I was diagnosed in 2011, looking back though I have had PsA much longer. Tried humira, methotrexate and areva. I couldn’t tolerate the side effects of the methotrexate and areva. Currently on enbrel and was just switched from Celebrex to plaquenil just over a week ago. (Not sure plaquenil is helping) I have been told by my rheumatologist that I also have fibromyalgia. It makes sense but I still feel like there is an “I don’t know what is wrong so let’s call it fibro” stigma with that diagnosis. I was very active before the diagnosis and try to remain as active as I can be although I can’t work anymore. (I was a hairdresser for 19 years) I still run, go figure… Not like I used to (qualified for Boston in 2010, fourth in my age group in the qualifying marathon 3:49) Now I am slow and it isn’t like it used to be but it is what I love and makes me feel like there is a little bit of me left. Have had a wide array of other serious medical issues that make PsA or the fibro flare. (Breast cancer, thyroid cancer, brain aneurysm/subarachnoid hemorrhage that put me in cardiac arrest, MAJOR depression that won’t go away… Now, headed straight for menopause…really?)
I am at a point of desperately trying to do something to help myself. Granted, I feel certain that things would be worse if I was not on the meds but boy I wish things were much better. I have read a lot online about Paleo diets (my rheumatologist actually said in her opinion some people are helped by it), vegetarian diets, etc that benefit those of us with an autoimmune issue. Lately, I have lived off of yogurt (plain with cocoa powder and stevia and toast. Most other things leave me feeling nauseous to even smell it.
Wondering if anyone has had success with any such lifestyle changes? Getting desperate…
Thanks for letting me vent and for any info.
Hey Alara
Welcome to the PsA clubhouse. We’re glad you joined us.
Have you found our Newbie’s Guide yet? It contains this short piece.. Another thing you might want to do is use the magnifying glass near the top right and search for “diet” (or something more specific if you want). That should spit up a good reading list for you. Then, if you join in on any of those conversations, all the people who are on that thread will get an email, and some may answer your questions.
Good luck with this: keep in touch and let us know how it goes!
Seenie
Hi @Alara,
what a change you’ve experienced and what a long series of unfortunate illnesses that have derailed you. As to your question about diet, it’s clear that some people’s general sense of wellness absolutely can be improved by dietary changes. The progression of their disease, however, cannot be halted by such changes alone (in pure scientific measures, at least). Many are helped by low/no carb plans and others find that such changes make no difference. I am one such example–I have been vegetarian, vegan, I’ve cut out carbs and also been gluten free–on these plans I just feel angry at the world!
I hope you get some relief from your current symptoms and get to eat something besides yogurt!
Hi Alara… Welcome… I am new here also… I have had great success with dietary changes… I was in a wheelchair pretty much in 2011 after a few months of joint pain. It was pretty fast. I was told that I need to go on mtx immediately or I would progress very fast. I didn’t do anything but dietary changes. I only went gluten free and it took about 6 months and the pain was gone… I’m learning now that I was just lowering the inflammation and not slowing the disease. I’m trying to understand the difference. If I haven’t got that much worse, it has helped in my eyes. The only thing that really scares me is that my joints are still very tender, and I am having some new symptoms. So I feel that dietary does help, but it took months to notice a difference. And like I’ve been told… It will not make you’re disease stop. I feel it just slowed things down. My rheumy says that there’s a doctor that puts all his patients on a gluten free diet with great success. Well that’s my experience and I’m going to start on something myself very soon. I’ve just had many health issues including cancer, so I’m very anxious about it.
Thanks to all of you, the replies are much appreciated. Good food for thought! Glad there is a place to come for info and moral support :))
Welcome!
Hi Alara.
It’s brilliant that you’re still running. As well as the fact that you love it, it’s surely a very good thing for your overall health.
The yogurt diet sounds a little limited lol! Do you know what’s causing the nausea? I reckon we benefit by a really good diet in the old fashioned sense i.e. as many fresh vegetables as possible, fish, pulses, nuts, the best oils, not too much meat, very little sugar. I think following a regime such as paleo that has very strict guidelines and promises extraordinary results can make us feel that we’re really taking control and fighting back whereas a more common sense approach can seem a bit dull, more of a slog. But I’m pretty sure I feel better all round with a very varied diet.
I do not believe that this disease can be controlled with diet or any other lifestyle approach but I am sure its effects can be limited greatly by good food and exercise. That probably goes for the menopause too.
Wow, you have had a lot to contend with. That must be quite a weight on your shoulders. I would imagine that such major health issues leave a legacy of anxiety perhaps? I’m wondering how far back they are now, sounds to me like you could do with a straight run with ‘just’ (I know!) the PsA and possibly fibro to get to grips with. With a biologic on board and being a runner who’s interested in the healthiest lifestyle possible things could start looking up, compared to what you’ve been through so far anyway.
Wow. You have been through a great deal recently, and I applaud you for still being active. I’m glad you found this site, and yes, it’s a great resource for information and support. I haven’t posted much, but wanted to share my food experience. I was officially diganosed with PsA last November, but have had numerous joint problems for 20+ yrs. Now I know it was beginnings of PsA. Over the last 5 yrs, I tried being gluten-free and dairy-free, though not always perfectly. Back then, I felt better when I avoided both, but it wasn’t a HUGE change. However, over the last year, gluten and dairy both make me feel awful within 2 days of eating it. If I cheat for more than 2-3 days, my joints hurt for 2 weeks. 
I just returned home from 3 days with my mom/brother and a medical situation I had to help with. The 3 days of travel, hospital wait times,and eating out meals with other family members about did me in. So personally, I feel better being gluten-free and dairy-free because it DOES inflame me. I know everyone is different though.My rheumatologist is wonderful and well sought after in my metro area, and she told me 4 yrs ago that half of her patients do better and have less pain going gljuten-free and dairy-free. I figured 1 out of 2 is good enough odds for me, and sure enough, it helped. I know it won’t END the disease, but feeling better is half the battle to me.
—Lisa
Absolutely diet can make a huge difference at least in how you feel. It isn’t so much the particular foods although as you better understand the process one can understand why we start saying things like dairy, gluten, carbohydrates etc. And it may well be that classifying them that way makes sense.
Pain control is a major part of your immune systems job. Located in the “brain” are what are called opiod receptors Opioid receptors are distributed widely in the brain, and are found in the spinal cord and digestive tract. These have NOTHING to do with opiates - pain drugs, despite sounding similar and this leads to a lot of confusion.
The endogenous opioids are dynorphins, enkephalins, endorphins, endomorphins and nociceptin. The opioid receptors are ~40% identical to somatostatin receptors (SSTRs) for what it is worth. The most important one for us are the endorphins. Remember I said the receptors are found in the digestive tract. In fact the majority (up to 80%) are in the digestive track.
So here is the science. The receptors “recieve” the endogenous opioids including those who do the best job of managing pain. IF a particular part of your body is extremly active the receptors go to work sucking up the endorphins etc. You body produces a limited supply of these things (more a bit later) Things like dairy, gluten, comple carbohydrates make your digestive track go to work and suck up the endogenous opioids leaving a lower supply of them for the rest of your body. So things like pain control inflammation control (PsA symptoms) take a hit.
You have a couple of choices. You can slow down your digestive system which is sucking up as much as 80% of the endogenous opioids by eating things that are easier to digest such as proteins OR you can produce more endogenous opioids. This of course and sasly require exercise.
The bottom line is your docs all SAY diet and exercise, But they don’t say why.
So here it is Good Diet and Exercise results in better pain control and less inflammation.
Just a funny story (sort of) Years ago (late 60’s) I was taking a hike in a Southeast Asian jungle when an “event” caused me a fair bit of pain. We needed to hike elsewhere before another event made things a lot worse. But the pain was a rather limiting factor. My partner who was an experience hiker had a solution. (warning grossness to follow) The solution was to induce vomiting, It immediatly caused a rush of endorphins (ever felt better after throwing up?) slowed down the digestive system and relieved pain just enough to get out of there…
Diet and exercise are KEY with this disease. Those two legs along with the third leg medication make a very stable platform for treatment… By the way three legs are optimum for stability of a stool. The more you add the more difficult to stabilize on rough ground
yeah, right. a “hike”.
Ages ago I posted about a trek of my own. Not exactly jungle warfare though close - trying to get to the hairdresser and back from my fairly isolated house without a car. The last leg was just ludicrous, struggling up a hill that went on and on in the pitch dark, in a storm, with a large basket that the wind buffeted, creating a drag on my every step. None of it was easy, none of it felt like a Good Thing.
Perhaps I should have made myself vomit. But didn’t know about that then so just pressed on wondering when to lie down & die. Then I got home and inspected my toes out of which blood was spurting. And then … oh boy, what a high! Back in the day I’d push myself quite far with exercise but this was something else. I felt absolutely invigorated and alive, certainly no pain anywhere. And for the first time in … well, ever, my husband declared that I looked ‘beautiful’!
So that was them opioids right? They are good stuff!
Thats what they are. “runners high” People do become addicted to “exercise” for that reason. I might add orgasm is the same mechanism, much better than vomitting…
I really appreciate this post, especially as it is backed up by the science.
I think starting an exercise or PT regime must be really hard for anyone who doesn’t have the exercise habit or has fought shy of exercise for a while due to PsA pain and stiffness. The ‘high’ may not result from gentle or moderate exercise, in fact I expect some may find that they feel simply knackered or out of sorts after getting moving, as well as resenting the demands on their time. But the beneficial effects will build up slowly but surely. Movement truly is terrific medicine for PsA and without the evidence you’ve provided that can just sound like a ‘worthy’ statement.
I think my exercise habit plus Humira has saved me from the worst that PsA has to offer. I think I may be unusually physically capable for a 61 year old woman despite PsA and a few other issues in the offing and that is almost certainly down to exercise. Some tasks / movements hurt like hell but they are doable and the kick-back doesn’t last.
And in response to the OP and lisarockgirl4, as it happens I found myself thinking seriously-ish about a gluten-free diet today. I’m so glad nobody’s suggested that diet can cure PsA, mainly because while that may not be possible, it does seem possible to minimise symptoms greatly and that is something worth focusing on without the distraction of the unsubstantiated promise of a cure.
Don’t think I can go down the food elimination route without a lot of misery, too keen on food in general. But for those it works for, hope you get a result!
The problem with gluten free I found is that the alternatives are VERY high calorie and THAT is another issue entirely. (and a tough one for me)
Whilst it might not slow the progression of the disease itself, I found diet absolutely critical to manage my symptoms. A lot of people with PSA also encounter significant gastrointestinal disturbances. Mine were quite extreme. I ended up doing an elimination diet (ie - I eliminated everything except what I knew never seemed to cause problems in the past, then gradually re-introduced things).
So I ate fish and white rice for two weeks. No lemon, no sauce, no anything. Breakfast, lunch, and dinner. Not saying it was fun! But I certainly now have a list of foods that I know will leave me feeling truly lousy (if not throwing up), and I can avoid them (unless I’m on steroids - then all bets are off cause the steroids allow me to eat those bad foods!).
My bad foods include most on the standard lists you see - highly processed, too much saturated fat etc, but also some others that wouldn’t normally be a problem for most people - capsicum, red meat, red wine.
The first is to do the obvious (ie cut out most processed stuff), but if you are still getting nauseous (and in particular if you are losing weight unintentionally), then cutting out certain foods to see whether they help is certainly an option.
I don’t personally go with the paleo diet as a one-size-fits-all solution (lets face it, the main reason cave men didn’t get autoimmune disease and other chronic illnesses was that their life expectancy was 31), and for me it obviously doesn’t work as the one thing that will make me sick is high amounts of meat based protein, particularly if it is red meat, though I do know a few people who swear by it.
Despite half my family being coeliac, I didn’t react to gluten at all when it was re-introduced. I do know people for whom it makes a really big difference though.
I think it does have a big impact on quality of life, so if you can manage it, it is worthwhile trying a few different things to see what works for you.
Hi… The thing about going gluten and dairy free is that you have to keep with it for awhile before you see results… It isn’t quick… The only reason I stuck with it is because my whole family has celiac and they were telling me that I didn’t have psa but I had celiac. (I knew they were wrong, but questioned it). So I wanted to be able to walk and was afraid of meds. I had nothing to lose. You cannot cheat, or the swelling and pain come right back. It took about 6 months and it was remarkable. It’s been six years and even though I am thinking about meds now, I know that if I have a problem taking them, (due to other medical issues), I feel so much better this way. It made a world of difference.
I saw a doctor of environmental medicine and he did some blood work as well as skin testing. I was allergic to eggs and had the two antibodies against gluten. I cut out both a little over a year ago (as well as corn, corn syrup and cane sugar). It takes a long time but I think it helped, anyway, recently I fell off the wagon and had a biscuit and a cookie. It was not a good idea because I felt terrible for 2 days, my eyes even swelled and were driving me crazy. I felt so tired, it was one of the worst days I had in awhile. I can still have a little bit of chocolate here and there, but I’m off the wheat wagon for good now. It’s by no means “cured” me, I’m still on Stelara and MTX and have some bad days occasionally but I think I’m winning the “war”.
One thing I’ll state here (not having made changes exactly like this myself, mind) is that after a while the changes become the new norm. I gave up on soda 6 months or so ago, at around the same time I decided that 80 pounds of me needed to go away (27 left, so that’s a plus) to make it easier to deal with what was coming with this disease. Couple of months after that, I stopped taking the small spoon of sugar I had in my coffee.
Tried a soda a few days ago. Foulest tasting thing I’d had in a while. Wasn’t a fluke either, randomly tried a sip of another a few days later - same deal. Now I don’t want soda, or anything particularly sweet. So, it can get easier to get “off” of certain foods and the like.