Welcome to the site!


#1

I started this website last year after being diagnosed with psoriatic arthritis. I’ve been hoping to build a tracking tool that allows me to figure out what triggers flare-ups in order to reduce them and/or put the condition into remission. I’ve created this forum and blog so that a group of us can exchange tips.

I’m a programmer/entrepreneur living in California, USA.

I like to experiment with healthy eating, calorie restriction, and water fasting (which helps my condition a lot). I think that there is a lot of bad information out there about autoimmune conditions, and I’m interested in sifting through scientific studies to see if there are any clues that could help relieve a lot of suffering.

Please join the forum and create a post to introduce yourself in the Introduce Yourself section. I have a lot of ideas on how this site can be useful – as I’m posting this, the forum is only a few hours old, so we’ll see how it evolves as more people join. :slight_smile:


#2

Thanks for setting this up, Josh! A little about myself:

I’ve had psoriasis for 40 years. It’s mild and it’s mostly on my scalp, with a little on my elbows and in my left ear. I have had psoriatic arthritis for 20 years, and it affects my knees primarily.

It took me 10 years to get a diagnosis of psoriatic arthritis because my inflammation waxes and wanes, I never had symptoms by the time I would get to a doctor’s appointment. It wasn’t until digital cameras came along that I had something to show doctors. For about 10 years when I had no diagnosis I sought out the help of a nutritionist because I had read that food could be inflammatory.

I worked with the nutritionist to carefully track my food and symptoms. Over a few years I came up with a list of foods that cause inflammation for me: Gluten, corn, soy, dairy, nightshades, and bay shrimp. It’s a weird list but it has a huge effect when I can avoid those foods. I was also diagnosed with Small Intestine Bacterial Overgrowth (SIBO) in 2015. This is overgrowth of bacteria in the small intestine. It’s also a chronic/recurring issue. When it’s under control, my inflammation is much, much (much) better. So I avoid foods related to that as well. See the FODMAP diet if you’re interested: https://www.monashfodmap.com/

In the past few months, my system of managing inflammation through diet hasn’t been working. Something changed, I’m not sure why, and I’m having more frequent, intense flares. I have a rheumatologist, and always had a plan that used joint damage and quality of life as measures of whether to try pharmaceutical drugs. Though I’m thrilled to say I have no joint damage, I have been more limited since about July, and I’m in a lot more pain. So I’m on the cusp of starting low dose methotrexate. I’m nervous about it, but grateful to have the option. I will continue to eat in a way that supports my immune system, but hopefully with fewer repercussions when I accidentally eat something with ingredients that my system reacts to.

Josh, thanks again for setting this up. Slack was a barrier for me because I use it at work and I don’t want to feel like I’m at work when I go home. But it’s great to have a forum for support.


#3

Welcome to the site! :slight_smile:

Have you read book Keystone Approach? It about arthritis and mentions SIBO. I followed a couple of bits of advice from it with good results. I’m hoping to start a discussion about it in the other thread.

I’ve also seen fairly miraculous results from water fasting (which I’ve written about in my blog). It’s very difficult to do, but really helps me. I’m trying to fast for at least 3 days every month. I may try a longer fast soon too.

I’ve heard of the FODMAP diet. It’s mentioned in the Keystone Approach. I will read more about it.


#4

Thanks! I didn’t know about the Keystone book – I’ll get it. It looks really interesting.

I already have so many dietary restrictions and am so often hungry that the idea of fasting is emotionally difficult for me to overcome. But I’ll read your posts and try to keep an open mind. My plan is to continue the holistic work and hope the methotrexate, if I can tolerate it, gives me a break from things and maybe I won’t need it for long stretches of time. I have a friend who took it for a year and then was able to go without it.


#5

It can be difficult, but I’ve experienced great results. There have been times when I thought I was never going to be able to stand up straight again, but three days of water fasting later I can stand up again and move around without problems. Three days of water fasting produces better results than any medication I’ve been given.

The last fast I did was not as difficult as some of the earlier ones. I made sure that I drank a lot of extra water, which probably helped.

I got the idea of water fasting from Valter Longo’s research:

In the first evidence of a natural intervention triggering stem cell-based regeneration of an organ or system, a study in the June 5 issue of the Cell Press journal Cell Stem Cell shows that cycles of prolonged fasting not only protect against immune system damage – a major side effect of chemotherapy – but also induce immune system regeneration, shifting stem cells from a dormant state to a state of self-renewal.

One thing that I want to do with this website is discuss some of the new research about food, fasting, and the microbiome to see if there are some clues that might be useful in helping people stay off the medications.

I’ve fasted for periods of 3-5 days. I may try a longer fast soon, because I’m also supposed to start methotrexate soon, and I’m trying to avoid it.

A commenter named Cody left a comment on one of my blog posts:

Been reading several of your posts. I too have P and PsA. Wanted to share with you real quick what seems to work for me, I am almost symptoms free. Fasting is great and helps a lot. Dr. Furhman in his book fasting and eating for health, he is famous for fasting many patients with P and PsA for long periods, he says that he finds with people with P fast their liver enzymes often elevate and then slowly decline to normal as the fast goes on. He finds once they hit normal levels during a prolonged fast usually all P and PsA is gone and if the patient continues to eat a healthy diet the P and PsA usually do not return. 3-5 week fasts is usually what it takes, however he said fasts longer than 1 week are required to start to see significant results. If liver enzymes do not normalize during the fast usually the symptoms return even with healthy food. The keystone approach is great and helped me but also the book Plant Paradox by Dr. Gundry has really helped me a ton. His research is great and avoiding lectins has really helped me. Highly recommend it is great for all autoimmune diseases.

I’ve also read part of that Joel Fuhrman book and plan to start a discussion about it in another thread soon.

If that person would be willing to write about their experience with that, please invite them here. :slight_smile: I was told that methotrexate is something I would probably have to take for the rest of my life, but one year sounds more doable…


#6

I ordered the Keystone book, and the Plant Paradox is on my list now. Thanks for the referrals!

Definitely ask your rheumatologist about methotrexate holidays if you decide to try it. I understand that it’s not good to take it for prolonged periods of time. Mine told me that I would be on it for a year, if I’m able to tolerate it at all. Also take folic acid when you take it.

I didn’t mention that I also meditate, see an acupuncturist, and go to a naturopath. I’m convinced that a holistic approach to managing this is helpful. I definitely don’t see this as an either/or thing. I will continue to do all the things I do now to keep the adventures with pharmaceutical drugs to a minimum. It’s worth trying but I don’t expect it to fix the problem on its own. It’s just hitting the symptoms and doesn’t address the root of the problem.

I am curious to hear how fasting goes for you. Looking forward to reading about it. BTW, I didn’t realize the forum is visible to people who aren’t logged in so I changed my username and got rid of my picture, which had been added automatically.


#7

Fasting and Eating for Health by Joel Fuhrman is also an interesting book. He recommends a high-nutrient vegan diet. I did that for about eight months and then added some fish. One thing I like about it is that it recommends making one meal per day a big salad. I slacked off on that for a while, but just restarted the salads tonight. (Another PsA attack is coming on and I can’t start my next fast until Saturday.)

If there are enough people here with similar diets (eventually) I could add a section for recipes. Eating like this is pretty difficult.

Sorry about that. The forum software uses Gravatar, so if you’ve ever signed up for Gravatar it will pull in the avatar associated with the email address by default. I’ve just updated your username in my previous quotes above.


#8

Thank you for the username switch!! :slight_smile:

So vegan and vegetarian diets aren’t on my radar because of the SIBO and soy sensitivity, but I certainly know they work great for some people. I hope you get a community here who are working with that and can lend support to each other.

I’m really sorry you have a flare coming on. I hope it’s as short and mild as possible, and that you find relief from the emotional difficulties of living with it while it lasts.

With kindness,
Mary


#9

I think that things will work differently for different people, possibly related to things like genes and the microbiome. Here’s an example I recently saw about how methotrexate works differently depending on gut microbes:

Dr. Scher expressed his surprise with two findings, “First, that P. copri abundance in the gut correlates inversely with presence of shared epitope alleles. This may represent a gene–environment [microbiome] interaction that needs further investigation.”

He also was surprised by the implication that the microbiome may explain how certain immunosuppressants are metabolized.

He proposed that gut microbial composition may partially explain why some patients respond better to methotrexate than others.

The difference in response may be due to the ability of the gut microbiome to modulate drug bioavailability.

http://www.the-rheumatologist.org/article/microbiome-research-provides-clue-to-rheumatoid-arthritis/?singlepage=1

I’m cutting out soy as well and getting my protein from fish and some legumes. There is significant protein in foods like broccoli too (5g of protein per two cups). I’ll keep experimenting until I find something that works for me. I think I might have trouble with meat mainly due to being raised as a vegetarian in my earliest years.

Thanks – I think I’ll be okay as long as I don’t eat anything bad by the time I start the next fast. :slight_smile:
I’ll keep things low-calorie (salads) to try to suppress my immune system until then.