I last saw him in February and since April I've followed a restrictive diet and lifestyle regime (AIP) which he didn't know I was doing till now.
He said he was 'delighted' with my progress, that my CRP and test results are 'lovely' and I'm the only patient he's ever seen following 'such an excellent programme' for PMR, controlling inflammation and improving the microbiome.
He was SO encouraging and affirming I came out of there floating on cloud 9!
I hear such a different story from others here which saddens and infuriates me. I know I'm extremely fortunate to have such a caring, supportive and knowledgeable medical team.
If only this were the case for all of us!
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This is so wonderful to hear. It gives me hope that dr/patient relationships can be open, supportive and a true collaboration.
And good on you for finding your way through and following a plan that works for you. I’ve learned that diet is a big part of healing (now if I could just stop eating all those salty dill pickles).
Ah yes the pickles. I’m not sure about them and I guess it depends on which ones you have, but I do know that sauerkraut and other fermented veggies are probiotic and seriously good for our gut bacteria. I’ve even started making my own! Delicious 😋
Yes I enjoy the sauerkraut too, but unfortunately the fills have loads of salt (which is what I miss the most since lowering sugar, salt and carbs). Causes water retention, and I have halved my blood pressure meds and don’t want to increase.
Mmmmmm....homemade pickles reminds me of the farm.
I massage in about 1 tsp Himalayan salt per cabbage or other veg equivalent. This draws the juice out and makes the brine that covers the veg while it’s fermenting. Then it develops that sweet/sour flavour. It’s not a lot of salt but it is essential to the process.
We use it as a condiment on the side so a small amount with most savoury meals.
I’m careful with salt too and rarely add it to food but we do need some sodium so restricting it can also be harmful...and obviously drink plenty of water/fluids along with gentle exercise.
I love how certain foods can remind us of places, like homemade pickles and the farm 😊
Well done you! Yes it’s wonderful when one is lucky enough to have a really good rheumatologist and team. Unfortunately very rare...
So many don’t even want to hear about certain diet regime that might be helpful in management of inflammation....
Would you say you are pain free and able to do many more things as well as feeling less tired?
Hope you don’t mind my asking.
Am now in a care home again recovering from my 2nd total knee replacement. This time it has been more difficult as I did get infection and had to go on antibiotics thereby not been able to restart my RA biologic injections nor methotrexate yet.... RA has been flaring up badly.... couldn’t even raise my elbows to feed myself for a few days. So GP put me on short course of steroids until I can restart injections next week. Some progress in pain management and could feed myself again today.
When I return home once I feel I can cope alone will need to look seriously at a diet to reduce inflammation but not keen to have an unnecessary “fad” restrictive and punishing diet.
Keep up with your wonderful progress and keep us posted.
I'm so sorry to hear about your knee problems and hope it improves quickly. I'm with you on 'fad' diets although the way I've chosen is very restrictive for a time. I don't find it punishing though and the benefits are worth the effort.
I think it would definitely be worth you looking at what you might do to help reduce inflammation as well as restore the good bacteria that the antibiotics will almost certainly have compromised.
I've added a comment below outlining my approach and I wouldn't say I'm completely pain free but SO much better and yes, I'm able to do many more things and I definitely feel less tired. That awful fatigue has gone!
Thank you so much for your encouraging reply. Once I am better and in control of my diet back home I will try and find a plan to reduce my inflammation levels. Worth a try.
So pleased you have recovered some independence, feeling less pain, being less tired and being able to do more. Your determination is paying off.
Please keep us informed of your well deserved progress.
Since you followed this restrictive diet and lifestyle regime and it wasn’t even your Rhummy idea, would you care to share both with us as you’ve been so successful?
I am REALLY interested in hearing about your diet too since I am convinced it is the key to saying "goodbye" to PMR. In Kate Gilbert's book "PMR & GCA: A Survival Guide" (page 130) she refers to someone who went on a restrictive diet and got rid of her PMR. I need more info so I can "gird my loins" to start this. Anyone want to join me......?
What does "PM" mean sorry? The book is good and you will find the diet outlined on P. 130 as I said. It is super restrictive and I don't think I could follow it unless I was desperate which I am not. Providing I stick to the correct dose of Pred (currently 9 going down to 8 and a half using the DSNS method) I am virtually symptom free. I know I am fortunate. I do follow a very healthy diet, low carb, home grown veg. Tumeric/ginger tea every day. Also I swim and have a sauna twice a week which I was told by a naturopath would help. I also have a very positive attitude, smile a lot and meditate every morning using Insight Timer. Happy to help if I can......
This anti-inflammatory approach isn't only about diet though and I'd emphasise that ‘Sleep is King!’ along with exercise, stress management, self-care and socialising...and diet. It’s about balancing all of these areas of lifestyle.
When it comes to nutrition it's important to recognise is that we’re all different. So much depends on genetics, hormones, medical history and many other factors. This is why I chose to follow the programme I'm on, because it allows you to discover for yourself as an individual what does/doesn't work for you as well as being aimed specifically at those of us with autoimmune inflammatory disease like PMR, RA etc (there's a long list!).
I’ve already posted about my progress in 'Wish Me Luck!' and 'Wish Me Luck! Update #1' through to #4 which you may have seen.
For the last 4-5 months I’ve been on full elimination AIP (Auto Immune Protocol). This is a nutrient-rich approach that adds foods that support the microbiome and repopulate the gut with good bacteria and removes foods that irritate the gut, cause imbalance and activate the immune system.
It aims to reduce inflammation, regulate hormones and addresses micronutrient deficiencies.
I was both curious and desperate enough to try it and changed my diet gradually over five weeks until I’d removed and added everything on the Avoid/Add lists:
Week 1: avoid Grains + Alcohol; add Healthy Fats
Week 2: avoid Nightshades + Legumes; add Bone Broth
I’ve stuck to this and I eat as wide a range as possible of vegetables, herbs, meats, poultry, fish + oily fish, healthy fats, fermented foods and drinks, liver and nutrient-dense seafoods, bone broth, turmeric + ginger. I drink plenty of filtered water and the occasional herb tea.
This week I’ve successfully reintroduced egg yolks (not the whites) with no negative reaction so they’re back on the menu. Yay! Next on the list to test is ghee…
RESULTS:
First of all I LOVE this lifestyle and have found the most delicious ways to make the diet work. It really is scrummy!
I have much more energy and less pain and fatigue.
My sleep has improved in length and quality.
I’ve lost weight, about 1lb p/wk, and my BMI has gone down from obese to overweight.
My blood glucose has gone down from pre-diabetic to normal.
I feel stronger and have been exercising, walking gently and doing some strengthening exercises designed for people with chronic pain and autoimmune disease. I couldn’t do these things before!
Since I started I’ve reduced my Pred dose via DSNS from 9.5 to 7.5mg and haven’t felt any fatigue or other ill effects at all so far. I’m approaching the level that will challenge my adrenals so I’m hoping this will go smoothly. My rheumy is confident that everything I’m doing should support this. Fingers Xd!
I'm still working on it and I manage some areas better than others but it's a process and to me it really is worth the effort. I'm so grateful that I found it
Unfortunately dairy and alcohol are both a problem for a lot of people with autoimmune disease. My rheumy confirmed that it is a good idea to cut them out for at least a month and see how you feel. I’ve definitely felt so much better without them.
Reintroduction is a very gradual process and I’ll be waiting till I’m back on a number of other foods before I attempt alcohol.
If I find I can tolerate it ok then I could have a small glass of grain-free alcohol, maybe twice a week. Fortunately this includes champagne so I could have a glass on a special occasion!
I won’t be drinking more than this until PMR is in remission.
The thing is I’ve got used to not having alcohol or dairy now and I don’t miss them...and I really thought I would!
Dee it looks amazingly effective for you. Bravo on your wonderful success. My problem is going to be getting food and preparing it. I’m too ill. What can I do are there any prepared foods in deli or other specialty shops? Xxxxx
Thank you for that.......have to admire how disciplined you are....may I ask what variations you have for breakfast....my favourite meal....wake up so hungry!I
Breakfast is the meal I’ve had to make the most adjustment to because so many of the things I used to have are off limits - toast, marmalade, pastries, cereals, porridge, eggs, yogurt, milk, coffee etc
At every meal, including breakfast, I AIM (key word!) for half my plate to be veggies, plus some protein, some healthy fat, a very little fruit and some probiotics.
My new motto is “Cook once to eat twice or even thrice!” which usually means I’ve got leftovers from lunch/dinner the day before so I can rustle up a quick breakfast soup or hash with leftover roast or steamed veg and maybe bacon or other protein with some avocado and fermented veg on the side. I’ll drink water kefir or komboucha with that and I’ve developed a taste for green tea so some days I’ll have that for a healthy caffeine hit!
I tried dandelion and chicory 'coffee' but they're nothing like the real thing so I'd rather go without for now. I do look forward to reintroducing coffee at some point but it's just not worth the risk at the moment.
Occasionally, if I’m in a hurry or don’t feel like cooking I’ll make a smoothie with a banana, some berries and green leaves like spinach (I keep all of these in the freezer just in case) with a tbsp of collagen and a mix of coconut milk and coconut water. It’s delicious and convenient but it's better to eat veggies rather than drink them so I don’t make a habit of these.
Sunday breakfast is a weekly treat. We make plantain waffles (with green plantains) and top them with bacon, blueberries, raspberries, CoYo and a drizzle of maple syrup. Absolutely scrummy! 😋
It said on the BBC “After following the group for an average of 25 years, researchers found that those who got 50-55% of their energy from carbohydrates (the moderate carb group and in line with UK dietary guidelines) had a slightly lower risk of death compared with the low and high-carb groups.”
I do agree. I also get frustrated with sucrose and fructose when talking about sugar. I think the article is in the Lancet. I suppose they have spent twenty five years on it, not just a quick and dirty. I think they are looking at animal proteins rather than veg.
This was a study of Americans eating a high animal protein diet, as well as examining their carb intake. It seems to be the recommendation that the animal protein be reduced while getting more protein and fats from plants. So I don't think it's as easy (although the item suggests otherwise) as eating pasta for supper.
“Low-carb diets that replace carbohydrates with protein or fat are gaining widespread popularity as a health and weight loss strategy.
“However, our data suggests that animal-based low carbohydrate diets, which are prevalent in North America and Europe, might be associated with shorter overall life span and should be discouraged.
“Instead, if one chooses to follow a low carbohydrate diet, then exchanging carbohydrates for more plant-based fats and proteins might actually promote healthy ageing in the long term.”
I think things are changing again, like we did not eat eggs for years, pastas and rice are back in. Saturated fats are now coming back into fashion as well. We will all be eating sugar again for health at this rate!
There seem to be some broad generalities but there isn’t a ‘one size fits all’ with diet and nutrition. We’re all so different. “One man’s meat is another man’s poison” so it seems to me we can only “Suck it and see” and notice if we feel worse or better!
I think they’re referring to unbalanced low carb weight loss diets like Atkins which include a high level of animal protein and fats and minimal amounts of vegetables.
Yes I agree - and probably there isn't a close alliance of their findings with patient health in their analysis. Often if you use a diet of this sort it may be because of an illness - which could well have a life shortening effect in itself, diabetes for example.
It is an observational study - and if you read this
which seems to me to be a particularly good report on the study in the media (in the absence of the actual publication) you will see they did 2 questionnaires 6 years apart. That is assuming then that how they ate at those two points was continued over 25 years - pretty unlikely for a lot of us. I have eaten differently at different points of my life. There was also not a lot of detail on the diets - and they are assuming I think that low carb equals high fat, which isn't what we talk about here and isn't necessarily the case, and there is also not enough consideration of how low carb is achieved - I eat almost as much veg as my vegan daughter but it is low carb salad and veg that makes up probably 40% of what I eat, I rarely eat more than 100g of meat a day, a bit more fish maybe.
One of the authors is sneering at "GPs promoting bizarre diets" - she is almost certainly meaning the Newcastle/Glasgow work which shows Type 2 can be reversed by using a short term VERY low calorie diet - but no-one is saying you stick to 800 calories for life.
What is utterly incontrovertible is that obesity and Type 2 diabetes have shot up over the last 40 years - especially in young people. And them cutting their carb intake would definitely increase THEIR potential lifespan. There is a major swing towards plant-based food, vegan, veggie as well as people cutting their meat intake without cutting it altogether - and I bet if this study were repeated in 15 years time they would have to draw some different conclusions.
My feeling is that a balanced diet is best. Do you remember the F Plan diet and people were living totally off fibre with terrible results? The trouble is people always seem to go too far when a new idea comes up and they overdo it.
You really should check whether you have a proper dose of pred and what is causing your pain. No one should have to suffer like you seem to in this day and age.
Piglette I must do my proper update post as I have to fill you all in. I will try after my bath. I think the agony I am in is from my thigh muscles shrinking. How attractive that sounds,,,,
Yes, it is antii-inflammatory and specifically for autoimmune diseases. For more details please see my comment above starting 'A few of you have asked...'
Everything I have read on this topic backs the diet you are following for auto immune conditions like PMR. The fermented foods and recolonising the microbiome seem key as well
I have also read that a teaspoon of bicarbonate of soda in water once a day can do wonders. In Kate Gilberts book on p.130 Dale advocates- no caffeine,gluten,sugar, dairy, alcohol and eating only plant based foods. Personally I would find this very hard but the more desperate your PMR symptoms are making you feel, the more motivated you would be! My approach at the moment is to try and lose the steroid weight I have gained by following a low carb diet and continue to taper using slow method. I exercise and grow my own vegetables and drink a tea made with lemons, ginger,turmeric, honey and ACV. We eat only freshly prepared foods and nothing processed.I have had PMR for 15 months and am down to 9mg pred per day. When I read how much others suffer I feel very blessed as , if it's possible to only have PMR mildly then I have?
My rheumy would absolutely agree with you that the microbiome and promoting as wide a range as possible of healthy gut bacteria is key.
I haven’t heard about the bicarb of soda but I do drink a teaspoon of ACV in water before breakfast.
I think it can be tricky to get the density of nutrients in a purely plant-based diet so it would probably take longer to see results.
Low (and slow) carb makes sense for weight loss and it sounds like you’re doing really good things that are right for you. We can’t necessarily do it all at once and it’s important not to stress about it too.
The ‘mildness’ of your PMR is probably due to everything that you’re doing to be as healthy as you can whilst also having an inflammatory autoimmune disease!
Well, in the interests of supplying what I hope will be a bit of balance. I changed my diet when it appeared pred was making my blood sugar soar. This involved deleting breakfast cereal (always had been whole grain and not sweetened), sandwiches at lunch, and reducing the size of the evening meal's "white" carb, be it rice, pasta or potato, as well as eliminating a bedtime snack of another bowl of cereal. I did not eliminate any vegetables, with the exception of reducing white potatoes. We eat very few prepared foods, so that wasn't an issue. I started to eat more protein, like eggs for breakfast instead of the cereal, and some pumpkin seeds. I found more fermented foods to eat and we have something fermented every day and eat lots of salads, often based on kale. I drink a cup of ginger tea most evenings.
And that's about it.
Pred made me feel well. I tapered from 15 to 3 mg in one year, 1.5 in two years. I honestly don't think my diet has had any effect on PMR, but it definitely got my blood sugar back to normal and, unfortunately, has kept my weight down to it's pre-pred too low level, in fact I've lost more.
Heron how marvellous to read this. I forgot about the good outcome stories and this has helped a lot. If only I could shop and cook I would be doing it. I am eating nuts and frozen veg and it’s not balanced.
Dee thank you. Thank you for hope and inspiration. You are to be heartily congratulated. You did this. I am thrilled for you. Bravo. I too am trying to help myself. I told my Rheumy I am not going to come here for help and not help myself. He says many of his patients get overwhelmed and just give up. I don’t blame them this is horrible. But I’m like you I have a wonderful doc and I cry for some of the forum members who have terrible experiences and can barely get an appt. please can we stay in touch? I would love to know you better xxx Linda xxxxx
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