So I was diagnosed with Psoriatic Arthritis about 8 months ago and I have had some trouble dealing and adjusting with the illness. I was hoping there were others who have gone through similar things and I also wanted to create an area that those who suffer from these illnesses have a place to talk and maybe offer another PoV on a person's situation. If this isn't the right place/topic please let me know and I'll change/retract it if necessary.
I have had Psoriasis for not quite a decade now, but it hasn't evolved to the arthritis just yet, but I can at least empathize from a scalp and skin aspect of it.
I have been using Desonide and Clobetasol Propionate with good success and it keeps it from progressing any further than that. I do hope they find a cure for it eventually and have been reluctant to go the Humera route, as I don't like the possible side effects that go along with the treatment regimen.
So I was diagnosed with Psoriatic Arthritis about 8 months ago and I have had some trouble dealing and adjusting with the illness. I was hoping there were others who have gone through similar things and I also wanted to create an area that those who suffer from these illnesses have a place to talk and maybe offer another PoV on a person's situation. If this isn't the right place/topic please let me know and I'll change/retract it if necessary.
I've had psoriasis for around 30 years and psoriatic arthritis for just over 20 (the latter really f*cked up my final two years of high school and severely f*cked up my senior year of college with an extra debilitating year-long flare up).
It really sucks.
Humira/Enbrel was a godsend and has enabled me to have a pretty normal life. The side effect risks are acceptable given the severity of my condition otherwise.
Subcutaneous injections really aren't that bad, and you can either go the syringe or autoinjector pen route. I've tried both, I slightly prefer the syringes because I have good fine motor control so it stings less than the autoinjector.
I've had psoriasis for years, along with a lot of other issues such as food allergies, asthma, etc. The psoriasis hasn't yet progressed beyond what can be controlled with topical steroids, so that's all I've done so far. Interestingly, the very first spot that I had many years ago seems to have "gone away" for now. It's on my scalp and a number of other irritating places, but I remain hopeful that the arthritis can be avoided. If not, I'll deal with it when it comes along.
I was very worried, as were my doctors b/c I tore the ligaments in my left thumb a year or so ago. Much pain was involved while the joint "remodeled" (doctor term) but things seem to have stabilized and the pain and swelling are gone as long as I am careful not to dislocate it. Since I'm mid 40's and my profession isn't a sport, they don't want to repair this.
Farscry wrote:Subcutaneous injections really aren't that bad, and you can either go the syringe or autoinjector pen route. I've tried both, I slightly prefer the syringes because I have good fine motor control so it stings less than the autoinjector. ;)
My aunt shares your views, it does seem like a good idea. Hopefully this medication will go through but it's good to know that the injectables aren't that bad (I have a fear of needles).
Hey, I wasn't a fan of shots either. The first time I self-administered an injection with Enbrel it was with a syringe (the auto-injector pens weren't available yet) and it took me a good ten minutes or so to get up the gumption to jab myself. It took a few times before I lost my nervousness.
Hopefully your medication works out and there's no need to go this route, but yeah, it's great that there are so many treatment options now versus back in the mid-90's when I first developed the arthritis. The Cox-2 inhibitors never worked particularly well; they were enough to keep me functional, but winter in particular was still hell on my afflicted joints. But now? I rarely have any arthritis symptoms beyond some mild occasional winter pain that is easily managed with over-the-counter pain medicine.
Hell, the idea of being physically active again was a pipe dream until Enbrel/Humira, and now everything is back on the table (even though I'm obviously cautioned against doing high-impact stuff due to long-term joint damage).
Contrast this with how bleak my internal outlook of my future was back in the late 90's as I was entering my senior year of college and so debilitated at times by the arthritis that I had trouble writing with a pen for any extended length, or walking up or down stairs, or even just getting out of a damn chair. I wish I could go back in time and tell college me to chin up, that things really would get better in a few years, but with what my doctors and I had to work with at the time, there wasn't a particularly rosy outlook.
I really feel for you guys. My wife's stepdad was recently diagnosed with mayasthenia gravis, which manifests as loss of muscle control. It started with his eyes, leading to double vision, and it worsened to the point that he was barely getting by.
He's being treated right now with massive doses of steroids and immunosuppressants, which are helping but cause their own nasty side effects.
Due to this I've really been made aware of this class of diseases. I've been really shocked by how prevalent autoimmune disorders are, and by how little we seem to actually know about them.
I'm kind of a House-level patchwork. I have lichen planus and ankylosing spondylitis, complicated with diabetes, diabetic neuropathy, after-effects of young and stupid stunts, and fibromyalgia with the accompanying depression and anxiety. I have three benign thyroid tumors and one that may not be, but that's still in diagnosis mode.
I'd gotten along for years on stubborn pride and canes. However, the spondylitis has gotten to a point where my shoulders can't bear the stress anymore. Used to be I could get through a normal day of activities with the help of a cane. I can't cheat that way anymore, so it's severely limited my mobility. But staying still hurts just as much, so it's a whole balancing act/budgeting act I have to do every day.
It's taken me years to get a diagnosis that seems to fit, and I don't know if I could have done it without the hard work of my current primary care physician to negotiate the maze through the rheumatologist, neurologist, endocrinologist and physical therapist to come up with a stack of treatments and self-care that seem to be helping. It's still a struggle with side-effects and stress from my job, but I feel like I can work with this in a way I have never really had before.
One of the keys of my treatment has been my service dog. I've waxed rhapsodic before, but I really don't know what I'd do without her.
This really gives me hope, thanks Farscry. I'm at that point where my illness is making me miss pretty much every other class. thankfully my classes this semester are more focused on papers and tests than attendance, so I can miss class when I need to, do my work, all while changing and finding a new medication and still have a passing grade.
Yup, that's all you can do, and it's ok! I missed a lot of classtime that final year of college, but being upfront with my professors about what was happening and what I was trying to do about it helped a lot.
Middle school and high school were the worst years of my life.
Not only did I have to contend with the normal bullying & such that nerdy kids endure (I've always been a nerd ), I got all kinds of hell for being a freak -- and yes, at the time I even considered myself as such. I was the only kid in my small rural community with a condition like mine, and it was fairly bad (would be around a 35-40 on the modern PASI scale).
A couple years back I found my old journals and was reading through them, and damn, I forgot just how dark my headspace was back then (depression and anxiety that I've fought as an adult feel tame in comparison, and those aren't all roses and rainbows either).
It made me feel good to see how much progress I've made emotionally and mentally since those years.
So yeah, sorry for the navelgazing, and I know others have had far worse than I've had to deal with, but when you're winning the wrong lottery like we are, it can make it very difficult to fight the negative head-weasels that make you wish you "normal".
One of the keys of my treatment has been my service dog. I've waxed rhapsodic before, but I really don't know what I'd do without her.
It brings me joy that you've been able to have that treatment option. I get so angry with people who make light of service animals, and have had some pretty harsh words a couple times about it.
Always sending positive thoughts your way, for whatever good they can do, Colleen. /highfive
Yup, that's all you can do, and it's ok! I missed a lot of classtime that final year of college, but being upfront with my professors about what was happening and what I was trying to do about it helped a lot.
I'm just popping in to say that as a college teacher, this is a REALLY GOOD THING TO DO. I also refer students with continuing health difficulties to be in touch with student disability services as well as whatever office (here it's the Dean of Students) handles possible long term or frequent absences, like those due to health reasons.
Hopefully the new doc works out for ya!
I didn't care much for the rheumatologist I used to go to, but I didn't really have a choice of provider. Fortunately he retired, and his replacement is pretty good.
If you continue to respond well to the Remicade in terms of your psoriatic arthritis, I would talk with your doctor about trying one of the self-injected ones. I haven't had Remicade, but I have never had nausea or flu-like symptoms from Enbrel or Humira. Not sure if I'm just lucky, or if they're just less harsh on the body than Remicade is.
Had our first snowfall for the year, and it was fortunately a moderate one: around 6-7" in our area, but the ground was warm enough that it only resulted in a few inches' accumulation on the driveway and sidewalk.
As a new homeowner, I knew this winter would force me to get some exercise with shoveling. I must say, it really amazes me to think about how well I can manage winter yardwork like shoveling now, aside from my poor physical shape (my back's killing me today). If I wasn't in so much pain that I couldn't even shovel in the first place, I used to be laid out for a full day or two after shoveling in the past with how much pain my joints would be in.
But now with good treatment, I can actually function like a person in normal physical condition for my age. The one thing that still gets me though is my hands; unfortunately winter does cause me trouble with the damage my joints took in the past. It's time to break out my trackball mouse; it has larger raised mouse buttons that in particular are nice to have when my fingers get achy!
So yeah, here's to a hopefully good winter to my fellow joint-pain sufferers. If anyone has any good winter coping strategies, feel free to share!
My wife developed PA a little over 5 years ago in her early 40s and I grew up with a mother who has suffered from RA since her late 20s. My wife started with Methotrexate and later added Humira. She hates needles. That said, she hates other things more, like a messed up stomach and severe joint pain. She actually switched to a syringe injection form of Metho over the pills due to a lower nausea factor. When she went on Humira over 3 years ago, that made the biggest difference of any medication. She still hates needle, but she hates the alternative of not taking it more. She uses the autoinjector pen for the Humira.
My observations are that it is really important to have a doctor you can trust, which my wife struggled with for awhile.
She significantly changed her diet (Gluten free, reduced dairy) in an effort to self cure and ween off the metho. Early on, it turned into a nasty cycle where she would feel really good for a stretch, reduce her metho (on her own), and then stopped taking it. The joint pain would come back with a vengeance. Metho takes a few weeks to build up in the system, so those were rough times. Once she found a doctor she was comfortable with, she was more comfortable sharing her thoughts and concerns and they have worked together to find the right mix of treatments and medications, including transitioning off of Methtrexate to another medication that does not mess up her stomach. She has maintained her diet for the most part and it is now a part of her overall wellness plan.
Best of luck! Hopefully you start getting positive results soon and as a bonus, get that wonderful feeling that comes with facing your fears and overcoming them.
Best wishes. Hopefully you are one of those that starts getting relief in the couple of injections. If I remember, my wife noticed a pretty noticeable change in the first month.
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