starting enbrel scared

[KelsRog]

Hey guys, I'm 19 and was diagnosed with Psoriatic Arthritis at age 9 or 10. They put me on Methotrexate back then and I did great. I was fine for about 5 years once they got me off, but it's back and worse than ever. I found a new Rhemuatologist and she tried MTX again, but it didn't help. With Enbrel, I noticed reduced swelling the very first week. BUT, I'm still on MTX too. Lately my injection site has been bruising more frequently and it's gotten red and itchy. I'm worried, but I know it happens with a large amount of injections. But I don't know if it's the MTX or Enbrel that's been making me feel so terrible. I don't know what to do to make myself feel better. I'm sick and tired and dizzy all the time. I just don't want to deal with anyone except my fiance. And with the MTX(I don't know about the Enbrel) they would make me abort if I got pregnant while on it. It tears me apart. The thing we want most is to have a family. But if I'm in pain from not being on it, how will I be able to make it through the pregnancy? Much less the actual mother thing??? Any encouraging words?

[Keith]

Hello...I am new to this site and also new to RA disease. I just started taking Enbrel and I am not sure of all the bad effects they claim you can have...and also other diseases you might get from taking the medicine. I have been on Prednisone and it seems to work fine..but I have gained a lot of weight and I just seem to be hungry all the time, but as far as the pain goes...Prednisone seems to work fine for me,but the doctors want me to get off of it now. So I have taken 2 shots so far of Enbrel and I can not see any difference yet...but also they say it might take a while for the medicine to start working. At first when I was told I had RA I was in terrible pain..mostly in my wrists and hands..also some in my ankle..Now I am told I have A Vascular Necrosis of the Heel bone in my foot...and surgery is suppose to be the answer they claim, and they say the Prednisone is probably what cause this...but they tell me I probably got RA from a drug they had me on for Hep.C a medicine called Pegassist. I am almost ready to give up...I go from one problem to another and it all seems to be from the medicines they are giving me to get rid of one problem, then it turns into another problem...does anyone else have these kinds of problems or has anyone went thru any of this like me...OR AM I JUST A WEIRD CASE...thanks for any help you can give me...and I really like this site..it is helpful to just read the posts and see what all everyone else is going thru...

[GSR]

I've been on Enbrel for one week (two shots; Enbrel Sure-Click 50mg). I saw an immediate improvement in the stiffness in my ankles. My plaques (60% coverage) are already thinning. I've had psoriasis for 20 years and just recently determined that I also have the beginning stages of PA. No site reactions at all, just a bad headache one day after each shot. It used to take me 20-30 minutes a day to apply topical treatments, so I am thrilled at 15 seconds of stinging and a headache versus the pain of apply cream and ointments. My mother has had psoriasis for 40 years and has been on Enbrel for about 4 years. She is totally clear, so I am hopeful to see the same results. I had my first ever bloody nose this morning, so I guess that is connected to the treatment. Other than that, I am happy so far. Good luck to all.

[Vfein]

sandy wrote:

Hi im new have been reading posts for two weeks and i am really nervous i have a ruhumy and a regular doctor and i have scarcoidosis that is in remission for 21 years now i am 38 years old and oct of 2005 my knee stiffened up and hurt like the dickens so an ortho wanted to do a scope on it never helped at all he said it was inflammation end of story real aggravated by this time my other knee started and they said i was favoring it so a diff ortho did a scope and said i had pinched tssue under knee cap well that was no help so i went back to my rhumy he had tried me on medrol,voltariin,celebrex nothing worked also had 5 cortisone shots a 3 monthes time which only helped for 3 days now he says he is sure enbrel will help i am so scared any advice please i feel for all you guys and hope for answers for all of us. Sandy,NC

I have RA and have been on Enbrel for 5 years. I was also very scared and had never before imagined that I could give myself a shot...
However, it worked like a miracle for me. After just one shot I had NO PAIN at all. After a couple of shots i got the hang of it and it is no big deal. Now I do not even remember that I have RA. I do everything with my hands (that is the area I had the most pain in), I exercize regulary and have no issues with it.

I take no otehr drugs and my latest blood teasts were great.
IT IS VERY COSTLY. I am on Medicare and it costs a fortune.
About a year ago because of the cost I switched to Remicade. I had side effects, my liver all but stopped functioning. Once I switched back to Enbrel (price not withstanding) everything went back to normal within 2 months.
I guess unless they start making generic Enbrel I will have to pay and count my blessings.
Hope this helps. Good luck.
Vfein

[Vfein]

Keith wrote:

Hello...I am new to this site and also new to RA disease. I just started taking Enbrel and I am not sure of all the bad effects they claim you can have...and also other diseases you might get from taking the medicine. I have been on Prednisone and it seems to work fine..but I have gained a lot of weight and I just seem to be hungry all the time, but as far as the pain goes...Prednisone seems to work fine for me,but the doctors want me to get off of it now. So I have taken 2 shots so far of Enbrel and I can not see any difference yet...but also they say it might take a while for the medicine to start working. At first when I was told I had RA I was in terrible pain..mostly in my wrists and hands..also some in my ankle..Now I am told I have A Vascular Necrosis of the Heel bone in my foot...and surgery is suppose to be the answer they claim, and they say the Prednisone is probably what cause this...but they tell me I probably got RA from a drug they had me on for Hep.C a medicine called Pegassist. I am almost ready to give up...I go from one problem to another and it all seems to be from the medicines they are giving me to get rid of one problem, then it turns into another problem...does anyone else have these kinds of problems or has anyone went thru any of this like me...OR AM I JUST A WEIRD CASE...thanks for any help you can give me...and I really like this site..it is helpful to just read the posts and see what all everyone else is going thru...

I also have RA and it was also mostly in my wrists and hands. The doctors had a tough time figuring out that I actually had RA. I have absolutely no visible signs of RA and never had. Just unbelivable pain. I was on prednizone for a few months. It is the worst drug. It worked as a painkiller but the side effects of it are very serious. I also gained some weight (it made me hungry and sleepless -- more time to eat...)

I stopped taking it, went on Enbrel and after afew months my body got to its normal self. I lost the weight, have no pain and feel great all around. I am sure that long term suppressing the immune system will have its price. But I see no alternatives for myself.

I hope this is helpful.
Vfein

[Vfein]

KelsRog wrote:

Hey guys, I'm 19 and was diagnosed with Psoriatic Arthritis at age 9 or 10. They put me on Methotrexate back then and I did great. I was fine for about 5 years once they got me off, but it's back and worse than ever. I found a new Rhemuatologist and she tried MTX again, but it didn't help. With Enbrel, I noticed reduced swelling the very first week. BUT, I'm still on MTX too. Lately my injection site has been bruising more frequently and it's gotten red and itchy. I'm worried, but I know it happens with a large amount of injections. But I don't know if it's the MTX or Enbrel that's been making me feel so terrible. I don't know what to do to make myself feel better. I'm sick and tired and dizzy all the time. I just don't want to deal with anyone except my fiance. And with the MTX(I don't know about the Enbrel) they would make me abort if I got pregnant while on it. It tears me apart. The thing we want most is to have a family. But if I'm in pain from not being on it, how will I be able to make it through the pregnancy? Much less the actual mother thing??? Any encouraging words?

I am also on Enbrel and do not take MTX. It works just fine without it.
As far as the pregnancy goes... you should check with a good OBY but it is my understanding that when pregnant your body produces enough estregent (or some other hormon) to keep you symptoms- free fro the duration. I am not sure how long before you get pregnant you should stop taking the drugs. Your doctor should advise you on that. I am pretty sure that you should stay away from the drug for some time before getting pegnant. I had my kids before I had RA (at least before I knew i had it) so I am not a good example. I do know several women who have RA and had several successful pregnancies and no pain till a few months after the babies were born.
Check with a good doctor.
Good luck.
Vfein

[Laura Johnson]

Hi, I am 27 and have had Rheumatoid arthritis for 5 years now. It has taken me 5 years and 5 specialists before anyone would give me enbrel but am over the moon. I am hoping to come off my steroids - has anyone been successful in this. Also my shoulder joint has died and I need a replacement. I would really love to talk to anyone who has had a replacement and any advice on getting one.

[Laura Johnson]

ann in michigan wrote:

I've had pain all my life (56 years). Had many different diagnosis. I've had ankle surgery, knee surgery (scopes) total shoulder replacement, and four trigger finger surgeries (3 more fingers are now involved) I finally got my doctor to refer me to a reumotologist (misspelled). I went for a year (taking 3500 mg sulfasalizine daily) and saw some success, but didn't think doctor was listening to me. Am now going to a different reumy and she started me on ent enbrel. She gave me so much more info than any dr. I've seen. I've probably had anklosing spondilitis for more than 40 years undiagnosed and now have osteoarthritis, and possibly ra or psoriasis arth. I will find out the results on next visit. I still lead a fairly active life, but am in pain so much at night that I get very little sleep. I worry about the long term affects of the meds, but have been so tired of feeling bad that I'm ready to try anything. Any advice?

Hi, I was wondering if you could give me any advice on the shoulder surgery? I need to get a replacement and was wondering if you could help me and give me any advice?

[robbi e]

i was scared to im 41 had severe plaque psoriasis within 1 month almost all was gone also had psoratic arthiritis in my hands and that is also gone i still have psoriasis on my feet and sometimes really light on my fingers i have had no adverse reactions other than reddness and sometimes itching where i give myself the shot but it is worth it. good luck

[Lizzy]

sandy wrote:

Hi im new have been reading posts for two weeks and i am really nervous i have a ruhumy and a regular doctor and i have scarcoidosis that is in remission for 21 years now i am 38 years old and oct of 2005 my knee stiffened up and hurt like the dickens so an ortho wanted to do a scope on it never helped at all he said it was inflammation end of story real aggravated by this time my other knee started and they said i was favoring it so a diff ortho did a scope and said i had pinched tssue under knee cap well that was no help so i went back to my rhumy he had tried me on medrol,voltariin,celebrex nothing worked also had 5 cortisone shots a 3 monthes time which only helped for 3 days now he says he is sure enbrel will help i am so scared any advice please i feel for all you guys and hope for answers for all of us. Sandy,NC

Hey Sandy, let me tell you how scared I was as well! The thought of sticking a needle into my OWN body?

I went to my Rheumie after watching the video, and she was great. We went through the motions and at the point of inserting the needle I felt dizzy. Then I just pushed and it went in so easily! I was laughing. After 11 years of doing this, I can honestly say that it is not only painless, but cannot be compared to the enduring and relentless pain you are now experiencing. I have a little crazy saying to myself as the needle goes in: "I have been blessed that my insurance pays for this, and I will take my time and deliver this syringe with love, with care and with gratitude."

The key is to warm of the syringe to room temperate. So if you have a very cool night, or very high AC, you may want to consider longer time or just holding it up to your skin the last few moments.

Check the syringe for air bubbles. AFTER you have pulled the cap off, think of what nurses and doctors have done for you in the hospital, or think of those cool movies where you see it performed. You WILL see a bubble, and with out fear - just push the syringe towards the ceiling and watch a squirt as the bubble releases. Then flick on the syringe with your left hand middle fine while holding the syringe still, towards the ceiling.

Eeasy pie, once you get use to it. I JUST finished my injection. Not a spot of blood. Feel fine. Do not be afraid my dear. Be THRILLED. This Enbrel helped me within FOUR days.

My love,

Lizzy

[Lizzy]

Jack wrote:

Just ha a knee replcemrnt 4 weeks ago and was on Embrel for about 2 years prior to knee problem. I have beenoff it for 8 weeks now and can hardly move, does anyone know when I could start shots again. My doc retired and it will be into July before I meet with new doc. Don't think I'll make it that long. Any advise would be appreciated.
Thanks
Jack

Off 8 weeks? You POOR thing. You need to get back on.....as soon as your surgeon takes an EMERGENCY call from you RIGHT NOW!!!!!!!!!! OR which EVER Rheumie or ER doctor will take you in NOW. They will look at your knee for infection risk. Are you NUTS? DO it NOW, get back on the EBREL TRAIN!!!!!! NOW. This is an emergency!!!!!!!!!!

You do not realize that you as a patient are entitled legally to proper pain management and fair practice, in the USA. Which country do you reside in? I could be wrong if you live elsewhere.

Love and HUGS for a speedy recovery.
Lizzy

[Meghan]

Phillis D wrote:

I was diagnosed with RA when I was 28 I am now 48. I have been on many different Medications to treat the disease. Remicade Infusions worked real good for me when I had insurance. Then my company I worked for closed down and no more insurance. So for a while I was on Celebrex and prednisone, during that time my right hand became crippled. I am now going to a research study hospital. 2 years ago I was put on Enbrel, I week later I had a rare side effect of seizures. Now I have to take seizure medication. Now I am on Humira, it's working good. All 3 of those drugs do basically the same thing. After 20 years of being on meds, I can say I'm lucky to not have had any problems till now.

I had a seizure 3 days after I started Enbrel- and quit it right away. Have not had another (it's only been about 2 months). You say you are on anti-seizure meds-- is that just a precaution, or did you have more than one seizure?

[Frank]

I recently came of Raptiva ...after suffering psori since 22 - Im 51 now Rapitiva was a god send not only did it work fast it completely cleared my skin 100% Since its ban Ive switched over to Enbrel 50mg a week with 1 & 1/2 tabs of Metatricate a week....Im on my 7 week and ive got spots all over my body Im concerned that this treatment might not work. Is there anyone out there that has recently changed from Raptiva to Enbrel? Would love to hear your progress
Best
Frank

[AS-29girl]

SPS wrote:

I am 25 yrs old and have been suffering from Ankylosing Spondylitis (AS) for the last 7 years. For the last 6 months I have been on sulfasalazine(salzopyrine) which is giving me moderate relief. The doctors have asked me to switch to enbrel as sulfasalazine may damage the liver in the long run. Can someone tell me if they have followed a similar course of treatment for AS and if so, at what stage did they quit sulfasalazine and start enbrel? I have second thoughts about taking enbrel at such a young age.

Hi I am 29. I also have AS. I was on sulfasalazine for 3 months. It worked at first. Then it started to wear off. I was in so much pain. I didn't move off the couch . I had no life cause of the pain and fatigue. I started enbrel. I lost 2 inches of swelling the first week. I no longer have pain to the touch. I am still stiff and have spasms but I definatley got a lot of my life back. My wife calls it my super juice.