I've had PsA for a few years now, and had been reasonably well controlled on methotrexate, but am getting to the point where I am starting to have more "bad" days than good (which, for me is usually foot and hand pain, and the dreaded "brain fog" which gets in the way of my work). I have been *so* fearful the biologic agents before finding this forum, but am slowly getting the message that we should "fear the disease" more than we "fear the meds".
The biologic agents have some potential serious side effects associated with them (e.g. leukemia, etc.) which, I'll admit, scares the bejeebers out of me! Could anybody who's been in my shoes (where I am just starting to look at the biologics, and am starting to research the risks) help me by sharing how you put these risks into the proper perspective? I'll admit to having the same kind of fears when I started the MTX (and still cringe a little bit at the idea of injecting this "poison" into my body each week), but I got over it (mostly). I think I could be doing better than I am on my current regimen, but my hesitation is mostly based on fear of taking something that could (theoretically) kill me. Many of you seem to have taken that plunge already, and most seem to be better for it. How did you get past that fear?
I’ve been on Enbrel for two years now. The long term use of NSAIDs and Prilosec cause me much more concern personally. I have finally been able to take a long break off of them and plan on continuing. My blood pressure has risen in the last year, my hearing is not what it used to be, and I saw a recent study implicating proton pump inhibitors as a cardiac risk even to those without other risk factors.
The biologics actually worry me less. The increased risk is for lymphoma, but simply having PsA puts you at increased risk. The actual increased risk is fairly minimal. . . Sorry I don’t know the stats on this one.
In terms of getting over the fear, there is a very real risk of damage and systemic health problems that will occur from the disease, and a small theoretical risk associated with the use of meds. Your doctor would not recommend the biologic unless it was necessary. We’ve got a saying here, fear the disease, not the meds. Most people seem to do well with biologics, and your doctor will be monitoring how you are doing.
The fact that you have an auto-immune disease puts you at higher risk of developing certain types of cancers - lymphoma is the one most often cited.
Since biologics are given for auto-immune diseases, they picked up guilt by association. That's when the FDA made them have a black box warning.
Since that time, several careful studies were done to see if biologics actually increase the risk of cancer in patients who take them. The results have pretty much been negative - there's some debate over non-melanoma skin cancers.
So the good news, although your risk of certain cancers is already increased, taking a biologic probably won't increase it any further.
GonzoPsA, I totally understand where you're coming from. My fear was of pretty much every med available for PsA. When my rheumatologist mentioned Sulfasalazine, I said no way. MTX, no way. Biologics, absolutely not! All the TV ads for Enbrel and Humira convinced me I'd have to be crazy to risk all the SEs I could expect--and illnesses like TB, bacterial infections that could be deadly, or leukemia! I rationalized it would be safer for me to live with active psoriasis and PsA than suffer the dangers the biologics posed. Until I just couldn't take the symptoms anymore. You'll know when that time is. When I did my first Enbrel injection, I thought this is it, I'm now risking my overall health just to get rid of some pain. Why can't I just put up with the pain? The biologic probably won't work anyway!
Well, Gonzo, it did work--and fast! After the first injection I noticed a huge difference in my energy level. The stiffness disappeared quickly, too. I've had some ongoing problems with my feet and back, but that's from not treating my PsA for 6 years after diagnosis. My back was always really stiff. Getting up from bed or from sitting was excrutiating, but when I moved the pain would lessen. However, the damage was progressing. For a couple years I had severe neuropathy in my feet and soreness in my arches. There again, damage was happening. Those are the places with the worst damage--I had PsA pain in many other joints, but luckily, other than some crooked fingers, etc., those other joints don't seem to be damaged.
I do have fears being on Enbrel. My white cell count is low and my doctor is watching that. But I'm exposed to germs frequently and I haven't caught any serious "bugs". I mostly fear Enbrel is going to stop working and I'll have to try other biologics. I don't like not knowing what the future holds, but we never know that, do we? I couldn't imagine continuing on with the pain/sickness I had 19 months ago--I just couldn't do it anymore!
I hope I have helped convince you to not worry so much about the biologics. I feel less afraid of the future knowing biologics might just keep me from becoming disabled from painful, damaged joints.
Wow, this is great information! I was in a chat session with Seenie, expressing this concern to her, and she encouraged me to post the question. I'm so glad I did! Thanks to you all for the replies! You've calmed my fears considerably!
You asked about getting past the fear. By the time I was diagnosed, I'd already lost my knees, my hips were showing some wear, and I had erosions in my feet. Over the previous decade, I'd felt progressively worse, suffering from fatigue and depression. My rheumatologist (for a reason I will never understand) thought that my PsA was mild and that I was doing just fine on the usual DMARDs. Then, within a year, both hips went to bone-on-bone. I knew, at that point, that my PsA was severe, and this was confirmed when I switched rheumies. Their only treatment suggestion for me was a biologic, asap. I now feel better than I have in two decades, but there has been substantial damage done to my body, my career and my lifestyle.
My fear was never about the biologic. After diagnosis, but before I got aggressive therapy, I was afraid of joint destruction. I was terrified that I would have to live with chronic pain. I dreaded the thought of disability from PsA damage, and the lifestyle compromises that I'd have to make if that happened. I feared fighting fatigue and trudging uphill for every step, each and every day. Oh yes, I had fears, and with good reason.
Going on the biologic turned the course of my disease -- and my life -- around. Unfortunately, it was too late to avoid all that I had feared.
I'm another one who waited way the heck too long before seeing a rheumatologist and beginning treatment.
I've already had my left shoulder replaced because I waited too long. It's not anywhere close to normal nor will it ever be, Both of my knees are bone on bone. My right hip must be replaced. My left hip is damaged but not as badly as my right. I have cervical spine issues and am bone on bone between C5-C6 and C6-C7, which contribute to my left shoulder/arm never working "right" again. My right shoulder must also be replaced sometime in the future.
I don't know how much could have been mitigated/slowed, possibly prevented if I had been diagnosed and in treatment in 2008, 2009, 2010, or 2011. Probably a lot.
I have few regrets in my life--too late to change what now is--but injecting Humira for the last three years has given my life back. Do I wonder about the future? Yes but I would rather have some fear than I would be back the way I was in 2012 and the years before.
Gonzo, this is interesting. Your thread has taken a turn that we usually don’t see here: we’ve put our rear view vision goggles on. We’ve also laid bare (eeeeeekkkkk) our inventory of damage, something that we don’t do all that often. Usually, we are a forward looking and constructive group.
In my case, delaying the use of a biologic agent was not a decision on my part. I was undiagnosed, and biologics weren’t available during that decade. Then, fifteen years and two knees later, I was diagnosed, but I had a rheumatologist who assessed my disease incorrectly. But the result was the same: I had had PsA for twenty years before I received aggressive therapy. In the first ten years, I was undiagnosed and unmedicated, and the disease slowed me down significantly and impacted my work and my family life. In the next five, I lost my knees. I retired before I really wanted to, on a reduced pension. In the five years after that, I was diagnosed and on DMARDs but I lost my hip joints and the comfortable use of my feet.
I often wonder, if I had been diagnosed in the first decade, and placed on DMARDs, how I would have been. In the five years when my knees were crumbling, if I had been prescribed a biologic (Enbrel was new in the early years of this century), how things would have gone for me. Would I have retired when I did? Would I have lost my knees and hips? Would I be able to walk and hike now? Who knows? And really not a productive line of thought for me. But for you, it could be a cautionary tale.
All I can say really is that I got to a point at which I thought the disease was going to kill me. That's how I felt anyway & I think of myself as pretty robust. If there was any truth in that thought at all, it might well have taken a long time & have come about via co-morbidities but I just wanted to live, literally and in the sense of 'having a life'. I've got one now!
I presented with all the indicators for severe disease progression: high inflammatory markers, quite a few very swollen joints, late diagnosis (possibly very late diagnosis). I am very much aware of folk here who have got a lot of damage and varying degrees of disability from this disease and I feel very fortunate in that the drugs seem to have helped me to avoid these outcomes so far.
Well I'm going to disappoint. You see I'm leaving a few days to climb on a cruise ship and walk my daughter down the aisle. Well actually it will be on beach in Key West. I don't have time to pull all the "numbers together" Well I do but........ Heres the thing. I'm enjoying the pre-cruise "glow": planning a dive trip, of course some snorkeling, and kayaking through a mangrove forest. Things pre-biologic I would not have considered. In fact pre biologic I had lost my mechanics career something I had spent 16 years developing just to end up in laboratories and teaching. Not a bad career, just not what I planned on. How many people can say they developed a pair of pliers that sell for $16,000.00, that's what I did before PsA (used them too)
We Took a long trip in the med and informed the world, that was my last. For a couple of reasons. I was too dang young to be on a scooter (sorry seenie) I was in incredible pain. (thank god there was a coffee house in the Amsterdam Airport - I don't remember the flight home) and the heart docs told me I either needed a new one or I was to soon be a goner. (We didn't know then my endocarditis was caused by the PsA)
The other thing that happened on that trip was I thought I got a weird skin disease from the Dead Sea. Turned out it was the P. (it had reared its head before) That started a chain of events that lead to a fairly new drug called Enbrel. I misunderstood the Data at first glance I thought my chance of developing a cancer a particular were 1 in 10 in 10 years. At that point I figured great. That's a worthwhile risk I'll do it. (Did I mention my sister who had the spondylitis form of PsA died from long term exposure to NSAIDS and steroids about this point) The pain the loss of mobility etc made it worth the risk. As it turned out, the risk was closer to 1 in hundred in 10 tears. Sounds horrible Huh? Well consider this if you weren't taking the biologic you chance of getting this cancer is 1 in 132.
Your chance of developing cancer in your lifetime is 1 in 6 (with or without PsA) yet no one I know is hobbled in fear because of it.... (BTW since then there is one rare form of cancer that only happens to teenage boys that has an increased risk that is spread across the whole poulation the data doesn't explain it quite those terms. The rest of cancer rish the same OR lower. The bulk of the cancer talk comes from vitamin salesmen who continue to dominate key word searches on the internet)
So yes, a slight increase in some possibilities. as opposed to a 100% chance of permanent disfigurement, pain and likley disability. I will tell you this I spent some time in a wheel chair. Its not a great place to live. There is a reason WHY early and aggressive treatment for PsA is now the norm...............
IF you want the numbers I'll dig them up when I get home. But like Seenie I LIKE the turn this discussion has taken.
Oh, it’s a rare occasion when LWPsA goes in this direction. And I should probably say “thank goodness”! But every now and again it’s great to take this turn.
I’d like to engage tntlamb on one point: “… as opposed to a 100% chance of permanent disfigurement, pain, and likely disability.” We have a lot of members who we never hear from, and we often point out that those people are probably just living life with and around their PsA. Some people are fortunate to have disease that is mild and stays so. Those people are not disfigured or disabled. They are probably in some pain, mind you. My own Mom had undiagnosed PsA, and lived with it, thinking she had a series of one-off aches and pains related to ageing. (How did I know that she had an undiagnosed disease? That’s a story for another day. LOL)
So I’m not sure that saying there’s “a 100% chance …” is fair. I would agree, though, that by not treating or undertreating this insidious disease you have virtually a 100% chance of suffering avoidable misery of some sort. And unfortunately, you don’t get a chance to pick and choose.
Since starting aggresssive treatment (first with Enbrel and then, when that failed, with Humira) I’ve had no involvement of the spine. I don’t know if it would have ever happened, but I am grateful not to have this very painful manifestation of PsA. Unfortunately, my feet continue to show some deterioration, although I think it is probably slower than it would have been without the biologic. What we do know is that biologics work best axially, on the spine. For that protection, I am extremely grateful.
Actually Seenie, I'll stand by it. Whether people recognize it as "age" or PsA is the question Not sure if you remember Caroline A. Chang, Alice B. Gottlieb& Paul F. Lizzul (LOL) But they printed the first widley accepted article and research about how different PsA is from Sero-positive atrthritis's back in 2011 (its in Nature Reviews Rheumatology7, 588-598(October 2011)|doi:10.1038/nrrheum.2011.125, you will have to get it from your local medical library as I'm not sure its on line)
The jist of the article was the development of new guidelines called PsAJAI and CPDAI. The reason was as many patients were being dimissed because their "pain" didn't match their symptoms. Remember your new rheumy teaching her resident the same except SHE was not dismissing the pain. What they have finally figured out is that ALL inflammatory seronegative spondyloarthropathy is progressive. the only difference being rate of progression. The pencil in cup type deformation is not always seen sadly but its there.
The only concern is when that progression turns to symptoms. As you note, for many it can be later in life or take a while. BUT when it does its too late. Even with treatment as Six Cat Lawyer and I can attest to. (and you) The bottom line is really simple, treating is far preferable to not treating ESPECIALLY if avoiding treatment is the result of what might happen from the treatment as opposed to what will happen if not. Everyone progresses. I will admit I let the impression it is always severe.but that was really because I listed the results in the wrong order. Pain should come before disfigurement as the disfigurement I was referring to is often only seen on studies. (X-ray etc) and is often referred to as "arthritic changes" too frequently thought of as wear and tear from inflammation and not the result inflammation caused by disease.
I agree with Seenie and Lamb "that by not treating or undertreating this insidious disease you have virtually a 100% chance of suffering avoidable misery of some sort. And unfortunately, you don't get a chance to pick and choose."
All you have to do is look at me. I know there are people much worse off than me but I *am* in a wheelchair for long distances, i.e., coming into work, going to court, going to concerts, going to the mall, seeing my various docs.
I agree with Lamb, it ain't the greatest life--but I'm not sitting on my couch. My husband and I are living our lives. He *hated* it when I wasn't doing anything. *Hated it* because he thought I'd given up. Now, he's happy with what progress I'm making. I ask him a lot because *I need* that reassurance.
I have a ritual of counting to five when I get up--and sometimes, I'm right back down because the hip isn't ready. In a staff meeting last week, I had to breathe through some pain and then stand up two other times just to kind of "put everything back together." That ain't the greatest either--I very much dislike drawing attention to myself--I chose to stand because it was either that or even worse pain.
I walk as much as I can but today, every step hurts. Tomorrow, who knows. I suspicion I could have prevented/slowed it if I were diagnosed/in treatment sooner. I do know it became worse when I missed the ledge of our walk-in shower last year.
I said all of that to say this. My friend, Nancy, had to retire from being a federal public defender (a job she loved and was good at) because of RA. I'm still working as a state public defender (a job I love and am good at). I am blessed with that and so many other things, including the ability to hug my husband, a fantastic rheumatologist who is so happy with where I am v. where I was and the ability to inject Humira every 10 days.
One more thing: I had more trouble with the thoughts of injecting MTX (which I did for over a year) than I ever did/have with Humira. Life is a funny old dog.
I know my Dad has PsA. He has rampant P for which he seeks no treatment beside steroid creams and lots of sun exposure. In recent years I've watched him struggle with his hands (fingers in particular) shaking them and rubbing them in the morning to "wake them up". I know that feeling all too well.
Is his PsA milder than mine? For sure. Is mine debilitating? No. But I WAS debilitated by the onset of the disease, the fatigue, the pain. And treating only the symptoms really didn't help me at all. _Could_ my relatively-mild PsA have caused me to completely shut down? Absolutely.
My treatment protocol includes as much exercise as I can tolerate (sometimes very little, sometimes 3+ mile walks), biologics and DMARDs all of which allow me to continue with my life.
As Tom mentioned, I do things now that prior to diagnosis were tough for me. Yesterday I shoveled snow for 45 minutes. There were periods of time when I was getting on meds and my disease was uncontrolled that I could barely walk. None of us knows what's coming down the pike (if you do know, would you please tell me who's going to win the Derby in May so I can place my bet now?). But each of us ought to have the best life we can playing the cards we've been dealt. And if an assist from meds gets me a boost in my quality of life, I'll keep on taking the medicine.
Sometimes forgetting that counting to five is a GOOD thing, Six Cat, as I experienced on Friday.......
One of our fos/adopt daughter picked the wrong boyfriend who turned out to be abusive. She came home We heard he was coming to town so we stashed her in a womens shelter, He showed up got a little pushy. They stopped off at the hospital with him on the way to jail.
The fool showed up at the permanent order of protection hearing (on crutches) to complain what a mean SOB I was and that the order should be vacated because he was afraid of me..... I was called to testify. I forgot the ol' five count. It took a while to get to the stand..... Fortunately the judge allowed me to stand for my testimony. To make a long story short the permanent order was signed and he looked the fool. The deputy who rearrested him made some comment as to why he must have to beat on women.
All any daughter can hope for is a dad that will love and protect her her. Sorry, off topic, but it touched my heart :-)
tntlamb said:
Sometimes forgetting that counting to five is a GOOD thing, Six Cat, as I experienced on Friday.......
One of our fos/adopt daughter picked the wrong boyfriend who turned out to be abusive. She came home We heard he was coming to town so we stashed her in a womens shelter, He showed up got a little pushy. They stopped off at the hospital with him on the way to jail.
The fool showed up at the permanent order of protection hearing (on crutches) to complain what a mean SOB I was and that the order should be vacated because he was afraid of me..... I was called to testify. I forgot the ol' five count. It took a while to get to the stand..... Fortunately the judge allowed me to stand for my testimony. To make a long story short the permanent order was signed and he looked the fool. The deputy who rearrested him made some comment as to why he must have to beat on women.
I would have LOVED to have been in the courtroom--oh judge, I'm so afraid of him, as Lamb struggles to make it up and then to the witness stand. First day of criminal law: Rule #1, your clients think they're smarter than anybody. Rule #2: the reason why your clients are where they are and need your services is Rule #1. I love my job but lawzy.
Speaking as a daughter who would dearly love to hear my dad call me his baby girl, to say nothing of see that warm, wonderful smile (he died sixteen years ago this month), it touched mine, too.
Jules G said:
All any daughter can hope for is a dad that will love and protect her her. Sorry, off topic, but it touched my heart :-)
tntlamb said:
Sometimes forgetting that counting to five is a GOOD thing, Six Cat, as I experienced on Friday.......
One of our fos/adopt daughter picked the wrong boyfriend who turned out to be abusive. She came home We heard he was coming to town so we stashed her in a womens shelter, He showed up got a little pushy. They stopped off at the hospital with him on the way to jail.
The fool showed up at the permanent order of protection hearing (on crutches) to complain what a mean SOB I was and that the order should be vacated because he was afraid of me..... I was called to testify. I forgot the ol' five count. It took a while to get to the stand..... Fortunately the judge allowed me to stand for my testimony. To make a long story short the permanent order was signed and he looked the fool. The deputy who rearrested him made some comment as to why he must have to beat on women.