said, red

" flushing " like you've described is associated with 'heat'. You

don't have to feel hot or warm even to have a 'heat' reaction in

your body.

In general, if you feel flushing, a spoonful of honey can work

wonders (it's cooling 'yin' to the heat 'yang'). Just eating or

drinking something cold won't necessarily work, because it has

to do with more than temperature, 'heat' and 'cold' are

generalizations. For example, effects of the dairy in ice cream

may override the effects of it being cold. I use honey, or I eat

frozen ices for those random flushed moments, the kind that

comes in small portions in a 'tube' of plastic, basically plain cold

sugar water.

[Guest guest]

Thank Janet,

I realize maybe I haven't had a reaction with the face flushing because I

already take Benadryl and Sudafed for my allergies, and maybe that is

counteracting any of sort of side effect like what you have experienced. I

wish you were having a better result sooner for the joint pain.

I have to say though that for the last 2 or 3 days I have been kind of stiff

in my hands, but they don't hurt. A lot of it has to do with the fact that I

have been on the internet a lot in the last few days (too much game playing

at night) and the weather has really been rainy and cold. My body has been

having to readjust because I not as hot anymore like I was, so I'm actually

wearing sweaters to work, and my hands and fingers are getting cold. I have

my therapeutic gloves that I wear with the wrists straps, and those keep the

palms and the backs of my hands fairly warm, but my fingers are uncovered,

and they are pretty cold. Like I should be complaining!!!! At least my body

quit hurting and swelling.

Hang in there Janet. Hopefully, you will get some relief soon!

Carol in Vancouver, Washington

In a message dated 3/7/03 12:04:08 AM Pacific Standard Time, fam24@...

writes:

> I decided to take Clarinex and it seems to have

> helped quite a bit. I guess I am allergic to something in the Embrel. I

> hope it doesn't get worse and I have to stop. So far there is no relief in

>

> my joints but I guess it takes a few weeks. I'm glad you are doing so

> well,

> Carol.

>

[Guest guest]

, Enbrel hasn't helped my psoriasis either. The methotrexate is keeping

it in check at a level and that is manageble, the Enbrel I think actually

made it kind of flare a little. I saw my rheumy today, and he said that he

has found that most patients do better with a combination of Enbrel and MTX

at the same time, so I guess I won't be getting off MTX anytime to soon if

ever. Fortunately, my blood work has been just fine since December, and I my

pain is 95% or better relieved with the Enbrel. Yeh!!!!

Carol in Vancouver, Washington

In a message dated 3/10/03 10:16:03 AM Pacific Standard Time,

lindaanello@... writes:

> I have been on enbrel for 2 months.. it seems to help 75% of my

> joint pain....BUT my skin is getting worse....since enbrel I now

> have double the amount of lesions ...and for the first time it is on

> my chest.... has anyone on enbrel experienced worsening of their

> psorasis????? I thought it was suppose to help my skin...can

> someone help with this question ,,PLEASE..

>

[Guest guest]

You probably have had methotrexate (Rheumatrex)before Enbrel, but for

what it's worth, the most effective drug I've ever taken for the

psoriasis component of PA is mtx. Also potentially quite effective:

the psoralen & UVA (known as " PUVA " ) treatment, favored by some

dermatologists. Certainly, temovate is usually effective (also Halog

or Lidex), for a topical. Probably all old news to you, but you never

know.

Best wishes!

D.

> I have been on enbrel for 2 months.. it seems to help 75% of my

> joint pain....BUT my skin is getting worse....since enbrel I now

> have double the amount of lesions ...and for the first time it is

on

> my chest.... has anyone on enbrel experienced worsening of their

> psorasis????? I thought it was suppose to help my skin...can

> someone help with this question ,,PLEASE..

>

> -------------

> moderator note: The doctors seem to think Enbrel helps with the

psoriasis but like you my P is worse now than before. We keep saying

we are all different and I have heard that it helps and that it

doesn't. I would hate to stop the Enbrel to find out that it was

helping and the P could be much worse. The few Times I stopped for a

couple weeks due to infections etc there was no change in the

psoriasis. PatB

[Guest guest]

Hi

My husband is currently looking for altenatives to MTX ( we are

trying for a family) and has had PUVA in the past (as they control

how much exposure you have in a lifetime he can't have it all the

time) can you just explain what psoralen is please? He can't recall

taking any medication with the light treatment.

Thanks, Nicci

> > I have been on enbrel for 2 months.. it seems to help 75% of my

> > joint pain....BUT my skin is getting worse....since enbrel I now

> > have double the amount of lesions ...and for the first time it is

> on

> > my chest.... has anyone on enbrel experienced worsening of their

> > psorasis????? I thought it was suppose to help my skin...can

> > someone help with this question ,,PLEASE..

> >

> > -------------

> > moderator note: The doctors seem to think Enbrel helps with the

> psoriasis but like you my P is worse now than before. We keep

saying

> we are all different and I have heard that it helps and that it

> doesn't. I would hate to stop the Enbrel to find out that it was

> helping and the P could be much worse. The few Times I stopped for

a

> couple weeks due to infections etc there was no change in the

> psoriasis. PatB

[Guest guest]

Hi Nicci, (niccimc@...)

Methotrexate: I understand reservarions about MTX, which was referred to

(when I was in psychopharacology grad school) as a " metabolic monkeywrench " .

In fear and trepidation, I started taking it about 1980, when other options

(Immuran, predisone, PUVA treamant--which you note has a lifetime body

burden, and to which burden you must add all your other time in the sun, and

I've had Melanoma...) I went through the required liver biopsies MTX

patients had to undergo back then. Over the last 15 to 19 years, and with the

advent of Rheumatrex and fairly widespread use in the RA population, initial

fears about MTX toxicity declined significantly. (Early on, the

PDR--Physician's Desk Reference, for the newbies--has MTX inside the dreaded

" Black Box Warning " over the productionformation. It's gone now.

(Parenthetically, it has always worked 80-95% effective or me on the P, maybe

33% on the A.)

I digress: most of the alternatives, while their modes of action and their

chemistry is different, are pretty potent (plaquenil, cyclosprin, cytoxan,

etc, ) and have their own drawbacks. Of these and MTX, the latter can be

shown to be perhaps the most effective at reducing the likelihood of

conception on the male's part, given its effects on viable sperm production

(one doc refered to it as a " risky choiceto use, as a male contraceptive " ).

For your husband, your specialist should/could recommend the heavy hitter

with the least negative potential, contraception-wise.

Psoralen: Used with PUVA treatments (Psoralen & UVA light = PUVA. The drug,

gereally given by dermatologists (who rheumatologists say are often scared of

prescribing the potent methotrexate0 give it to be tasken shortly before UVA

(lights) to enhance and accelerate the positive effects of the light. It

significantly sensitizes the skin and allows it to " take " the light much more

efficiently than is the case without psoralen. It was 20 years ago when I

went through PUVA treatment in the hospital; I don't know if they still use

the drug first. After the lights, they would have me apply Halong or Lidex

all over, and then get into an occlusive plastic suit for 4-6 hours, 2X a

day. Except fot the demands on one's time, and the messiness of the whole

deal, there should be far less, if any, direct effect on the male's

reproductive experience. It is, however, a " yucky " , anti-romantic way to try

to have a family.

Please let me know if I understood your inquiry, and whether I might be of

further advice. I had almost completely recovered from the first onset of PA

when I had my daughter, when I was 19. No children since, and not likely,

after 20+ years on MTX.

[Guest guest]

In a message dated 3/12/2003 1:08:27 PM Eastern Standard Time,

CND110370@... writes:

> I have also had some very bad

> swelling, especially in my hands and feet...seems to be fluid retention and

>

> not sausage digits. Has anyone else run across this? I am hoping this is

> just something that will pass and not tied in.

christina,

Unfortunately, you are going though much stress in your life and that could

be what is causing all your problems. Maybe it has nothing to do with the

Enbrel. I forgot how long you ar taking it for

[Guest guest]

I had kind of expected the flare of psoriasis because others have said the

same thing, and my Enbrel trainer said that also. I have had 8 injections so

far, and the psoriasis hasn't budged a bit. I haven't had any flare in pain.

I have been relatively pain free every since, but I still have tendinitis in

my shoulders, and that is pretty much unchanged. My rheumy said it is

probably a chronic condition, which I already figured out, and related to my

transcription job. I am still on the methotrexate and will probably remain on

it for a long time, as apparently they are finding that Enbrel works better

in combination with methotrexate. Oh well, I'll live.

Carol in Vancouver, Washington

In a message dated 3/11/03 7:03:56 PM Pacific Standard Time, fam24@...

writes:

> I'm surprised to hear about the flare. It was actually my derm who first

> suggested the Embrel to clear up the P and then I told him about all my

> joint

> pain. I took my 3rd injection yesterday and had a good day so I thought

> the

> Embrel was starting to work. Today my knees are quite painful again. Is

> is

> possible that the Embrel works on the day you inject it and wears off the

> next to or is it a coincidence?

> Janet

>

[Guest guest]

Thanks for the reply - yes you understood what I meant! Thanks for so

much info - Ed has had enough PUVA at the moment though no one has

ever said that the amount of time he has spent in the Tropics should

be taken into consideration when deciding how much exposure he can

have! He is half Finnish, very fair and spends as much time as

possible in the sun (causing blisters) in an attempt to clear his

skin. At present though his major worry is the A side of things as we

are concerned that he is doing long term damage to his hands.

It is helpful to hear about MTX not being as severe as one thinks - I

understand the doses concerned are very small in comparison to when

it is prescribed as chemotherapy.

Thanks for the support, Nicci

> Hi Nicci, (niccimc@y...)

>

> Methotrexate: I understand reservarions about MTX, which was

referred to

> (when I was in psychopharacology grad school) as a " metabolic

monkeywrench " .

> In fear and trepidation, I started taking it about 1980, when other

options

> (Immuran, predisone, PUVA treamant--which you note has a lifetime

body

> burden, and to which burden you must add all your other time in the

sun, and

> I've had Melanoma...) I went through the required liver biopsies

MTX

> patients had to undergo back then. Over the last 15 to 19 years,

and with the

> advent of Rheumatrex and fairly widespread use in the RA

population, initial

> fears about MTX toxicity declined significantly. (Early on, the

> PDR--Physician's Desk Reference, for the newbies--has MTX inside

the dreaded

> " Black Box Warning " over the productionformation. It's gone now.

> (Parenthetically, it has always worked 80-95% effective or me on

the P, maybe

> 33% on the A.)

>

> I digress: most of the alternatives, while their modes of action

and their

> chemistry is different, are pretty potent (plaquenil, cyclosprin,

cytoxan,

> etc, ) and have their own drawbacks. Of these and MTX, the latter

can be

> shown to be perhaps the most effective at reducing the likelihood

of

> conception on the male's part, given its effects on viable sperm

production

> (one doc refered to it as a " risky choiceto use, as a male

contraceptive " ).

> For your husband, your specialist should/could recommend the heavy

hitter

> with the least negative potential, contraception-wise.

>

> Psoralen: Used with PUVA treatments (Psoralen & UVA light = PUVA.

The drug,

> gereally given by dermatologists (who rheumatologists say are often

scared of

> prescribing the potent methotrexate0 give it to be tasken shortly

before UVA

> (lights) to enhance and accelerate the positive effects of the

light. It

> significantly sensitizes the skin and allows it to " take " the light

much more

> efficiently than is the case without psoralen. It was 20 years ago

when I

> went through PUVA treatment in the hospital; I don't know if they

still use

> the drug first. After the lights, they would have me apply Halong

or Lidex

> all over, and then get into an occlusive plastic suit for 4-6

hours, 2X a

> day. Except fot the demands on one's time, and the messiness of the

whole

> deal, there should be far less, if any, direct effect on the male's

> reproductive experience. It is, however, a " yucky " , anti-romantic

way to try

> to have a family.

>

> Please let me know if I understood your inquiry, and whether I

might be of

> further advice. I had almost completely recovered from the first

onset of PA

> when I had my daughter, when I was 19. No children since, and not

likely,

> after 20+ years on MTX.

[Guest guest]

Unfortunately, I had to go to a wake tonight and one the the relatives of

the deceased has PA. She was on mtx and then Enbrel was added. Now she is only

on Enbrel. She said when ever she got sick she stopped the Enbrel and went

to her infectious disease specialist. Does anyone else go to a doctor like

that? I have a nasty URI with fever and I started taking Cipro two days ago.

So far it is not helping. I don't know if I should call my rheumy or go to a

doctor like she goes to. My primary is treating me now. Any suggestions?

Janet

[Guest guest]

-- My primary is treating me now. Any suggestions?

> Janet

> Janet-start with Primary but if it gets worse or doesn't get better

ask for refferal to infectious Doc? Just a thought

Marti

>

>

[Guest guest]

Hi everyone,

I was wondering if anyone has the same dosage a week of Enbrel that I

have-50mg. twice a week? My Pharm. thought it was alittle much for

me to start out-my Derm. wrote the prescription for it.

Thanks and God Bless, Sue in Michigan.

[Guest guest]

In a message dated 11/1/2004 3:52:18 PM Eastern Standard Time,

susieesue@... writes:

Hi everyone,

I was wondering if anyone has the same dosage a week of Enbrel that I

have-50mg. twice a week? My Pharm. thought it was alittle much for

me to start out-my Derm. wrote the prescription for it.

Hi Sue,

I tried the Enbrel 25mg twice a week last year and it took away the P but

not the joint pain. I just started the 50mg dose last week and I am taking

the 3rd shot tonight. Maybe your derm wants try this and skip the lower dose.

Janet

[Guest guest]

hi,

when i started back on enbrel in may, my dermie started me on

2 doses 2x a week. he said the enbrel rep had just recently told

him that for tough psoriasis the double dose was more effective for

the first 3 months. it did work, and some has come back since

going back down to regular dose.

also, i got a letter from enbrel today saying that soon the doses

will come ready to shoot in 50mg vials. no more mixing,etc.

don't know about the smaller doses, have to call them.

i am glad they are coming already mixed and together.

good luck with it.

susan in ohio

[Guest guest]

Hi Sue,

I too am taking 50mg of Enbrel twice a week. My doctor will probably lower the

dose by the first of the year. But as of now I'm right there with you. Do you

have P and PA? I have both - pretty bad, too. I had been taking the Enbrel

through a drug study for the past 2 years in a smaller dose. At the end of Aug.

the study abruptly ended and I was beside myself thinking I would not be able to

have the Enbrel because of the cost and not sure what the insurance company

(BCBS) would pay, if anything. Within 7 days of contacting Amgen, they had

contacted BCBS and I had been approved. I was told by the pharmacist that my 16

shots per month cost $2800.00. I will forever give thanks that my co-pay is a

mere $25.

Hope the Enbrel works well for you. Hang in there.

Terri B.

susieesue <susieesue@...> wrote:

Hi everyone,

I was wondering if anyone has the same dosage a week of Enbrel that I

have-50mg. twice a week? My Pharm. thought it was alittle much for

me to start out-my Derm. wrote the prescription for it.

Thanks and God Bless, Sue in Michigan.

[Guest guest]

Sue,

A new protocol for Enbrel, at least here in the states, is to start out on 50mg

twice weekly and then if you are responding well see if you can wean off to a

lower dose. Like I said this is fairly new, just starting this type of dosing

this past summer. Good Luck.

[ ] Enbrel question

Hi everyone,

I was wondering if anyone has the same dosage a week of Enbrel that I

have-50mg. twice a week? My Pharm. thought it was alittle much for

me to start out-my Derm. wrote the prescription for it.

Thanks and God Bless, Sue in Michigan.

[Guest guest]

---

Hi Terri,

Thanks for writing me back. I also have P and PA bad in my hands,

fingers, right hip, knee and ankle-the knee and ankle just started

about a month ago. I started the Enbrel about a week ago. My

daughter-she's almost 15 years old gives me the shots in my arms-she

likes doing it for me because of my fingers I couldn't hold a

syringe. I'm also lucky to have my husband's insurance and wouldn't

be able to afford it if I didn't!!

God Bless, Sue in Michigan.

In , Terri Boelhauf

<tboelhauf@y...> wrote:

>

> Hi Sue,

> I too am taking 50mg of Enbrel twice a week. My doctor will

probably lower the dose by the first of the year. But as of now I'm

right there with you. Do you have P and PA? I have both - pretty bad,

too. I had been taking the Enbrel through a drug study for the past 2

years in a smaller dose. At the end of Aug. the study abruptly ended

and I was beside myself thinking I would not be able to have the

Enbrel because of the cost and not sure what the insurance company

(BCBS) would pay, if anything. Within 7 days of contacting Amgen,

they had contacted BCBS and I had been approved. I was told by the

pharmacist that my 16 shots per month cost $2800.00. I will forever

give thanks that my co-pay is a mere $25.

>

> Hope the Enbrel works well for you. Hang in there.

>

> Terri B.