New to Enbrel | Arthritis Information

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Hi, I am new to this board. I will be starting Enbrel
Monday and i have been reading everyone's post
and it gives me courage. I was on Arava for 5 years
and got 2 bad liver test back, and i've been on all the
other meds and had a reaction to them so the dr. is
going to start me on Enbrel. I wished they could
have this drug in pill form because i don't like
needles.      hi i start my embrel shots tomorrow tuesday i have tried everything also  allergic to remicade, arava and azulfidine im scared to even try this  by the way i too hate needles well here goes nothing Hi Debbie, well i thought i would start the Enbrel
today but the dr. hasn't even ordered it yet. i kind of
dread starting the shots but then i don't want the pain
of ra back again. i have been on 5 meds before the
Enbrel and i hope it works. Let me know how it goes
for you. Hi Debbie, well I thought i was going to start the
shot today but i found out that my dr. went on
vacation so i guess she is in no hurry. So i don't
know when i will get to start. My sister takes the
Humira and she said it helped her so much. I am
hoping for the same for us. I had a lot of side effects
with the other meds too. I wished this wasn't a shot
and they had a pill instead, that would be nice. Yes
keep me posted. Lynn in Ky       

Barb Hi Barb, so you have been taking it for quite awhile
now. I am glad it helped you. You said that it was
losing its effectiveness, are you in pain.? I was
taken off the Arava after i used it for 4 and a half
years because i had a bad liver test and the pain is
slowly coming back.   I heard that the Enbrel will
cause side effects such as headaches and sick
stomach. Have you experienced any of these side
effects.?
                                                                                 Lynn   Hi Debbie, how are you feeling.? I was wondering
how you are doing.
                                     Lynn [QUOTE=debv60]hey lynn, its debbie i had my first embrel shot this morning it really wasnt that bad my husband gave it to me in the drs. office.  it did burn but if you go slow it wasnt that bad.  i did have  a bad headache though all day im hoping it was just nerves i am just hoping i dont have a reaction to it like the other drugs, i will keep you posted.
I started enbrel about 3 weeks ago and the headache hasnt gone away. I always have a headache the day after all day, and im super tired. So I suggest taking it on a day where the next day you can relax and maybe nap alot hehe. Good luck to you all. Hi debbie, sorry to hear about the itching. Was that
the 50 mg of Enbrel that you took.? Well i know now
that i will have to go and get some benedryl and be
ready. I know what you mean with the meds making
you sicker, sometimes i think maybe i don't want to
take these meds either but i don't want that pain with
this ra. I sure hope you get better, keep us posted.

I would give the Enbrel 25mg a chance before giving up on the drug completely. I never had any sideaffects from the 25mg doses. At least if you break out in a rash again, you know exactly what to do. Its not an easy decision to make and I'm sure you will be thinking it over carefully. If you do decide to try again, be sure and take it early in the week, so your Dr will be around. Feel better soon.

Barb

As I posted to Debbie, I take the 25mg doses of Enbrel, have since 1998 when it came out. I have had no sideaffects except for some redness around the injection site in the beginning. That went away after the first few months. Yes, the reason I think the Enbrel may be losing effectivness is increasing knee, ankle and foot pain. Its getting much harder for me to get around even with my walker. I see my Rheum... next week. Will see what she says. Sorry I took so long to answer.

Barb

I am a brand new visitor to this Board and was drawn to this discussion because I, too, had to stop Arava recently.  My rheumatologist suggested Enbrel, but my fear of self-injecting made me ask for something else.  So far now I am back on MTX, which a previous rheum took me off last year.  I was discouraged to read that itching could be an intolerable side effect.  Debbie, let us know what they recommend for you.  Because Arava affected your liver, are they reluctant to go to MTX? 

I wouldn't be too worried about trying the Enbrel unless you've had a reaction to something else.  I've been using it now for over 6 months and have never had the problem with itching, haven't noticed any side effects at all actually.  It has helped tremendously as far as the fatique and has helped the aches and pains to some extent (still have a bad day now and then but no where near as many).  I would think seriously about going back on a med that another doctor took you off of.  Did the previous Doc say why he was taking you off the MTX?  If it was affecting your blood counts you probably don't want to be back on it. Hi everybody, i am still waiting for the Enbrel. My dr.
forgot to place the order, I had to call her twice to
remind her.   I feel the stiffness coming back and the
swelling is awful.

I felt a little nervous the first time i had to inject myself, but i found it surprisingly easy. So its certainly worth considering if MTX is still causing you problems.

Hope things work out.

Hi, I've been using Enbrel for about a year...

I suffer from a nasty case of psoriatic arthritis. Besides all the nasty itchy lesions, I also developed arthritis... everywhere.  My Rheumatologist suggested Enbrel. I was also weary of giving myself shots (hate needles)... but I thought it was better than being stranded on the couch unable to move.  Within a week and a half of taking my first shots... I was able to move again.  After a month, I started taking kung fu again and my psoriasis also cleared up.  Originally, I was taking 2 shots a week... recently I've switched to the 1 shot a week dosage.  When I was taking 2 shots a week,... I didn't notice the "burning" sensation during the injection,... however, since I've changed doseage... I've noticed it.  Also, I noticed I get a nasty headache a day or two after the shot... which I can clear up with a can of caffeinated soda...(advil doesn't seem to work... but caffeine does)... I may switch back to the 2 shots a week doseage as I didn't experience side effects at all.


Hi, I took my first injection of Enbrel 50 mg thursday
and all i want to do is sleep.   I hope the 2nd shot
doesn't make me feel this way. But I'm keeping the
faith. Lynn I started Enbrel about 8 weeks ago, and at first the day after I took my shot I would be A). Very Tired and sleepy B). Had a nasty headache. But now, I no longer get the headache, BUT I am still sleepy. I take mine on fridays so I can sleep on the weekend lol. Also around Thursday the effect seems to wear off, I start to ache a whole lot. But hopefully for you guys that are still getting those nasty headaches, I hope they go away like mine did!! Good Luck!

Oooh I forgot one last thing, Ive noticed that since ive been on Enbrel, everytime I go outside during the day I break out on my arms and forehead. AND MAN IT ITCHES! So im thinking its the sun that causes this reaction. Because when I go out at night im fine. What do you guys think???
Jealousy38550.048599537I had my first Enbral shot.  I wonder how long before I feel better.  I have tried Remicade.  Went into a flare in Jan.  Arava and Mxt. had my liver very unhappy.  I also take the Mxt in shot form.  Ever since the Enbtal shot I have had a bad taste in my mouth.  Anyone else have that problem?  Yes I have had that bad taste in my mouth too ever
since i had my first shot 4 days ago. I am still very
tired and a little dizzy. I hope these side effects go
away soon.

I have taken Enbrel with no headaches since 1998 till 2 months ago when they changed the dose from 25mg to 50 mg. I tried the 50 for 3 weeks and for 3 weeks within 2 hours I had a headache.

I am back on 25mg twice a week with no headches. after Enbrel. Check your dosage. Hope this helps

Kenya 

   Hi Kenya. This has been my 3rd shot and I haven't
had a headache yet. I still feel tired and a little dizzy
but not as bad as the first shot of Enbel. I don't know
if i can handle these shots any longer, i took one on
my leg and it hurt really bad.    I sure don't want
anymore side effects.      
                       Lynn

hey guys its me deb havent been on in a while i was at ocean city md. for a week the weather was awsome, but very humid. i saw the rheumy on the 26th, and he said i had no choice as to go on the humira, since im allergic to embrel, remicade, sulfasalizine and arava, this is my last hope.  he did say however they are using  rituxin now for arthritis i already got approved for the humira so i am just waiting to receive the shots by fed ex. i will keep you posted. the dr. also said i have a lot of enthesopathy my knee and shoulder and especially my heels kill. still no word on my appeal hearing for disability either oh well enough of me graveling i hope you are all doing ok and enjoying your summer   debbie in pa

LYNN,

THE ABDOMEN HURTS MUCH LESS THAN THE LEG TO ME. TRY THAT. HANG IN THERE.

hope everyone has good wk-end!   Thanks Diane i tried the cortisone and it helped. I
hope you start feeling better soon. I had my 4th shot
of Enbrel and it has started to help me now. The
swelling is getting better and i still have some pain. I
didn't think that it was going to help me there for
awhile. Lynn [:)]

Hi Lynn,

I am really happy for you that the enbrel and pred. are working for you. I am on the pred when I flare up only. It helps pain...but gives me trouble with restlessness......so then I don't sleep. Some times having chamomile tea before bed will give me a couple hrs of sleep. I love the peach flavored tea. Do you have one really bad pain area, or all over pain?

Hang in there......

Diane

I have been on enbrel for two years and it has completely changed my life for the better.  When they switched to the once weekly dosage it would burn pretty bad so I switched back to the twice weekly and it is good now.  Besides injection site issues and headaches, has anyone run into serious side effects? Hi Diane,                                                     
I haven't used pred. in 4 years because of the
weight gain and other side effects. When i have pain
with this ra i have it all over but some parts like my
hands and shoulders hurt really bad. I hope that the
Enbrel keeps working, it seems to be ok for now.         &n bsp;         &n bsp;         &n bsp;     

I recently started Enbrel 25mg twice weekly; I've had 7 shots so far and had no problems until yesterday, 24 hours after the last shot, I developed a small red bruise just next to where I injected.  It's hot to touch, tender and feels hard beneath the skin, like a lump. I've heard about site reactions and was just wondering if this is normal?

Thanks for any help, just reading through this thread has been very informative.

Moonie

Hello everyone.  I just read all of your posts and your information really helped.  I am very scared to start Enbrel.  I am on Methotrexate and just weaned off Prednisone after I had a weight gain and other side effects.  It feels wonderful to be off of it, but I am very stiff by the end of the week and my ankle is very swollen.  Today I went to the doctor and he said the disease is still active and I need to add Enbrel.  I have many other health issues as well so I am uneasy taking another medicine.  I told him that I can deal with this extra pain and stiffness, but he said because the disease is still active I should try to stop its progression by continuing the Mxt and adding Enbrel.  I am trying to make a decision.  The headaches and injections do not sound great.  But, I have taken other meds that scared me at first (because of the side effects) and then turned out to be fine.  If you have any more information I would so appreciate hearing from you!  Hope you are all having a good evening!  Susan Lee Hi everyone. I took my 7th shot of Enbrel and the
side effects have started with a red swollen lump
about the size of a soft ball and it was warm to the
touch and it really itched so i put some
hydrocortisone on it and it helped. And i have sick
stomach also.    But i am starting to feel better.
These shots are really hard for me to get used to
because i am scared of needles, but i know that i
have to just Get-r-done.       Everyone have a good
evening. Lynn

Hi, I am new to Enbrel too.  I have noticed a heck of a cough.  Nothing else.  I heard a lot of people gain weight.  Anyone else notice a cough or weight gain?

Too tell the truth I am a little scared and any insight would really be appreciated.

Thanks

 

 

 

Hi all....WELCOME CYBERGENT!.....Guess we all have our issues with Enbrel. I have been taking it 1, 50mg dose a week....for 11 wks now. I was told the magic number for good effect is 12 weeks. So, i have not had any pain relief...but i am still hopeful. RA dr. added mxt, fosamax,and medrol. Medrol is only thing gives me relief....but now i am weaning down and pain is back

Moonie...I get a red lump everytime i give a shot about 24 hrs after. in the first few weeks the lump was huge and so itchy and red. now after all these weeks it is smaller and less bothersome. i still use the cortisone cream before shot at site. i have never had a headache as some report.

Cybergent...caugh can be serious upper resp infection. You need to let your dr. know that is going on. it is listed as one of the adverse effects of Enbrel that needs  tx.  Keep posting and hope meds work for you.

Susanlee...I was very frightened to start enbrel also. Had the dr. give me all the statistics of patients he has treated and their side effects. he has hundreds, and said he had only 1 with really serious reaction...and it was not my RA type. He keeps close watch on the labs. Hope you find peace while using it...and that it works for you!

Diane

I have been on enbrel for a few months, taking the 50 mg shot once a week.  I was never on the 25 mg shots, so I have always just thought the pain was normal.  The pain is totally worth it since it only lasts a few minutes, but gives me a week of feeling better.  I have never had a bad reaction to the shot, other than a tiny raised oblong bump about the size of half my pinky finger, and a little redness. I am feeling good, but I am not sure if it is because of my other meds, or the Enbrel. I am still on MTX and Nabumatone(relafen.) I am hoping to cut back on the MTX since I am still on 8 tablets a week.

butterfly38590.429849537Diane...wanted you to know that your note was such a help.  I started the Embrel today and the shot went just fine.  I am expecting good things from this experience!   Please keep in touch and let me know how Embrel is working for you, too!  Susan Lee Since i have been taking the Enbrel, and i have
taken about 9 injections now, i have gained about
10 pounds and i have a very bad sinus infection. So
i have to go to the doctor next week and see what is
going on. Good luck to all. Lynn Hmmm... You know... I didn't notice it right away... but I also gained about 10 lbs since starting the injections.  I didn't weigh myself very often... before, but now I check my weight about once a week.

It seems to have leveled. And I do work out regularly.


cofuzed38629.582337963

Hey all,

This is to maybe help people with questions they may have. I've been on Enbrel for about a year now, 25mg 2x a week. I was switched to it from Methotrexate, which hurt my stomach. I hate needles, but the ones I got for the Enbrel shots aren't so bad (I use Insulin syringes). For a while my mom gave me the shots, but I eventually built up the courage to do it myself. I have never had any side effects, and it works incredibly. Sometimes I do bleed a little and get a dark blue/purple bruise. Hopefully people can find answers in this!

Went to the doctor and he said i had a very bad
sinus infection and he gave me antibiotics and
allergy meds. He doesn't know if the Enbrel caused
it or not. Has anyone had a problem with sinus
infection or a cough.?   I will start back on the Enbrel
Thursday.   Oh and i had to stay off of the shot until i
took all of the antibiotics. LynnI started Enbrel for psoriasis and arthritis a little over a month ago.  My dermatologist did not bother diagnosing whether I had rhumitoid or psoriatic arthritis because since we agreed to Enbrel therapy, it would work for either.

I started because my sister, who also suffers from the same ailments, has been on enbrel since it was in the study phase for psoriasis.  I am very happy with my Enbrel experience.  I have only experienced injection pain once when I injected at too acute an angle. 

My psoriasis has improved dramatically day by day.  My arthritis has also improved as has fatigue and depression.

I receive my medical care from the VA and it took some special paperwork for the doc to order this non-formalary drug, but it is possible to get it. 

I have a friend with fibromyalgia.  She has been my friend siince age three.  I saw some mention that Enbrel did help some people, and it makes sense to me because of the autoimmune process.  What experience have others had treating fibromyalgia and are there any studies in this regard?
Hi Ya, Welcome to the happy land of the old tin men! Well
that's what I feel like so I guess you guys feel the same. Embrel
injections like you I start on tomorrow. I really hope they work
because I've just about been allergic to all else. Other then
going down the naughty path that's about it really. Good Luck!
Don't worry about the needles just look away and think of
something nice! like coffee and doughnuts, if your good!
Regards
Misty I can't look away because I am the one injecting.  I watch the entire thing and make sure I am inserting it at the correct angle.  Inserting it at the wrong angle makes it hurt more, as does not letting it warm up to room temp before injecting. I think that those who inject themselves are really
brave because i can't even look when my husband
gives me the injection.! I have been on Enbrel
since July. Lynn



_______________________________
I have had ra for 8 years now. I am on Enbrel,
prednisone. In the begining start with prednisone,
placqnel, sulfalazaine, mtx and arava.Hi all, I'm trying Enbrel, for the second time (about a year ago).

At that time, it was twice a week, and one had to mix the dose etc. It gave me way too much time to think about sticking myself (I hate needles). And twice a week, I did it for 3 months, but then didn't go back to the doctor. I had hoped i could get by with Prednisone.

The Prednisone caused me to gain A LOT of weight. And the side affects started to really get to me.

Then, I saw Jerry Lewis with Larry King and he talked about how prednisone caused his huge weight gain the year before. Also, the RA got worse. I have it very bad, a flair for me means 3 days in bed with little sleep and not being able to stand. Me knees are most affected, then ankles, then hands. My hands are deformed.

So, I went back to the doc and got on Enbrel again, this time a ready made syringe and once a week. Last night i finally got the guts to inject myself, times like this make me wish I had an SO. Last one could not deal with the RA. I took me over an hour to get up the nerve.

The shot was ok, but my nerves were such that I started shaking when I had to press the plunger etc. But I did it ok, and was quite proud of myself when it was over. Once thing I wonder about (and why I left this post) is that I inject the medicine very slowly. I also do not have any problem afterward (site swelling etc.). Just a thought.

I hope this helps, I need to get my life back. I never get out anymore, it hurts too much to walk.

Mark

Mark...you are not alone my friend. I use Humira and I have to get my husband to do mine for me. Even after a year of doing it...I still depend on him to do it for me. You should feel proud that you are doing it by yourself. Good for you!!

I'm glad you've decided to go back to the doctor and try treatments such as Enbrel again. Predisone is not good for you in the long term...not just because of the weight gain.

Come hang out with us more often. Since you don't get out much you'll make lots of friends here. I'm also involved with another site you might like too; www.rafriends.com Stop by and check it out. It's slightly more personal there. We've all become great friends....it's especially great for those looking for something a little more personal.

Good Luck Mark. I hope you get great results with Enbrel.

Its funny, I've read almost all the testimonies from the first page back in June I think it was.  Quite a few people complained about headaches and itchiness.  Thank God I haven't had any of these... yet...  I started Enbrel about 2 months ago, the 1x a week shot Killed me.  There was NO way I was going to give it to myself.  I recently switched to 2x week and can just about do it with my eyes closed!  But, I must say, I have quite a few tattoos and piercings, so needless to say, needles don't bug me!

I was diagnosed w/ Poly JRA at 18mons. and am now 24.  Also one of the "lucky" 20% or so that has eyes affected badly.  Glaucoma, Eyeritis, UVitis, cataratcts, you name it, I've been thru it!  But now taking Enbrel, my opthomologist said he hasn't seen my eyes this good in 5 years.  I kick myself for not starting sooner, but the threat of MS, with my family history, was stopping me.

Through the pain of stabbing yourself and some other side effects, I'm glad to hear most everyone is happy with this new creation.  It's about time, eh?

 

Hi Lynn,

Just wanted to say "Hello" and "Welcome" to the board.  I started Enbrel 6 weeks ago.  Thought I would never be able to handle the shots but they seem to be pretty easy to do...Still don't like the idea of having to give my self them but I do like walking ...

Good luck with the Enbrel.  It will get easier to handle, with time.

 

Toni

waddles38703.8351273148Hello to all, the enbrel has finally kicked in after 4
months and it is helping some now and the dr had
to put me on prednisone too. So i am doing much
better.   Merry Christmas to all.   Hi i have had a really bad side effect from the Enbrel and i have to be taken
off of it. Now my doctor wants to put me on Humira. So i am really glad for
you that can take the enbrel and i hope that it helps. Good luck everybody.
LynnLynn- what was your side effect?  Thanks! My side effects were that i couldn't breathe. My throat was swelling together
and my lungs were congested and i had to go to the ER. And this was on
Christmas night. It scared me really bad, i never had anything like this to
happen to me before. Lynn
Wow, I am so sorry!  That's horrible! I am doing a little better. Now my rhemy wants to put me on the Humira
and i told her that i am very worried because of the reaction that i had and
she said that enbrel and Humira are two different meds. I don't know but i
guess i will have to wait and see what happens. LynnHi im new to this site, from Scotland, I have been on Enbrel now for just over a year.  It has made a big difference to my life.  I no longer have the tiredness or pain.  I was like you and hated the thought of injecting myself.  I now think nothing of it.  Honestly the benefits for me and hopefully for you will be great.to Dyna,   you said you were going to your doc. to ask about the enbrel failing.  Does it stop working for some?  I'm new, about 4 months, it worked wonderfully but now between shots I'm having more and more pain.  It's not full strength pain and there is no inflamation, but it worries me.  Will it stop working?  Can dosage be increased?  I managed to lose a toe joint in the process leading up to geting on Enbrel, so I'm more than hyper that it might stop working because the joints that have mild pain now are my hands.  Sorry to be a worry wart.  ThanksI have been on Enbrel since late June- and my doctor has decided since I only have 4 good days to split the shot up - So I now take 25 mg on Sunday and 25 on Wednesday- I have only been doing this a few weeks but seems to work alot better- Maybe ask your doctor about splitting the shot...

I've always had the twice weekly dose and feel fantastic.  My RD offered me the one shot but said that there was a chance it could be less effective so I refused. I really don't mind the twice week thing, it seems to be worth it :)

Best.

Moonie x

Hi Brenda and Moonie,  Twice weekly is tempting for me but I have already stockpiled some of my 50 mg and figure I had better give it the three full months before I decide to change.  My rd has recommended going to twice a week but I really feel like I get great results from my once a week injection.  I have had to be off it this week for some dental work but knock on wood - my joints are still feeling pretty good.  I keep hoping that Enbrel will come out with the twice weekly that you don't have to mix.  That would be much more tempting.  Glad to see I am in good company in the Enbrel fan club. 

 

I'm due to start enbrel in a few weeks and i don't know if i want to now. I've been on about every drug going and i was on remicide (anothe anti tnf) last year and it made me ill as did mtx i was wondering what you thought about it does it work? and do u end up ebing ill like mtx?

Clair, like you I have been on everything else going and can honestly say Enbrel has worked the best (for me) and with no side effects -  I hardly notice I'm taking it and it has allowed me to reduce the dreaded pred - always good :)

Roxy, I'm not sure why it would be more effective, but maybe if you don't get the results you want on 50mg you could try the twice weekly as a next resort?  Mixing isn't a hassle, I do it automatically and normally leave it to dissolve while I'm posting on the boards -  I'd say the injection process takes 10minutes altogether.  I need a tooth out soon too, dreading that!

Take care Enbrel buddies,

Moonie x

 Hi,

I have been taking Enbrel since I was diagnosed with Psoriatic Arthritis in January of 2003. At that time you had to have a number to purchase the product. I'm now take one 50 Mg shot twice a week. I think it's a wonder drug as I have had life changing improvments over the last few years, but recently I have started to experience more pain. I'm not sure if is because I just getting older or if the Enbrel is not working as efficiently as it once did. My doctor now wants to put me on HUMIRA in hope of saving my joints. Does anyone here have experience with this medication? I'm feeling a bit apprehensive in switching medications.

                               Sandy

                       

Verdana
Hello y'all (I'm a Georgia girl!)   
Being a newbie here, I am learing sooo much! I can see support here that I've not found anywhere else on the Internet.

I have heard that the Enbrel and the Humira (spl?)
are really expensive. I talked with a young girl yesterday that says that even WITh her insurance, she has to pay a large amount and with her OTHER meds, it really adds up.



Hello,

I was using Enbrel for 2 years for psoriasis but have now switched over to Humira.  I have a few boxes of 50mg shots that I no longer need.  I kjnoe it is expensive so if anyone is interested in them please contact me at extraenbrel@hotmail.com .  Also, the Enbrel worked really good for me for a long time however I started to get chronic URI's so I took a break from using it.  After around 6 weeks my knee swelled up like a softball.  The doctor diagnosed me with psoriatic arthritis as well and I ended up on the Humira. 

Hello All, new to the board and am also a new Enbrel user.  I have been on the usual medications (Sulfa, predne, MTX) all with limited success.  I took my first injection last week Wednesday and have had unbelievable success.  The results have been so good that I have since stopped taking pain medication.  I was a little nervous myself about the injection, but it really was not bad.  The medicine does burn a little but it is nothing compared to the pain I was in prior to the injection.  The results truly have been unbelievable. 

Hi, Barb and all,

I have been on Enbrel since four months ago.  It effectively stopped the spreading of RA.   It is a good drug.  Myrheumy told me that I have to use it for the rest of my life despite that I have achieved almost clinical remission. The only thing I have been worrying is how safe of long term use.  Any insight opinions?

   

I've been on Enbrel for 7 years for Psoriatic Arthritis. It will not always control the arthritis, so you will need other overlapping drugs like steroid injections, anti-inflammatories,etc. It does not work with one injection, it takes months to build up in your system.Hi Everyone:  Have a strange question about Enbrel.  A few months after I started injecting my hair started to curl.  I've never in my life had curly hair but I do now.  Has anyone had this happen?  I understand that Enbrel can affect the hair follicules but this is so strange.  My hair has always been straight and cut all one length at below chin level.  It's now cut shorter, layered, and flips and curls over most of my head.    That is interesting.  I have always had curly hair so I have never thought about it affecting my hair.  I wonder now if it has actually changed the amount of curl my hair has.  I think the curls are smaller and tighter now, whereas before they were larger.  I think I liked them better before!   I think that now that I am off of the MTX things will probably start looking better though (with thickness and dryness.)

Hope you love your hair!  Curls rock.  Add a little pomade or gel and let it air dry, or add gel and blowdry it with your head upside down for a few minites.  Gives it some lift and more curls at the crown.
[QUOTE=debv60]

hey guys its me deb havent been on in a while i was at ocean city md. for a week the weather was awsome, but very humid. i saw the rheumy on the 26th, and he said i had no choice as to go on the humira, since im allergic to embrel, remicade, sulfasalizine and arava, this is my last hope.  he did say however they are using  rituxin now for arthritis i already got approved for the humira so i am just waiting to receive the shots by fed ex. i will keep you posted. the dr. also said i have a lot of enthesopathy my knee and shoulder and especially my heels kill. still no word on my appeal hearing for disability either oh well enough of me graveling i hope you are all doing ok and enjoying your summer   debbie in pa

[/QUOTE]

Hi,

New to the boards as well as enbrel.  I have my first 50 mg injection today and am a little nervous.  Really worried about side effects, had a mini stroke after being on methotrexate and relafen for 3 days.  The stroke and RA put me off work and on LTD.  Has anyone had a bad reaction to enbrel and anything specific I should watch for?

Love the boards, loaded with info.Hello to everyone!!
Sounds like this is an enbrel discussion. I also took it about 2 years ago. I know some people swear by it and I am glad some people get relief from it, but as for me--I had a terrible reaction to it--like one of the other people that posted a message.
I had only taken 2 shots and I had to go to the ER--I was sooo sick---weakness, vomiting, diarrhea etc etc etc..
I followed up with my doc about a week later and it was in his office that they discovered ( all of the sudden )I had developed a heart arrythmia. No one can definitively say its from the enbrel--but most of my docs say it is. It was too much of a coincidence.
Now I have to watch everything I do because I have constant PVCS ( premature ventricular contractions )
No caffeine, stress, certain cough meds etc etc....

I have had a ton of heart tests done and they do an echo every year now. I have only talked with one other person that had a heart side effect from enbrel--she had gone into cardia arrest after one shot.
Its so hard with all these new meds--we know they can help but some of the side effects are hard to swallow.

Good Luck to everyone starting new meds--just make sure you are fully educated about what you are putting in your body. It pays to know--my doc didn't tell me and I trusted him. Now I do research myself!!


wysoneI was taking Enbrel, then added Methotrexate.  Then I got PVCS and had to go on anti-arrhythmic drugs.  Over two years, I slowly weaned off the methotrexate and my PVCS disappeared too.  I'm now off the anti-arrhythmics and still taking Enbrel.  Go figure.

Have had 2 enbrel shots and the only side effect I have had is SLEEPY!!  Sleep the day of the shot and most of the next day. 

I take the 50 once a week but it seems to wear off after three days.  Has this happened to anyone else?  Will the effects last longer as I tak more shots?

Hello all.  I'm a brand new member to this forum.  I will begin taking enbrel in the next couple of weeks and have found this forum to be very enlightening!  I was diagnosed with psoriatic arthritis in 1997.  Since then, I have been on indocin, which gave me a seizure after the 3rd dose, then I switched to naproxen and added methotrexate.  I have built my mtx dose to 10 tablets a week.  They make me nauseous and extremely fatigued for about a day and a half.  I haven't responded favorably enough to the combination of mtx and naproxen, so my rheumy suggested I add enbrel.  I'm excited and nervous at the same time.  I've never done self injections, and don't know that I will be comfortable doing that...but my husband is willing to give them to me and I trust him.

My arthritis is mostly in my small joints (fingers, toes, wrists, ankles), which can really interrupt my work.  (I use a computer all day). I have more bad days than good here recently, and am hoping for some positive changes with enbrel.  I'm a little dismayed to hear from so many of you that it seems to become ineffective over time.  I was sort of hoping for a remission miracle.  Oh well, I'll continue to pray for that...for all of us!

 

I am about to start Enbrel too. Waiting on Liver results. I got what I hope is a false  positive Hep c count. Liver enzymes were up due to Mtx and sulfasalzine. I stoped those meds due to stomach problems and the elevated liver count. As far as the itching goes, you may be allergic to laytex. I heard that the tip of the needle is encased in a laytex cap. Headache-was it like a migraine? I get migraines and take Topamax. I thought Humira gave you headaches worse than Enbrel.  I also have Fibromyalgia and Psoriatic Arthritis. It is hell!!!!!!!!!!!!!!!!

Beth in Villa Rica, GA

Had my first Enbrel shot on thursday. I was so scared that I would itch after reading all your posts. It didn't bother me a bit. Though it hurts like hell going in, not as bad as Humira. It's so weird how you guys all say "go slow" but to me it's agony. slooooooow, chines water torture agony. I'm always saying, do it as fast as you can! Took my first Etodolac tablets for the swelling an actually felt a difference the first morning, but it came back...let's see what's next! Glad the boards are back, I was so sad you all were goneHi, I have been taking Enbrel for psoriasis for the past seven months.  It is absolutely incredible for my skin (my psoriasis is 98% gone) however, I have gained seven pounds!  And that is with running two miles a day.  I have always been thin and in great shape, but I am so upset about this uncontrollable weight gain.  I had my thyroid checked because I never thought it could be the Enbrel.  My thyroid is fine.  Anyone else heard a lot about this and if so, does the weight come off when Enbrel is stopped?? [QUOTE=Lynn] Hi, I am new to this board. I will be starting Enbrel
Monday and i have been reading everyone's post
and it gives me courage. I was on Arava for 5 years
and got 2 bad liver test back, and i've been on all the
other meds and had a reaction to them so the dr. is
going to start me on Enbrel. I wished they could
have this drug in pill form because i don't like
needles.      [/QUOTE] [QUOTE=bmadron]

I am about to start Enbrel too. Waiting on Liver results. I got what I hope is a false  positive Hep c count. Liver enzymes were up due to Mtx and sulfasalzine. I stoped those meds due to stomach problems and the elevated liver count. As far as the itching goes, you may be allergic to laytex. I heard that the tip of the needle is encased in a laytex cap. Headache-was it like a migraine? I get migraines and take Topamax. I thought Humira gave you headaches worse than Enbrel.  I also have Fibromyalgia and Psoriatic Arthritis. It is hell!!!!!!!!!!!!!!!!

Beth in Villa Rica, GA

[/QUOTE]

 

Hi,  I used Enbrel for approx 3 years,  didnt like shots either, but found the faster you stick it (needle) it dosent hurt at all.   the Enbrel worked well for my arthritis ( RA) however, no history of MS in our family, and low and behold,  as of last month, I now have MS, and we are thinking the Enbrel could of had something to do with it coming out of the "closet".   Good Luck,   P.S.  Memory loss was one of my first symptoms of MS,  took me 6 months to " remember" (smile) Hi Lynn, I am new to this site as of today. I found out I had in RA in April of this year. I tried not to take any meds, only alternative treatments, but my pain just got worse. I have given myself 4 injections of Enbrel. I take 50ml a week. The only reaction I have had is a rash near the injection site. I felt better two hours after my first injection. I was driving and realized my hands were not hurting! I go back to my rheumy on the 21st. to discuss MTX. I have it here but the side effects sounded so terrible. I am on 10mg of Pred a day and that has given me great days. Good Luck to you. let me know if you would like to keep in touch, Rain  h2osign38917.6126851852

hi i am new here.

i have vasculitus,psoriatic, and ostipeedia.

i get a rash from the vacular, swellon legs and feet, hips hurting from the osteo, my psoriuses is much better since i have been on methrotxate, but my other systems are still giving me problems.

so dr sugested last year the enbrell injections but my insurance would not cover them. so i have been on prednisone off and on. so as of today my ins. will cover the injections.

i had never heard of them befor last year, and still know very little.

i have not picked up the meds so i do not know the dosage.

they hope to get me off the prednisone, but it does make me feel so much better. so i hope the new meds will work for me.

i will come here to read notes from otheres.

good luck to all who are new to this as i am.

jo

Hi to all the newbies...Welcome.. I have been on the Enbrel since about Jan "06". I was doing the 50 mg a week and it wasn't quite working, so the Rd suggested 2 times a week. I got to do the 2 times a week for about a month till the insurance co decided that they were not paying for it. It was the best I had felt for the last 2 yrs. To make a long story short. The Rd thought because the insurance co would not pay, he would put me in a study. Rituxan to be exact. I didn't qualify for the study. I was off the Enbrel for 3 months, NEVER again will I be off the Enbrel. Again I am on 1 time a wk. of the Enbrel. I have been back on for 6 weeks now. So I am kinda back to where we were before. It doesn't quite help like twice a week did. I have an appt with another RD, Aug 7, to get his opinion. Funny thing is.....I worked for him probably 15 yrs ago. I have to travel 3 1/2 hrs to see him, but he has agreed to work with my family doc here.

I don't seem to have the side effects that others have experienced. I wish you all well with your meds...Its a tough road..But we all have to keep our chins up!

Good luck to you all!

I have to be careful what I take because of former Hep B Infection. Damage to liver...

Well I had high hopes for this miracle drug, (TV ADS) I expected a lot, but have been disapointed so far. 

Hi All,

First, I'm glad I ran across this forum.  I can see it is a great source for information and support from others who are going through the same thing.

I was diagnosed with psoriatic arthritis and severe psoriasis in February 2006 and was put on Enbrel (2x a week).  After about 2 months, the skin had mostly cleared up and my joint pain had decreased a lot.  I still need a cane for stairs and have some pain but nothing like it had been.  Methotrexate was added to my regime about a month after going on Enbrel.  I have stomach problems with it but they are less severe if I take it at least a few days after my Enbrel injection.

I too have an intense dislike of the needles and to be honest I often haven't stuck to the scheduled dose because of my aversion.
But if I go too long without it, I am in too much pain so I am trying my best.  At my last rheumatologist appt, the nurse told me there is a new autoinjection version!!  I am very happy.  As soon as my regular supply is done, I'm switching.  You can see a picture of it at www.enbrel.com

Regarding other posts:  (1) I too have noticed weight gain and (2) my hair texture definitely has changed -- it is more wiry / curly.

p.s.  I'm 48 years old.. not sure if age is a factor in the weight/hair thing

Wow!! Seems a lot of us have been through many of the same therapies.  I have also been through the Enbrel, Humira ringer, unfortunately, I was diagnosed with MS in Jan 06, which they are biologics? and effect the CNS , (I guess I was a great candidate for another autoimmune disease) I had symptoms earlier than that but I kinda dismissed them over time and they went away. I am on the preds, mtx, celebrex, pain meds, now copaxone, and a whole slew of stuff for fms, ms, ra, hypothyroid, migraines, etc. My rheumy wants to start the Rituxan soon, I pray this will take care of the ra and fms, so I can get active again, I am tired of being tired and tired of the pain, but I know "this too shall pass." Just be patient and positive, you are still here for a purpose. I called the pharmaceutical company that sends me my Enbrel injections. I asked if they can send me the new "pen injectors" with my refill next month. They said YES! It should be so much better. I have been on Enbrel for 8 weeks now. Just did my 9th shot. The new pen injector is sort of like a ball point pen in that you don't see a needle. You hold it flush with your skin and press a clicker on top, the needle goes in, you count to 15 (I think) and release. The needle retracts back up into the "pen" and you're done. Much more civilized if you ask me.

I've been reading all of your side effects. I cannot go on Mtx due to a reaction I had to it initially. I took it for 2 weeks and had to come off. Then came the ENbrel. The only side effect I have is initially i get a little itchy spot (about the size of a silver dollar) at injection site that lasts about a day or two. I do find that the day before I do the shot I'm a little achey and VERY tired. I fell asleep on the couch at 10am!I just tried the autoinjector for the first time and LOVED it!  I think everyone should go that route! I've been on enbrel for a couple of years and have had excessive sweating.  I wake up several times a nite with sweating.  The enbrel is working quite well but the sleepness nites are a bit much.  Anyone else out there with this problem?Hi - just had my first injection this morning at the hospital and go back on Friday for the second which I will do myself. It wasn't as bad as I thought. Hopefully then will be able to do it at home.

I have had ankylosing spondylitis for about 40 years and been taking Voltarol with mixed success and this has also caused other problems. I am hoping this works and I can get off all the other pills I am taking.

Will let you know how I get on.

Does anyone know if there are any foods to be avoided?

Hi again - Had my second injection at the hospital, did it all myself under supervision of the specialist nurse and everything ok. I can now do it at home. The reason I asked about food I thought I had read somewhere about avoiding certain cheeses. I asked the nurse and she said to be careful with the soft cheeses, Brie etc.

This was the first time I had ever injected myself and it didn't hurt a bit. The nurse advised to inject at a 90 degree angle and not 45 as it's easier to take it out at the same angle.

I haven't noticed any improvement in my AS but it's early days yet and apparently it takes at least 2 weeks to start working.

Hi all...I've just had my 11th injection and I'm doing great on Enbrel!  What a miracle this has been for me... I've had no itching, but I have had more headaches lately, and dry eyes, which someone else had mentioned...I think on another thread.  The headaches I had attributed to the fact that I've stopped taking naproxen...but I suppose it could be the enbrel.  Excedrin seems to help rid me of the headaches, and restasis works for my dry eyes...and I can certainly live with these since my arthritis pain is completely gone! 

I've had no site reactions or weight gain, so far.  I give myself the injections, 50mg once a week.  I give the vial plenty of time to come to room temp, and I go very slowly and find it virtually painless. 

I hope I always feel this good!

 

 

Am new to this site. Started Enbrel 6 days ago. I am so hopeful since all other meds except prednisone have caused elevated liver enzymes. Would like to know when I can expect it to "kick in" and how much to expect in the way of relief. Does it help significantly with the fatigue also? Hello I'm Wendy, I have had my third Enbrel injection do adverse effects so far. I am interested in keeping bees, does anyone know if there are any reactions to beestings?  I suppose this seems a crazy question!Howdy,

I'm Danea and have been on Enbrel for two years. I call it my "Miracle Drug"  LOL. I think it may be the trigger of some headaches but they are few and far between. I have also noticed that the injection site reaction I get is so much worse in my thigh so I pretty much only do my stomach. If I get a reactions it's just mild redness and itching, nothing terrible. I am on Enbrel alone, nothing else accept the occational advil. ;)
I am starting too. I was in a clinical trial for an iv medication orencia but had to back out because of liver counts....i am scared too and afraid of needlese but I will do it myself...some how...I dont like to depend on anyone....and I am in wicked pain so kinda want to do it asap. I hate this disease.

Hi, Lynn -  I'm new to the forum.  I've had RA for over 30 years and have taken so many different types of medications, I can't remember all the names! I  started taking Enbrel at least 10 years ago.  Methotrexate (which I took in pill form and finally injections for about 10 yrs.) caused liver scarring which  led to a host of other problems.  Enbrel has been a miracle drug for me.  Fortunately, I'm one of those people who do not have a lot of reactions to drugs (except the methotrexate) and have been relatively  free of severe pain and enjoy great mobility.  Unless the reactions are really bad or your dr. stops the Enbrel, try hanging in there.  Hopefully it will really help.  I use the sure click auto-inject method once a week - 50 mg. dose.  Needles aren't high on my list of favorites, but it's better than not being able to get out of bed in the a.m.

Hi, I am new here so bare with me. I have been on Embrel for about a year. I do the sureclick as I too can't do the needles. Embrel works wonders. I was in the hospital for about 3 weeks and they took me off of all my RA meds. By the end of the week I knew I was in trouble. I always wondered if I could do without Methatexate and Embrel.....I could not. I am 61 and was diagnoised 9 years ago. I am a hairdresser and I need my hands and feet. The only side effect is the headache. he headache was pounding for the first 3 shots then got better with each one, now it is a real dull one not the pounding. Blessing to each one of you......I took my first embrel shot last week , the pre-filled shots do burn . But.......................my psorris is already looking good..............to all other's even when they are first out the fridge give it in the leg , it's so much more pleasant that the tummy...................and count to 15 seconds when you do this watch tv it takes ur mind off the shot completely !!!!!!!!


I had my second embrel shot last wednesday and my leg's are looking awesome already !

IM or PM me and I'll give you all the lowdown hun !
rabecca2009-08-04 06:28:36Cheese ??????????????? does that include milk ...................I am Praying not ! I am a milkaholic ! Hi. Please help. I am terrified and need to tell my story because I might be making a huge mistake, thanks for listening. I am 40 and homeschool my Mensa smart kids ages 6 and 7. I get a very mild case of shingles and exactly one week later with the flip of a switch I woke up 8 weeks ago with excruitiating pain in my shoulders, elbows, wrists, hips and knees. I am (was?) a weight lifter and serious cardio freak in excellent shape and set the highest physical goals for myself. A week passes and I think this is some silly something and it will pass. It progresses to my hands and feet, they swell and hurt. Hurt a LOT. Primary Physician puts me on 10 mg Pred since I am bipolar II and she didn't want to mess with my head. No effect one week later and see her again. Pred now to 60 mg and get Tramadol. Neither Work. Referred to Rheumie and put on alternative Pred, forget name. Also get Dilaudid. No effect for either. Eventually upped to pain patch and Morphine. They just make me sick and constipated. He gives me Nucynta and it's just touching the pain. He admits to desperation to dx me and is baffled. I also see an Infectious Disease doc and test + for ANA then - 2x. My pinkies are starting to deform. He refers me to Virginia Mason here in Seattle and my new Rheumie runs every test on EARTH while I am there. He wants me to start Enbrel and dx me with either reactive or ankylosing spondylitis - we are waiting for tests to confirm. He suspects I have some liver damage too. My husband wanted to do some NSAID experiments while waiting for test results and insurance approval for Enbrel. I went on Aleve for 2.5 days and it helped a lot, not 100% and still swollen. Now I am off that and will start Ibuprophen in 2 days. First, I am skeptical I have this disease but something is clearly wrong and every test is negative. Friends think I have all sorts of other things and I don't know what to think. I never get sick and have nothing wrong except this familial bipolar II. I take Lithium, Tegretol and Lamicatal - all at low doses. I am a lifelong insomniac and take Ambien 15-20 mg. Also some supplements - vitamins and such. I need your advice, badly.

Enbrel first biologic with up to 9 years rheumatoid arthritis safety, sustained efficacy data

THOUSAND OAKS, Calif., November 12, 2006 -- Amgen (NASDAQ: AMGN) today announced that Enbrel? (etanercept) is the first biologic with published data to show improvements in multiple measures of efficacy that were sustained in rheumatoid arthritis (RA) patients completing up to nine years of therapy. These new data are being presented at the American College of Rheumatology (ACR) Scientific Meeting in Washington, D.C.

"The current data in Rheumatoid Arthritis suggest that Enbrel is both effective and safe in long-term use," said Mark Genovese, M.D., Stanford University Medical Center, Palo Alto, California. "These findings are significant because they provide a degree of reassurance to both the patient and the physician that unexpected safety concerns do not appear to be developing after nine years of use."

ENBREL continues to have a strong safety profile for extended periods of use. In the studies presented at ACR, rates of serious adverse events and serious infections remained low and were consistent with controlled portions from the double-blind phases of the studies. The overall number of observed malignancies (excluding nonmelanoma skin cancers) were similar in type and number to what would be expected in the general population.

Additionally, data showed that 77 early rheumatoid arthritis (ERA) and 280 long-standing rheumatoid arthritis (LRA) patients who completed ENBREL treatment for up to eight years experienced substantial improvements in their ACR scores. Additionally, 73 LRA patients who completed ENBREL treatment for up to nine years experienced similar improvements. ACR scores are a composite measure of improvement in RA symptoms, including joint swelling and tenderness, pain, level of disability, overall patient and physician assessment, and an objective marker of inflammation, such as erythrocyte sedimentation rate.

Data being presented at ACR showed that ENBREL provided sustained improvement in the signs and symptoms of RA, in those patients who continued in the study, regardless of duration of disease. Following eight years of ENBREL therapy: 75 percent of ERA patients and 76 percent of LRA patients achieved ACR 20; 60 percent of ERA patients and 52 percent of LRA patients achieved ACR 50; 35 percent of ERA patients and 26 percent of LRA patients achieved ACR 70. Further, for those patients with LRA who received ENBREL treatment for nine years, 74 percent achieved ACR 20, 41 percent achieved ACR 50, and 22 percent achieved ACR 70.

The ability to perform daily activities is an important goal for many people with RA, and data presented at ACR showed that treatment with ENBREL may help them achieve this goal. Through eight years of treatment with ENBREL, data showed that 73 to 85 percent of patients with ERA and 53 to 72 percent of patients with LRA achieved a clinically significant improvement in the Health Assessment Questionnaire (HAQ) score, a patient questionnaire that measures disability. A clinically significant improvement in HAQ was defined as at least a 0.22 improvement from baseline.

"Before I was diagnosed with RA, the pain, stiffness and fatigue stopped me from doing many of the activities I enjoyed," said Gloria Treece, a participant in the study. "Since starting ENBREL treatment approximately nine years ago, I'm now able to take part in many activities with my family."

These studies were designed to assess the safety and long-term efficacy of ENBREL in adult LRA patients who have failed to respond to at least one disease-modifying antirheumatic drug, and adult patients with ERA (defined as less than or equal to three years of disease duration). Patients with RA who participated in controlled clinical trials of ENBREL were eligible to enroll in open-label extension studies (LRA, N=644; ERA, N=207).



Believe those who are seeking the truth. Doubt those who find it.
Lynn, you can thank me later

Enbrel first biologic with up to 9 years rheumatoid arthritis safety, sustained efficacy data
THOUSAND OAKS, Calif., November 12, 2006 -- Amgen (NASDAQ: AMGN) today announced that Enbrel? (etanercept) is the first biologic with published data to show improvements in multiple measures of efficacy that were sustained in rheumatoid arthritis (RA) patients completing up to nine years of therapy. These new data are being presented at the American College of Rheumatology (ACR) Scientific Meeting in Washington, D.C.

"The current data in Rheumatoid Arthritis suggest that Enbrel is both effective and safe in long-term use," said Mark Genovese, M.D., Stanford University Medical Center, Palo Alto, California. "These findings are significant because they provide a degree of reassurance to both the patient and the physician that unexpected safety concerns do not appear to be developing after nine years of use."

ENBREL continues to have a strong safety profile for extended periods of use. In the studies presented at ACR, rates of serious adverse events and serious infections remained low and were consistent with controlled portions from the double-blind phases of the studies. The overall number of observed malignancies (excluding nonmelanoma skin cancers) were similar in type and number to what would be expected in the general population.

Additionally, data showed that 77 early rheumatoid arthritis (ERA) and 280 long-standing rheumatoid arthritis (LRA) patients who completed ENBREL treatment for up to eight years experienced substantial improvements in their ACR scores. Additionally, 73 LRA patients who completed ENBREL treatment for up to nine years experienced similar improvements. ACR scores are a composite measure of improvement in RA symptoms, including joint swelling and tenderness, pain, level of disability, overall patient and physician assessment, and an objective marker of inflammation, such as erythrocyte sedimentation rate.

Data being presented at ACR showed that ENBREL provided sustained improvement in the signs and symptoms of RA, in those patients who continued in the study, regardless of duration of disease. Following eight years of ENBREL therapy: 75 percent of ERA patients and 76 percent of LRA patients achieved ACR 20; 60 percent of ERA patients and 52 percent of LRA patients achieved ACR 50; 35 percent of ERA patients and 26 percent of LRA patients achieved ACR 70. Further, for those patients with LRA who received ENBREL treatment for nine years, 74 percent achieved ACR 20, 41 percent achieved ACR 50, and 22 percent achieved ACR 70.
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