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Medical Forum / Diseases and Disorders / Arthritis / May 2006Remicade vs. Enbrel/Methotrexate
Due to a foul up in getting my prescription for Enbrel renewed I have been off of it for going on three weeks now. My pain is really starting to return now. Especially in my hands. I am hoping to get this resolved this coming week but I have a question for the group. My doc suggested that I switch from the Enbrel/Mtx combo to Remicade infusions. I am not one to make quick decisions without research and this knowledgeable group is one I am turning to for answers. Has anyone here been on Enbrel/Mtx and then switched to Remicade? You may not recall but I have had RA since I was seven years old and I am 65 now. The Enbrel/MTX is the first relief from pain I have had in all those years and it was helping me very much. I am hesitant to switch to the infusions for one major reason and that is portability. My wife and I like to travel and I can take my injections with me. Any feedback folks? Thanks a whole bunch in advance. Bob in Florida > Has anyone here been on Enbrel/Mtx and then >switched to Remicade? [quoted text clipped - 4 lines] >the infusions for one major reason and that is portability. My wife and I >like to travel and I can take my injections with me. Yep. I have, Enbrel helped but then faded out so I switched to Remicade and I have never looked back it put me in remission, but others have faired better on Enbrel so it is an individual thing. I travel a lot and I like Remicade because I only have to mess with it once every 2 months, for others it is 6 or 4 weeks. I hated packing Enbrel around and having to worry about refrigeration, so for me Remicade is more portable. -- MZ My wife and I > like to travel and I can take my injections with me. > > Any feedback folks? Thanks a whole bunch in advance. > > Bob in Florida Hi Bob, Why is the doctor wanting to change a working combo? Do show signs of a loss of control of your immune system? Harv > My wife and I >> like to travel and I can take my injections with me. [quoted text clipped - 6 lines] >signs of a loss of control of your immune system? >Harv LOL. Does anyone with RA have control of their immune system? Thumper >> My wife and I >>> like to travel and I can take my injections with me. [quoted text clipped - 9 lines] > LOL. Does anyone with RA have control of their immune system? > Thumper :-) LOL,,, the quick answer is yes. The long answer takes some education. Harv Ps I have been in remission for a little over a year. It does happen. The thing is I know it could come back next week and I still keep Enbrel in my system. >>> My wife and I >>>> like to travel and I can take my injections with me. [quoted text clipped - 16 lines] >The thing is I know it could come back next week and I still keep Enbrel in >my system. I don't want to argue with you Harv but do you mean you are still taking Enbrel? If so, how do you know you are in remission?. You may be but surely you know that it is rare and even more rarely, permanent. I see what you are asking though. I guess if you asked if he was in remission I would not have responded. Thumper >>>>Hi Bob, Why is the doctor wanting to change a working combo? Do >>>>show [quoted text clipped - 15 lines] > I don't want to argue with you Harv but do you mean you are still > taking Enbrel? Yes,,, I have seen what happens when Methx or Arava or Gold is stopped for awhile. If so, how do you know you are in remission?. Because I do not have to take the once a week shot every week to keep from having swollen joints and/or painful same. You may > be but surely you know that it is rare and even more rarely, permanent. and that is why I take it about every 3 weeks to keep it in my system. I see what you are asking though. I guess if you asked if > he was in remission I would not have responded. > Thumper There is no rule that says you can not ask your doctor,,,,,, why,,,, something is or is not being done. This doctor wants to stop a working anti-tnf drug,,, Enbrel and start another one which is wayyyy more expensive. Its Ok if the doc wants to do that but a person should be told why. In my world,,, but that is one of the reasons me and my 2d RD did not get along..... He did not want to explain a dam thing and I was no wiser after him than I was before him. Harv >>>>>Hi Bob, Why is the doctor wanting to change a working combo? Do >>>>>show [quoted text clipped - 28 lines] > >and that is why I take it about every 3 weeks to keep it in my system. I thought that a lower than recommended dose could cause you to build an immunity to the drug. Thumper > I see what you are asking though. I guess if you asked if >> he was in remission I would not have responded. [quoted text clipped - 11 lines] > >Harv hi bob. first off, do you know why your doc wants to make this switch? if enbrel is working for you, i wouldn't switch. if it is starting to fade (and not just when you miss taking it due to the foul up) then, yes, i'd consider switching. i was on enbrel for a couple of years, but it started fading and i was switched to remicade. (which, unfortunately, fades as well--everything usually does). as for portability, as long as you are home for an infusion every 6-8 weeks, it's MUCH easier than carting enbrel around and keeping it refrigerated. in the beginning, you need remicade more often, but after that, it's not a big deal. however, it's very expensive, so insurance might be a consideration as well. good luck, diane >hi bob. > [quoted text clipped - 14 lines] > >diane I just started getting my Humira by UPS from Merck/Medco and was worried. The UPS guy just rang the bell and left it on my porch. I have a letter on file for my at home business that allows them to leave things for the business without a signature but I didn't expect them to do it with Meds. It came in a styrofoam cooler inside a cardboard box wit cold packs. It makes me nervous though that they left $7500 dollars worth of medicine (90 day supply and I take it weekly) on the porch and since then I have been worried about losing power ,although I rarely do. Thumper > I just started getting my Humira by UPS from Merck/Medco and was > worried. The UPS guy just rang the bell and left it on my porch. I [quoted text clipped - 6 lines] > power ,although I rarely do. > Thumper Do you have a freexer? If so, keep some water bottles in it to be a back up ice supply or just keep a couple of ice packs in your refrigerator freezer. That way you'll always be able to use some ice in an icebox to keep it cool if your power is out long enough for the refrigerator to start warming up. I have the option of getting my Enbrel through Medco Health but so far have been too nervous about them treating it properly to go that route. I go back and forth from time to time, but still keep deciding it's worth $160/year to know it's being handled rightly - though I have to remember to give my small town pharmacy enough lead time on ordering it themselves. But at least our UPS guy in this small town will leave stuff inside your door if it's unlocked. We generally lock the door when we're gone (living in "town" as we do, LOL) but it's great if we can't get to the door readily. Heck, UPS and FedEx both have keys to the church office so they can leave deliveries inside!  SignatureNann remove the Gator cheer to email me Simply the thing I am shall make me live --- William Shakespeare >> I just started getting my Humira by UPS from Merck/Medco and was >> worried. The UPS guy just rang the bell and left it on my porch. I [quoted text clipped - 22 lines] >FedEx both have keys to the church office so they can leave deliveries >inside! Actually I got a letter from Merck to have my doctor call them to review my prescription. They put me on the 90 day delivery without asking. I might have complained but after all I'm getting $7500 worth for a $16 co-pay. Next year my plan calls for mail delivery to be mandatory for all maintenance prescriptions anyway. Thumper thumper, what happened with orencia? weren't you going to try it? diane >thumper, what happened with orencia? weren't you going to try it? > >diane No, I just brought it up here because the FDA approved it for RA. Maybe that'll be next for me but Humira is working right now. Thumper > Actually I got a letter from Merck to have my doctor call them to > review my prescription. They put me on the 90 day delivery without > asking. I might have complained but after all I'm getting $7500 worth > for a $16 co-pay. Next year my plan calls for mail delivery to be > mandatory for all maintenance prescriptions anyway. > Thumper $16 copay?! Wow, great insurance! It aggravates me that they are cornering us into using mail order though. I can get scripts locally, but most of them cost me less through mail order - and I'm on a lot! Curiously, Premarin costs less locally, some weird FDA drug llist loophole according to BC/BS. It, my Enbrel and my prns are the only ones I get locally now. (prns are written for 2-3 times what I take in a month, so mail order wouldn't save much). Living in a town of 900, in a county of 10,000, I really like the idea of supporting our local, friendly, small town pharmcy and pharmacist, but BC/BS doesn't agree. SignatureNann remove the Gator cheer to email me Simply the thing I am shall make me live --- William Shakespeare >>Actually I got a letter from Merck to have my doctor call them to >>review my prescription. They put me on the 90 day delivery without >>asking. I might have complained but after all I'm getting $7500 worth >>for a $16 co-pay. Next year my plan calls for mail delivery to be >>mandatory for all maintenance prescriptions anyway. >>Thumper My insurance did that this year. But I do have to say that I'm saving a ton of money. My three prescriptions used to cost me $30 a month. I'm now getting them via mail order for $29 for three months! And it's so much more convenient to go to the mailbox once every three months rather than making three trips to the pharmacy since they all had different renewal dates. I can renew the prescriptions online and it's great :) Carole > Due to a foul up in getting my prescription for Enbrel renewed I have > been off of it for going on three weeks now. .............. Thanks so much to everyone for your informative replies. Let me address a couple of issues that were brought up. No, the effects of Enbrel were not fading with me. At least, not yet. I just have had trouble getting my prescription renewed this time for some reason. Nothing has gone right. Today I went to my docs office and handed them the fax number for the form to be sent to. They did it shortly after that. Secondly, my RA doc is great. He really explains everything and is sincere about helping me. Thirdly, why did he recommend Remicade? Well, not because the Enbrel is not working. He told me that in his opinion he had gotten better results from it than from the Enbrel/MTX combo. He felt that I would be free from weekly injections too. He left it up to me and that is why I am researching it. All of your thoughts were good ones. I really appreciate all of your perspectives. Your points about Remicade being more portable than Enbrel contradict my own first reaction to the suggestion but after thinking about it a bit I can see that you are probably right. Thanks again everyone. If you want to continue to add thoughts to this thread feel free to do so. I learn much from all of you. Bob > Thirdly, why did he recommend Remicade? Well, not because the Enbrel is > not working. He told me that in his opinion he had gotten better results > from it than from the Enbrel/MTX combo. Have you been in a full medicated remission with the Enbrel/mtx combo? I'm sure you have a lot of joint damage that can't be unddone after so many years of RA, but was the disease in remisssion now? If not, that would seem a good reason to move to remicade. If you were in remission though, you'll have to decide on other factors I suppose. > Thanks again everyone. If you want to continue to add thoughts to this > thread feel free to do so. I learn much from all of you. another factor to consider is how prone you are to infections. I have a give for picking up infections (hey, we all have our talents! LOL) I tend to feel a bit safer on Enbrel than Remicade because Enbrel clears your system faster. I like knowing that I can skip this week's shot and my immune system will kick back up a notch. With Remicade you have a longer, slower ramping back up of the immune system. Then again, it sure would be nice to worry about traveling with Enbrel..... SignatureNann remove the Gator cheer to email me Simply the thing I am shall make me live --- William Shakespeare Bob, go for the Remicade. It has helped me immensely. I give some of the credit to the folks in this support group because it was they that told me to try it because it might make a difference. It has and i'm eternally grateful to those that advised me. For the record I haven't had one side effect yet. My wife is a elementary school principal and she's been sick a few times this winter. Knock on wood but I haven't even had a cold. There are many in this group that know what they're talking about. Sift through the ones that do offer good advice and make your decision. For me I'm glad I did. thelongestday320@aol.com wrote in news:1143033064.231267.81050 @v46g2000cwv.googlegroups.com: > Bob, go for the Remicade. It has helped me immensely. I give some of > the credit to the folks in this support group because it was they that [quoted text clipped - 5 lines] > talking about. Sift through the ones that do offer good advice and > make your decision. For me I'm glad I did. Thanks again everyone. I really appreciate all of your replies and advice. I have another 60 days supply of Enbrel left and have time to make my decision. As I said before my RA doc seemed to lean towards Remicade in terms of what he has seen for results. As I understand it that is an infusion which I believe means it is administered intravenously? Is that a long a painful process or no big deal. It can't be any worse than sticking yourself with Enbrel and MTX once a week. Even that has become no big deal for me now. Never thought I would get so good at that. >>Is that a long a painful process or no big deal.<< unless you have very bad/hard to find veins, it is no big deal. the worst part for me is that it's boring. expect to be there at least 3 hours. the nicest part has been meeting other patients who are also getting treatment. i usually bring a book and never crack it open because i'm talking too much. still, it's a long time to just sit. diane "Diane" <dcham@aol.com> wrote in news:1146075094.610862.92190 @i39g2000cwa.googlegroups.com: > >>Is that a > long a painful process or no big deal.<< [quoted text clipped - 6 lines] > > diane Thanks Diane. Ewwwwh, three hours of sitting? Don't know if I could sit still that long. Ha ha. Just kidding. Well, two more months worth of Enbrel left. Time to think about this decision. The thing that intriqued me was my doc who said that he had gotten better results overall with his patients usine remicade infusions over Enbre/MTX. It may be my imagination but I have noticed that just before my shot day I start getting a bit more pain. Maybe it is because I have not been back on the Enbrel long enough to get it working again. It has been a month since my interuption due to administrative foul ups on my prescription renewal. Who sits -- I lie in this recliner like chair. And I read or knit or work crosswords or sleep. It is a nice three hours. Duckie > "Diane" <dcham@aol.com> wrote in news:1146075094.610862.92190 > @i39g2000cwa.googlegroups.com: [quoted text clipped - 20 lines] > to get it working again. It has been a month since my interuption due to > administrative foul ups on my prescription renewal. >>Who sits -- I lie in this recliner like chair. And I read or knit or work crosswords or sleep. It is a nice three hours. Duckie << actually, they do have recliners and that's nice. yesterday we watched soaps and all the ladies (and this one poor guy) chatted about the characters and remembering them from when we were kids etc. how do you knit with a needle in your arm, duckie? the problem with the three hours is i get no work done. but all in all, this is a small price to pay for slowing the progression of a sucky disease. diane Well it depends on where they put it. I take knitting, some cross-stitch, and several crossword puzzle books. Occasionally, they use one of the veins on the hand portion of my pointer fingers. Then I get them to strap that hand to a board with gauze taped under the fingers so the fingers have something to rest on. Keeps me from moving the finger. I probably shouldn't worry but since that finger bending keeps letting that rubber needle thing slide up and down and frankly it gives me the willies so I like it to stay still. Those days, I do crosswords -- luckily, I can write with either hand. My left is not pretty but I can read it so who cares. I can knit if they manage a vein on the top of my hand and it is not near the fingers or thumb. Depends on my veins cooperating. Haven't been able to knit since we arrived in CA but hope still springs yada yada Do you have a laptop or only a larger machine. Lots of people used to bring their laptops and worked in MA. I am with mostly cancer patients here so not the same vibe in the room. What is your repeat now -- still at every 8 weeks? Duckie >>>Who sits -- I lie in this recliner like chair. And I read or knit or > [quoted text clipped - 9 lines] > > diane duckie, i'm at every 6 weeks, 10 mg. the total max. we've looked into my insurance with regard to humira and orencia, but i am very hesitant to use either because you can't (easily) go back to remicade once you're off. i plan to hang in there as long as i can. i feel pretty good after this last infusion. previous infusions have left me in a flare for a week or so. my RD says i'm weird. she's not the only one to tell me that, so maybe she's onto something. diane I would ask her if you could have one 4 week infusion of Rituxan. If you could get the Remicade to work better it would be worth it. Like you I had not wanted to switch but when Remicade began to fade, I asked my RA about it and he suggested adding the other -- not changing. Duckie > duckie, i'm at every 6 weeks, 10 mg. the total max. we've looked into > my insurance with regard to humira and orencia, but i am very hesitant [quoted text clipped - 5 lines] > > diane |
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