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Untitled Comment
Lene Andersen
Tuesday, March 10, 2009 at 09:06 PMEnbrel vs Humira
Ellen
Sunday, March 15, 2009 at 05:56 PMHi -
This is what I know:
Remicade is the 'brand' name for Infliximab. the "mab" stands for Mouse AntiBody (m-a-b). Remicade neutralizes the inflammatory factors in the blood. When you get an infusion, you cannot have any open cuts. I mean any: a paper cut, etc. You hae to be very careful for the first 2 weeks because your immunity is down. You have 3 "loading doses" of the IV, each 2 weeks apart. Then normally get an infusion about every 8 weeks.
Enbrel is the brand name for Eternacept. It is a chimeric protein (2 mirror image proteins attached together. I believe it is a manufactured 'designer protein, not mouse protein. It binds to the inflammatory cells (B cells I think) in the blood and "escorts" them out of the body (excreted). The "half-life" of Enbrel is only 3 days. This means, that if you do get an infection, you are at less risk. You can do Enbrel as a 50 mg injection (with an autoinjector-pen or self-injected regular needle & syringe), OR you can do 2 injections per week of 25 mg each, either prefilled (you don't have to mix it up yourself) or a kit where you mix it yourself. I do the mix-it-yourself because that was how I started (the 25 mg prefill was not available then) and my doctor said, if it's working fine, why change? (I agree).
PROs and Cons: I didn't like having to go for IVs - much more time-consuing. SOme people prefer that, they don't have to do anything but be there. For me it was a 3-hour trip each way to the rheumatologist office, and another 3 hours for the IV. Too much time away from work. I like being in control. I did 'freak out' the first time I gave myself a shot, but never had a problem after that (except a few times when the stuff didn't mix well. Once I had to request a replacement dose kit because there seemed to be a speck of something in it. They had me send it back, and sent a new one. LESSON: Order the next delivery to arrive just before you run out, in case something goes wrong!
I have to mail-order the Enbrel to be delivered (it's FedEx overnight, you can ask them to leave it without signature) Curascript Pharmacy (required by my insurance) is very good. I am covered by both my husbands and my own insurance, so money is not an issue.
Enbrel is half the cost of Remicade. But I believe that MEdicare covers Remicade - I'm not sure about Enbrel. Both of these have to be PRE-APPROVED, normally - your doctor should take care of that. with Remicade you will never see a statement - the stuff is shipped to the doctor's (or facility's) office.
I would consider either Remicade or Humira if Enbrel stopped working or went badly for me (Lene's comment about muscle Pain/fibromyalgia may be relevant. I had problems with muscle spasms before Enbrel, can't say for sure if it's worse. I just thought maybe the Enbrel wasn't working as well. I had to go off Enbrel for a couple of surgeries last year, and the problem has disappeared. I'm much more regular on my Enbrel schedule since being off. I also take Celebrex PRilosec (omeprazole), touchy stomach & liver.
I have never taken Methotrexate because my liver enzymes were high when I first got to the rheumatologist. (He apparently doesn't think Remicade & high liver enzymes are a problem because that's the first thing he gave me. I had two infusions before refusing to go on with REmicade, due to a lot of itching, and the fact that on the 2nd infusion they practically drowned me with 100 mg of Benadryl in the IV and I'm lucky i got home alive!. Driving 70 miles home after 100 mg of Benadryl is not an experience I'd recommend to anyone....
I know one person who has been on MTX for 20 years for psoriatic arthritis, and has never had a problem. I know another person who has been through the works, pred, MTX, ____phoresis (can't remember the word), Enbrel & Remicade, and he said, avoid Prednisone and MTX if you possibly can- he had bad experience with them. He does fine on either Enbrel or Remicade, has done both (depending on insurance when he switches jobs), and overall he prefers Remicade, because it's more convenient and easy for him (no accounting for taste !) He's a great guy who's had RA since his twenties - he's 60+ now.
So - talk to people, pray, and then go by your gut feeling. and see what happens and switch gears when and if you have to, is my recommendation.
Ellen
Thanks, Ellen.
karbon
Monday, March 16, 2009 at 03:24 PMI will be starting Enbrel once all the connections are made between the insurance co & the rheumy.
I know there are folks taking MTX without problems. However, that obviously does not include me. It wrecked my lungs. I am fortunate that it was temporary damage. I didn't want any part of it from the beginning because of its weird and annoying side effects, but the rheumatologist insisted that the Remicade (like most of them) work best in conjunction with MTX. If he had even breathed the words interstitial lung disease once I would never have taken it.
Like I've said before - it's too bad this isn't a "one side fits all" disease. Trial & error is the way we all have to go.
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Untitled Comment
suestang68
Wednesday, March 11, 2009 at 03:13 PMI've been on just about every RA med, and with all of them they said I had to take methotrexate. I HATE that stuff! Now I am on Orencia. I don't have to take anything else with it. I'm not sure if my good days are from that or the prednizone. I've weaned myself off of the Pred, and am now experencing some inflamation again.
SO, it's hard to say what is best for you. I think, if they'd let you take humira, and NO metho, it'd be good ....but I'm not a Dr.
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Actonel - I have a few opinions on this one!
Ellen
Sunday, March 15, 2009 at 06:09 PMHi - Anyone considering bisphosphonates (Actonel, Fosamax) ask your dentist what he/she thinks about these.
OSTEOPENIA IS NOT A DISEASE>
Yeah, so I(& you ) have low bone density!. That is not yet Osteoporosis!
RA is linked to osteoporosis because there is inflammation at the cellular level that keeps the bone from normally maintaining itself.
I also know at least one orthopedist who thinks that the whole bone density thing is bogus. Look at the fact that they compare us (maybe at 50- 60 years old) to 20-30 year olds. My bones don't break that easily! I have taken a lot of calcium/magnesium and it doesn't seem to make any difference (my GP agreed). I added vitamin D - it got worse faster! I'm not sure I'll bother to take any more of those stupid bone density tests. I may not live long enough for it to make a difference!
What I WILL do is - try to eat right, lots of veggies/greens/ and EXERCISE. That's tough when you're limited, but there are things you CAN DO. You have to find what is right for you, whether it's walking, using a recumbent (sitting back) bike, sitting in a chair doing stretches and tiny little dumbbells or whatever. START SOMEWHERE - watch the Discovery Health Channel (or Leaning Channel in some areas), Dr. Mehmet Oz, and get inspired! Even without equipment there are things you can do in your own home. I also just started TAi CHi for Arthritis - it is WONDERFUL for mind and body.
Yes, prednisone puts you between a rock and a hard place. I don't have any answers for that.
Good luck Karbon, I'll be thinking of you!
Ellen
Osteopenia waaaaaaay before RA diagnosis.
karbon
Monday, March 16, 2009 at 03:17 PMOkay - I have an opinion on it, too. I was told that I had the bones of a 70 year old at 42. Results of a dexascan ordered after a hysterectomy with complications. That was supposed to be a 2 day hospital stay which turned into a 21 day stay with two more emergency surgeries. Six months previous I had an emergency "appendectomy". This was where my "extreme" endometriosis was discovered. It had invaded my bowels, etc. I almost died that time, too. At least I had my PE while in the hospital, since I had had three out patient surgeries shortly before that incident. I too, live 60 miles from the hospital.
At that time I was an active farmer/rancher. My GP told me to wait a year and a half & have another scan to see if there was more damage. After having a foot & a half in the grave a few times, being told that I have 70 year old bones and not being proactive was not an option. I saw the doctor who read my scan and went over some ideas. Miacalcin didn't help. Actonel has consistently improved my bone mass. None of my other doctors (and believe me - I've got a team) or dentist had a problem with it.
Because I have stomach issues, I apparently am not getting the absorption that I should. Well, I went on Forteo for a year. Guess what? Daily injections and more bone loss. I was disappointed, as was the doctor. I was the first (and only) person he's prescribed it for that it hasn't helped. I am now back on a weekly Actonel pill. I may be switching to Boniva injections to address the absorption.
re: Osteopenia waaaaaaay before RA diagnosis.
Ellen
Monday, March 16, 2009 at 04:00 PMOkay, that's good to hear! I don't mind hearing the other side!
Getting via IV will avoid the esophagus problems that some people have.
I wasn't quite as young as you - I was around 51 when I got the first DEXA.
You sure have been through a lot. (Wouldn't it be nice to know why our bones are doing this?)
My doctor says Forteo just doesn't work. I asked about it.
I won't take bisphosphonates because of the risk of jaw necrosis myself. I have lots of problems with my teeth, they seem to be just disintegrating, and that would just not be safe. I go to the dentist 4 times a year (alternating dentist with periodontist) and follow directions religiously, get extra-strength prescription fluoride toothpaste, and the problems still continue. My dentist just shakes his head. (My periodontist thinks I do a great job - my gums are not deteriorating further - go figure!)
I also have 'moderate, not mild' reflux, mucus in my throat a lot of the time. (though it was sinuses at first, but no such luck). I take stuff for that too. Unfortunately, that might be part of the reason I'm not absorbing well, but I can't stop it either, due to other risks.
So - I do the best I can with what I've got.
You are certainly a survivor and I applaud you!
I also
Correction - I goofed on "MAB"
Ellen
Monday, March 16, 2009 at 04:12 PMIt's "monoclonal antibody" not "mouse antibody"
My apologies, especially to Lene.
Remicade and Hurmira both end with "mab" and are monoclonal antibodies.
I still recall that Remicade is made with a process using mouse protein, but Humira is not. Enbrel is different. Here's a quote from the prescribing info: "Etanercept is produced by recombinant DNA technology in a Chinese hamster ovary (CHO) mammalian cell expression system. It consists of 934 amino acids..."
I think "cell expression system" means, they use the cells from the Chinese hamster ovary, not a live animal. (Not to get into the animal use controversy....)
Ellen
Old bones
karbon
Monday, March 16, 2009 at 04:54 PMI know that the actonel staved off worse degeneration. That's important when you're always moving - riding, moving cows, running tractor, herding pets, climbing over fences and running away from rattlesnakes (only when I don't have a shovel in my hand).
I had to do something right away. The thought of paranoia of breaking a hip will slow you down when you can't afford to slow down. It was the right thing for me. Which doesn't make it the right thing for everyone. But it worked for me.
When I lived in NY, I shuffled papers. I worked hard, but nothing like what I have been accustomed to the last 15 years. Hard physical work, which undoubtedly has contributed to my strength and the fact that I've beat the daylights out of this poor old body. No happy medium.
re: Old bones
Ellen
Tuesday, March 17, 2009 at 11:47 AMBy the way - my osteopenia was noted several years before RA dx as well (didn't mention that). My level was something like 1.4 standard deviations below the 'norm' the first time, 2 years later it was I think 2 standard deviations (osteopenia) in the femoral triangle, or whatever they call it, and the 3rd time (after adding calcium) it was still lower. But not quite to osteoporosis. (I was not given an age equivalent, my GP said "For some reason, you're not making good bone" with much concern. My comment about osteopenia not being a diagnosis was not strictly my own, I did read a journal article on Pub Med (see below) that stated a view that osteopenia was not a disease condition, that it was being overmedicated and that there was no evidence (because no study had been done) that it would help people with osteopenia become normal. In other words, it was/is still an "off-label" use. But I'm glad it is working for you, because I may yet get to that point the way I'm headed. My rheumatologist told me (with a smirky smile) that he does the Boniva infusions in his office, and that way I would not be worried about the effects on my esophagus (there have been more reports of esophageal cancer now with the oral version of the bisphosphonates). However, I am still concerned because of my dental health - I do not want to take a chance on jaw necrosis, and I'm willing to live with the risk of osteoporosis because as far as I know, there is no history of it in my family even with the RA history (grandmother, aunt, cousin, nephew).
PubMed is a service of the US National Library of Medicine that includes over 18 million citations from MEDLINE and other life science journals for ...
www.ncbi.nlm.nih.gov/pubmed/Ellen
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Humria works great for me Karbon
flushot2007
Tuesday, March 31, 2009 at 06:07 PM
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Congratulations on having learned one of the most important things about having RA: how to be a good advocate for yourself. It is an invaluable skill.
I've been on both and it's a bit of six of one and half a dozen of the other. I started on Enbrel and it worked well for a while, but I have fibromyalgia and it really aggravated the muscle pain. Switched to Humira two years ago and the side effects are very manageable and I'm very happy with it. Enbrel is based on mouse cells, which can cause certain allergic reactions in some, although I know people who have been on Enbrel for years without a problem. Humira is based in cloned human cells (or something, I'm vague on the chemistry) and that may be why some people find it easier to tolerate. Actually, come to think of it, isn't Remicade based in the same sort of chemistry in as Enbrel? That may mean that you might tolerate Humira better. I'd recommend that you ask your doctor if there's any particular reason to recommend one over the other (and if I'm on to something about Remicade in Enbrel being similar) and if they say no, then maybe it comes down to which one is more convenient - the injection schedule for Humira is every two weeks, but I believe Enbrel is every week (although that could have changed since I took it). In my experience, Enbrel worked faster, but like I said, I've had a better overall experience with Humira. As any other RA medication, it's probably a matter of trial and error. You could start with one and if that doesn't work switch to the other one and hopefully it will.
Good luck!