Willing to help

@staydisciplined Hi was on a low carb / low inflammatory diet for 3 years prior to PMR. It was great for general health and getting my weight under control, but did nothing to prevent the sudden onslaught of PMR inflammation which arrived suddenly and with a massive impact .

Since then I have continued to improve the diet even more with some supplements and keeping food no carbs, fresh salads and fresh high fibre low carb vegetables, fresh fruit but berries only, limited dairy (need the calcium for the bones), and fresh meat - mainly chicken and fish. I take fresh turmeric and ginger regularly, Vit D, Vit K2 and some magnesium for muscle support. And I haven't drink alcohol for many years. Even prior to starting on a low carb diet prior to PMR I rarely ate processed foods and 95% of food consumed was home cooked.

I am convinced that diet is critical in limiting the side effects of pred as I haven't suffered from many at all since starting this journey 3 years. But I'm equally convinced that diet has little impact on the production of the cytokines which cause the PMR inflammation. Similarly, exercise is critical for maintaining muscle and vascular health, but needs to be managed carefully as the creation of hot spots or trigger points in the muscles and myofascia can escalate the PMR symptoms. One of the best things I did was spend several months with a trigger point workbook learning what was happening to the muscles in my body when they stiffened and triggered pain. The massage techniques I have learn from that have helped a lot.

@gmdb I don’t know if it will help you but the diet protocol I used I feel absolutely helped me. I’ll share it in the event you want to try.

First lowering carbs did not play a role in the diet. My goal was to eliminate foods that caused inflammation in the gut. The mitochondria play an important role and your digestive system needs to heal. More than 70% of your immune system is located in the gut. If this is damaged it causes malfunction which many think lead to auto immune disease.

It will take time to heal it. This doesn’t work in a week or 2.

Avoid things that are inflammatory regardless of your are allergic to them. Eliminate seed oils. They are in many things so you will start doing more of your own cooking to avoid. Cook in avocado oil or olive oil.

Eliminate gluten but don’t replace with gluten free foods that have binders and other bad things. In other words give up bread and don’t replace with gluten free bread.

No dairy. Replace milk with almond milk.

No nightshade vegetables. No peppers, tomatoes, eggplant.

Eliminate corn. Eliminate beans/ legumes.

Eliminate nuts with the exception of pistachios and almonds.

Buy organic chicken. The usual chicken is fed with corn and therefore has much higher omega 6s. Organic fed chicken has a better ratio of organic 3.

What I lived on to heal my gut and still eat relatively 85% of my current diet:

Breakfast: 3 or 4 eggs with yolk, 1 avocado, 1 cup of organic coffee with almond milk.

Lunch: 1/2- 1 pound of salmon. Only wild caught salmon. 1 cup of white rice. Serving of kimchi.

Dinner: Steak, chicken, or ground beef. White rice. Asparagus

Snack: pistachios or berries

I did lose weight during this, so at times I had to increase my consumption. It also was a bit expensive buying everything organic and eating so much fish and meat.

I swear it helped me heal. Hope it helps and good luck.

I was on 25mg prednisone after being diagnosed with PMR and it was magic. I was subsequently diagnosed with SMM so I had to taper off prednisone. I started kevzara when I was at 9mg on my prednisone taper. I had injection #7 yesterday and I'm totally off prednisone. I'm also on LDN which I used as a bridge and I continue to use as I wait for kevzara to work. I had concerns about being on prednisone long term, but I also realize that we know so much about the effects of prednisone because it's been around for so long. Kevzara and the other biologics have not been around long enough to fully understand the long term effects and so I have concerns about what they will figure out 10 years from now. PMR forces us to make the choice between the devil you know and the devil you don't.

@staydisciplined Thanks. Most of these I have been doing up to a point, and I did think the omly other step I could take was to go on the full anti-histamine diet, but not a lot left to eliminate. Prior to PMR I went through that FODMAP process, which eliminated any of the foods that had could cause gut problems. This, plus PMR and pred side effects, lead to the following diet:
- very low carbs, no gluten, primarily to eliminate impact on weight and reduce risk of I reduce diabetes risk from pred.
- no alcohol as part of he above and reduce liver risks
- minimal dairy - some natural yoghurt and milk in coffee - to control cholesterol risk and ensure calcium sources for bones
- Only nightshades in diet are tomatoes. I looked into this and felt the benefits of tomatoes including their own anti-inflammatory potential outweighed possible downsides
- no corn etc - based on reducing carbs and impact on weight and blood sugar. Vegetable primarily, broccoli, cauliflower, small amount of sweet potatoe, small amount of beetroot. Lots of leafy greens and avocado.
- nuts, mostly walnuts and almonds, although I am aware that walnuts cause somesensitivities relating to gums so I have been reducing those in the diet. At this stage I am not convinced that peanuts are nessearily problematic. I managed to track down some research on the negatives that seemed to originate in a study on obesity, with the findings largely being based on large amounts of peanut butter consumption. However, there may be other issues.
- Haven't used seed vegetables in years. Was using extra virgin olive oil and ghee and coconut oil prior to PMR. Have now removed ghee and coconut oil for better control over cholesterol risks from pred side effects.
- No eggs due to cholesterol risks.
- Fruit is berries only or Queen Garnet plums when in season - the latter being a special variety develod in Australia that has a higher anti-inflammatory content than blueberries or raspberries.
- Ground grass fed beef around 250 g per week; salmon and some barramundi (Australian fish); and chicken. Fresh, not frozen, and organic and/or free range depending on availability.
- psyllium husk and organic collagen protein for fibre, cholesterol management, and keeping tendons healthy which weaken from the pred.

All of this has certainly helped battle many of he pred side effects, and I think the immune system is pretty healthy overall. Only illness I have had is a short cold during the last five years. That's excluding methotrexate toxicity which made me sick for six months and finally landed me in hospital for 4 days, with a further 3-4 months for a full recovery from it.

I do wonder whether sudden onset of PMR (due to a flu vaccine in 2023, verified by specialist diagnostician at the time) is different to PMR that slowly creeps up and is often captured by the doctors before it gets to a really debilitating phase. With sudden onset you go from being perfectly healthy to waking up one morning with savage pain in all the muscles PMR attacked. Like someone flicked a switch overnight.

@staydisciplined
Hi. Help me understand.
Why no beans, legumes?
And, why so much rice? It’s highly processed and white is especially inflammatory.
And lastly, why only berries?
No apples, oranges, peaches, melons, cherries, grapes?
These have all been in my diet except for the rice.

Hi. I used to eat beans and legumes for their high protein and fiber content. However, after listening to Dr Mark Hyman, Gary Brecka, and even Joe Rogan I now know they are not good for leaky gut. They contains lectins and phytic acid which act as ant-nutrients. They bind to good things and remove them.

In terms of white rice, in my initial 3 months I cut out all grains including rice. I was losing too much weight so had to introduce something. Previously I only ate brown rice. After much research I learned that brown rice is worse for you. The outer husk contains phytic acid and arsenic. White rice is easily broken down allowing for the gut to rest. People with sensitive stomach do better with white rice. After all we are trying to cure leaky gut.

In terms of fruit, I mostly ate berries, but do now eat apples and oranges. Berries are the best for you, but I have expanded my list.

I hope this helps.

There's so much diversity of thought when it comes to nutrition that it's difficult to determine who of the so called experts are right. The answer is probably the same as it is for PMR itself. We are similar but different and each of us processes foods in our own way based on our metabolism, gut health, the interaction of the combination of foods we eat and the timing. Sometimes the meds we take have to be considered too. The experts can't agree on much, so I try to eat a variety of foods in moderation. I have eliminated some foods because I don't enjoy them, and I have eliminated some foods because of my reaction to them. I don't deny myself the foods that I really enjoy. I don't eat any foods containing sugar substitutes, natural or not. Most of them either affect my heart rate or just don't taste good. Moderation works for me.

@staydisciplined
I appreciate your detailed explanation of what you feel has helped you. We are all looking for the best choices for each of our individual needs. It can be daunting and confusing.
I searhed AI regarding nightshade veggies and this screenshot was the first answer I got.
Also, many of the nightshade veggies have strong anti-inflammatory properties. So, what works for some may have no influence for others. Most of us have experienced this with medications, exercise and foods.
All input is valued and appreciated!
God speed on each of our journeys in this maze.

@kayept very true. I’m not a doctor, just sharing what helped me as I hope it helps others.

When I relied solely on medication I wasn’t improving. When I became relentless with my diet and workout routine I found healing. I was “healed” in roughly 6 months.

There are many foods that are polarizing- nightshades are a good example. I eliminated any that were controversial. I also heavily relied on the opinions of people like Dr Mark Hyman, Gary Brecka, Dr Andrew Huberman, Joe Rogan. They were very helpful in helping me understand restoring healthy gut.

@staydisciplined
Thanks for explaining that.
Two more questions, if you’ll be so patient, that I meant to ask.
Why no corn?
And, do you think everyone with PMR has leaky gut?

If so, did leaky gut cause the PMR or “trigger” it, like waking a sleeping giant that was already there but asleep and would have stayed asleep had something not caused it to waken?
Oops, three question, are you in the U.S.?