Global Patient Feedback for Enbrel (Etanercept) ( Post a comment )

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Question/Comment:

i used enbrel for seven years out of that seven years i been sick with fevers for five years is there any one out there similar to my case fortynine year old female

Female – Source: iGuard

Question/Comment:

since stopping enbrel after about 3 years, i am noticing a sporadic weakness in my legs where they feel like they are going to give out on me. anyone else experienced this? anyone know why this is happening?

42 year old Female – Source: iGuard

Member Answer/Reply:

Enbrel stopped working for me after 9 years. I took Humira for about 6 months but it hasn't worked either. I have experienced the weakness in my legs, mostly the thigh muscles, but I just figured that it was my RA which is out of remission.

57 year old Female – Source: iGuard

iGuard Answer/Reply:

Enbrel has been reported to cause a numb, burning feeling, and also some joint inflammation. Speak with your doctor, as it may be related to Enbrel or there may be another issue going on.

Question/Comment:

Been back on Enbrel for almost a year and it's stopped working again. New areas have broken out w/psoriasis and the psoriasis I do have has come back. Humira did not work on me, which is why I went back to Enbrel. Seeing my dermatologist in March, thinking about trying the new biologic, Stelara. This injection is given at the drs office; you go back in 4 wks for another injection and then every 3 mos for an injection. Drawback though is the cost w/out insurance, over $4K for 1 shot.

47 year old Female – Source: iGuard

Question/Comment:

used enbrel for a few years and it kept my psoriasis under control (scalp, nails and face). being disabled, i found it was getting too hard to drive, so it was hard to get to the doc for script. doc continued to prescribe the enbrel until dec 2009. i went back, she thought i would be a good candidate for humara & you only gave injections every 2 weeks. was excited. she checked out the meds and learned that they (both) would wreak havoc on my muscular dystrophy. anyone know anything about this?

49 year old Female – Source: iGuard

iGuard Answer/Reply:

Inflammation is thought to play a role in the damage of muscles in patients with muscular dystrophy. Enbrel and Humira both block a chemical called tumor necrosis factor alfa (TNF alfa) that is involved in the inflammation process. Currently research is being conducted to determine how medications such as Enbrel and Humira affect muscular dystrophy. At this time, it is difficult to make a conclusion on whether these medicines improve or worsen muscular dystrophy.

If you have the chance, please follow up with your doctor and ask her more about the information she has learned. Perhaps she can provide the sources where she found the information and you can share them here with other iGuard members.

Question/Comment:

Enbrel has been a miracle for me. No noticable side effects. I've taken it for 14 months, but yes I'd still have bad days once in a while. No drug cures arthritis.

40 year old Female – Source: iGuard

Question/Comment:

I was on Enbrel for a little over 3 years. It worked wonders for the rheumatoid arthritis, but I developed drug induced M.S. from it and also had a persistant fever for the better part of 3 years. I didn't realize how bad it was until I stopped taking it. I have been told not to take any TNF blockers from now on.

41 year old Female – Source: iGuard

Question/Comment:

Ihave been on Enbrel for a really long time .7 or 8 years. It is keeping my skin clear except my knees. a little on my elbows and my scalp. I dont want to ever get off this medicne. I have admit that my arthritis is getting slowly worse. I need pain pills to function. My spine bothers me quite a bit. plus my hips. at night and morning it is very stiff. I hope I dont get sick, I worry about getting sick. Im afraid I wont heal fast. I also worry that my doctor wont renew my prescption for pain meds. I really need them.

50 year old Female – Source: iGuard

Member Answer/Reply:

I understand what you are going thru. Enbrel works well but we still need pain medication. Doctors are staring to not want to give us rxs for pain medication. Now more since this MJ situation. I am worried since they do not understand that we need them to fuction and we do not take them just to take them. Also there is a differance in amts people need.. 46 and 19yr old son with advance arthritis

48 year old Female – Source: iGuard

Question/Comment:

I was on Enbrel for about 7 years for RA. The drug worked wonders. But now, my body has stopped producing blood and I have had 9 blood transfusions in the past 8 months. Does anybody else have this problem and does anyone have any suggestions as to get my body to start working again?

55 year old Female – Source: iGuard

Member Answer/Reply:

I would like to know what the doctors have told you about the fact that your body is no longer producing blood cells. I have been on Enbrel for 5 years and this concerns me because my father had a condition called Myelofibrosis. It affects the bone marrow. This condition is not inherited but I have wondered if Enbrel could possibly cause this. I hope that you are better at this time and that you will respond.

Concerned-69 year old-female

69 year old Female – Source: iGuard

Question/Comment:

I am so thankful for Enbrel. Was on Humira for about 3 months w/no results whatsoever, so was put back on Enbrel. The first year on Enbrel was like a miracle! Was completely psoriasis free in 4 months; however towards the 13th month of being on one injection of Enbrel a week, the psoriasis started to reappear; this is why I was switched to Humira. Again, Humira did NOTHING, in fact the psoriasis became worse and the injection site reactions from the Humira were PAINFUL and ITCHY! I've been back on Enbrel for 3 months now and am slowly clearing up again. I have discovered that even on Enbrel, if your stress levels are high, you will still flare up, just not as severely!

47 year old Female – Source: iGuard

Question/Comment:

I have severe, chronic atopic dermatitis and none of the available remedies are effective for me anymore. My dermatologist has suggested Enbrel. Does anyone with eczema have any experience with Enbrel and if so, what kind? Thanks.

52 year old Male – Source: iGuard

iGuard Answer/Reply:

Enbrel is typically indicated for patients who have failed other drug therapies to control their arthritis, some spine conditions as well as psoriasis and some forms of dermatitis. You should discuss additional details and risks associated with enbrel treatment with your doctor.

Question/Comment:

I ADORED Enbrel - it was the only thing that kept my Psoriasis clear. I was on Enbrel for 14 months taking shots twice a week and the last year once a week.

I was made aware of the Black Box warning for tuberculosis - not a big concern for me as it is not a prevalent disease in my part of the country.

Feb '09 I was diagnosed with Optic Neuritis & had an MRI to which it was determined that I now have Multiple Sclerosis.
I have since been prescribed Copaxone and no longer can take Enbrel. There was no BLACK BOX warning for this.

My Psoriasis has returned full flare and I figure I already have MS - so maybe I'll stop my MS drugs and go back to Enbrel for my Psoriasis. Good Luck convincing your neurologist of that one.

Enbrel is a miracle drug for Psoriasis sufferers - unfortunately I was one of the ones that fell into the "may exacerbate MULTIPLE SCLEROSIS."

42 year old Female – Source: iGuard

Question/Comment:

I have nothing but good things to say about Enbrel. I have severe plaque psoriasis and now I can leave my house without the feeling of dread. I used to go to tanning beds and have done the medical UV light bedthing and have used topical creams and coal tars and everything under the sun and nothing has worked. Only Enbrel. I LOVE THE STUFF! So if I get sick and have to stop taking it for a week and have one or two pop out...so what! Better that than being mortified every time I step outside my house, even feeling self conscence in my house. Shoot, so there is side effects, what doesn't come with side effects?

32 year old Female – Source: iGuard

Question/Comment:

Is toe nail fungal infections common when taking Enbrel? I've been taking Enbrell off and on for the last 4 years(and it works great for my RA but have to go off it frequently due to sinus colds I get from my family) and have lately noticed my big toe nails seem to be getting thicker and more brittle and I think they might have a fungal infection?

47 year old Female – Source: iGuard

iGuard Answer/Reply:

Enbrel works to prevent inflammation and other immune responses and one of its side effects is an increased risk of infection. Approximately 15% of iGuard members taking Enbrel have reported skin/nail problems with Enbrel. However, there are also other factors that can contribute to a nail fungal infection or nail problems. It is a good idea to talk to your doctor about your nail problems so you can get treatment if needed.

Member Answer/Reply:

My husband has been on enbrel for approximately four years, and his doctor always checks his nails when we go in for lab work and his check up. Because this drug weakens your immune system, you will be prone to get more infections of all types. Talk to your doctor who can prescribe something for your nails. Good luck.

50 year old Female – Source: iGuard

Member Answer/Reply:

if u think that you mite have a fungal infection around your big toe, u may want to get it checked by a doctor, and if u do, u need to go off enbrel until the infection is gone, i know how u feel, i`ve been on enbrel for 3 years and i have to go on and off it also, due to infections, and i try not to be around no one with a cold, or anything, i take lysol spray around with me,and hand sanitizer, and use it when i have to use the restroom like at a eating place or something, before i sat on the toleit sit,cause of germs and stuff, which is a good idea, i find it useful for me, you can get the tavil size to carry in your purse, , well hope this helps u, good luck,

47 year old Female – Source: iGuard

Member Answer/Reply:

well now that its been mentioned ,i also have toe nail fungal infections and i am taking Humira,-i have been on these types of meds for about 8 years including remicade,enbrel and no humira,
and i heard that using foot soaks with bleach -like 4 tbsp in a gallon of water -really does help -i soak aout 3 times a week -with great relief -hope that helps

41 year old Male – Source: iGuard

Question/Comment:

I am a 29-year-old male with a rheumatoid arhtirits diagnosis (but who knows, as my doc told me, "all we know is you have an affliction of the joint tissue and we can try various drugs to alleviate some of the symptoms")

. I've been taking Enbrel 50mg once a week or once every other week for about 3 years for my rheumatoid arthritis. It has helped decrease the frequency with which my knee swells, but it still does occasionally swell up (3-5 times per year). I have noticed though that two of my toenails have a fungal infection (which from my research is almost impossible to eliminate) and occasionally have bouts of fatigue. I have not had many problems with rashes or getting sick more often, but definitely noticed the fungus and fatigue.

Enbrel has helped me lead a more active life, but I am concerned about the side effects coming to light recently, especially the cancer in younger patients. Due to this, my hope is to get off the Enbrel and treat my arthritis symptoms holistically through diet, exercise and meditation. I think many people could cure their afflictions with a thorough investigation into dietary changes, but it requires so much effort and digging on your own. Sadly, most of the medical community has not yet embraced the dietary and holistic practices to relieve/cure our problems. Best of luck to everyone!

30 year old Male – Source: iGuard

Member Answer/Reply:

What med's did you use for the fungal infection on your toes. Because my big toe has it under the toe nail. Will it go away.

Source: iGuard

Member Answer/Reply:

I have been advised of the side effects of taking Enbrel.
So far, I have only had to come off it for a while until I
could get rid of a cold and cough. I then was able to resume.
I usually feel well when on it. I have noticedt my toe nails are thinner all though they have not cleared up. It has surely helped my psoriasis, and my arthrities has improved.
70 year old female

71 year old Female – Source: iGuard

Member Answer/Reply:

I don't know if you use it or not, but I found that black pepper will make my symptoms worse. I have psoriatice arthritis and I too take enbrel. I have learned that you must continualy taking the enbrel and not skip dosages. I will do that periodically and found that my condition will get worse. I wish therte was something else out there, I really hate sticking my self in the stomach every week. Since I have switched to the auto injecter it is not as bad. My Dr suggested remicaid I think, but it has to be done once a month by IV, and I live 75 miles from where my Dr's office is. To me it is not worth the hassle of having to drive there once a month. As for the pepper, I have switched to white pepper and it does not affect me like the black pepper did. Good luck!

54 year old Male – Source: iGuard

Question/Comment:

I have had Psoriasis since i was 8 and it started getting real bad back in 2002. I had it so bad that I had it 100% over my whole body..from head to toe. I got so bad that everyone else was wearing short sleaves shirts and sweating and i was wearing shirt, sweater, coat,blanket and still freezing. I have tried almost everything to get it under control and nothing would work. Found out that I am highly allergic to Vasaline, as it almost killed me. I have gotten in touch with a Skin specialist and he introduce me to the Enbrel sureclick. It seems to help me out alot as I can see a tremondous clearer skin. Don't get me wrong I still have plaques but not as much as I used to. Thank God for help of the doctors. I was using two shots per week and was clearing up real good. Now he has me down to one shot a week and it seems to be coming back a bit. If my insurance wont help me on it then he will put me on something else. Hopes that will be just as good if not better. Will keep you all in touch and may God Bless you all as well. >>> Patsy

44 year old Female – Source: iGuard

Member Answer/Reply:

My husband started Enbrel about 2 years ago. He is 37 and his Psoriasis covered almost his hole body.It was very thick plaque. When he started on Enbrel it was the sure click 50mg 2 times a week. After 3 months the insurance com dropped him down to once a week too, and the spots that were clearing up came back. He went off Enbrel and started Humeri he got very sick the day after he took the shot, and missing work is not an option. So then went back to Enbrel. They let him do the 50mg 2 times a week again. Then after the 3 months when they wanted to drop it to once a week he talked them into 25mg 2 times a week instead of 50mg once a week, and that's been working great. He still has small spots with thin plaque in some areas and bigger spots on the caves. That's a huge improvement.

31 year old Female – Source: iGuard

Member Answer/Reply:

I wish you all the best with Enbrel. I was on it for 12 months for my psoriasis; however, after 8 months, it stopped working. Needless to say I was back to the coramax scalp solution and topical creams. Now my dermatologist has be on Humira. Haven't seen much of a difference yet on the new medication, but then I've only been on it for a month. Again, all the best with the Enbrel!

47 year old Female – Source: iGuard

Member Answer/Reply:

I as well have had Psoriasis for years and have been on Enbrel for the past 5+ years. I have had to go off Enbrel in the past due to insurance issues, struggle with copayment changes, etc. If you want to try and stay on Enbrel there are programs out there to help financially for those who need help with the high cost of the medication. Two of the foundations that have been extremely helpful for me are the HealthWell Foundation and the Enbrel EasyStep Program as you can look them up on the internet. Also, go onto the Ebrel website as you may get information on programs and check with your doctors office as they can help you get in touch with an Enbrel representative to help you. I hope this helps and God Bless you too.

43 year old Female – Source: iGuard

Member Answer/Reply:

When I first got Psoriasis it started on my shins, and went to my scalp. This was back in 77. Te Dr. I had at the time made sleep with olive oil in my hair at night and in the morning shampoo my hair with a coal tar shampoo. This really worked for my scalp. To this day it has never come back on my scalp but have it on my shins thighs elbows flanks and ocassionally will bet an outbreak on my face. Thw worst part was that I have developed Psoriatic arthritis and every jointin my bodyis effected. I have tried just about all the pain meds on the market, and now am taking MS contin. Most days it works pretty good for the pain. There are days when I have breakthrough pain and for that I have been taking 5-10mgs of Hydrochodone which is mixed with Aceteminaphine. Unfortunatel sometimes it is not quite effective, because you can only take so much of it in a 24 hour period because of the damage it can do to your liver. When I have a day like that I try to rest and stay as warm as I can. I also take Enbrel 50mg autoclick, for my psoriasis. I tried to take the Enbrel twice a week but I was informed by a Rhuematologist not to take it more than once a week. Sometimes it is frustrating because you have one Dr say do this and another will tell you not to. Lately I am havinf a hard time staying warm, and trying to do any kind of exercise is out oif the question. Sometimes just stand for 15 min. will give me such pain that I want to scream. Would be nice if they could come up with a treatment that would really help and not have so many side effects. Hope you will find something that will work for you!

54 year old Male – Source: iGuard

Member Answer/Reply:

if your insurance wont or can`t help pay for the enbrel, then the enbrel has a foundation where they will pay it for you to take it, they helped me, for a long time till i could get my insurance to pay for it, or ever how long it takes, i would check into it,

47 year old Female – Source: iGuard

Question/Comment:

I have osteoartritus and have had a lot of swelling in the knees since 1992 also I had server psoriasis while I was in the military my rheumatologist. put me on methotrxate when I retired from the military in 1998 I was seen by th VA which did a liver biopsoy and found that I had liver damage from the methotrxate.The VA then put Enbrel 50 mg once a week I have been on Enbrel since 1998 and it has been a real life saver it has cleared up my plaque psoriasis my knees don't swell up and I have had no side affects with out the Enbrel I have trouble walking because the pain and swelling are so bad

63 year old Male – Source: iGuard

Member Answer/Reply:

enbrel has helped me too, without it i coulden walk i will be in a wheel chair, it has been a life saver for me, but i do feel fitig sometimes still, and still sore alot in the mornings when i get up, but it does help, but would be worse without it,

47 year old Female – Source: iGuard

Question/Comment:

My boyfriend has been using Enbrel off and on for the past year and a half. He hasn't been able to stay on it long enough to find out how much it helps the pain. He has RA (a symptom of his Still's Disease) and wanted to reduce or even be able to stop taking so much prednisone. His problem was with infection - first, a cold became bronchitis which then became a lung infection he had to be hospitalized for. Soon after, he went back to the E.R. believing the lung infection had returned only to find out he had blood clots in his lungs. When it was safe to take the Enbrel again, he got a tiny knick on the back of his calf which soon became a huge open sore that he narrowly missed having to have surgery on - and that led to a number of other sores on his leg. I honestly can't believe that his doctor wants him to continue on the Enbrel when every time he starts taking it again, within a month he has some sort of infection - even life-threatening ones. He was supposed to start the injections again, but is delaying it out of fear, which his doctor (who has otherwise been beyond wonderful) totally disregards. Does anyone have any advice??

42 year old Female – Source: iGuard

Member Answer/Reply:

I have been on embrel for 2 years, but before embrel I tried other drugs maybe he could try other drugs. I've learned that sometimes you have to tell your doctor you want to try something else, but you have to be spacific about what you want to try. This takes some homework but worth it.

Source: iGuard

Question/Comment:

You may be interested to know that a doctor in your area is conducting a clinical study to assess the safety and effectiveness of a medication in patients with plaque psoriasis. In this study, patients will switch from Enbrel® to the study medication, which is FDA-approved to treat chronic severe plaque psoriasis but has not been studied in psoriasis patients who are switching treatments.

To qualify for participation in this research study, you must:

• Be between the ages of 18 and 75 years old
• Have been diagnosed with plaque psoriasis
• Have been treated with Enbrel® (etanercept) for at least the past 4 months
• Currently have psoriatic lesions

If you qualify and choose to participate in this study, you will receive an initial consultation, study-related examinations, and study medication at no cost to you. Compensation for travel may also be provided.

To learn more, please visit our website at: www.PlaquePsoriasisStudy.com/index.asp?c=ig


26 year old Male – Source: iGuard

Member Answer/Reply:

Thanks for the information. Have signed up and waiting to hear back.

54 year old Male – Source: iGuard

Question/Comment:

My wife is a Rheumatoid Arthritis and advised to take Enbrel injection 25 mg twice a week. After 2 injection, it is noticed that skin is red in color with slight itching under both eyes, behind elbow of right hand. Kindly tell me it is due to the enbrel dose. What may be treatment for this red color and shall we continue the Enbrel dose?. Meantime we seek appointment of our Rheumatologitst.

44 year old Female – Source: iGuard

Member Answer/Reply:

I have been taking Enbrel for the last 5months, and every time I take it I go into a terrible allergic reactions, with hives and rashes all over my body, including the injection site. These last for 3 to 4 days, my doctor suggested taking an allergy medication like Claritin or Benadryl, but I am really skeptical about taking them with the medication. I also have experience sores in my mouth and other parts of my body, a problem I never had before taking this medication. Right now I stop taking it to see if the sores heal and then start again. I do wish that more information is availble about the sores and RA, because my rheumatologist looks confuse when I tell her about it. I might just change doctors.

28 year old Female – Source: iGuard

Question/Comment:

II have been on enbral since 2004 for anklosing spondalitus. This drug i think saved me from being able to do things i loved. I havn't had any problems at all.No rashes or sinus probelms or anything. I sometimes forget to take it on a weekly basis because i feel so good. I have found that i can sometimes go up to 2 weeks without a shot..I first was on prednisone, which worked, but it elevated my liver enzymes after long use. Like the writer before me said...it sometimes takes a while to find right mix.. I guess i was lucky because i had pretty good relief very quickly once i started..hang in ther people,because i think new things are on the horizon... 50 year old active male

52 year old Male – Source: iGuard

Question/Comment:

I was suddenly hit by RhA one day in June 2003. I went to an emergency room that day. They diagnosed me correctly and gave me Prednisone to hold me until I could get to a rheumatologist.
The rheumatologist started me up with NSAIDs, added Methotrexate and after 6 months moved me to Enbrel and Methotrexate. That worked wonderfully well and has worked for the last 4.5 years. Because my insurance doesn't cover self injected Engrel, I swithched to Remicade administered in a doctor's office. Insurance covered that. But after 3.5 months, the Remicade was doing nothing for me and I switched back to Enbrel.

My only symptoms are nodules on the spots on my fingers that I use a lot and some knuckle enlargement on one hand.
78 year old male

79 year old Male – Source: iGuard

Question/Comment:

I have rheumatoid arthritis since "2003" and just started taking Enbre in September of "2008" I had to stop for 2 weeks because I ended up getting a cough, stuffy nose, sore throat. I stopped for 2 weeks because I was given antibotics for this, it all went away, until just a week ago it came back, I am sure it is from the Enbrel. Should I continue, problems seem to occur when the doctors office is closed. I am also taking 10 mg of predisone,without any of these medications I would be bed bound. The doctor keeps bouncing be up to 60mg of predisone and weaning me down all the time, I am sure this is not good for my body.

52 year old female

53 year old Female – Source: iGuard

Question/Comment:

My 14 year old son has been on a combination of Enbrel and Methotrexate since June. We noticed immediate relief within 2 weeks. He went from not being able to tie his shoes or zip his pants up to being a very normal kid. He currently has a sinus infection without fever and his doctor said to continue the meds. She said to skip only with fever. This is his first illness since starting the meds.

44 year old Female – Source: iGuard

Question/Comment:

I have been o Embre/ 50 mg., since 2000. Before 2000, my R/A was in remessission. But when it came back, it came back in FULL FORCE, it was in every joint in my body, even my jaw. It would start out with red hot spots, then the swellng, which left me unable to move my joints. Enbrel worked for me for a good long time, but now I it's not working, I am having more and more flair ups, I am now having to go back on predisione, to help get the inflamintation down. The everyday and constant pain that I live with is becomming harder and harder to live with. I feel like my quality of life is over and there is nothing I can do. I am however, greatful for the time that it did work. I don't know what my doctor is going to suggest next to help me get this R/A back under control. I am a Christian and I pray daily and I have put this in God's hand. I just wish that I did not have to depend on my family to do everything for me. 51 year old female

52 year old Female – Source: iGuard

Question/Comment:

I have had Rheumatoid Arthritis since Fall of 1984, being a guinea pig with the variety of meds trying to find a regime that worked for me..and have been on Enbrel since Nov. 2000 - it has been a tremendous help to me - wished I had it before the ulner deviation of my hands started. I feel strongly about this med. The main reason I started taking it was I wanted to participate in the Arthritis Fondation's Joints In Motion Marathon program in Honolulu in Dec 2000....I finished the marathon in 7 hr. 35 minutes...and have since participated in several others in the 2000-2004 years...I too have had to stop my Enbrel because of recurring sinus infections, but once they cleared up and I went back on my weekly regime of Enbrel, I seem to be doing very well. I don't like the "new" auto inject system - seems to be more painful (about 20 seconds) but I really haven't noticed any symptoms like the other people have. I have since been diagnosed with discoid lupus, but am not taking anything for that except some topical ointments. One thing to remember - everyone is different and it takes awhile to find the right "mix" to help ease your own pain with arthritis. Good luck to everyone and God Bless.

57 year old Female – Source: iGuard

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