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Global Patient Feedback for Enbrel (Etanercept) ( Post a comment )
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
Posted: 2009-05-28 12:34:03
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?
31 year old Female
Posted: 2009-05-19 09:54:55
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
Posted: 2009-04-07 13:54:09
iGuard.org 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.
Posted: 2009-04-10 11:56:04
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
Posted: 2009-04-22 15:35:50
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
Posted: 2009-04-22 16:18:34
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
Posted: 2009-04-27 09:27:11
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
Posted: 2009-03-05 17:08:18
iGuard.org 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.
Posted: 2009-03-18 08:03:17
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
Posted: 2009-03-25 21:57:37
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
Posted: 2009-03-29 15:49:25
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
Posted: 2009-02-08 00:37:41
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
Posted: 2009-03-06 11:55:02
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!
46 year old Female
Posted: 2009-03-06 17:28:50
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
Posted: 2009-03-07 14:46:57
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
Posted: 2009-03-29 16:24:19
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
Posted: 2009-04-22 16:34:40
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
Posted: 2009-01-05 14:37:45
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
Posted: 2009-04-22 16:39:14
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
Posted: 2008-12-27 12:56:09
iGuard.org 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.
Posted: 2009-01-28 13:46:22
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
Posted: 2008-11-21 14:58:39
Answer/Reply:
Thanks for the information. Have signed up and waiting to hear back.
54 year old Male
Posted: 2009-03-29 16:00:50
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
Posted: 2008-11-16 23:48:25
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
Posted: 2009-02-20 17:52:33
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
Posted: 2008-11-13 14:50:57
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
80 year old Male
Posted: 2008-11-11 09:23:35
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
Posted: 2008-11-08 18:15:47
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
Posted: 2008-10-30 21:27:54
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
Posted: 2008-10-08 10:50:51
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
Posted: 2008-09-25 10:04:09
Question/Comment:
After having only limited luck on Humira, my doctor put me on Enbrel. While the injections don't hurt as bad, it is nowhere NEAR as effective as the Humira was. Oddly enough, the Enbrel was the first to be marketed for Psoriasis and Psoriatic Arthritis, but Humira did a better job for both. I'm switching back to the Humira, since it gave me slightly better results than the Enbrel for the pain and swelling. I had to quit the Enbrel for 3 weeks when it was discovered that I had a nasty sinus infection, and I saw absolutely no increase in my pain whatsoever, so I'm wondering if the Enbrel is doing anything at all for me. I've had my diagnosis for almost 2 years now, and no one has been able to find the right balance of meds for me yet. I'm going to be trying Doctor #3 in November. I hate the injections, especially since they're not working very well for me.
29 year old Female
Posted: 2008-09-24 12:07:31
Question/Comment:
I have been taking enbrel since jan 2004 and find my hair is getting very thin.
78 year old Female
Posted: 2008-08-04 16:08:11
Question/Comment:
I have been on Enbrel for two years and it helped a lot with the pain and swelling. It made me feel normal again but, it very slowly quit working over the past 9 months. Now the pain and swelling is back and I have been having headaches daily, my hair is also falling out. Now my doc wants to put me on Humira.
51 year old Female
Posted: 2008-07-27 19:55:11
Question/Comment:
I have been on Enbrel for two years and it did help me very much. However, I noticed I was bruising very easily and then noticed my hair getting thinner. Questioned my doctor about this and was told it could not be the Enbrel. After researching Enbrel online, I am quitting taking it effective today. I will tell my doctor when I see her in two weeks. I may hurt more but I want my hair back! I only hope it does come back. The pain relief was wonderful at first but slowly I have noticed it not helping as much. Good luck everyone.
68 year old Female
Posted: 2008-07-13 12:57:23
Question/Comment:
Enbrel has worked wonders for me. It took the doctors 7 months to diagnose me with RA and the RA doctor 4 months to get my medication regulated. Nothing worked well until he put me on Enbrel. He told me that it could take 3 months for the Enbrel to kick in and it started working in 3 days. I think it is a miracle drug. The only drawback is that it does cost a lot of money. I'm thankful that I have insurance through my job to help pay for it, along with the Enbrel Quick Assist Program. If you have RA and haven't talked to your doctor about Enbrel, you should, it could save you a lot of pain.
51 year old Female
Posted: 2008-07-06 00:26:22
Answer/Reply:
Count yourself lucky that it only took 11 months! I have been waiting since I was 18 months old to be told what is wrong with me and even now they are not 100% certain what type of arthritis I have. How do you go with the injections?
26 year old Female
Posted: 2008-09-19 22:31:22
Answer/Reply:
You really have to try different things until you and your doctor find what works. The combination of Methotrexate and Sulfalazine with a low dose of Prednisone is where some doctors start. The Enbrel has been magic for me, but not for others.
80 year old Male
Posted: 2008-11-11 09:27:20
Question/Comment:
If after about a month of using it you don't have more energy and less pain, move on to some other form of DMARD.
49 year old Female
Posted: 2008-03-10 00:00:00
Question/Comment:
It is much easier to take a smaller dose twice a week than it is to take the larger dose once a week. The 50mg dose stings when taking it but not the 25mg injection so if you've only ever used the single injection a week and weren't satisfied, ask your doctor about splitting the dose & you may be pleasantly surprised at how much less discomfort you have.
20 year old Male
Posted: 2008-03-10 00:00:00
Question/Comment:
ENBREL HAS LIMITED MY PAIN FROM A SCALE OF 25 TO 6, SINCE MY ILLNESS IS SO SEVERE I DID NOT HAVE ANYTHING I THOUGHT TO LOOSE WAS ONLY A LOT OF PAIN THAT I HAD TO LIVE WITH SINCE 1999. THEN THE RA SEEMED TO BE IN REMISSION UNTIL ABOUT 2002, THEN THE RA COME BACK FULL BLAST, WHICH MADE MY LIKE MORE DIFFICULT TO DO. IF I COULD WRITE A BOOK ABOUT MY EXPERIENCE, I WOULD. THIS IS FROM A WOMAN WHO HAS BEEN TO HELL AND BACK . I CAN LIVE TO TELL MY STORY, BUT MY GRANDMOTHER CAN'T, BECAUSE SHE DIED WITH THIS RA IN 1968. THIS DISEASE WAS IN EVERY JOINT IN HER BODY. COULD NOT WALK,COOK,CLEAN HOUSE,ETC. MY MOTHER AT THE AGE OF 12 HAD TO DO EVERYTHING. THERE IS SO MUCH TO TELL.
43 year old Female
Posted: 2008-03-10 00:00:00
Question/Comment:
I am quite happy with the results I have from taking Enbrel. I have not experienced any side effects nor have I had any other problems with using this medicine.
38 year old Female
Posted: 2008-03-10 00:00:00
Question/Comment:
i woulddefinitely recommend trying it, it releived almost all my symptoms
68 year old Male
Posted: 2008-03-10 00:00:00
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