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Medical Forum / Diseases and Disorders / Arthritis / April 2006leaving enbrel out
I am wondering if the enbrel isn't working because I am doing it wrong. I was told you could leave it ont he counter to warm up to 20 minutes, I usually only do 15, but I have never had it sting when it goes in, maybe the first time only slightly. Is leaving it out this long maybe why it doesn't seem to be working> Didn't know if that could be the reason for all the pain in my feet coming back and everywhere else, I think the only thing that doesn't hurt is the tip of my nose!! Thanks Becky >I am wondering if the enbrel isn't working because I am doing it wrong. I >was told you could leave it ont he counter to warm up to 20 minutes, I [quoted text clipped - 5 lines] >Thanks >Becky It should still work. Sometimes it takes longer. It took 3 months for it to work for me the first time and could be longer if you happen to be flaring. Then again it doesn't work for everybody. Thumper Thanks Thumper I have been on it now for 8months, It was working I thought at the beginning but am not sure now. Thanks again Becky >>I am wondering if the enbrel isn't working because I am doing it wrong. I >>was told you could leave it ont he counter to warm up to 20 minutes, I [quoted text clipped - 14 lines] > Then again it doesn't work for everybody. > Thumper Becky - One thing we have to remember is that Enbrel as well as any of the other disease modifiers are not a cure. We will still have flares and disease activity. It is only the hope that one of these will keep the remissions greater than the flares. I started Enbrel three weeks after it came on the market. I had little flares from time to time but always went back into the nice quiet stage I was in after being on Enbrel after the first month. But then the past year...whoooow! Huge flare. But ya know what? It's worse when I have to stop the Enbrel for more than 3 shots. I know it's still working. It's just my disease process is greater than the relief Enbrel can give me right now. Now for a few questions. One - Where do you get your Enbrel from? Do you get it mail away or local? Are you sure it's being handled properly before you get it. One thing I learned is that when I ordered it from my mailaway pharm, it was shipped 3 times before I get it. First Amgen shipped it to a central warehouse who them shipped it to my mailaway pharm who then shipped it to me. Only the Amgen shipment was known to be correctly packaged.The mailaway pharm was not packaging it correctly in their shipment to me and could not answer such questions as to how the warehouse shipped it to them, how long it sat out before it was picked up or was refridgerated after receipt etc. After the 6 months I was getting it from mailaway, I had considered stopping Enbrel because my response was so poor. But when I started getting it locally and it was only shipped from Amgen to Target, my results improved immediately. Two - since your response has changed, have you had any other changes in meds? Have you tried stopping Enbrel to see what will happen? Also, did you always use the pre-mix kind or did you ever mix it yourself? Maybe it's something in the premix that's doesn't agree with you. My dr kept me on the old formula as she knows how sensitive I am. Just a few things to think about it.....DiW Thanks Diane, I always get the enbrel from the local Walgreen's store, it is the pre filled ones. I guess I am just not wanting to really truly believe that I have this terrible disease. It was pretty mild before and I keep thinking maybe they were wrong and taking all this medicine maybe is making me have it worse, not true I know but excepting that you have something is half the battle, and I guess I have not! I haven't stopped either the mtx or the enbrel, when It took the mtx last night it made all my joints hurt more than ever and the neck muscles were so sore I could hardly move and then got sick to my stomach, never had this before and have been taking it for over a year, I take 17.5 of the mtx, go figure. I see the doctor on the 14th and will discuss all the great responses with him, I leave for a long trip to Palm Springs CA on May 20th for 2 wonderful weeks of hot weather and want to very much not be a burden down there!! I am praying it will all come together. I guess from the commercials on TV and what I had read I thought once I started enbrel it would be just pain free all the way, it sure worked the first couple of shots or felt that way, guess I was a little over anxious. thanks for the response Becky > Becky - One thing we have to remember is that Enbrel as well as any of > the other disease modifiers are not a cure. We will still have flares [quoted text clipped - 28 lines] > > Just a few things to think about it.....DiW >Thanks Thumper >I have been on it now for 8months, It was working I thought at the beginning >but am not sure now. It may not be working. I am on Humira now and it wasn't working properly until my rd doubled my dose. I feel great now except for a sciatica and back problem brought on by excess weight. Maybe he'll switch you to Humira. Thumper >Thanks again >Becky [quoted text clipped - 17 lines] >> Then again it doesn't work for everybody. >> Thumper Becky. I think you should be able to leave enbrel at room temperature (say 65-70 degrees F) for around a couple of hours and it should still work. Re the pain. My enbrel didn't kick in really for about 3 months. Even after 2 years I still get a lot of pain. My pain and stiffness is less than it was before I took enbrel, but is more than I would expect from reading other people's experiences. Also, the pain I get is greater than I got when I had a long remission induced by fenclofenac and a shorter remission induced by sulfasalazine. Peter Thanks Peter, This disease is truly a pain in the butt!! Like I said in another post I truly don;t think that I have excepted that I have this, and I am always the person who helps everyone, and it strong and solves everything and not use to be feeling poorly or not be able to do something and don't like help, guess that will have to change, I know I am a stubborn learner!!! Thanks again and hope that you not in to much pain Becky > Becky. > [quoted text clipped - 9 lines] > > Peter Becky--as for enbrel--it took awhile to get to full measure--and though it helps, there is still damage from before--one of the things I hate about the various ads is that they are so RAH RAH--I am better but not well and certainly not as I was before this disease 30+ years ago--of course there is some aging factor to take into account--but I refuse to admit that I am 30+ years older--in my mind I am still 20--LOL--the body however is about 120----as far as acceptance, I have had good days and bad days on that and still do and this is 30+ years later--I work on staying in the now and making a gratitude list--I have come to understand that I have been gifted with a level of compassion for others in pain that I would never have had without RA--hang in there--and share your stuff with your doc--enbrel might not be the thing for you and there are other things to try--  SignatureLove, Alix Always remember, a cat looks down on man, a dog looks up to man, but a pig will look man right in the eye and see his equal". - Winston Churchill Becky. RA Destroyed my self confidence and ruined my career. It changed me from a young energetic person into a good imitation of an old man (at age 44) in a matter of a couple of months. Yes it is a rotten disease and it ruins people's lives, but don't give into it. I think we all fight the pain and do the best we can. Life may be a misery sometimes, but at least we ARE alive. Best wishes Peter > Thanks Peter, > This disease is truly a pain in the butt!! Like I said in another post I [quoted text clipped - 17 lines] > > > > Peter > Becky. > [quoted text clipped - 9 lines] > > Peter Thank you for speaking with such honesty and truthfulness. Sometimes this disease does what it does quickly and sometimes (like myself) is takes many years with a slow decline in our abilities to do most things. It is the mental battle with depression that does the most for a person to step back from life and the way we live it. This is where this newsgroup is most effective with support and understanding. I find the way Peter's view of the world and how we live in it,,, very close to my own. We are all going to loose this battle with life and inflam.arth but sometimes its about knowing when to step back in a way that we can battle tomorrow because of what we have done today. Some of this battle is out of our control because we do not mentally control our immune systems and the damage that it does sometimes is very quick. I have seen and known people that have more damage in two years than I have had in 25 years and I say this without pride because it is how well the medicines work for us and not necessarily anything that you or I have done but we do make choices that help or hurt us. Doing nothing is not a good choice and as long as it is being done the bigger the jump the damage has on us. Thank you for your words Peter and for being here to say them. Harv Harv and Becky. Thanks for your words. ASA has given me moral support for which I am always grateful. If I can repay a little of this for others, I will do what I can. In the words of Stilwell "Illegitimis non carborundum" ("Don't let the b----rds grind you down.") Peter Peter, Thanks for you comments, I do don't feel near the same as I use to be, I was always the person who would be the first to volunteer for everything and be in charge, not anymore if I try I over due and pay for it for a week. It is important to remember that we are alive, my brother has MS so bad that I feel guilty for even complaining and never do around him, he has almost lost his use of his legs, a wheel chair will be in his future soon, and worse, he has given up he is so depressed I try and talk to him and tell him I know how hard it is, but sometimes I think it is harder for a guy, they think they have to be the provider and he has young kids and I know he wishes he could do things with them, he was an avid sports nut before he got hits, he has the kind that is progressing all the time never any remission of the disease, When we stop there is always someone worse than us but as human as we are we have our moments of our pity parties, but have to remember to be thankful for what we do have, which I am great friends and 2 wonderful sons and a loving husband!! Thanks again Becky > Becky. > [quoted text clipped - 33 lines] >> > >> > Peter Becky.... I was on Enbrel for about 6 months, and it didn't work for me at all. I have RA as well as AS. I just started on Humira. I had 1 injection so far. I am crossing my fingers that this works. I also take MTX and Prednisone.As far as leaving it out to warm up, you can leave it out for a half hour. Maybe your Rheumy will switch you to Humira. Good luck! Sue Sue thanks, I am not sure about Humira, I don't know anyone that takes that but if it is a shot you give yourself, I am willing, are the side effects the same as enbrel? I don't want to do the infusion which I believe in remicade, but will see what he says. I am also noticing that all the lymph nodes in chest and under arms seem to be inflamed not sure what that is all about. it seems like it is always something. Becky > Becky.... I was on Enbrel for about 6 months, and it didn't work for me > at all. I have RA as well as AS. I just started on Humira. I had 1 > injection so far. I am crossing my fingers that this works. I also take > MTX and Prednisone.As far as leaving it out to warm up, you can leave > it out for a half hour. Maybe your Rheumy will switch you to Humira. > Good luck! Sue > Sue > thanks, I am not sure about Humira, I don't know anyone that takes that [quoted text clipped - 4 lines] > all about. it seems like it is always something. > Becky That is one of those things your RD needs to know about. Harv Hi Becky!! First off, I would certainly talk to your rheumy about the lymphnodes. There have been cases of lymphoma with Enbrel. I have been on Enbrel for almost two years now, though I have ankylosing spondylitis instead of RA. It wasn't the miracle for me that it was for some. But I just kept on working with my rheumy (and when she said that I had to stop trying and face the fact that I had this disease and would always be in pain, I dumped her and got a new rheumy) to find a med combo that worked for me. I am happy to say that I have been relatively successful. I am on Enbrel, Methotrexate (injectable), Azulfidine,Prednisone (down to only 2.5mgs), Clinoril (NSAID) and Soma at night before bed, for the fibro. Just changing from oral methotrexate to the injectable form did WONDERS for me-and it was the exact same dose!! I asked my doc why the injectable worked so much better and he babbled on about the kidney and/or the liver sucking up about 25% of the oral dose while with the injectable dose that does not happen. Since switching to it, in combination with my other meds, I am alive again! I can't do a whole lot, but I can work and mostly take care of my house and family without a lot of pain, unless I overdo. I like to say that I have ankylosing spondylitis, but it does not have me. Continuing to work with my rheumy, a doctor who has the same goal as I do....to be pain free....has helped me a lot. Of course I had to go through three docs to find the right one, but it was worth it. I realize that pain free is a lofty goal, but now I am almost there. Don't give up...there are a lot of meds and combinations of them out there. I hope that you can find the right one or combo of them. Good luck, Char Char, Thanks for you advice and kind words. I will talk to my doctor when I see him on the 14th, I just had my yearly physical and I think my doctor was going to call my RA doc because she found quite a few swollen ones she said, ones I didn't even know were there. I take the mtx but in pill form 17.5 and don't really have to much problem except lately the last couple times my stomach has bothered me and for some reason it made all my joints get really stiff, who knows. Thanks again Becky > Hi Becky!! > [quoted text clipped - 27 lines] > Good luck, > Char hi becky, i like your attitude. i also have a sibling, a sister, with progressive MS. when i hurt from RA, thinking of her keeps me from my pity party getting out of control. is your brother on antidepressants? they've helped my sister a great deal. she's one of those inspirational disabled people (can't use her legs at all and is losing the use of her arms), but she would say it's all owing to the antidepressant. :-) diane Diane, No he isn't and we wish he would, he just recently quit all his medication for everything, felt that he was not getting any better and didn't like putting chemicals in is body. He is on a natural kick, juices everything and went to a natural path, but he gave him some sort of stuff and then B vitamin shots and now after 2 weeks he is probably worse than he ever has been. I wondered if the shots would increases his immune system and cause him to feel worse. He views anti depressants as a weakness that he can't handle it, I wish I could convince him otherwise. Thanks Becky > hi becky, i like your attitude. i also have a sibling, a sister, with > progressive MS. when i hurt from RA, thinking of her keeps me from my [quoted text clipped - 3 lines] > arms), but she would say it's all owing to the antidepressant. :-) > diane it must be very hard to watch your brother suffer with depression when there is treatment. i just don't get why people still view depression as a weakness instead of a medical condition. hard to see him go off his meds, as well. my sister went through that phase long ago, working with a PT who said she could alter the disease without meds. she got much worse during that period and i always wonder if she'd be as bad off as she is had she stuck to her medicine. ah well. hugs, diane |
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