Hmmmm. This would indicate that I probably have Psa. My hands sometimes get really swollen, but like I said, no bone involvement yet. I do not have plaques, but have skin oddness and nail oddness. Shrug.
I have thyroid issues, so maybe that makes the fatigue seem so bad. Dunno.
Stoney, thanks. My one brother gets it, my dad is clueless and I suspect my husband's family think I'm a moocher, since I'm unable to work full time. I just know that it all sucks.
Do any of you take pain meds of any kind? What works and what's not so good? It seems like some stuff makes me hurt worse... Oh, and are any of you on Plaquenil? I was taking it for Lyme, and wonder if I shouldn't go back on it.
Redhedgurl63 said:
I do take pain meds right now. I went though many NSAIDs and found a dose of plain old ibuprofen that works really well. I also take some heavy duty narcotics when I'm not working. The combination of the opiates and ibuprofen seems to work well for me. I am able to function with relatively little pain, but I have to be meticulous about when I take my meds. If I miss a dose, I am not a happy camper. Once the pain ramps up, it's really hard to get it under control. It's not ideal, but it gets me through right now. I am waiting for the biological I just started to begin working.Do any of you take pain meds of any kind? What works and what's not so good? It seems like some stuff makes me hurt worse... Oh, and are any of you on Plaquenil? I was taking it for Lyme, and wonder if I shouldn't go back on it.
Redheadgurl- Sorry I missed part of this. I've been on plaquenil for almost 5 years now. It had been working ok with just anti-inflammatories for quite some time, but I needed more starting last spring. So I got put on MTX for 6 months, with no improvement. Switched to Arava, and definite improvement.
I don't take any pain meds at all. I've used them in the past but only post-surgery, and always got off as soon as possible. They can cause a pain syndrome, so I try to avoid them.
Stoney, your doctor hasn't yet tried you on a biologic? They're much more effective than Arava, MTX or plaquenil.
I never mention arthritis or joint pain.
I am on Chemo as I have an auto immune disease that attacks my body.
If I have to name it I call it P S A or Psoriatics. The P S A is good as no one has asked me what that stands for.
If I have to explain more I say it is like having both Lupus (SLE) and Rhuematoid together.
I make sure I let them know there is no known cure.
There are treatments to stop it progressing. Not all treatments are successful
No disrespect to anyone with cancer but I have said that Cancer patients do have a chance of being cured with Chemo. There is no cure for my P S A
Chemo can only help to slow my disease from becoming progressively worse if the treatment works on me.
My Chemo drugs only work for part of the week to relieve my pain. The day I have it I am worse for 2 days and it wears off 2 days before I am due for the next dose. This is probably as good as it gets for me.
I have to stay on Chemo drugs for the rest of my life.
I have days when I can't manage to do simply tasks. (I usually give an example like I can't get the top of the milk or butter my toast).
Some days I have more pain than other days, today is more tolerable
Yesterday I rested for most of the day so I would be able to cope today.
I have had to take some heavy pain medication to cope today.
This disease can vary so much from day to day and from morning, noon or night.
I don't look sick because I don't have a virus or an infection. That is what makes people look sick. (Not sure if it is true)
It is near impossible to make social commitments in advance anymore, I never know from one day to the next whether I will feel up to going on the day.
I have to take each day as it comes, not knowing whether I will finish up in a heap in a couple of hours time.
I have to rest often and take breaks to get me through my day.
Hi Stoney,
The lack of validation is what gets our goat.
I inform people I have an auto immune disorder which requires chemo drugs, i is called PsA.
I tell them to Google it. 
Now that you have mentioned Lyme you need to consider the overlay of that condition. If you are past the active stage of Lyme then consider you have chronic Lyme which means periodic flares and all that looks the same as Psa and RA. My wife had Lyme and became self educated to an incredible degree. She continues to take about 10 suppliments every day to keep symptoms at bay.
Redhedgurl63 said:
Hmmmm. This would indicate that I probably have Psa. My hands sometimes get really swollen, but like I said, no bone involvement yet. I do not have plaques, but have skin oddness and nail oddness. Shrug.
I have thyroid issues, so maybe that makes the fatigue seem so bad. Dunno.
Stoney, thanks. My one brother gets it, my dad is clueless and I suspect my husband's family think I'm a moocher, since I'm unable to work full time. I just know that it all sucks.
Do any of you take pain meds of any kind? What works and what's not so good? It seems like some stuff makes me hurt worse... Oh, and are any of you on Plaquenil? I was taking it for Lyme, and wonder if I shouldn't go back on it.
Hi Dmara, I realise its probably not something you want to hear, but I’m going to chime in with Lamb for this one - the only information that indicates that RA is milder than PsA are old studies (often in the 50’s to 80’s, but occasionally up to 2000), and old rhuemys (or at least ones that don’t read the recent research).
All the recent studies indicate that disability is just as bad (and in some cases worse because of our propensity to big joint and spine involvement), and increased mortality is the same, in uncontrolled disease. As Lamb said, its the inflammation that does it.
I’ve been trying to figure out for the last year why the perception that it isn’t as bad remains, and I now have a theory.
RA is more common, and historically has been something more easily measured (engineers and scientists identify much better with stuff they can measure). ESR and CRP are more commonly raised (according to an enormous retrospective study across the US and Europe, on presentation for diagnosis, only 48% of PsA patients had a ESR or CRP that was considered significant by the treating practitioner).
The RA’ers have RA factor to prove they have it, and anti-CCP, which for many (not all) provides a good index of disease activity. Ours is a disease of exclusion, and very difficult to measure.
The key thing, though, I think, is that arthritis damage since the year dot (since x-rays) has been measured by Sharp Scores. Sharp Scores measure only erosion of bone. PsA both erodes and adds bone, and in the big joints in particular, they can almost completely cease to function due to bone bridges that grow acoss the joints and/or impede the tendons, but this won’t show up at all in the sharp scores.
So your Sharp Score might be mild, and therefore your arthrits labelled as mild, while you can’t lift your arm more than 20 degrees due to bone formation in your shoulder.
There is a group trying to change this (Group for Research into Psoriasis and Psoriatic Arthritis Assessment - GRAPPA) - a group of rheumatologists and dermatologists. Their website is hard to navigate, but has some good info if you can figure it out.
Articles are at;
http://www.grappanetwork.org/resources_pub.php
Unfortunately, my Rhuemy is not part of this group, and he most firmly does not understand. He likes to give lectures about how his sister climbed to Everest base camp with osteoarthritis, and since mine is so mild, it shouldn’t have an impact on my quality of life (visible swelling is hard for him to see, and no erosions in the X-rays I insisted on at the 4 month mark).
How a Rhuemy can possibly equate PsA to osteo is a bit beyond me - though severe osteo can certainly cause enormous pain, which then flows to disability and fatigue, so maybe he’s a bit confused about sequencing and progression :).
More on the topic, I generally don’t explain. Only my close family and friends, boss and close colleagues at work, as a matter of necessity, have any right to know.
For everyone else, I only mention it if I am struggling that day and my radar suggests that they will make an effort to understand.
None of the carers at my daughters Kindy know, with the exception of the director, because I needed to ask her to inform me immediately of suspected Chicken Pox (normally they tell you if there’s a confirmed case… Eventually)
It’s hard - looking so young and limping, unable to even pick up your little girl, (not now I have Enbrel Miracle :)), but I think it’s important to remember that you don’t actually owe an expanation to anyone, except you husband/ wife, kids, other people who seriously help you, or who you seriously impact with your disability / cranky / fear.
I have a couple of colleagues who know because they are also part of the management team, but I am not confident in their support. When they occasionally ask how I am, I tell them I had a hard time last month because “insert excuse here” . But everythings fine now…
Ummm, sorry, I realized that was a big ramble. I’m awaiting another diagnosis nervously. And I guess I’m trying to focus on things I know and feel I might have some chance of controlling 
sorry for the extended version!
@Jen, I cannot access the link you included without a membership to it. I don't shy away from facts, but I still cannot find literature anywhere with facts that state that PsA results in shorter life span, or higher incidences of vasculitis, or organ failure. If someone has links to these, I'd like to read them. Maybe my information is outdated, but I am a facts based person, and I need to see it. Again, I am not comparing the joint damage, or numbers of joints affected, from disease to disease, just purely the mortality rate and effect on internal organs. I'm not posting to be argumentative, I'm just more conservative in my approach to educating those who ask me about the disease and I want to be factual.
Jen said:
Hi Dmara, I realise its probably not something you want to hear, but I'm going to chime in with Lamb for this one - the only information that indicates that RA is milder than PsA are old studies (often in the 50's to 80's, but occasionally up to 2000), and old rhuemys (or at least ones that don't read the recent research).
All the recent studies indicate that disability is just as bad (and in some cases worse because of our propensity to big joint and spine involvement), and increased mortality is the same, in uncontrolled disease. As Lamb said, its the inflammation that does it.
I've been trying to figure out for the last year why the perception that it isn't as bad remains, and I now have a theory.
RA is more common, and historically has been something more easily measured (engineers and scientists identify much better with stuff they can measure). ESR and CRP are more commonly raised (according to an enormous retrospective study across the US and Europe, on presentation for diagnosis, only 48% of PsA patients had a ESR or CRP that was considered significant by the treating practitioner).
The RA'ers have RA factor to prove they have it, and anti-CCP, which for many (not all) provides a good index of disease activity. Ours is a disease of exclusion, and very difficult to measure.
The key thing, though, I think, is that arthritis damage since the year dot (since x-rays) has been measured by Sharp Scores. Sharp Scores measure only erosion of bone. PsA both erodes and adds bone, and in the big joints in particular, they can almost completely cease to function due to bone bridges that grow acoss the joints and/or impede the tendons, but this won't show up at all in the sharp scores.
So your Sharp Score might be mild, and therefore your arthrits labelled as mild, while you can't lift your arm more than 20 degrees due to bone formation in your shoulder.
There is a group trying to change this (Group for Research into Psoriasis and Psoriatic Arthritis Assessment - GRAPPA) - a group of rheumatologists and dermatologists. Their website is hard to navigate, but has some good info if you can figure it out.
Articles are at;
http://www.grappanetwork.org/resources_pub.php
Unfortunately, my Rhuemy is not part of this group, and he most firmly does not understand. He likes to give lectures about how his sister climbed to Everest base camp with osteoarthritis, and since mine is so mild, it shouldn't have an impact on my quality of life (visible swelling is hard for him to see, and no erosions in the X-rays I insisted on at the 4 month mark).
How a Rhuemy can possibly equate PsA to osteo is a bit beyond me - though severe osteo can certainly cause enormous pain, which then flows to disability and fatigue, so maybe he's a bit confused about sequencing and progression :).
More on the topic, I generally don't explain. Only my close family and friends, boss and close colleagues at work, as a matter of necessity, have any right to know.
For everyone else, I only mention it if I am struggling that day and my radar suggests that they will make an effort to understand.
None of the carers at my daughters Kindy know, with the exception of the director, because I needed to ask her to inform me immediately of suspected Chicken Pox (normally they tell you if there's a confirmed case.... Eventually)
It's hard - looking so young and limping, unable to even pick up your little girl, (not now I have Enbrel Miracle :)), but I think it's important to remember that you don't actually owe an expanation to anyone, except you husband/ wife, kids, other people who seriously help you, or who you seriously impact with your disability / cranky / fear.
I have a couple of colleagues who know because they are also part of the management team, but I am not confident in their support. When they occasionally ask how I am, I tell them I had a hard time last month because "insert excuse here" . But everythings fine now......
http://www.ncbi.nlm.nih.gov/pubmed/9627021
http://www.uhnresearch.ca/studies/cpsrd/psa/psa_nl09.html
http://ard.bmj.com/content/64/suppl_2/ii14.full
http://www.clinexprheumatol.org/article.asp?a=3467
http://rheumatology.oxfordjournals.org/content/40/3/243.full
http://medind.nic.in/jaa/t02/i3/jaat02i3p64.pdf
http://circ.ahajournals.org/content/116/20/2346.full
http://circ.ahajournals.org/content/116/20/2346.full (This one could ruin your whole day 59% greater chance of cardiac)
http://www.hindawi.com/journals/ijr/2012/714321/ (a confirming one)
Anyway, you get the whole idea. Personally educating "others": about the disease is akin to farting up wind. It has nothing to do with "you" (at the moment) and you quickly become a drama queen in others eyes. I used to entice young men to jump out of perfectly good airplanes while being shot at (later on ropes out of helicopters.) "'worry about about getting shot when it happens, don't worry about getting killed, you won't know it and in the after life you won't care"
There aren't any of us who are handicappers, although Andrew is close. I'm sure he could explain more easily why those reduced life span numbers slash/risks change on a daily basis and on an individual basis have little meaning (there are two sides to a distribution curve.)
Thanks @Tntlamb. No wonder I couldn't find these easily myself! The first four at least are out of Toronto, Canada!
As for educating others, I really do want to avoid being a drama queen, which is why I've downplayed explanations thus far so as not to appear that I am after pity, and avoid scaring those who do not need to be scared.
My son is type-1 diabetic, and I know that he could also potentially have a shortened life span due to his auto-immune disease. We struggle daily to maintain good control so that we can mitigate the long-term risk factors. There are many type 1 diabetics that live a full life, complication-free, so I intend to take this pragmatic approach as well. All we can do is our best, and try to have the best quality of life possible.
If the disease has other plans for me, well then I'll figure out more then just like the guys jumping out of the plane. BTW, the potential for disability does indeed concern me, I'm just saying that the general population does not care unless they've experienced it.
Thanks again for all the material. It will take me awhile to go through it, but go through it I will.
As always, you are a wealth of information.
I wasn't accusing you, DMARA. just a caution for all of us. We want SOOOOOO badly for others to understand, they just likley never will (heck I'm not sure I understand.)
Dr. Marc,
*I* believe I have chronic lyme, but boy, try to get doctors to agree! No way! Esp considering the govt is more than willing to take away a doctors license for treating or talking about chronic lyme. It took 1.5 years to diagnose me with lyme, even tho I told the doctor I initially saw about finding a tick and a rash lower on my body. Because I didn't get that bullseye, she nixed it. Lo and behold, I DID have lyme and babesia, and have suffered for over 7 years as a result.
So, here's my big question... If it's mimicking Psa, will Psa treatments help it? I take supplements, some mild pain relievers and not much else. Ambien, which I'm trying to kick, but it's proving much more difficult than I realized. Before the Ambien, however, I hadn't slept a full night in 4 years, so it's at least been part of the over all improvement in health I've experienced.
Oh I know. I don't understand yet either! However, I'd like to. It doesn't help that after further reading, the "jury is still out" on the whole life expectancy stuff. I tend not to trust the foreign studies as there are less controls and adjustments for risk factors. I have a major peeve with poorly run studies. The US studies showed no increased risks for the most part. It just makes me wonder. There are too many complicating factors. US health care, and the ability to see doctors more often may muddy the results because even though we have the same disease as our foreign friends, do we get better care, better nutrition? Who the heck knows? It's just like that aspirin study from Aus. showing a higher rate (a whopping 1.9 percent) increased chance of degenerative eye disease. This actually made the news and totally flipped out my uncle. But, wait, duh, degenerative eye disease can result from cardiovascular disease whose sufferers are often known to be on an aspirin regimen!!! What came first, the chicken or the egg? Lamb, this is not an argument to your points, I am going from what I'm reading on the links themselves. One of which stated, " Although psoriatic arthritis may be associated with an excess prevalence of cardiovascular disease risk factors, it remains uncertain whether higher rates of clinical cardiovascular disease are independently associated with the disease itself." http://circ.ahajournals.org/content/116/20/2346.full The other link stated, "The diagnostic criteria used in each included study are not uniform." http://www.hindawi.com/journals/ijr/2012/714321/
I'll keep on reading though. Again thanks.
tntlamb said:
I wasn't accusing you, DMARA. just a caution for all of us. We want SOOOOOO badly for others to understand, they just likley never will (heck I'm not sure I understand.)
Actually DmaraJade, I lived in China for years and got significantly better care there. I had a 7 day hospital stay, a TKR, a synovectomy and achilles repair with multiple surgeons attending and it cost less than $50K and healed beautifully, no complications whatsoever. In fact, when I got the other achilles done and due to travel difficulties for me being in a cast and having to take a ferry over to Hong Kong, the surgeon herself came to my apt to cut off the cast!!! My hubby did the comprehensive med trip to Bumrungrad in Thailand as well. I've found medical care outside the US to often be superior. My surgeons and specialists all emailed one another results and labs, everyone was on the same page, and I was the spearhead of all my treatments. Outside of the US, the patient gets all reports, labs, xrays and videos of surgeries. I love my GP here, and our insurance is fine, but there's a reason medical tourism has become so big. The US medical situation has fallen behind other countries.
As far as studies go, I think they're all suspect, as the data is often cherry picked to support either a chosen result or medicines efficacy. Some are legit, but I question them all, and look to see who funded them.
No doubt. There are those that receive great care all over the globe, and some receive cruddy care. My point was not about that, but inconsistencies in scientific studies that may or may not consider these factors. From what you say about the studies, you and I are on the same page! It must be my auditing background. It's hard to ditch the professional skepticism! Glad your med care situation was so good.
The inescapable number is lowered life expectancy whether its id the Higher number in the EU where there have been more studies or the lower number from the US where there have been fewer studies isn't even important. A person can go nuts reading and deciphering studies (I do and I make my living at designing the statistical base for them)
The question you ask is like most "diseases" There isn't an answer. We can't do a double blind study and accurate regressions because first as you noted, we can't repeat the circumstances. We can only develop a larger and larger data base so the the variables become "less variable" (so to speak)
The question that has to be answered in reality is where does the inflamation come from? Is IT the disease or is IT the result of the disease. hell we haven't even defined the disease yet. Its isn't TNF's or if it was the biologics would work for everybody. It isn't the HLAB27 (or we would all have it) and on goes the list. we are still treating symptoms OF something.
The statement " Although psoriatic arthritis may be associated with an excess prevalence of cardiovascular disease risk factors, it remains uncertain whether higher rates of clinical cardiovascular disease are independently associated with the disease itself." doesn't mean what you think it does. (comparing studies isn't a lot of help BTW) They are saying People with PsA have a higher rate of Cardio Vascular disease (some sudies suggest 60% higher) You can take THAT to the bank. What is less clear is the Question do people with Cardio Vascular disease have higher rates of PsA? Sounds stupid I know. Then there is the third question Is there something else that could be causing both independently of each other say Lymmes, gluten intolerence etc.
The best way to describe is the statement "...it remains uncertain whether higher rates of clinical cardiovascular disease are independently associated with the disease itself." is to say the research is saying we have answer, we don't know the question, but fund us some more and we'll get to it.
As far as regression and some of the other "terms" I was using that means the statistics are not the whole answer. Hate to go to gambling but.....
Slot machines are random number generators. The odds are the same everytime you pull the handle right??? Wrong Its electronically impossible to create such. The odds change. Anyone who has had a Hot machine knows it, anyone who has had a cold machine knows it. That's regression.
Another example of regression Flipping a coin is 50-50 for heads or tails you get heads 7 times in a row the next time you flip it its 50-50 right? (I mean your high school math teacher told you so) Its not. If you were betting, you should bet heads. It has a much higher chance of coming up. (vegas makes afortune on the Roulette wheel because folks figure its time for tails or ignore the regression that says it will be heads) I don't know WHY its heads. maybe the coin is dirty, maybe the guy flipping it has just the right "english" to make it land right. Same with slots why a hot machine??
Want to change the odds of regression? Power ball tickets Buy 1 or buy 100 doesn't matter your Odds are the same. Buy 10 million and your odds have increased by less than 1%. Everyone knows buying 10 won't help but they do anyway.
In either the case of the coin flipping or lottery tickets or playing the slot machine The Initial observation (its hot/cold, Its heads, more tickets won't help win the lottery) but folks HOPE the observation is wrong. The observation is right, we just don't know why.
So when I say I don't understand, I really do. I just HOPE the problems with cardio-vascular (even though I have had them) aren't true etc etc.
You hit the nail on the head Lamb.
They (scientists) aren't asking the right questions!. Also, the study groups seem very small.
All points which you bring up here, and peeves of mine. I will keep digging and reading, and perusing whatever you send, not to see the grim side, or validate a worse case scenario, but to get to some level of truth. I am a self-professed information monger, but I don't always necessarily believe everything unless it's backed up with fact.
I too hope that the cardio-vascular correlations aren't true (not that it would matter with me) since there is a family history of heart disease. I've already asked myself many of these same things.
You are knowledgeable and appreciated..
Thanks for talking shop with me on this and not interpreting my statements as combative, but rather, inquisitive.
maybe you will appreciate this bit of info on studies and the size of them Size of study isn't as important as you think. In 1977 Elton and Gruberworked out an empirical example of the gains from diversification. (size of study) Their approach was to consider a population of 3290 securities available for possible inclusion in a portfolio, and to consider the average risk over all possible randomly chosen n-asset portfolios with equal amounts held in each included asset, for various values of n. The market was pretty darn volatile in 1977. What the study did was prove what had been up to that point a mathematical model only (why it took 3 or 4 hundred years for someone to question the original statisticians is beyond me) It took months and a computer (pretty new at that time as it took MILLIONS of calculations and we paid by the minute for main frame time which made dial up look like the speed of light) actually to figure out what number of randomly chosen stocks we provide the maximum diversification. A short way of saying an accurate (within one standard deviation) study. The number was between 18 and 30. Concievably 18 random groups of 18 or 324 subjects could provide predictive data accurate with in a few percentage points. This is theory behind polling and if notice the size of many of these studies