<p>Anybody have any experience with Humira or Embrel or any other Tumor Necrosis Factor blockers? </p>
<p>DH has severe systemic psoriasis and we drove to Dallas today to see the leading international psoriasis doc, who is putting him on Humira right away. They gave us this OED-sized embroidered canvas box filled with Humira literature, a practice syringe, a DVD on self-injection, and a laundry list of potentially lethal side effects from these sorts of immunosuppressant therapies. He has to get monthly TB tests and bloodwork, a nurse is going to come out and teach us how to do the injections, and three clinics across the country will be monitoring his health during all this.</p>
<p>Reading about the (admittedly slim) chances of deadly opportunistic brain infections and spontaneous development of multiple sclerosis wigs me out pretty significantly, and I logically know that the quality of life improvement that he’s very likely to experience will almost certainly outweigh the minute risks of something bad happening, but I’m a little skeeved out anyhow. (The tire blowout we had on the highway on the way back to Houston probably didn’t do much to calm my frazzled nerves, either, but luckily <em>that</em> trial is done and dealt with!!!)</p>
<p>In an effort to not feel quite so helpless through all this, I drove to Walgreens this evening and bought hand sanitizer and bleach wipes to vigilantly keep infections at bay… Has anybody been on this stuff before? Was it bad? Are ya’ still alive and kickin’? I think just a squidge of anecdotal evidence that this is really a good thing will do wonders for my overwhelmedness-induced paranoia this evening. Happy pharmaceutical stories welcomed here!</p>
<p>I’d like to give you a happy story, but our experience with Enbrel was both positive and negative.</p>
<p>A close relative of mine had a terrible case of psoriasis that he struggled with for years. His doctor tried everything (with the exception of Enbrel), but his psoriasis only got worse. When my relative’s quality of life reached its nadir, his doctor prescribed Enbrel as a last resort. </p>
<p>My relative showed immediate, dramatic improvement. He felt better than he had in years. About eight months into his course of treatment, however, he developed a MRSA sepsis infection that almost killed him. He recovered after many weeks in the hospital, but he never fully regained his health. He died recently, or almost two years after he first starting taking Enbrel.</p>
<p>Aibarr, my relative was elderly, while your husband has youth on his side. Still, there are many risks associated with this class of drugs. The question I’d ask myself before taking Humira or Enbrel is this: Is my quality of life so poor that I’m willing to accept these risks?</p>
<p>Timely question for me. My dermatologist OK’d Humira for me months ago, pending my rheumatologist’s OK. He said OK but thought it was largly for vanity, that my psoriasis isn’t that bad. I have to admit that after reading of the risks, I’ve put it on hold.</p>
<p>Yep, unfortunately, it’s not a vanity thing. He’s 33, and now it’s starting to eat into his joints, which is the only reason why we’re doing this. He, and now we, have been controlling it for 15 years using extremely expensive topical ointments, and the itching has been cutting into his quality of sleep so we’d bought a really nice bed and made him as comfortable as possible. Between him and the cats, I vacuum up a jammed-full canister of dander per week. He’s very matter-of-fact about it and will change shirts in public after soccer games, and it’s not on his face or his hands, and he’s married to a fine lookin’ woman if I do say so myself, so it’s not a matter of his being self-conscious. We were fine with all that… but as soon as his joints started aching in the morning, we looked at each other and knew that it was starting to get systemic and that we needed to follow up.</p>
<p>The doc, who is also president of the International Psoriasis Council and has about a million amazing credentials, estimated 50-75% body coverage, so I definitely trust him… He says that they have about a thousand patients on TNF blocker therapy and that they still haven’t lost a single one, nor have they had any single patient end up with irreversable side effects.</p>
<p>Mapesy… oof. Yeah, my husband is young and has the constitution of an ox, so I’m going to hope that he’ll be just fine, and will be extra-careful about keeping him away from germs. Cleveland, thanks for the PM.</p>
<p>Oh, aibarr, that sounds stressful. I’m definitely not at that point yet. I’m putting the Humira decision on hold and counting my blessings. Best of luck to the two of you with the decision.</p>
<p>aibarr-my sister is currently traveling so my facts might be slightly off. I am going off my memory. I know she has used Embrel in the past. I don’t think she is presently using it. She has suffered from RA and severe psoriasis for many years. Over the years I know she has been on different medications. At one time her arms and legs were almost entirely covered in psoriasis. She now has few patches and they are very small. If I recall sometimes a med will eventually stop working for you. I know she used methotrexate for several years. With that drug she had to not drink alcohol. She did have some liver problems on Methotrexate. She presently is using Remecade which she gets at the dr office. I know she has been on the Remecade for at least the last 4 or 5 yrs with good results.</p>
<p>aibarr, my H is in the same situation as your H. He has psoriasiac arthritis and has been on Enbrel for maybe 5 years. I can’t remember how long it’s been but I will say that his quality of life is much much better.</p>
<p>He is a new person after he started Enbrel. He has so much more energy and the dibilitating arthritis has stopped completely. His psoriasis is better but not gone, he’s on a lower dose to just stop the arthritis but not cure the psoriasis. The psoriasis gets better every year as he has been on Enbrel.</p>
<p>Giving himself injections has been no big deal. He learned very fast and gave himself his first shot. He is an engineer so reading and following directions is his forte! He’s been on Enbrel that he has to mix himself, a once a week shot which was like a pen (easier to inject but hurt more than the needles). Now his is on a premixed syringe which he does twice a week. This works better than the once a week dose, he just feels better, he can tell when he hasn’t been on his Enbel and when he needs a shot.</p>
<p>My H has not had any problems with infections. He did have a heart attack last year though. We do not have any evidence that the psoriatic arthritis and the Enbel had anything to do with it, but I will always wonder. He’s now on blood thinners which combined with psoriasis is awful but we cope as best as we can with that. He is not good at keeping thing sterile and doesn’t even worry about that and still has had no problems with infections. He hasn’t even been sick really since he’s been on the Enbrel.</p>
<p>Good luck to your H. Mine has only positive things to say and it has changed his life.</p>
<p>I have had RA since my late teens. After starting Humira a couple of years ago, my life has been transformed. My joints are more mobile then any time I can remember and my energy level is why beyond my teenage son and twenty-something daughter. I self inject with the pen every 2-3 weeks and it is no big deal.</p>
<p>Methotrexate is out of the question for us, unfortunately, since we plan on trying for kids within the next couple of years, and men have to be off the stuff for at least three months (says the FDA) before getting their babymomma pregnant. In my pre-appointment research, I found that the FDA says three months off the stuff, I said absolutely at least six months off the stuff, and the doc said he wasn’t going to chance it at all. Made me trust him a little bit more.</p>
<p>Not drinking alcohol isn’t a problem… My husband has gone from cutting out alcohol, to cutting out caffeine, to cutting out sugared drinks, to cutting out sodas, and is now drinking only sugar-free Propel and water (with the occasional root beer as a special treat). He has <em>far</em> more willpower than I do!!</p>
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<p>Phew. That’s what we’re hoping for… My husband plays indoor soccer and has always been really athletic. He also conducts, and has a possible chance at inheriting a regional orchestra. If he had to give any of that up at the age of 33 because of arthritis, that would bite… Plus, the poor guy just wants to not itch anymore. There are many, many worse ailments to have, and we’re so lucky to lead the lives we’re leading, but… it just breaks my heart to see him so downtroddenly frustrated at the constant itchiness, and to watch him sigh at the gallons of skin lotion and scads of band-aids that he goes through to try to keep from bleeding all over the place when he absentmindedly scratches something the wrong way.</p>
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<p>They gave us a practice pen without a needle to get used to figuring out how it works. Interesting that the pen hurts more than the needles… After we get into the regimen of it all and are okay with the spring-loaded pen, I might mention switching to learning how to use an actual syringe that’ll hurt less. We’re both a little weirded out at the idea of injections right now, but we’ll get used to it.</p>
<p>Thanks for the feedback so far, folks. It’s really helpful…</p>
<p>One of my kids recently started Humira - finished loading doses and is on a regular dosage now. No side effects at all other than a little bruising around the injection site which is to be expected and is already feeling better (a different illness.) In our case, the tradeoff (in terms of scary possibilities) was between an uncontrolled illness and the long-term damage it could do and the risks of the drugs, but previous drugs being used carried similar risks and were not working effectively. If you want to know more, you can PM me. I will say that Humira (or the company that makes it) is pretty incredible in terms of working with patients and making it as easy on them as possible. They have a 24 hours nursing hotline, etc. and plans that help reduce co-pays, etc. It’s a very expensive drug.</p>
<p>I’ve heard the Pen hurts more than the needle – but it’s much easier to use. Humira burns some going in – because the molecules of the medication are extremely large. Icing the area helps. But my kid says it’s no big deal and she’s always been somewhat shot phobic. She does not feel the prick at all – just the burning of the medicine. The important thing is to not react to the loud sound the pen makes.</p>
<p>aibarr- for my sister it has definitely changed her life. For her the swollen joints prevented her from doing many of the things she loved. She has a life back.</p>
<p>I take Remicade (which is similar) for IBD, and so far the biggest problem I’ve had is that my weakened immune system has led to me catching a lot more colds/flus. But its put my IBD into remission for the last 3 years, so I’m not willing to stop using it.</p>
<p>Oh aibarr :(. I’m so sorry to hear about your DH’s condition, and the necessity to begin taking such a formidable drug. I’d be scarred/skeeved/freaked out at the prospect also. I know nothing about this class of drugs, and even less about Psoriasis, but I think it’s a good sign that he’s so young, and otherwise as healthy as a horse. Statistically speaking, this class of drugs must be providing greatly improved quality of life for a lot of people. I’m sure your H will be one of them. </p>
<p>…I know the answer to this question is probably a resounding “no”, but has there ever been an indicated link between the presence of massive environmental allergen exposure (such as to pet dander), and autoimmune disorders like Psoriasis? Just wondering, not trying to offend or anything.</p>
<p>I worked for many years with a teacher who has RA. She was one of the very first to use Enbrel. It was astonishing the difference it made to her! She’d had joints fused–and here she was running down the halls. She’s been using it for ten years without issues.</p>
<p>Oh, no worries. I’m a scientist and would consider all possibilities equally. =) There hasn’t been any link. DH has been around dogs and cats his entire life, and the psoriasis didn’t spring up badly until he actually moved out of his mom’s house and into the dorms for college (severe psoriasis usually turns up at a certain age, and it’s hereditary-- his mom and paternal uncle have it, too, but not nearly so bad as he does). I haven’t read about any such link. There’s very little data available as to why flare-ups occur, but with my husband, it has a lot to do with humidity (a wet climate helps), stress (stress makes things flare up), exercise (exercise helps), exposure to sunlight (exposure to sunlight helps), and swimming in saltwater pools (chlorine dries out his skin, but the salt seems to help a lot). Other than that, the basic presence of psoriasis seems to have some genetic basis, but it’s a mystery as to why some people develop it and others don’t.</p>
<p>Thanks for the great advice, everyone. I really appreciate it. I passed some of your comments on to my husband last night, and he seemed impressed by the wealth of knowledge that CC possesses. =) I knew I could rely on you all!</p>
<p>Aibarr, a few years ago I went to a conference on IBD with top experts in the field. One lecture was on risk/benefits of treatments with particular attention paid to drugs like Remicade and Humira. What was most helpful was a chart he put together in which he listed all the chances of certain things happening – being struck by lightning, being in a plane crash, being in a car accident – a whole host of things. In that chart, he put in the chances of various serious possibilities from the drugs – e.g. developing cancer. Needless to say, just about everything else bad that could happen far exceeded the risks of the drugs. In addition (and this applies more to IBD), he listed the dangers of surgery – which many IBD patients face – and again the possibility of something bad happening with surgery was many times greater than the possibility of something bad happening with the drugs. In short, we take lots of risks. It is more dangerous to drive or to be in a car than to take Humira, but most of us do that. I found looking at those statistics to be very reassuring. When you just look at the warnings and stats for Humira, it’s scary. But if you put it in context of all the other risks we take, it’s less so – especially when the gains can be so great.</p>
<p>That really is reassuring. When I was looking through everything on the way home, the literature said that something like one patient in 3800 being treated for psoriasis ended up contracting MS… I told that to my husband, and he got an incredulous look on his face and said, “How do they know that guy wasn’t going to get MS in the first place??” So we felt a lot better after that.</p>
<p>I’m still going to make any coworkers who cough on me gargle this can of Lysol I’ve put on my desk, though. Everybody’s been passing around the same cold for about a year and a half, and I’m tired of getting sinus infections… Maybe I’ll be able to raise the general health within the company by being a total germ warrior. ;)</p>