Diet and GCA

[Toolie2]

I have recently found this wonderful forum, it's so full of information I wish I had seen it before. I thought I would post this in case it is interesting to anyone.

I was diagnosed with GCA just a year ago this weekend. I was nearly 77 when I suddenly became exhausted and overwhelmed with fatigue. In no time I was weak, withered and immensely weary. After three months this malaise seemed to be getting better, when last July the vision in my left eye became patchy. The eye hospital suspected GCA and prescribed prednisolone, 60mg a day. I was referred to a rheumatologist and the diagnosis was confirmed by a biopsy. I'm so grateful for the “Urgent” response from two hospitals that saved my right eye, and preserved a small sliver of vision in my left eye. I've made good progress, gained in strength, and reduced the prednisolone to 5mg a day, where my rheumatologist advised I should keep it for a while.

My blood pressure has been worryingly high though, and I've avoided medication. So since October I have experimented with diet, to try to lower my blood pressure and combat inflammation, beginning with eating only foods said to be anti-inflammatory. That was nice, a lot of trouble, and did nothing for my blood pressure.

I read that a vegan diet was the only diet that there was evidence for lowering blood pressure, even after two weeks. I tried eating entirely plant based diet for 9 weeks and my blood pressure became marginally higher.

Six weeks ago I read, with some amusement, about the carnivore diet. After reading all the research I could find, and rethinking my ideal of a bountiful vegetable garden, I started eating a meat based, high in fat and very low carbohydrates diet. I eat meat, fish, eggs, cream, crème fraiche, cheese and a small amount of fruit. I drink tea and coffee with milk and a glass of red wine with dinner,and absolutely no sugar in anything.

I tested my blood pressure after three weeks and found I was almost within the NHS 'Healthy' range at 123/79. Two days later I entered my result into the NHS website and was rewarded with 'Healthy blood pressure! '

I've noticed that my fingers, which had slightly thickened, have returned to normal; one of my knees had swollen during my malaise, giving me odd legs, now looks more like it should. I can wear clothes I haven't quite fitted into for a while. I've got more energy, I can be bothered to do more and don't get tired. I don't get hungry, I could do without breakfast, and my main meal, which is quite modest, satisfies me for the day.. Yesterday and today I didn't take the lift up to the third floor but took the stairs quite comfortably. I had a tendency to topple sideways when walking on uneven ground or when glancing from side to side as in crossing roads. I found this embarrassing as 1think I looked tipsy weaving about to keep my balance. It may have been be due to my changed vision but now it seems to have gone. My skin has stopped falling off like dandruff. Altogether, I feel stronger and more normal than I have done since the onset of this malaise 15 months ago. I don;t know if my inflammation has reduced, but I think the reduced swelling indicates that it has.

I'm not recommending this diet, which is ridiculous and defies all received wisdom. And its probably not a good idea to switch diets so rapidly. I'm just relating my experience in case anyone finds it interesting. This is the fifth week and it has amazed me how beneficial it has been so far and how quickly I have seen tangible results.

[PMRpro Ambassador]

Apart from the fruit, it is similar to what I generally ate until Covid when my husband's illness in addition to Covid meant I rather lost interest in what I got for myself. I don't usually eat that much fruit but I do eat loads of lower carb veggies. I definitely feel better eating like that but can't say it is as dramatic as you describe.

It is an extreme form of the keto diet - in itself the extreme of the low carb we push for people on pred. I'm not at all surprised you feel better nor that you aren't hungry on it - you aren't creating the rollercoaster of blood sugar levels that is such a disaster when on pred which just adds to it.

Long may it last!

[SheffieldJane]

Exemplary effort I must say, well done!

[Miserere]

I have been toying with the idea of the carnivore diet for a long time but, as you say, defies all received wisdom. However, I have also done a lot of research and it seems to be recommended nowadays by quite a number of professionals with surprisingly positive results. It is just one step on from Banting (and keto), which I remember was recommended to an earleir generation before the F Plan high fibre and low fat diets were pushed in the 70s.

As I seem to be struggling to reduce Pred at the moment and as my OA in my knee seems to be worse and I've now been put on a list for a replacement, I think I'm at the stage where I've nothing to lose so may as well give it a go. I already follow a low carb diet so it will be the next step. If it doesn't suit then I can always stop. Tell me, do you eat any vegetables at all? It just sounds so counter-intuitive, doesn't it?

So, I will think about working my way into it over the next week and see what happens. I'm so glad you are feeling so much better on it.

[Toolie2 in reply to Miserere]

I first met it on this site: doctortro.com/community/. They mostly do Keto, but some people incline towards carnivore. Actually, I find the forum fascinating for the little glimpses of American lives and kitchens, but the participants are achieving impressive results in weight loss, reducing diabetes and blood pressure medication and improving their health dramatically.

I thought I would try it for a month to see how it goes, and now I don't want to stop. Last Saturday I had some broccoli and mange tout, to mark the 4 weeks, but I don't really miss vegetables. Maybe I saw too much cabbage in my vegan stint!

Hope if you do try it you will let me know how it goes, and I do hope your knee improves quickly.

[Miserere in reply to Toolie2]

I began with Michael Mosley's Fast Diets and then came across: facebook.com/groups/1788638.... He is a Canadian who developed PMR and RA and managed to get everything under control by using keto and then carnivore so now not on Pred nor Methotrexate and feeling fit and healthy. Useful site. He lists quite a few medical professionals that he trusts - Dr Ken Berry is one and that is a useful site for keto and carnivore guidance and answers.

I've no idea whether it will work for me but I'm at the stage where I've nothing to lose. If it helps and I can delay/avoid surgery, especially while on steroids, so much the better but one step at a time!

Thanks for posting your experience - just the nudge I needed.

[PMRpro Ambassador in reply to Miserere]

You do have to remember that PMR and some forms of inflammatory arthritis go into remission spontaneously so an N=1 report isn't that reliable.

[Mayadill]

I find this really interesting. You don’t mention the p-word, but you eat lotsa lovely protein. My body doesn’t do more than a little fat, but I get through a lot of protein in any form, plant or animal, masses of (skimmed) milk, a tray of prawns as a snack or a couple of eggs, Huel meal replacement, meat, fish, lentils, butter beans. I don’t have a strict anti-carbs thing, I just don’t on the whole eat them, and I think this is because they’re fillers and I’m full already. Sometimes if there’s gravy or sauce I cook a couple of potatoes and find I’m leaving most of them. I do do brown rice with veggie concoctions. I do eat fruit, graze on fruit, munch a pear while wondering what to do next. Lifelong coffee-drinker. So similar but not the same.

That said, I have read that too much protein can be bad for both liver and kidneys. I don’t think I eat enough overall to be being silly, because I don’t do very much so don’t get ravenous, maybe 1500 cals a day, but I guess if someone was very active and eating masses it could be a problem.

[Toolie2 in reply to Mayadill]

You’re right, I eat lots of protein but try to make fat the larger proportion of my meals. Difficult sometimes because butchers remove all the fat these days! Your diet sounds well balanced which I’ve always thought is good. Suddenly I’ve encountered different ideas which I’m still thinking through. Eg, I’ve always been interested in herbal medicine , local plant lore, and thought there was a weed for everything. Used to eat comfrey fritters, drink comfrey tea. Now I find that comfrey has been linked to liver cancer. The idea that stressed or bruised vegetables make toxins and should be avoided - this is from the WHO not some whacky little group- is making me rethink my attitude to vegetables altogether!

[Mayadill in reply to Toolie2]

Hi again. i love my veg and fruit, organic from Riverford (riverford.co.uk) where as far as poss it's only come from the fields over the road from them and then to my door. Not what you'd call cheap but as I said I don't eat a lot, their minimum order is £15, and I prefer what I do eat to be delicious! They sell meat too straight from the farm. I drink a lot of turmeric, ginger and lemon tea but never really got into herbs.

[Toolie2 in reply to Mayadill]

Hi, after your protein warning I looked into anything I could find about liver and kidneys. I haven't seen anything about liver but I dd find one paper on Pubmed:' Is Losing Weight Worth Losing Your Kidney: Keto Diet Resulting in Renal Failure'. The title over dramatises a case study of a single patient, on Keto diet for2 months and had been vomiting for 2 days. She was diagnosed with Renal Injury (not failure) and was ok after rehydration. So I'm not going to worry about it. Thank you, though, for pointing out the possibility, I appreciate it, and want to be aware of any dangers that may be lurking.

[Mayadill in reply to Toolie2]

Hi again, i read it somewhere reputable but I can't find it, only a number of protein enthusiasts.

It's basically about ammonia being a toxic waste product of protein digestion that the liver normally converts into harmless urea.

And if there's an overload of protein the liver starts to have problems with the conversion process.

Defo if it any way damaged

my.clevelandclinic.org/heal...

I may be putting egg before chicken here, but I'd think anyone with abnormal liver function tests, for instance due to Pred, might reasonably watch the protein level.

[PMRpro Ambassador in reply to Mayadill]

Pred can result in raised liver enzymes but without any pathology. PMR can raise them too.

[Mayadill in reply to PMRpro]

Got it.

nonetheless, I love my liver dearly and see that Pred can make it unhappy even if it's too reticent to shout about it. Pred I'm stuck with. I see no reason to do anything else that might conceivably upset it!

Corticosteroid therapy can cause hepatic steatosis and hepatic enlargement, but this is often not clinically apparent, particularly in adults. This effect can occur quite rapidly and is rapidly reversed with discontinuation. High doses and long term use has been associated with the development or exacerbation of nonalcoholic steatohepatitis with elevations in serum aminotransferase levels and liver histology resembling alcoholic hepatitis with steatosis, chronic inflammation, centrolobular ballooning degeneration and Mallory bodies (Case 1). However, symptomatic or progressive liver injury from corticosteroid induced steatohepatitis is uncommon.

ncbi.nlm.nih.gov/books/NBK5...

[Toolie2 in reply to Mayadill]

Thank you Mayadill and thank you PMRpro. I'm afraid t will take me a while to get this into my brain. I'm meeting so much that is unfamiliar these days!

[Gimme]

So happy for you that you have found such great results. Our bodies are all different and so different things work best for us and I think it is great to share something like this, because for one person who reads it, it might make all the difference to them.

I instinctively feel that diet is the crux of all this and that the modern diet has a lot to answer for, aswell as all the stresses from modern life and I have an idea that viral infections play their part. With that in mind, after I had done my research at the beginning, I decided that I needed a motto that said "Eat well and do what makes you happy". I truly believe that that is key to me getting well again.

My diet is along similar lines, with some differences. As soon as I went on pred, I went straight back on the prediabetes diet to reduce chances of getting diabetes and then I read about the anti-inflammatory diet, so I made some modifications. I haven't gone full keto, but I think it is important not to go overboard with carb intake.

I have a high protein diet and I eat loads of veg, mainly because I love them and they help fill me up, plus they are supposed to slow down absorption for sugar from the gut. I am possibly celiac and certainly wheat intolerant, so I don't eat grains. I avoid anything with added sugar and I dislike pasta and rice, although I very occasionally will have quinoa, most of my carbs come from my vegetables, such as root veg, beans and peas and the occasional potato. I restrict alcohol to special occasions. I avoid seed oils, marge and fried foods. 95% of my weekly shop is single ingredient items and I try to avoid anything with a long ingredient list that is loaded with additives. I make sure that I add in some foods that are known to be anti inflammatory, like oily fish, walnuts etc. For me, sugar as free sucrose and high carb fried snacks like crisps and maize chips seem to be poison. I am stiff all over the next day, my face and hands feels puffy and I feel exhausted.

If all that sounds too saintly, I lapse now and again and I suffer for it. It's too hard to be perfect, all the time, but I do my best. That's all any of us can do. If I really crave something, then I have it, as I think that psychological benefits will outweigh the potential damage, and probably helps to keep me on the straight and narrow for the rest of the time.

[Toolie2 in reply to Gimme]

Sorry you've had such a rough time. I'm sure you're right about all three factors, diet, stress and viral infections. I seem to have heard of so many people who have had flu which lingers on and end up with a mystery illness that tests can't identify, as Covid has done. I saw a small study in Spain I think, had found that a high percentage of patients with GCA had experienced a life changing event up to 2 years before the onset of the disease.

It's interesting that you are so quickly impacted by different foods,but I like your motto!

[Gimme in reply to Toolie2]

oh yes, the reaction to the sugar and the fried stuff is very quick. I hadn't connected it until I read that they were supposed to be inflammatory. I'm convinced that diet plays a big part. Though, I would love to find out if atopy makes you more susceptible.

I have had PMR like symptoms for some years and I kind of hobbled along not knowing what was wrong, until I needed antibiotics 5 times in 2019 for respiratory infections, once was for pneumonia and once for strep throat when I had to liquidise all my food for about 3 weeks because I couldn't swallow. All that was a clear indication that my immune system was up the chute, as I never got colds before then. Then I got covid in January 2020, I guess from someone at work as we had a factory in China. And that's when it all started to go really tits up, for me. My exhaustion was so great that I was sleeping up to 14 hours a day.

You've given me hope that if I can stick to the anti inflamm diet, that I can get similar results eventually.

[Blearyeyed]

Well done , it isn't an entirely batty diet and the reason it could be helping us that all of that meat could have helped treat a vitamin B 12 and Folate Deficiency if you haven't had these tested .These deficiencies can have a dramatic impact on heart function and circulation , breathing , Fatigue , pain , muscle weakness and numbness , the nerves and your thyroid . It can also cause a large amount of pain and the feeling of dead legs and arms on exercise.

I have B 12 Deficiency Anaemia and Folate deficiency and Ehlers Danlos Syndrome , three issues that require a lot more meat , fish and dairy based protein to keep under control , so although I can't go high fat for other health reasons , and I also need more fruit and veg and certain carbs , my Mediterranean diet is very similar to your diet and has helped me improve a lot. I have low blood pressure but my Tachycardia issue went through the roof just before my B 12 deficiency issue was diagnosed , even when taking my medication.

Since starting B 12 injections and Folates infusions , and increasing the usually rationed red meats in my diet my symptoms reversed.

I've got nothing against a vegan diet , and I was a vegetarian for about twelve years , but neither diets did me any good. For some people with some illnesses going meat free just isn't a choice, and we have to prioritize our personal needs over the principles we may like to follow.

Well done with your discoveries , I hope the improvements continue, take care , Bee

[Toolie2 in reply to Blearyeyed]

Thank you, you may be right, I don't think I have been tested for vitamin deficiencies. Interesting how you are controlling your health conditions so precisely with your diet. Impressive, Best wishes to you too.

[MarksPoint]

Hi Toolie, I think your sense of purpose and observations are fantastic and I applaud you for trying to alleviate symptoms especially your BP. I too am going all over the place recently with diet, I have been on a 75% veg diet anti-inflammatory for 18 months and so far I am doing pretty good so will stick with it for now. However, I just read a book called Cholesterol Clarity and it has got my mind absolutely spinning in all directions. Because my husband has genetically high cholesterol levels and my cholesterol jumped really high after being put on Actemra injections for my GCA, I was trying to find a way to decrease those high levels and low and behold what was the book talking about? ....the identical diet that you have been on for 5 weeks which has lowered your BP, very low carbs and as much animal and good fat - omeg3s as you like plus lean meats, milks butter cheese etc. I know everyone is so different and what works for one will most likely not work for another but I find your story so very interesting. Have you had your cholesterol levels checked since you went on the diet? The book is adamant that high cholesterol is not necessarily the bad thing it has been made out to be for the last 50 years. I am about to read it a second time and investigate all the writers claims but it is actually a compilation of research from approx 30 doctors/professors etc from around the world. Food for thought as they say.

[Toolie2 in reply to MarksPoint]

Hi, that’s really interesting, I’ll look out for the book. I’ve seen quite a lot of assumptions being questioned over the last few years. In the 70s, when I first heard about cholesterol I assumed it was a marketing angle for margarine. I looked at my antecedents and saw no early deaths from heart disease so didn’t pay any more attention to it. A bit of a risk I suppose, but I was young! So mine has only been checked once, when I was diagnosed with GCA this time last year, and it was within the normal range. I didn’t realise it could fluctuate.

I know what you mean about taking in new ideas to set your mind spinning! A few weeks ago I read a jokey comment “You don’t see cave paintings of vegetables!” And it set me off down all sorts of avenues!

Good look with your diet and thank you.

[Temoral in reply to MarksPoint]

Hi MarksPoint....my rheumy told me a last appt not to worry about cholesterol levels as they vary every day....attitudes change in medicine, obviously. We monitor our own bodies I think...

[agingfeminist]

Having been an omnivore heard an horrendous account on the BBC of how 'free range' chickens live and decided that I ate my last roast avian a few days ago. I have been similarly distressed by what we do to other meat producing animals. So here I am, today about to take my first B12 supplement, and become meat free...fish, dairy and eggs are still on the menu. Although only another N=1, I will offer my anecdotal evidence over the next weeks/months.

[Toolie2 in reply to agingfeminist]

Look forward to reading about your experience. Hope it goes well and I admire your reasonng.