How quickly and or slowly does this disease progress?

General
1

I am newly diagnosed and can say that the noticeable changes in my hands, neck and wrist came in about a 2 month period of time. The 3 fingers that are currently affected, happened slowly over the 2 months, where as my stiff neck happen overnight.

This morning I woke up with significantly lessened pain in my wrist and fingers.What are the odds that this be all that will be effected by PsA? I also noticed that my plaque psoriasis is coming back from a mild remission.

Anyone out here have mild Plaque Psoriasis and mild (3 finger joints, 1 wrist and neck) swelling and pain from PsA, and have been stable for a long time?

2

It's different for everyone, but you used the word in your title - progress. The disease is progressive, so the odds that things will stay exactly as they are now are pretty much zip. People go into remissions, some seem to be relatively stable for a while, but in the end, it always progresses. The fact that we actually don't know how fast it's going to progress, or how severely, is the main reason to make sure it's treated with a DMARD (conventional or biologic) as soon as possible. It's not always nice to hear at the start, but there's no point waiting and in two years time going "oops, it did progress quickly...."

My dad had very mild PsA (I'm pretty sure that's what it was), with just a tiny bit of psoriasis in his hair. It took them about 20 years to offer him a DMARD, and by then he'd given up so he didn't take it. He got PsA initially when he was about 26, just in his lower back at the start. It never did anything spectacular (hence the delay in any form of diagnosis or treatment), and it was common for him to go for 3-5 years at a time with what could be described as "stable" disease, then have a bad 6 months, repeat cycle. By the time he was 55 he couldn't dress himself because he couldn't lift his right shoulder at all, and needed a stairlift to leave the house. It only progressed very slowly, but the rest of your life is usually a really long time, so even slow progress can add up to a lot.....

Having said all that, once you get a DMARD/biologic that works for you, then you know you really are slowing down the progression by a huge amount - some people get many years of remission or near remission without much in the way of joint damage.

It's a really difficult time, facing that feeling that things are pretty darn awful now and they are just going to keep deteriorating... but funnily enough, if you ask they guys who have been around for a while, they'll tell you that's not actually what happens. Sure, you might have some more troubles with your joints, and maybe even a few other PsA things (like eyes for example), but as you come to accept the diagnosis and learn to live a great life as the new, reinvented you, you actually feel like things get better. And I can certainly say that finding a treatment that works, and reduces all that extra TNF running around in your body (which has been linked to depression, cardiovascular disease - the list goes on) helps the process enormously.

As a very odd aside, I'm going to add that for the first time in years, I felt frivolous and healthy enough to buy and wear some beautiful italian leather high-heeled boots! It sure hurt my feet, but it helped my soul :)

3

I'm not sure I can add much to what Jen has said, except to agree. The progression will be different for everyone, as will the treatment. Some of our members were put on biologics almost immediately following diagnosis, while others are put on NSAIDs for a while, or a wait and see.

I was diagnosed almost 6 years ago at age 36. I was put plaquenil (a DMARD) after a year of being on only NSAIDs, and then added in another DMARD just 1.5 years ago. My joint damage is fairly minimal in terms of bone and joint space, but a lot of joints have become painfully unstable. Again, I don't see a lot of people complaining about this in particular, but for me, this appears to be part of the course of the disease.

Progress, it does. The goal is to slow it down. A lot of it will come and go, and you'll learn how to adjust to this. Definitely keep talking to your doctor, even if you have a lot of fleeting pain. The more the doctor knows, the better your treatment will be.

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Oh Jen! Good for you with the beautiful boots! Bet you turned some heads!

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Congratulations on the boots!!! and dittoing in what the others have already said.

6

Just a quick personal note in regards to the new mods around here. We have a teacher (who assigned be homework on her FIRST day,) two nurses, and now a scientist who wears high heeled high leather boots. This could be really interesting.

As Jen indicated there are several types of PsA a couple don't do much damage long term. The problem is the slight majority of us don't have those types. We just don't know which type we have until its too late. Anyone with a passing knowledge of statsitics just nod and laugh when someone has little progession or fewer symptoms because odf some natural cure. There is a good chance they don't have the bad types of Psa Few of us would ever play Russian roulette even fewer would play with three of the six chambers loaded with bullets. But thats what people do with PsA every day depending on natural cures or no meds........ Medical Treatment works 90% of the time.

7

Jen that was one of the most encouraging answers I have heard. I am noticing joint damage in my hands and I am only 29 with a lot of years left for the disease to progress. So I worry about what my body will be like in ten, twenty or more years. But there is hope and we can still have a full life we just have to learn to live life while living with this disease. Thanks so much for your inspiring words :)

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You know after 40 years of PSA I used to think I had pulled a muscle, or was just getting aging issues thru the years. I was primary caregiver to my late husband of 36 years. He was terminally ill and I cared for him for the last 12 years he lived. I really paid little to no attention to what my body was telling me attributing it to stress or overworking myself. I had no idea of the damage or that it was PSA at tjat time. In fact when I was diagnosed with psoriasis they didnt know all they know today. However, when they started finding out that MTX helped I had a dr prescribe it, and after a while of taking it I went off thinking it was crazy. Never (I was alot younger and invisible at the time) looked back into it. Now I wish I had. Since then I didnt know what was going on I just knew I was in so much pain and not in one place, but my feet when I walk or stand, my back killed me, my hands were so bad at times I couldnt wrap them around the steering wheel, my neck felt like I had a 50# weight on my shoulders, my knees would swell and get fevered, and my lower legs would swell. My PCP just looked at me and ran blood work for RA, negative negative negative, everytime, so he then looks at me like I am looking for drugs. Finally he decided to send me to a bone doctor for my back, bone doctor I saw said my back was shot, and then I told him how my shoulder was acting, he gave me a cortisone shot IT WAS HORRIBLE, I screamed like a sissy and cryed. He also thinks I may have a torn rotator cuff, I dont want to worry with this until I get squared away on all these new meds to see how much it helps my shoulder. My new husband had never seen me like this, and the dr said it had so much arthritis build up in the joint, was hard to get it injected and recommended a Rheumy. THANK HEAVENS! This was only in May, and I am now on MTX and Humira, still in pain, I can say not quite as much but still in pain. I am going to be taking my 2nd injection this week of Humira and am hoping soon it will start working. Boy dont ignore your body or the signs that you may think are just aging process. It will progress its just how fast and how bad it gets before you decide to address it. Go while its still early before you get too bad off.

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Jen nailed it, and nailed it in high-heeled Italian boots! I’m jealous: my feet are so swollen and sore these days, that even my Crocs chafe and hurt. And Candi’s right about going early, and not allowing your symptoms to be written off as the usual suspects (aging, overweight, stress etc.)
Because nobody can predict the rate of progression of your disease, it’s important to get the best medical support you can, as early as possible. Maybe your disease symptoms are mild, and you have no damage to speak of yet. The best course of action in that case may be watchful waiting. BUT be aware that the situation can change quickly and you can go into a downward spiral. At that point, you need someone who is prepared to get out the big ammo asap. That’s not the time to be shopping for a good rheumy!
Before I was diagnosed, I had sore feet (amongst other problems, but I’m not going there). X-rays showed nothing. Twelve months later, I had extensive erosions and that led to the PsA diagnosis. My rheumy at the time thought my disease was mild. At that point, my hips were showing a bit of “OA”. Less than a year later, they were needing replacement, and there was proof that it was PsA damage, not OA.
Damage can happen fast. Don’t play around. Don’t fool yourself into thinking that this disease is mild, because by the time you and your docs realize it’s not, the damage may already be done.
Get yourself the best rheumy you can find, and keep him/her in the loop on the changes you’re seeing. And hope that you’re one of the lucky ones who’s on the PsA milk run, and not on the runaway train.

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And remember even those with severe PsA could go into and out of remission in the blink of an eye making control even more important. I know how you suffered Seenie but it is a good learning tale for all of us.......

I would really love to see the Italian boots Jen. I am a closet shoe fetishist............how I remember beautiful shoes!

11

It's definitely different for everyone.

We think I've had PsA since I was four, but I was not diagnosed until I was 36. I believe I had a few remissions - during pregnancies with four of my kids, for example - and good stretches of time when my disease was "stable." I had what I now know are major flares every now and again. I was on and off prednisone for bad asthma during my middle and high school years and a couple years after that, so that could have helped keep things somewhat under control. Then, one night I woke up with severe ankle pain, slept fitfully that night, and could barely walk in the morning. Both ankles were swollen, one more than the other, and I had almost no range of motion. The doctor ordered x-rays and, seeing the damage, referred me to a rheumy. Three months later, I finally saw a rheumatologist (the soonest appointment!!!), and by that time I could barely walk, had major back and neck issues, and some issues with my hands. X-rays showed significant damage since my last x-rays THREE MONTHS PRIOR and was diagnosed with PsA/spondylitis,.Within a couple weeks I was using canes, and weeks later a wheelchair. I went through testing, then more testing (and a celiac diagnosis, and more testing for liver issues), and was put on Enbrel, which helped my extremities but not my back. I'm now on Remicade, and it's working wonders. I'm now mobility-device-free for the most part and have even gone on several not-so-easy hikes. We're still tweaking dosage and timing of my infusions, and I'm hopeful we'll have worked out the kinks by this time next year.

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Nym - I have to say, I find your experience so fascinating. That you went from using a wheelchair to now not using any mobility aids amazes me. I'm sure it has done wonderful things for your mental state as well.

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I am amazed by it every morning when I wake up and am able to stand on my own two feet ... and every step I take! As far as my mental state ... there is more joy in my days, I do have to say, but the awesome thing about my PsA journey is that my overall mental health has improved greatly, whether I'm on my feet or in a wheelchair. Living with PsA has taught me so much about life and perspective and not just making the best of what you're dealing with, but thriving in any circumstance. :)

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Nym, you’re an inspiration to us all!

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Nym you have truly learned to bloom where you are planted, woo- hoo for you!

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Hear Hear Nym :)

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Italian Leather high heels (sigh). Tomorrow I pick up my 153$ black leather ortho shoes but at least they are comfy for my feet.

I have found that this whole PSa journey is a dynamic one and so different for each of us. Not to flog a dead horse but early medical treatment with DMARDs and or Biologics makes a huge difference in preventing/delaying joint damage. Even with being in the medical field I was surprised by how little my peers and drs know about PSa. Then I saw a Rheumatologist and a great family practice MD and things were dealt with. You need to be a strong advocate for yourself and stay informed. Hopefully, you will have a mild case but as someone said( sorry I forget who, my apologizes) even with severe PSa life can be better and there is always the hope of remission. When I was first Dx I asked the Rheumy the same question as the title of your post. He said it varied. I then asked" ok, but what is normal". And he said " Normal is a setting on a washing machine, people and diseases are not normal. But, I will work with you to maximize your vision of normal and adjust it as things go on". He also told me to surround my self with supports and I found this site after that.
I hope you find a great Rheumatologist and that it stays at a rather plodding pace instead of racing.

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Kirsten, wise words.

Im going to use that washing machine analogy - it touches the most important part of the disease in a delightfully honest way.

Did I mention that those Italian leather heels near killed my feet (I can just hear my osteopath… So on a score from 0 to 10, how bad is your pain??..)

But they are still in my cupboard, and if I can learn to lift more weights now than before PsA, then surely I can learn to walk in those heels for just long enough, maybe once a month, for life to feel a bit more fun!

19

Well there you go Impgypsy, we are all so different and our disease states vary.
I was diagnosed a few years ago although it seems certain all my various tendon issues from my early 20’s after my children were born were all part of the PsA map. I’ve had psoriasis since I was 12, had about 70 - 80% skin coverage at my worst.

I count myself as one of the lucky ones…my issues are mostly enthesitis, wrists, shoulders, upper and lower back, chest, ankles are my stable pain sources, with other pains regularly chipping in. I don’t have many joints that swell, but those are mainly in my hands. I’m on subcut MTX but maybe moving on to a biologic in the near future because of spinal issues picked up in an MRI. I am constantly in pain but I’m sort of used to it now and only consider myself to be going into a flare when the usual pain sources are worse,get more numerous, and the fatigue begins to knock me flat.
I can also still wear heels at times!! Its the bras I have constant problems getting on and wont yet conform, I just love the sexy ones lol.

I firmly believe in treating this disease aggressively, its NOT overkill to use these drugs to slow down the progression.

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I am so glad you are moving on to a biologic Louise. I have thought for a while it would be of use to you. I know it is harder to qualify for meds in UK but I was rooting for you! Now if I can just get this high heels and bra imagine out of my head......... You go girl!! <3