What is the 'typical' progression of PsA?

General
1

Hi all! Firstly, this forum appears to have a lot of useful information, and I only wish I had stumbled upon this site years earlier!

I was diagnosed with PsA in 2010 with a fairly 'typical' presentation: mild psoriasis for years, followed by unexplained pain in feet, then wrist, then finger, then elbow. After a sudden flair lasting many weeks, I was able to see a rheumatologist who made the diagnosis. Things were doing well on oral methotrexate for the last several years, but recently, the symptoms seem to be worsening, despite switching to injectable methotrexate. I'm hoping to learn more about the natural progression of the disease to help me better plan on some major life decisions. What I would be interested in knowing is whether there are any statistics available like the following:

  • What percentage of PsA cases spontaneously resolve? (I've never heard of this happening, but was just curious).
  • I understand that there are a few different 'levels' of treatment with medications, but what percentage of PsA patients do well with things like methotrexate, and how many need to move up to biologics? Is it 50/50?
  • Out of all of the patients who move up to biologics, how many improve, vs. continue to worsen?
  • How long does that window of improvement last? My sense is that *eventually*, they may stop conferring a benefit, but maybe I just don't hear of the folks who do well for longer stretches.
  • If symptoms continue to worsen, what is a the time frame? (Obviously, *every* case is different, but surely there must be statistics looking at the population of PsA patients as a whole!)

Personally, I'm at a stage now where I am mostly accepting of the diagnosis, and I've found ways to get around most of the limitations it has imposed on my life, difficult as that has been. But I still have several things on my 'bucket list' (e.g. travel to Europe), and I'm trying to gauge what risks I'm taking by waiting to do those things until later. I'm weighing that against working hard for several more years and retiring early. I see many signs of encouragement within this support group (thanks!), but I'm in search of something a little different than optimism at the moment, and hoping to find some realistic statistics to help me better see the 'big picture' of 'what commonly happens' to patients with PsA. If anybody knows of such resources out there that provide that kind of overview, I would be most grateful.

Thanks!

2

Hi GonzoPsA, and welcome to LWPsA! This is a great site and hopefully you'll get the answers you're seeking. I don't have all the statistics, but i do know that the progression of the disease seems to be anywhere from slow and steady (sounds like you and I are in that category) to swift and haphazard! And, like you, my PsA seemed to "take off" after several years of mild progression. Like you, I stumbled upon this site, and thankfully so because I was terrified of the meds (DMARDS/biologics) and the moderators here convinced me to fear the disease--not the meds. So, I got on Enbrel and have been on it for 19 months with really good results.

What everybody does seem to agree on here is that while the disease is progressing without treatment, damage is being done. In my case, I have permanent back and foot injuries that cause me some pain even though Enbrel is relieving the PsA symptoms.

What percentage of people respond well to biologics, and how long do they work? Great questions. I feel so lucky Enbrel is working for me--some people don't have much luck with biologics. It's bothersome that often biologics work for any length of time and suddenly stop working. Looking at images of PsA online nearly makes me sick and it's scary to think that could happen. Like you, I want to continue working because I love my job and think it's important to keep busy. Also, exercise is crucial to staying limber and most people say it reduces pain and stiffness, as does using ice and heat.

Hopefully other members can share realistic statistics that will help you (and the rest of us) have a clearer idea of what our future holds!

3

It’s so variable. My doctor thought it was funny when I asked about remission at about four years in. She said for me? Not going to happen with or without meds. So, here I am eight plus years post diagnosis. I’ve been on a biologic for two years, yet there is still a slow and steady progression.

What you may see from this site is that there is a broad range of progress. It also depends on how well you respond to meds and whether you burn through meds. It also depends on whether you develop any additional health problems including side effects that may limit your choice of meds. There are so many different considerations.

Personally? I’m hoping that I don’t wind up burning through meds, as it looks as though my first biologic is going to have to be replaced soon, and I’ve just been on it for two years.

4

Thank you for your feedback Grandma J and Stoney. I do realize there is a *huge* degree of variability when it comes to individual patients, but I have to wonder why it is so hard to find data on collective PsA patients as a demographic. That kind of information is tracked for many serious conditions (e.g. congestive heart failure, most forms of cancer, etc.). Yet, for PsA, I can't find anything along the lines of "the probability that a patient will be walking unassisted in 5 years" (or some metric along those lines). I totally get that there a whole host of things a PsA patient can do to invest in feeling better. I don't want to minimize that point in any way. But I'd love to really understand which factors (lifestyle and medical therapies) have been statistically demonstrated to truly prolong the functional part of a persons life, as well as what the "average" duration of remaining mostly functional. I'll bring this question up with my rheumatologist, for sure, but that appointment is still many months away. I was hoping others know of data that touches on this question. Ultimately, I'm trying to figure out what the probability is of losing my ability to walk a few miles in reasonable comfort in 2 years time, 5 years time, and 10 years time, so I can ensure I don't miss doing those "bucket list" things I've been looking forward to for a long time. I hope that isn't a morbid way to look at things, but I want to be realistic and plan my pre-retirement years smartly. I'm not looking for any kind of guarantee, just something that will help me understand the odds a bit better than I do now.

5

The other thing to add in is that PsA is considered to generally be milder than RA, but clearly not for everyone. I've got about 10 or 11 years until "we" retire. I'm expecting to be able to do a lot, although how we travel may be different. We won't be camping, but maybe we'll get a pop up camper instead of a tent. I may or may not be doing long hikes. I just don't know. I know that right now I am happy to be able do hikes and walks most of the time. My hands are somewhat limiting, but I manage. I've had to give some things up, such as knitting. Machine sewing I can still do, so that makes me happy.

GonzoPsa said:

Thank you for your feedback Grandma J and Stoney. I do realize there is a *huge* degree of variability when it comes to individual patients, but I have to wonder why it is so hard to find data on collective PsA patients as a demographic. That kind of information is tracked for many serious conditions (e.g. congestive heart failure, most forms of cancer, etc.). Yet, for PsA, I can't find anything along the lines of "the probability that a patient will be walking unassisted in 5 years" (or some metric along those lines). I totally get that there a whole host of things a PsA patient can do to invest in feeling better. I don't want to minimize that point in any way. But I'd love to really understand which factors (lifestyle and medical therapies) have been statistically demonstrated to truly prolong the functional part of a persons life, as well as what the "average" duration of remaining mostly functional. I'll bring this question up with my rheumatologist, for sure, but that appointment is still many months away. I was hoping others know of data that touches on this question. Ultimately, I'm trying to figure out what the probability is of losing my ability to walk a few miles in reasonable comfort in 2 years time, 5 years time, and 10 years time, so I can ensure I don't miss doing those "bucket list" things I've been looking forward to for a long time. I hope that isn't a morbid way to look at things, but I want to be realistic and plan my pre-retirement years smartly. I'm not looking for any kind of guarantee, just something that will help me understand the odds a bit better than I do now.

6

One thing I have read is that PsA shortens our life expectancy by 3 years. Also, before I went on Enbrel (I was 60) I honestly didn't feel like I'd make it to 70--I was so exhausted I thought my heart would give out! Now I have a better outlook, but there are no guarantees, unfortunately. My husband retired in May and he's been sick almost nonstop ever since. He's been diagnosed with chronic gout, but has an elevated rheumatoid factor and a family history of psoriasis (his dad and two brothers) so the rheumatologist isn't ruling out RA or PsA. It's been a really sad few months. We love bicycling in the summer and we had planned to do a little traveling. If his health doesn't improve it will put a damper on those activities-at least for him.

My back went out in 2014 just weeks after I started Enbrel. I thought I'd end up permanently disabled and wheelchair bound, but it "healed" and I'm doing okay. But, my lumbar spine to my sacrum and my left SI joint are damaged and weak, most likely from years of untreated PsA and OA, so they could go out again. I sometimes feel like it's a ticking timebomb, but try to be optimistic and get as much enjoyment out of life as I can. And, of course, I'm very careful not to re-injure my back!

I hope you stay strong and are able to do your bucket list things and more! We're all hoping for a cure! Who knows what the future holds for us?

7

Actually there is a lot of Data, and its not terribly encouraging. Basically 1 in 5 develop very serious disease.

http://ard.bmj.com/content/64/suppl_2/ii14.full

This study is an older one and precedes the wide spread use of aggressive treatment Since the use of biologics is a relatively new development, it may be a while until we have new numbers:

http://rheumatology.oxfordjournals.org/content/42/6/778.full.pdf

In terms of over all effect the main thing that has been learned is that symptoms and pain are far worse for the majority of patients than either examination or lab results would indicate. The deterioration of joints follows a much different path than other forms and are not generally seen except on flat film (old fashioned X-rays) MRI etc aren't much different. We have also learned that OA with PsA is NOT old fashioned Wear and tear/aging but is in fact an erosive form.

Biologics have mad a huge difference in quality of life and pain control but...... That's about all we know at this point. beyond the fact they slow down joint damage. Their effect is interesting at the least.

So here is my story (of late) I have had a number of complications associated with PsA that put me in the "rare column" Those complications have my Docs calling me "terminal" (primarily heart and upper spine) In fact my doc gave me a list of cigars and fine whiskeys to try on my upcoming cruise. By the same token those complications have little effect on my day to day living as most of the issues can be managed with various medications. There is also some surgical options available which I have opted out on.

The interesting thing is that our biggest concern has always been deterioration of the upper cervical areas of my spine and the SI joints (I have the spondylitis form.) I just had my first screens of those areas in a number of years. THEY are solid deterioration has stopped cold. The peripheral joints are less effected by biologics, so despite borderline liver numbers we restarted MTX, and it has made a huge difference. (well sort of I'm getting a new elbow sometime this spring)

What a lot of docs know but won't say is that the people who do the best have the best Kidneys and livers. They walk upright much longer. Here's the problem in order to have healthy kidneys and livers, you have to have a large change in lifestyle. Your body doesn't like toxins. So what needs done is primarily replacing your NSAIDS, Tylenol, and Narcotics with exercise and movement. (it helps) In fact the arthritis Association has determined exercise is THE BEST thing one can do.

It is also for some the MOST difficult. You simply have to do it no matter how much you hurt, skipping 2 days, can result in 20% loss that will take months to recover.

So let me share one other thing. I am an expert on numbers especially as they relate to "medical stuff" I pay little or no attention to them in my own life. Its simple I have no clue what group I am in so I have no numbers to plan on. I can't make intelligent decisions because no matter HOW MUCH data I have there simply is no possible way to apply those numbers or know what is the "natural progression of the disease to help me better plan on some major life decisions"

My brother in law is was also a statistician. He was a lot smarter than I He was also the world champion (twice) world series of poker winner. Playing poker was one of the times he never used "numbers" (well maybe a little) He LOVED playing with "odds players" they always lost.

Funny story aside from the fact I had to sneak him out the back door of his house the nigh before he passed to get away from the Hospice Folks so he could play in his last game. Boy did I catch hell trying to sneak him back in the house as he was slipping into his "comma" He won big that night too.

But anyway he used numbers to determine the outcome of his Cancer. He had stage IV of a very aggressive cancer that had metastised. He figured he had 3 months at best or maybe 6 mos if he spent 250K on treatment that would rob him of life. So he did what for him was logical. He sold out got on a plane and checked into the Bellagio to drink, smoke and play poker for his last three months. Well his comp ran out, so he moved to the Golden Nugget, and several other properties. Finally after six months he came home as he could not face the embarrassment of having to actually pay for a room and food in Vegas. Anyway to make a long story short 2 years later he on his second title and passed 5 years after the numbers said his goose was cooked.

The bottom line is LIVE your life and enjoy every moment. Do what you love and do not worry tomorrow away. The ONLY result of that is you will make yourself miserable. You have NO clue what your disease will do to you. Zero.

One last comment about the numbers. If you had perfect numbers totally up to date only 68% of patients would fall into the typical progression (That would be one standard deviation) Sorry but that isn't convincing enough evidence to make any kind of a decision

8

I'm really sorry to hear about your husband Grandma J, and based on yours and Stoney's replies, I've come to realize that I really can't afford to look to things in such black and white terms as I have. Anything can happen. My PsA could improve, but my significant other could fall ill, changing many plans. There just isn't any way to say. So anything that is important enough to be on my "bucket list" should just be done as soon as feasible.

But you both convey a subtler point too. You've helped me recognize that it isn't worth locking in on the assumption that I *have* to be able to walk X number of miles in order to do such-and-such trip. There are ways to adapt and still have a great experience, even if a person isn't as functional as they once were. I've been relatively good at recognizing that in my day to day life (my hobbies have changed quite a bit from the outdoor activities I used to do, and I still have a great time). I just need to incorporate that same lesson for those long-term goals that I've held for a long time.

With regard to my original question, I did come across this article on the web that provides some clues: http://citeseerx.ist.psu.edu/viewdoc/download?doi=10.1.1.615.6843&rep=rep1&type=pdf

About 20% of the patients develop a very destructive disabling form of arthritis. Over time there is clinically active arthritis such that by the time patients have been followed for more than 10 years, 55% have five or more deformed joints.

The authors found at follow up that for each actively inflamed joint (tender and/or swollen), there was a 4% risk of increased damage at the next visit, which was six months later.40 Thus, if a patient had 20 actively inflamed joints (which is what was found in the clinical trials), there was an 80% chance of progression of damage from the beginning to the end of the trial. Females tend to progress more than males, and current damage is predictive of future damage.

The risk for premature death is related to previously active and severe disease, the level of medication, the presence of erosive disease, and a high sedimentation rate at presentation to clinic.

So, from this, it appears that there is about a 20% of severe disease (across the board). The more severe our involvement, the more predictive it is of future progression. Our risk of cardiovascular disease goes up too, and seems to be proportional with the activity of disease.

This all seems to jive with common sense, but it also helps me appreciate that milder forms of PsA don't necessarily have to progress to severe disease over time (and probably won't). I guess, at the core, that is what I was really wondering.

Anyway, thanks for the added perspective you've provided!

====

Addendum: I just saw your post tntlamb while typing the above reply, and want to thank you too for reinforcing the message that "statistics" won't really add up to a hill of beans when it comes to an individual. All of the anecdotes that have shared above really help underscore this point.

I appreciate the reminder about exercise too. I think I'm doing OK in that regard, as I'm a firm believer in exercise too (I just get self conscious about not being able to participate with my healthier friends as I used to). I force myself to walk at least 4 miles a day no matter how I feel. (Somebody honked at me for taking to long to walk across the intersection a few days ago during a flair). Slow is better than none, though, and our dog doesn't seem to mind going slow. I've never like swimming, but have started that too, and found a community center gym nearby that has comfortable machines.

I've realized, since writing my first post yesterday, that I still seem to have more resentment for the disease than I realized, but I wasn't able to admit it to myself for some reason. I think I'm sort of mourning the loss of my "ideal retirement", where I can imagine myself out hiking and biking like several 70 and 80 year olds that I know. I've long been trying to structure my life to get to that point, but feel miffed that I probably won't get there. But I do feel better by just recognizing that fact.

I am going to cross off a few "bucket list" items as soon as I can. I see that as the right thing to do. I don't want to have any regrets later. But this thread has given me a lot more to think about in terms of evolving my perspective on the next 10-20 years. Thanks again!

9

I've been following this post and totally agree that the best thing to do with bucket lists is to evaluate what you really want to do and do it ..... I have contingency plans as well but they're the sort that have evolved, I don't work at them in a structured way.

One thing I would say about statistics and the progression of the disease etc. is that these days, when I do find good, reliable sources of new 'formal' info. about PsA I tend to think 'yep, that's as I thought'. I'm no scientist, nor do I have a crystal ball, but reading hundreds of posts from people with PsA (which is easy, they're so interesting) over the last few years means that understanding of the disease just develops & deepens naturally. I tend to cross-reference without really thinking about it. Plus I reflect on my own experience and have a feeling for how my disease is going. I think it's likely that my joints will hold up for another 10 years. However I have been very 'systemically' ill with this disease and it was diagnosed late and for these reasons I anticipate that something unexpected could well happen too. I'm doing well, but my health has taken a bashing.

Somewhere along the line you mentioned exercise. My own view is that keeping moving is absolutely key, not just to fighting PsA but for health generally, especially as we age. I honestly think that some of my joints now have significant protection not just from the drugs but from the strength I've worked at developing in muscles and tendons. There is a ton of evidence out there that obesity, a sedentary lifestyle and poor nutrition are the big killers of our times. It is one big challenge to address these things with a disease like PsA but in my own experience it's 100% worth it. It sounds as if you are so on top of this that you might as well get quite a big bucket.

10

Aw, GonzoPsa, I think its totally okay to have resentment--no normal person would say, yay, I have a chronic disease that will cause me tons of pain and possibly disability as I grow older.

I'm resentful because my mom will be 91 in about a week and she's in better shape than many 60 year-olds, and definitely better than most of us PsA victims! Sure, she has some OA and now a pacemaker, but no inflammatory disease. My dad had celiac disease, but he never let it get him down. Both of them were very strong--physically and emotionally. I wouldn't have wanted celiac disease instead of PsA, but I'm envious of my mom for the long, healthy life she's enjoyed.

I hope I inherited their good genes that'll give me the spunky attitude and get me through the challenging times.

My parents did fun things they could afford and they were always on the go. I doubt my dad had any regrets when he died--sort of like tntlamb's B.I.L.

Another thing I've got going for me, I have kids and grandkids who won't allow me to get old. They discourage me from letting my aches and pains get me down. We have family things happening so often that sometimes I wish I had more time to relax and do nothing. But, being busy, it's really easy to ignore mild to moderate pain. So it's definitely good for me. It's not a 4-mile walk, but I'm almost constantly moving.

It is hard to calculate how PsA will affect us. But, those of us who started out with mild disease maybe will be less severely affected over the long run. And, like tntlamb said, outcomes will/may be different with the use of biologics. That's something we will only know in years to come.

11

It's been a long day, I'm still looking back at this post and noticing interesting points. You mention 55% of patients having 5 or more deformed joints after 10 years. I can see that very damaged joints make life difficult to put it mildly. But not impossible. However I have a whole lot of damaged joints in knees, feet, hands, probably more and I still have good mobility. Doing stuff does hurt sometimes. Like tntlamb says, OA is often secondary to the disease rather than being due to additional wear & tear which was and sometimes still is, the basis for much fobbing off of PsA patients. And it is secondary OA that's my main problem, joint-wise. I think how you interpret those stats rather depends on what is meant by 'deformed'.

12

This is all good stuff! I was hoping to follow up on one point made above:

Tntlamb, you mentioned in your post: that "replacing your NSAIDs" [with exercise] is important. I had been an "ibuprofen addict" until my rheumatologist recently switched me to twice a day diclofenac (which has been GREAT from a symptom relief standpoint). I haven't really done much research into the potential long-term effects of NSAIDs, but is there actual evidence that keeping NSAID use to a minimum helps? There are days that I use them "just in case", but there might be room for me to cut back during good stretches if such evidence exists. What's the consensus there?

13

NSAIDs have multiple uses in treating PsA. If one is using them strictly for "analgesia" you are MUCH better off doing something else aches and pain (stretching exercise tens etc) their effect on kidneys and liver are cumulative and you will pay a price over time. For some learning to live with a level pain that is manageable is a better option. of all the "meds" we take NSAIDS have the most side effects and are the "most dangerous" The safest are the Bilogicals, Here is a general article. There is an assumption of course long term use is a bad thing:

http://www.health.harvard.edu/pain/pain-relief-taking-nsaids-safely

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Thanks tntlamb. That's a real eye-opener. I've always assumed NSAIDs were fairly safe, given that many are available over the counter. I'll see what I can do to back off of using them as a simple way to block pain and spend more time focusing on other lifestyle methods.

15

The truth is, the things tntlamb has to say about this disease are gold-dust. I've never taken his words as gospel, I've tested them against my experience and that of others, my rheumy's advice, things I've read .... and time and again he's right.

GonzoPsa said:

Thanks tntlamb. That's a real eye-opener. I've always assumed NSAIDs were fairly safe, given that many are available over the counter. I'll see what I can do to back off of using them as a simple way to block pain and spend more time focusing on other lifestyle methods.

16

I agree, Sybil. I have lots of OA that's secondary to my PsA. In fact, I'm pretty sure all of my OA is, and I have it in a LOT of places!

Sybil said:

It's been a long day, I'm still looking back at this post and noticing interesting points. You mention 55% of patients having 5 or more deformed joints after 10 years. I can see that very damaged joints make life difficult to put it mildly. But not impossible. However I have a whole lot of damaged joints in knees, feet, hands, probably more and I still have good mobility. Doing stuff does hurt sometimes. Like tntlamb says, OA is often secondary to the disease rather than being due to additional wear & tear which was and sometimes still is, the basis for much fobbing off of PsA patients. And it is secondary OA that's my main problem, joint-wise. I think how you interpret those stats rather depends on what is meant by 'deformed'.

17

That's why I was hoping tntlamb would respond to this discussion.....we all have common-sense information, but he has the scientific information as well! I totally agree that NSAIDS are bad for us and should be taken with caution. Is acetaminophen an NSAID? I know it isn't good for me, but tntlamb, if you're reading this, can you tell me if taking one tylenol pm every night is harmful to my health?

Sybil said:

The truth is, the things tntlamb has to say about this disease are gold-dust. I've never taken his words as gospel, I've tested them against my experience and that of others, my rheumy's advice, things I've read .... and time and again he's right.

GonzoPsa said:

Thanks tntlamb. That's a real eye-opener. I've always assumed NSAIDs were fairly safe, given that many are available over the counter. I'll see what I can do to back off of using them as a simple way to block pain and spend more time focusing on other lifestyle methods.

18

This is an excellent thread. Thanks GonzoPsa for starting it and thanks all for the contributions...

tntlamb your comment about the condition of one's liver and kidneys is an important one that I have been thinking alot about. This whole thread gets me thinking of how much of an individual juggle it is to live with a chronic condition and to become helpfully educated about the condition and treatment options. It's a juggle to work out meds over time; to pay enough attention but not too much; to take enough meds but only enough; to know when pain is ok to manage with or without meds; when to revise your decisions and when to acknowledge the fear but stick to your course of treatment. Truth is for me the biggest challenge is to remind myself that I am doing the best I can to manage this. I can only make decisions based on the information I have at the time and my current circumstances. I have to live my life.

Statistics and research help me alot but as this thread has so wonderfully illustrated, there is so much more that inform our decisions and no 'Hitchhiker's Guide to the future'. When my fear rises about the future and what it might bring I acknowledge it because it's there and then I think of really really important things like.... if only wine was neutral on the liver...wishful thinking for sure but there's a crowdfunding campaign I would definitely get behind :-)

Thanks again for the thread and the references.

19

I just noticed my post looks like I drink wine to escape fear...oops unintended. Truth is I try hard to stick to the recommended limits relevant to my meds. I was trying to convey that humour helps me alot. So too does grabing hold of the wonderful things I have got...family, friends, study, work, movies, books and, very occasionally a glass of wine :-)

20

Lol!! Personally I agree with you about everything!

MacMac said:

I just noticed my post looks like I drink wine to escape fear...oops unintended. Truth is I try hard to stick to the recommended limits relevant to my meds. I was trying to convey that humour helps me alot. So too does grabing hold of the wonderful things I have got...family, friends, study, work, movies, books and, very occasionally a glass of wine :-)