Praise from (and for!) my rheumatologist - PMRGCAuk

PMRGCAuk
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Praise from (and for!) my rheumatologist

xdbx
xdbx

I saw my rheumy yesterday. He is wonderful!

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!

75 Replies
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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).

xdbx
xdbx in reply to PMRCanada

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 😋

HeronNS
HeronNS in reply to xdbx

Pickles are preserved by the use of vinegar. Fermented vegetables are preserved by the action of beneficial bacteria.

PMRCanada
PMRCanada in reply to xdbx

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.

xdbx
xdbx in reply to PMRCanada

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 😊

Longtimer
Longtimer in reply to xdbx

May I ask what are the main foods you eat, and what do you go "free from".......

So good to hear something that works for some o ne, and get applauded for it👍

xdbx
xdbx in reply to Longtimer

Yes, I've posted a comment below which lists the foods I eat and avoid...

Daisychain12
Daisychain12 in reply to xdbx

Oh that’s a recipe I would love. I can’t buy the rubbish in the shops cos of the additives xxxx

He sounds wonderful

xdbx
xdbx in reply to Louisepenygraig

A godsend!

Darling I wish you could have the same 😭

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.

Very best wishes to you.

JGBH
JGBH in reply to JGBH

Another question: are you gluten free?

Thanks

xdbx
xdbx in reply to JGBH

Yes!

xdbx
xdbx in reply to JGBH

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!

Wishing you well :)

JGBH
JGBH in reply to xdbx

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.

Very best wishes.

Daisychain12
Daisychain12 in reply to JGBH

Oh you have been through enough. Pls let us know how your progress goes. Good luck. Poor darling xxxxx

I am very glad to hear that your astounding self discipline continues to support you. 🍀

Jane it’s astonishing what Dee has managed. It’s giving me much needed hope xxxxxx

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?

xdbx
xdbx in reply to ConventCassie

Yes, I've added more info in a comment below...

Daisychain12
Daisychain12 in reply to xdbx

Thank you 🙏🏻

Yes please dee! Xxxx

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......?

xdbx
xdbx in reply to Louisa1840

I've posted more about it below...

Me. I do. Louisa if you see this can you pm me. I’ve ordered the book. Desperate to get out of this despair xxxxx

Hi Daisychain,

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......

Well done for your excellent results so far. 👍

xdbx
xdbx in reply to Cyclegirl54

Thank you :)

A few of you have asked about my diet.

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

Week 3: avoid Dairy + Coffee; add Probiotic drinks

Week 4: avoid Eggs + refined/processed Sugars + refined/processed Oils + Food Additives; add Fermented Foods

Week 5: avoid Nuts + Seeds + Fruit/Berry-based spices; add Offal

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 :)

ConventCassie
ConventCassie in reply to xdbx

I saw that in one of your old posts. I’m worried about the no dairy as I’m big on yogurt now. When do you get to “add back” the alcohol?

xdbx
xdbx in reply to ConventCassie

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!

Daisychain12
Daisychain12 in reply to xdbx

Dee was all this from the Kate book? Xxxxxx

Daisychain12
Daisychain12 in reply to xdbx

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

Thank you

xdbx
xdbx in reply to Longtimer

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! 😋

Longtimer
Longtimer in reply to xdbx

You are so good....I enjoy my breakfast more than any other meal...will think about your choices you have told me....Thank you for that...

piglette
piglette in reply to xdbx

Did you see the articles in the press today also on radio and TV?

From the BBC - Low-carb diets could shorten life, study suggests

PMRpro
PMRproAmbassador in reply to piglette

Again I think it is an association - nothing concrete I suspect. It also is keto - as opposed to low carb.

piglette
piglette in reply to PMRpro

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.”

HeronNS
HeronNS in reply to piglette

I do wish there would be a definition about what kind of carbs. There is a world of difference between a sugary doughnut and a sweet potato.

xdbx
xdbx in reply to HeronNS

Hear hear!

piglette
piglette in reply to HeronNS

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.

HeronNS
HeronNS in reply to piglette

ca.news.yahoo.com/calling-p...

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.”

piglette
piglette in reply to HeronNS

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!

Ha ha ha!

xdbx
xdbx in reply to piglette

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!

BonnyQuine
BonnyQuine in reply to HeronNS

Thanks - that's encouraging.

xdbx
xdbx in reply to piglette

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.

PMRpro
PMRproAmbassador in reply to xdbx

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

irishtimes.com/life-and-sty...

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.

piglette
piglette in reply to PMRpro

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.

PMRpro
PMRproAmbassador in reply to piglette

Exactly - someone in the media sees a study and with no background knowledge takes a single idea and turns it into a diet. Crackers!

piglette
piglette in reply to PMRpro

Not crackers, money making!! I think I will have to start one.

PMRpro
PMRproAmbassador in reply to piglette

There you are - that'll keep you from wearying...

piglette
piglette in reply to PMRpro

Perhaps the sugar diet! Or the chocolate diet even. The C diet.

PMRpro
PMRproAmbassador in reply to piglette

The C diet might work now - wait a bit longer for the S-version...

piglette
piglette in reply to PMRpro

Ha ha

I did f plan. Piglette it was insane and I really regret it. Also the no fat diet. Madness xxxxx

Daisychain12
Daisychain12 in reply to PMRpro

Yes. Yes I totally agree. Much of it is common sense xxxx

Daisychain12
Daisychain12 in reply to xdbx

Dee that study was proven not good science for several reasons. Xxx

Piglette that has now been shown to be an unreliable study. It was on the news here today. Xxx

Daisychain12
Daisychain12 in reply to xdbx

If I could find some mega simple things to start I’d do it immediately. I’m so ill though I can barely dress xxxx

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,,,,

Please tell us your restrictive diet. Is it an anti inflammatory diet for auto immune diseases? Your post is SO positive

xdbx
xdbx in reply to Stella3

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?

Good luck everyone.

Well done Louisa. You must be rightly very proud xxx

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!

Daisychain12
Daisychain12 in reply to xdbx

What is ACV Please and what is kafir water? And why? Xxx

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.

xdbx
xdbx in reply to HeronNS

It’s so good to hear this and your remarkable progress although I’m sorry your weight has fallen too low.

I dropped out the white carbs before I developed PMR and I had Type 2 diabetes at that time.

Eating the way you describe I lost a good amount of weight and reversed the diabetes to pre-diabetic range.

Now my blood sugar is down to normal again.

I gained weight on Pred but it’s coming off again now and I feel better than I have in years.

Daisychain12
Daisychain12 in reply to xdbx

So pleased for you I could cry!!

Daisychain12
Daisychain12 in reply to HeronNS

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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