Keto, or just healthy eating?

[Pr0jection]

I'd be very interested to hear other people's opinions about whether or not to go the Keto way of eating as I've heard that some people swear by it. On the other hand I've heard of some people who have become quite poorly after being on it for a couple of weeks. For the record my ESR is currently at 6. I can't remember what my CRP is but my rheumatologist said it's also very low. When I was first diagnosed my ESR was 98. I started on 15mgof prednosolone in August and reduced to 7.5 by October and here I will stay for a while. I recently had a fasting blood test - glucose level, cholesterol, etc etc. With the exception of cholesterol which has always been a little high, everything was either normal or below normal. I consider that I eat very well and I need to as I lost a lot of weight before diagnosis. I have eliminated all processed food, sugary food with the exception of fruit, no additional salt, try to stick to low carbs but I do have a very small potato and a small piece of brown bread most days. As I've had gastritis and diverticulitis I can't eat acidic fruit or those with small seeds so I stick to bananas as they suit my digestion. Lots of vegetables and lean meat, and full fat dairy. I can't eat fish or eggs. My apologies for the long thread, but I'd welcome any comments. I feel very well, no pain, and can do everything I did before PMR but is this the honeymoon period and when I try to taper will the Keto way of eating help me to reduce without flares? I think I'm eating good wholesome food but the Keto diet seems to be the 'in thing' at the moment. If you've read to the end, thank you!!

[PMRpro Ambassador]

I suppose it depends on why you want to eat a keto diet. Is it in the belief it may improve the inflammation or is it to reduce the risk of weight gain and/or development of steroid induced diabetes?

I, and most others here, don't push keto eating for patients with PMR/GCA on pred. From the science aspect, it is almost impossible for many patients to achieve keto status when on pred and from the practical aspect, it isn't always necessary. By cutting carbs drastically but not totally many people achieve their aim - however, some of us have to cut carbs more than others.

In some patients pred triggers random spikes of glucose to be released from by the liver from the body stores of glycogen in the muscles. This means that achieving keto status may be very difficult though I know there are people who have done so. This also contributes to the Hba1c level and may be enough to increase it into danger territory. as well as triggering release of insulin - which is what sends the BS plummeting and creates the craving for carbs as well as leading to the weight gain and deposition of fat stores in various places. You can't control that but what you can do is reduce the contribution made by carbs in your diet. Some people need to cut more than others - Snazzy and I, for example, need to get to 20g carbs before we lose weight but maintaining is easier. You appear to have achieved a good balance from what you say.

But thinking keto will control the inflammation is probably pie in the sky. I know it is the "in" thing but you will face the problem that you will almost certainly lose weight if you cut your intake of carbs but it probably won't stop the underlying autoimmune disorder which creates the inflammation even if it might cut inflammation in others who don't have an autoimmune disorder. Look elsewhere and you will find people who swear by gluten-free - plenty of coeliacs with PMR/GCA around, a few on the forum. My PMR started at a point I was eating grain and gluten-free. Others say veggie, or vegan - we have members of both communities on the forum, for some, being lifelong veggies didn't protect them from PMR.

Each of us needs to experiment a bit - normal commercial wheat is not good for me so I avoid it as much as humanly possible although these days I can eat small amounts without reacting. Many of us find a weekend of so-called "treats" which all seem to contain sugar and simple carbs leaves us uncomfortable afterwards. If nothing else. in PMR/GCA everyone is different!

[Pr0jection in reply to PMRpro]

Many thanks for taking the time to reply. Totally agree that everyone is different, and hopefully I've got the balance right for me. x

[Koalajane]

Hi, I eat a LCHF diet and find it helps my type 2 diabetes and has helped me to lose weight and maintain it but I don’t feel it has helped my PMR

[Pr0jection in reply to Koalajane]

Thanks for your reply. Very helpful.

[SnazzyD]

I went super low carb in order to avoid risk of diabetes and weight gain when on Pred. It wasn’t to try and beat inflammation. Flares on reduction are due to not enough Pred at any one time to cope with your immune system that is identifying the wrong tissues as the enemy. Yes, certain food stuffs may not be helping, but diet isn’t going to fix it because if it did, there would be millions of happy people. I think any diet that is ‘in’ and being endorsed as the answer to every ailment under the sun, is not going to be the answer. I was gluten free before GCA hit and had a healthy diet, lots of exercise etc. I was however, leading a wholly unsustainable life that put intolerable strains physically and mentally for decades. Illness is a complicated thing involving mind, body and soul and it is far more comfortable to fix bits on the surface as Western society tends to promote. However, well done for adding an important piece to the jigsaw puzzle of getting better.

[Pr0jection in reply to SnazzyD]

Thanks SnazzyD. For me, I was retired and happy when I got PMR, but was probably overdoing things in order to keep active and fulfilled, and not relaxing sufficiently. Hopefully I've learnt my lesson. x

[PMRCanada]

I lost 30 pounds after getting PMR and taking pred by following a low carb/sugar/salt diet. 5 have be put back on since Covid. I also tried a keto diet a few months back, and did achieve ketosis, however my cholesterol was up from latest bloodwork, perhaps due in part to the extra fat in my diet, and tbh I found it challenging to get all the required fat consumed daily. For those reasons I went back to my former eating lifestyle.

I do know a number of folks who have had great “success” (weight loss) by following a keto diet, and they’ve managed to keep it off for more than a year by following that type of diet (for the most part). Maintaining weight loss is often the most difficult part.

[Neck680]

I stayed on keto for about a year and lost 20 pounds which I had put on when I got PMR and went on prednisone. I felt great on keto, although never expected it to help with inflammation. Agreeing with some of the other posts I was always wary of the high fat intake, not good for the high cholesterol person that I am. Going as low as possible with carbs and keeping all other foods pretty balanced I believe is still the best way, though I have re-gained some of those pounds. Good luck.

[Pr0jection in reply to Neck680]

Many thanks for the reply. I've always had high cholesterol, (but my 'good' cholesterol is also high) so I'm treading a fine line by eating high fats but I'm doing so because of the high sugar content in a lot of the low fat foods. I've read quite a few articles over the years about high cholesterol being better for you as you age (I'm 77) than low cholesterol, but I think the jury's still out with most GP's. I did manage to get my cholesterol down to normal about 10 years ago but I lost a lot of weight as a result, ended up with blurred vision, and was told I looked awful by my friends! Maybe I should have made new friends?!......Thanks again.

[HanaleiBa]

Keri works for some, but the researchers find you can’t stick with it for long (12+ months) and then many lose the gains. Everyone is different which can be tough to hear - but I know some who have gone into remission on vegan, others paleo or AIP protocol. I found balance is best, eliminating certain foods that can be triggering. But I started on an elimination diet and went from there. After years of being gluten free, dairy free, and lots of veg, I found I was able to eat gluten/yogurt sometimes and be ok. I’d healed my leaky gut to some extent. That said I am way off the wagon since moving to the UK and gotta clean it up LOL ps. For years my “flare reducer” has been 3 days of juicing. But, for others that doesn’t work.

[Pr0jection in reply to HanaleiBa]

Thanks for taking the time to reply. I'll take what you've said on board. All the best

[EnduranceEngine]

Sorry for the long post.

Keto can be a good way to go to lower inflammation, if done properly. Dairy is inflammatory, so a lot of Keto is pro-inflammatory. However, it's also great in that it takes out all the bad sugars, which are inflammatory. Clean keto would be the way to go, so mostly animal fats and good protein, which we all need as we age. And saturated fat is not going to raise cholesterol. The FDA has reversed it's thinking on that, as has the American Heart Association.

I have been Paleo for 5 years, which is higher in fat and lower in carbs than a standard recommended diet. However, it's very nutrient dense, and cuts a lot of the pro-inflammatory foods out.

When I got PMR, given that it is autoimmune (but not triggered by food like some autoimmune diseases I should note), I switched to the Paleo Auto Immune Protocol (AIP). This eliminates the most allergenic and pro-inflammatory foods. It cuts out things like wheat and rye, and nuts and seeds, as well as dairy and nightshades. It leaves you with meat and fish and lot's of veg, with some treats made with other non grain flours and a touch of honey instead of those nasty Keto sweeteners. Also, no alcohol as it's very inflammatory (not what anyone wants to hear at Christmas!) Here is a link to some information:

thepaleomom.com/aip-dos-and...

There is a ton of good info on this site.

So for me, I was given 20 mg of Pred to start. I tapered by 5 mg every 4 weeks. Then the last week, I went down to 1 mg, then to zero. I was on Pred for a total of 64 days. I've never had to go back up. I've now been at Zero for 105 days and feeling pretty damn fine. I can now lift the same weights I was before PMR, and am back up to running 8K and doing hill sprints. I have no issues, save some light pain in the shoulders when I lift heavy things over my head. Otherwise, I'm very much like I was. I'm still eating AIP Paleo, and will through Christmas and into the new year before reintroducing some foods. It's not a hard diet, and I find I eat most of my favorite foods, so not feeling hard done by. And you can do this diet in a keto version as well.

I know everyone is different, and results will vary, but for me, it may have been the thing that allowed me to get back to fit faster (though I'm still a long way from the fitness I enjoyed pre-PMR), and off Pred faster as well.

[Pr0jection in reply to EnduranceEngine]

Well done you! What a great success story. I was going to taper from 7.5mg a little while ago but something is telling me not to be too hasty, and my rheumatologist won't hear of it yet. I'm going to see him on Friday to get the results of my blood tests and I'll discuss it with him again. Many thanks for your reply. All the best x

[EnduranceEngine in reply to Pr0jection]

Thanks. And I'm happy with the route I took. I'm lucky in that my GP was very much against being on Pred too long. He wanted me to taper aggressively and see how it went. As it was going well, we kept it up. I know it's not for everyone, but hearing about others who have been on it for years, makes me feel very fortunate that this strategy worked. Good luck with your Rheumatologist! And Happy Holidays as well.