starting enbrel scared

[sandy]

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

[Linda]

I have had Psoriatic Arth for over 15 years and had been on Metrx. for 10 when it just stopped helping. I never liked being on it either. My joints were getting damaged and finally the pain was too much to handle, so I started about 4 months ago. I have never had any side effects like with other things. I never thought I could give "myself " a shot but the needle is like a VERY thin wire and it;s no big deal. I probably should be on a higher dose but I always try to take less than I probsbly should. I was more scared when I was having trouble walking any crying in pain. I watched my mother have knee replacement and wanted to slow down needing any joints replaced!! The medicines you took sound like much more dangerous ones. The only thing that can be a draw back is if it doesn't help what you have! I would never take the IV Remicade and I just hope someday they have a pill form... and that in 10 years when I want to retire it is covered by Medicare as it is costly!! My son had been on Enbrel at 27 and my daughter at 35 for the arthritis, although neither has any joint damage, Enbrel is supposed to even reverse some damage. I'm not sure if it helps nerve involvement but I have felt much better!! Don't be scared!!

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

[sandy]

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

Linda thanks for the advise i am supposed to get it today and its the new embrel injection pen i guess the good outweighs the bad my knees hurt so bad and are so hard and there for its so hard to walk but i try to keep going i prey for you and everyone Thanks so much sandy

[Kathy - Seattle]

I have been on Enbrel for 7-8 years and now it appears to have quit working. This drug has been just wonderful and now I don't know what to do. I'm all flared up in the usual places and the dr. put me back on prednisone (which I hate!). At first I thought I had just gotten a bad batch of Enbrel, but the next months supply was no better. During my time using Enbrel I had a few unusual reactions, including (towards the end of its effectiveness) large lumps (one time on arm, one time on back of neck and the scariest was on my breast!) I knew not to panic, however, and it went away. I also got a weird rash on my arms and went to a dermatologist, who had no clue what it was. Took a biopsy and said the results completely baffled the lab people. It also just disappeared. Anyway, is anybody out there who has found that Enbrel quit working? I'm so sad about it - that stuff was a life saver for me. Kathy

[Pam]

Linda wrote:

I have had Psoriatic Arth for over 15 years and had been on Metrx. for 10 when it just stopped helping. I never liked being on it either. My joints were getting damaged and finally the pain was too much to handle, so I started about 4 months ago. I have never had any side effects like with other things. I never thought I could give "myself " a shot but the needle is like a VERY thin wire and it;s no big deal. I probably should be on a higher dose but I always try to take less than I probsbly should. I was more scared when I was having trouble walking any crying in pain. I watched my mother have knee replacement and wanted to slow down needing any joints replaced!! The medicines you took sound like much more dangerous ones. The only thing that can be a draw back is if it doesn't help what you have! I would never take the IV Remicade and I just hope someday they have a pill form... and that in 10 years when I want to retire it is covered by Medicare as it is costly!! My son had been on Enbrel at 27 and my daughter at 35 for the arthritis, although neither has any joint damage, Enbrel is supposed to even reverse some damage. I'm not sure if it helps nerve involvement but I have felt much better!! Don't be scared!!<quoted text>

Linda, What kind of arthritis do your kids have? My daughter is 24 with JRA. She has been on methotrexate and now they are going to add Enbrel. My biggest fear is the lymphoma thing. We have so much cancer in our family. Has anyone on here ever researched to find any info on how many people actually get lymphoma and what can be done about that? I am so scared for my daughter to take another dangerous drug. I was going to tell her to tell her rheumy to try some conventional arthritis meds first, like Mobic, Celebrex, etc. Any info any of you can give me would be so appreciated! Thank you so much.

[SPS]

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.

[Jason]

I am 32 and I have been on Enbrel since it was approved by the FDA for Ankylosing Spondylitis. Dr. John Reveille is my MD. Dr. Reveille classified my AS as "severe" for my age.

Enbrel changed my life. There is simply no comparison between the other medicines -I tried them all- and Enbrel.

I went from being a guy in his twenties nearing full disability to the guy I am today- I am a father of two boys and I can roll around on the floor, run in the park, play ball- a father. I am also a truck driver for a company that specializes in hauling hazardous waste. I often hand load trailers of waste, I have driven over 700 miles in a day, and I don't even think about AS.

Enbrel will change your life too.

[lisa]

hi guys. I am 46 and have psoriatic for 14 years and
have had both knees replaced about 2 years ago.
A few months prior to that I went on enbrel for 1 month. My swelling improved in my hand and because
i was so freaked out about the possible side affects, when i came down with a respiratory ingection, I immediately stopped the drug and have not been on since then. For all these fourteen years, I have tried treating this annoying problem with non drug therapies, bee stings, mushroom plants,, pycnogenol, chinese therapy, indian therapy, acupuncture, nutraceuticals, diet, etc...
I have been under a great deal of stress this last year and am experiencing a flare up. I have a large family, a great husband, 5 children and a wonderful mom who lives with us and I am helping to care for her, since she is not well. I have strong faith in
God and am asking for His help. However, I still am scared to go on this drug, but I so want to be helped. Any comments??????????

[Robin]

Have been on Enbril 3 month's and haven't really noticed anything, to early maybe? Absolutely no side effects, just numb the area with ice and I don't feel the needle at all! I guess I'll keep waiting for results Robin

[Laura]

Enbrel works wonders on patients with psoriasis also. I have had moderate plaque psoriasis for about 12 years now, and after heavy debate on giving myself a shot twice a week, at 24 I have done so and it has changed my life. Thank goodness for good research. Shots are nothing, piece of cake.

[Phillis D]

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.

[lori rondyke]

i was diagnosed with ra a few yrs ago by a rheumatalogist and was told that it started when i was 30 and i was asked if i was treated for it back then and i wasn't because the family doctor didn't figure it out so i was made to suffer until my rheumatalogist a few yrs ago put me on enbrel. i can honestly say that it hasn't helped me out like it should and i have been on other kinds of medications for my ra and they didn't work either.

[lori rondyke]

enbrel has stopped working for me and i have been on it since this past may.

[Cathy Muskogee OK]

I too, am searching for a solution to help with the cost of Enbrel. I will start the med within the next few weeks, but my insurance only pays a small portion & I will max out my insurance benefit in a few months. Many of your comments about how Enbrel has bettered your life & the side effects of the med have been very helpful. Thanks

[Reggie A]

I noticed recently that the Enbrel syringe as changed slightly and the caps now have a hard plastic cover over the the old rubber needle cap. I wonder if there have been changes with the manufacturer. I feel like I'm not on Enbrel now since this last batch. The lot no. is P068354. I started having those familiar pains in my back and neck from 2 years ago.(Ankylosing spondylitis) Anyone know of any manufacturing changes recently?

[Ruth Arnold]

I have been on Embrel for three years and am reletively pain free. I have had R.A. since I was 26, I'am now 69. I can garden and do my own housework, though I take my time. I have had occasional rashes which dissappear, one at the moment is not recognised by my Doctor, I'am hopeful it will just go like the others. After years of pain I think I have a good life now.

[Ruth Arnold]

Dear kathy,I have had R.A. since I was 26, I'am now 69. I have only been on Embrel for three years and feel great. I get rashes that the Doctor does not really know what they are and they gradually go away.I'am sorry that the Embrel seems to have stopped working for you, can you change to one of the other TFNs.I wish you all the best in the future.In England we have only had the drug for 4years. Ruth Arnold

Kathy - Seattle wrote:

I have been on Enbrel for 7-8 years and now it appears to have quit working. This drug has been just wonderful and now I don't know what to do. I'm all flared up in the usual places and the dr. put me back on prednisone (which I hate!). At first I thought I had just gotten a bad batch of Enbrel, but the next months supply was no better. During my time using Enbrel I had a few unusual reactions, including (towards the end of its effectiveness) large lumps (one time on arm, one time on back of neck and the scariest was on my breast!) I knew not to panic, however, and it went away. I also got a weird rash on my arms and went to a dermatologist, who had no clue what it was. Took a biopsy and said the results completely baffled the lab people. It also just disappeared. Anyway, is anybody out there who has found that Enbrel quit working? I'm so sad about it - that stuff was a life saver for me. Kathy

[Kathy]

Laura wrote:

Enbrel works wonders on patients with psoriasis also. I have had moderate plaque psoriasis for about 12 years now, and after heavy debate on giving myself a shot twice a week, at 24 I have done so and it has changed my life. Thank goodness for good research. Shots are nothing, piece of cake.

I am considering starting enbrel for psoriasis but am very worried about the side effects. How long did you take it before you saw results? Do you have to stay on it forever to maintain clearing?

[Brendan O Donoghue]

I would love an answer to the same question. I am starting next Monday. I have had blood tests, chest x-ray, ECG and TB test (mantou?).

I have plaque psoriasis 48 years, have done all the usual, creams, tars, PUVA, TLO, UVA/UVB etc.

I can put up with a few mild side effects.

I am a little worried about the self injecting. The Enbrel nurse is coming out to me for the first 3 injections.

Brendan

[alex]

i`ve been using enbrel 50mg weekly for 2 yrs now along with methitrixate 25mg weekly and 5mg of folic acid i have psoriatis athritis-28yrs now i`m
44, 2 months after starting i had a heart attack,
but told it had nothing to do with enbrel,so have taken since but finding the benifits are becoming less maybe i`m becoming immune although i hope not
anyway for anyone starting please make sure you cover every question in your head by asking your doc,it makes a helluva difference in quality of life if you`ve beem slowed down by joint pain,and we are all different so what happens to one doesn`t mean it`ll happen to others.Brenden the injection is a dawdle mate take your time and relax.