Arthritis and other Immune System Disorder Catchall

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.

Yeah, I was on Clobetasol for a while, but then we found out it had progressed to Arthritis so I started a regimen of Methotrexate , but it still is progressing and now I have to step up in the intensity of medication. Now I'm looking at starting an I.V. drip called Remicade. Not quite looking forward to that, but it's supposedly safer than medications like Humera but it still has alot of those side effects I think you are worried about (if it's the ones I'm thinking of). I chose to step up because I'm starting have my joints lock up and I can't walk without a cane for long distances.

Dr.Incurable wrote:

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.

Farscry wrote:

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.

That's good to hear, we were considering that, but my doctor doesn't trust his patients with the self injected stuff, so he likes to start on the IV first.

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).

WizardOfWor wrote:

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.

I'm glad your psoriasis seems to be getting under control, and that your thumb is alright. The good news I have for you is that only 30% (roughly) develop into arthritis, and if I remember correctly, if you treat it topically it will reduce chances further.

I've had some of my spots disappear but over all my arthritis is attacking the joints and even though I'm 21 I have to walk with a cane now and wear compression gloves.

Dr.Incurable wrote:
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).

Edit for capitalization error

Dr.Incurable wrote:
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.

Farscry wrote:
Dr.Incurable wrote:
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.

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.

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.

Dr.Incurable wrote:

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".

momgamer wrote:

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

Farscry wrote:

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.

Yeah, luckily I'm in a pretty good system and so far every professor I've had is understanding. I also have gotten in touch with the breeder of my current dogs and we are in talks for maybe getting a Xoloitzcuintli to use as a therapy dog, instead of an electric blanket. I've spent some time around them and since most are hairless, they act pretty much as a radiator, but you won't burn yourself on close contact. So hopefully we'll be able to find a way to make that work.

momgamer wrote:

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.

I'm sorry to hear about your illness, but it's good to hear that your service dog has been able to help. I can understand that balancing act. For me, if I sit or stand too long I start to hurt, so I go to stand up and it's nearly unbearable just to transition from sitting to standing or vice versa. Sending good vibes so that hopefully it doesn't get worse.

So my doc hasn't gotten back to me in almost a month; he won't talk to me without an appointment and he won't let me schedule an appointment until I get a test done. That's the problem though, he didn't tell me the name nor prescribe it, however he has told me to stop taking my meds. Scheduled an appointment with a new doctor, one of the go to organization recommended for someone with chronic arthritis in MD, recommended from NIH. Hmm that last part is confusing, sorry. Anyway in a week I will finally be seeing a new doc.

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.

Farscry wrote:

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.

Glad to hear his replacement is good. Frankly I am willing to accept anyone who will actually do their job. XD

Well I got to see the new doc (who is amazing!) and I got the loading dose of Remicade yesterday. It has already increased my joints mobility by a noticeable amount, however I am getting nauseated and feel like I am getting the flu (which I believe is a normal side-effect). I was impressed with the doctor's staff and the loading dose appointment went perfectly. To those who take or administer these types of medications, how long should I expect the nausea to last?

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!

Not sure if you have one Farscry, but I'd recommend getting an electric blanket for those colder days. It really helps me with my pain, I can send a link to the one I have if you're interested, it's a bit expensive, but it has been a huge help for my pain and helping me be mobile. You may also want a pair of compression gloves if you don't have any, again I can link to a good pair if you need.

Arise thread! Things are going somewhat well. I had to stop taking Remicade as I developed antibodies and tomorrow I start Humira. My doctor gave me tramodol to help deal with the increasing pain since the last time I successfully had an infusion was years ago. I think I'm feeling a bit anxious about starting this, I'm afraid of needles, and while I no longer have an infusion, I now have a bi monthly injection. Is anyone else in this situation, or have been in this situation and have any advice? Thanks. I hope everyone is doing well since the last time the thread was active.

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.

Well, the first injection was today, and it went about as I expected, very similar in function to an insulin pen and it hurt a little more than expected. I imagine it'll take time to start working.

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.

I'm told about 6-10 weeks is the norm for the effects to show up. Then again they said the same thing for Remicade, and I had less pain and more flexibility ten minutes after we left the clinic. I feel that it might be another dose or two, but it may already be starting to take effect, as my plaques are starting to turn red again and I'm getting stiff. (Good signs, not bad.)