I was diagnosed with RA in April 2008, after crawling on my teeth the last few weeks of calving season. I had "internet diagnosed" myself, but finally got to the doctor for verification and medication. I was told that I had RA, was prescribed MTX and given a rheumatologist's appointment two months away.
Well, I got on the phone and the computer, and refused to give up. I'm in a rural area. The largest city in the state, Billings - is 60 miles away, and is known for its excellent health care services. I tried to get an appointment at the "competing" hospital. Their first opening was in August. A few more e-mails and phone calls, and I had an appointment with the original rheumatologist the following day. I am not assertive. I have learned to be aggressive when it comes to health. I buried my husband in 2006. He had been diagnosed with pancreatic cancer four short months before. We spent those months mostly in the hospital. What struck me the hardest were people who had no one there for them. My husband always had me as his advocate. Now I am forced to be my own advocate. I hope that I will be able to keep this job description.
I continued on the MTX, with no real relief, but hair loss and acne. Nothing like pimples on top of your wrinkles.
By June, my rheumatologist started me on Remicade, but would not take me off the methotrexate, no matter how I begged.
I was able to function better after a while. I never have had any morning stiffness, but the joint pain has been ongoing. I'm also dealing with osteoarthritis; osteopenia;a bum knee; menopausal issues following a hysterectomy; and my neck and shoulders have been shot for years. In other words, I am accustomed to chronic pain. And much of my pain is not related to RA.
In September I started having allergy (hay fever) type symptoms. I took allergy medications and sinus meds with no real relief. By October, I thought that I was going to die:
http://www.karbonkountymoos.com/2008/10/11/rethinking-global-warming/
When I showed up in the ER complaining of chest pains, they moved pretty quick. Oh, I forgot to mention my history of pulmonary embolism. Oops.
But no, it was the methotrexate that cooked my lungs. No more of that stuff for me. I feel very fortunate to have the team of doctors that I have. They're great, they can't help their schedules. I've been assured (after CT scans and biopsies) that the lung damage was temporary. My mother died of interstitial lung disease, so the last thing I wanted to hear was the addition of my lungs to my list of "issues".
In February my liver enzyme numbers started rising like a bad moon. Nothing was new or different, and you know that they check those numbers all the time. When I was told that I could not have my Remicade on the day I came in for my infusion I was close to ballistic. I had been limping for two weeks, so now what do I do?
Okay, back on the dreaded pred. My mother lived on that for ten years. I know what it can do. I do not want any part of it. This has been a major bone of contention between my rheumatologist and myself. Apparently, I've never been on it long enough for it to address my symptoms. We'll see.
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!
Thanks, Lene.
Any more voices of experience out there?
Hi -
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
Oops, not a 3 hour drive each way - 3 hour round trip drive to rheum drl. Still - too long!
Ellen
I 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.
I was on Humira and had awful side effects, leg rashes swollen feet and ankles, the specialist thought I had heart failure when he saw my legs. Anyway changed to Enbrel and I'm having no problems apart from using the pen, I cannot press the thing down, I am bruising all over trying, I never had any problems with the Humira pen, why can't the just keep it simple like the humira pen??