I understand Cooper, perhaps you could hop over to the Complementary therapies category and start a thread (or use the diet one there now) to further explain your opinion and provide some elaboration on the emerging science you refer to?
Thanks...that's a great idea.
Thanks Cooper, that would be great. I have Crohn’s as well so will be very interested
Seenie weighing in! I don't mind at all, Jen. Sorry I missed this discussion earlier.
There's no doubt in my mind that I have less pain when I'm eating a low carbohydrate diet. But I don't confuse the symptoms with the disease process. The trouble is, pain is so subjective. I had manageable (minor) pain levels for years. Oh, I complained all right, but it was never unbearable pain. Long story short, I'd had both knees replaced and I had erosions in my feet before they diagnosed PsA. And even then, the rheumatologist assessed my PsA as mild. Then, within a year, both my hips went from mild/moderate to severe. And that was only discovered when I commented that one of my hips felt a bit odd.
It was at that point that I went to the specialty clinic, where my PsA was assessed as severe. And it was there that they discovered why I had severe disease without terrible pain: I have an extraordinarily high pain threshold. A "normal" person would have been screaming in agony years before.
I talk too much. To get back to the joint count: I have had both knees replaced and one hip. The other hip is shot and way past the stage of needing to be replaced. So why do I still have that hopeless hip? Because there's no point in replacing a joint that feels just fine, that's why. Go figure. My surgeon shakes his head and rolls his eyes.
The point: diet may improve your symptoms. But I'm not aware of any scientific evidence** that diet has any effect on what the PsA is doing to your body. That's why disease process needs to be monitored by more reliable methods than a gauge on your pain.
=====
**Question for Lamb: do you know of anything?
Jen said:
So glad to hear that you feel better by what you eat. Don't confuse that with slowing disease progression though - that's a different issue, and you only have to ask some of the people on this board to understand that managing ok without meds (and having quite manageable levels of pain), does not mean there isn't terrible damage being done to your joints. I can't quite remember the number of joint replacements Seenie is up to, but she is a case in point (hope you don't mind me dobbing you in Seenie! :)
Cooper s said:I think early diagnosis may also play a big part in how quickly the disease can progress. I apparently only have a mild case in all my joints, which is why, I guess, that what I eat plays such a huge part in me feeling as well as I do. And that's a fact. Guess I'm just lucky....so far (three years).
I don't know that I know anything except that same ol' same ol' There may be something new. I'd love to see it. I'm one of those awful guys who turns raw data from studies and research into "results" A lot of it is medical. (right now its post shingles nerve pain) Understand a lot of guys in my profession turn to more honest and respected work like becoming personal injury attorneys or politicians. I'd be very interested in your Research Cooper. So far I have not seen a single study from anyone that establishes a link between "PsA the disease" and food. There is no DOUBT some foods cause inflammation. You don't need a million dollar study or a 500.00/hr number cruncher for that. Just accompany me to Shrimpfest at the Red Lobster, or Lobster night on a cruise ship.
The thing is inflammation (and pain) are only a small part of PsA and are SYMPTOMS of the disease they are not the disease. There are far more sinister components of the disease. I had lots of physical pain, but I also have a badly beat up body (I used to jump out of airplanes and fight with people) But that isn't what got me to a PsA Dx. It was forgetting where I was on a freeway between LA and San Diego during Rush hour with a Dodge Durango full of Grandkids on our way back to Disneyland from Sea World. Turns out it was Heart Failure. Wife was told I had months to live. Fortunately my wife insisted I get the "spots" on my face removed. Apparently She wanted me to look good in the casket. The dermo of course looking for more spots decided I really needed to see a Rheumy. She did in three months what the top heart centers in the country could not. (Considering she the rheumy and my daughter practically grew up at my place it was kind of amazing) we all ran together in the Bank run later that year)
But CHF is not the only unseen (or unfelt) and non-inflammatory effect of this disease. There are pituitary problems (leading to low T) joint erosions, Diabetes, depression, fatigue, high cholesterol, obesity, blood pressure, heart arrhythmia, thyroid, and few others (I don't want to be dramatic so I'll stop) AND some of that list is treated by some very restrictive diets. But more go away when the PsA is treated than any other way.
We have 23 new Primary Care Physicians entering residency (some of whom I hope will enter Rheumatolgy Fellowships when they are done here) They will soon be getting a lecture on developing confidence in their skills and applying protocol rather than being a slave to protocol. A tough sell when insurance companies, quality control managers, and healthcare administrators are pushing evidence base. BUT they haven't learned the two basic rules of statistics:
1. Correlation does not imply causation or Association does not mean Causation.
and my favorite
2. Statistics and Causal Inference is for horse thieves, snake oil salesman AND government bureaucrats
Nice..I guess I'm looking at this all wrong...the way I see it is I guess too simplistic. Each pound of weight gained is three pounds of extra pressure on the knees...each pound lost is three pounds of pressure off...eat right, lose weight, slow progression of disease....and the bonus is that eating right gets the inflammation back in balance from the 21 to 1 ratio of Omega 6 to Omega 3 that is the current North American norm. Whatever...I bow to your superior knowledge. I just thought the poor kid who posted here asking about the progression of the disease could do with a little optimism after all the pessimism I saw. I can only speak for myself...just got back from the gym after an hour of density training...now finishing off another 3,000 mg of Omega 3 with an omelette and some broccoli (latest study shows it can halt the progress of osteoarthritis)...feel amazing...my disease is currently less of a problem than it was two years ago. If it is gonna come crashing down, I ain't going without a Hell of a fight. Have a great weekend one and all.
tntlamb said:
I don't know that I know anything except that same ol' same ol' There may be something new. I'd love to see it. I'm one of those awful guys who turns raw data from studies and research into "results" A lot of it is medical. (right now its post shingles nerve pain) Understand a lot of guys in my profession turn to more honest and respected work like becoming personal injury attorneys or politicians. I'd be very interested in your Research Cooper. So far I have not seen a single study from anyone that establishes a link between "PsA the disease" and food. There is no DOUBT some foods cause inflammation. You don't need a million dollar study or a 500.00/hr number cruncher for that. Just accompany me to Shrimpfest at the Red Lobster, or Lobster night on a cruise ship.
The thing is inflammation (and pain) are only a small part of PsA and are SYMPTOMS of the disease they are not the disease. There are far more sinister components of the disease. I had lots of physical pain, but I also have a badly beat up body (I used to jump out of airplanes and fight with people) But that isn't what got me to a PsA Dx. It was forgetting where I was on a freeway between LA and San Diego during Rush hour with a Dodge Durango full of Grandkids on our way back to Disneyland from Sea World. Turns out it was Heart Failure. Wife was told I had months to live. Fortunately my wife insisted I get the "spots" on my face removed. Apparently She wanted me to look good in the casket. The dermo of course looking for more spots decided I really needed to see a Rheumy. She did in three months what the top heart centers in the country could not. (Considering she the rheumy and my daughter practically grew up at my place it was kind of amazing) we all ran together in the Bank run later that year)
But CHF is not the only unseen (or unfelt) and non-inflammatory effect of this disease. There are pituitary problems (leading to low T) joint erosions, Diabetes, depression, fatigue, high cholesterol, obesity, blood pressure, heart arrhythmia, thyroid, and few others (I don't want to be dramatic so I'll stop) AND some of that list is treated by some very restrictive diets. But more go away when the PsA is treated than any other way.
We have 23 new Primary Care Physicians entering residency (some of whom I hope will enter Rheumatolgy Fellowships when they are done here) They will soon be getting a lecture on developing confidence in their skills and applying protocol rather than being a slave to protocol. A tough sell when insurance companies, quality control managers, and healthcare administrators are pushing evidence base. BUT they haven't learned the two basic rules of statistics:
1. Correlation does not imply causation or Association does not mean Causation.
and my favorite
2. Statistics and Causal Inference is for horse thieves, snake oil salesman AND government bureaucrats
I'm in the gym everyday... There are three parts to fighting this disease coop Take your medicne (it stops the disease) keep moving (what doesn't move rusts) and keep healthy. Skip any of the three and you are pretty much screwed at some point. As the new kid you prolly haven't heard what is said to those who load up on their meds and retire to their recliners (and then complain they hurt) You are going to be a great addition. You have much to share it appears. BUT listen too. The disease has nothing to do with inflammation or pain. Those are results of but a small part of it.
Wow Jen. I'm new around here and that was extremely helpful!
Jay
Jen said:
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 :)
Hi, Jay
We say it over and over again here: early and aggressive treatment with the best available medications gives you the best chance of a good outcome. There is no cure, but there is a good chance of living well with this disease.
Thanks Seenie!
I noticed pain in my left foot in Nov, pain in my right knee in Jan, swelling and pain in my right index toe in April, additional swelling in the tips of my left toes in May. It was difficult scheduling an appt w a rheumatologist - only three in the area. I got my diagnosis in June and began Simponi almost immediately. Although the swelling and misshapeness (crooked toees) only diminished a little bit, the pain relief has been amazing. I actually hiked (and kept up) with friends a couple of weeks ago, something I was afraid of since last Nov. Unfortunately, it’s not all peaches and cream. While on the biologic, I have had two bouts of lower backaches which each lasted about 5 or 6 days. How fast? I don’t know. I am grateful for more better days than bad days.
I would bet that you have more pain and stiffness coming if it is PsA. My ankles had been swelling for months. Dr thought that was related to another issue I was having. Had surgery for that issue then ankles still continued to swell. Then I started to hurt in all of my joints and then the stiffness came and severe constant pain. There were times when I could hardly get out of bed, feed or cloth myself.