What about other herbal treatments?

I have to figure out the calciu piece. Not sure what I need that's over and above what I get in my vitamin. These are things that I have to learn. I do take the Vit. D.

If you are taking pred it tends to have an affect on your bone density and so it is recommended that a vit D and calcium supplement is taken. It is also recommended that a Dexascan should be taken to check your bone density, because of the pred side effect.

You need to get a source of Vitamin K2 (K2 not K1) as that is the vitamin which makes sure calcium goes into the bones where it belongs and isn't deposited in blood vessels and organs where it can do harm.  Lacking in Western diet so you'll probably need to supplement it.  There is getting to be more information online about it, but don't be surprised if your doctor knows nothing about it. Knowledgeable staff at a health food store can give you guidance.

The recommended amount for us to take is 1200mg calcium carbonate and 800IU vit D3 over and above our normal diet. The supplements most of us are given come as 600mg calcium carbonate and 400IU vit D3 in a tablet and we are told to take the tablets 1 twice a day - not at the same time as the pred. So we say pred for breakfast, calcium/vit D for lunch and dinner as it is better to take them with at least a small amount of fat to help transport into the cells. That is also why skimmed milk is not as good a source of calcium (whatever the marketing tells you) as there isn't any fat to help. Many people feel that calcium as calcium citrate is better as it is absorbed more easily but the usual prescribed ones are carbonate. It's been fine for me.

If you eat/drink a lot of calcium-containing food or have renal problems it is best to check with the doctor how much supplement to take - too much calcium can lead to kidney and gall stones in some people. And of course - dietary calcium is far better than a tablet but you will need a supplement for the vit D - less than 10% of what we need comes from diet as there are so few foods containing vit D. In the US milk, orange jouce and some other foods are fortified so if you drink a lot of either you will get more. 

The trouble is, I'd have to competely change my diet AGAIN! OH wouldn't eat it and it would mean SO much more cooking for me! BC (before cancer) he happily ate curry and such - since then it is something I could only offer as very very mild (bolognese mild) about once in 6 months and he doesn't eat rice. Do miss it though ...

yeah. That's why I haven't done it.  I need to see evidence that it's effective.  I'm new to all of this. I'm a PMR virgin. LOL So taking it a step at a time. Thanks.

"My view is that if you eat nothing but 'real food' you have to be doing better than eating crap."

I was chatting to my grandaughter last night - she's been veggie for about 6 months on ethical grounds and decided recently she might as well go the whole hog and go vegan. Some of you will remember she has really severe asthma, been in and out of hospital over the last few years, far too many times in resus making the doctors panic. As a baby she was allergic to milk - eczema cleared when she was put onto a non-dairy formula after weaning (she'd been fine with breast milk).

She is now walking home from school - well over a mile, where before she struggled to walk across the road. She has been able to reduce her pred dose down to 10mg (she'd been on way higher than that almost permanently for months and months) and has lost another 4kg in weight. 

But I quoted Flip's comment because when I asked her if she missed anything she said not really, there are substitutes for almost everything - though she does miss trying stinky cheeses (I've lost my mate there, everyone else is cheddar-orientated   ). And she said "I have even stopped craving junk crap" - and believe me, she downed a fair bit as a teenager! I had hoped she'd realise what a dreadful diet she was eating but she had to make the decision herself - and I can also say, take out the carb rubbish and within a couple of months you will no longer miss it. It's got to be really good to be worth it.

That said - I tried leaving out nightshades and stuff - all it did was reduce my choice of food, made no difference to my PMR. But I do think adopting a good diet can make a big difference - but you have to be honest about what you are eating anyway.

Yeah clean food. fruits, veggies, some protein, and give up the junk. It's not a bad price to pay for feeling better.  I also hate to give up the night shades. I really don't feel that the few tomatoes in my eggwhite omelet is going to do me in. I eat eggplant once or twice a year. I'm still going to do it. I don't eat potatoes, but that's where I drew my line. I'm going to eat my veggies. All of them, and my beans, and eggs. I have grains and I like my diet. it's all choice.

No - absolutely NOT eggwhite omelettes! Ancel Keyes and his incorrect conclusions did the egg producers and consumers a great disservice. Despite never having believed his cholesterol mantra I did get out of the habit of using eggs as much and now struggle to remember how useful they are. 

Why do you eat omelettes with no yolks included? Don't you like them or is it a calorie thing?

It's a calorie thing.  I eat them when we eat breakfast out a couple of times a week, but for breakfast at home I'll do a veggie omelet with eggwhites, onions, mushrooms, spinach and feta, and a small glass of tomato juice. It's just a breakfast that I like. Sometimes I'll have scrambled eggs for supper with a salad. I eat them both ways, but for cutting calories I get the same bang with less calories.

I'm going to sound like a zealot, and I'm really not, and neither am I telling you to suck eggs (pun inteded!) but I hate to say it but your desire to restrict calories might actually be doing you more harm than good in this case - egg whites tend to be particularly troublesome in autoimmune inflammation because they can permeate the gut lining and cause the immune system to react even more.

If you are interested in they whys you can try searching for "Egg Whites and Autoimmune Discease"  Loren Cordain. of course there's a lot more literature out there about it if you want to look further.

In terms of calories - a whole large egg is barely 70 calories so they aren't what you would describe high calorie additions to your diet and nearly 20 of those calories are in the white - so the yolk is just 50cals. But they DO have vit D in the yolk as well as a lot of other very useful nutrients. Cutting calories can be done far more effectively elsewhere!

I always worry about  nutrition as the answer to autoimmune diseases. How one interacts with food is so individual. I see Corbain has published a lot- but is he right? The gut is permeable because that is how our bodies get nutrients from food. Allergies to specific substances are individual.

i had a bowel obstruction and part of my small bowel died and bacteria leaked into my abdomen and I almost died. That is "leaky gut". And here I am with PMR  - but why those of Northern European ethnicity( thanks Estonia) have more PMR? Their diet is high in fish not egg whites.

Go figure.

For a long time milk and cream were thought to heal ulcers until the bacteria Hpylori were found; appropriate antibiotics cured it when the "ulcer diet" never did.

hi Karenjaninaz, interesting comments you've made about nutrition and PMR.  I wonder if one of the things we'll find is not just genetic predisposition but also our environment - sunshine for example, and maybe not only for Vitamin D but for other things sunlight gives us.  And living in a location where we get enough sun for less than half the year, well maybe that just isn't good for us, we are insufficiently evolved, and we haven't found a food source of what's missing (as I believe the Inuit did).

"i had a bowel obstruction and part of my small bowel died and bacteria leaked into my abdomen and I almost died. That is "leaky gut"."

Not as I understand it - that is peritonitis and a leak like you get from a bucket with a hole in it. Leaky gut is not leaks in that sense - it is due to cell membranes that are letting things through into cells that they they shouldn't.

There almost certainly isn't a single answer to autoimmunity disorders - and while some northern countries may eat a lot of fish, the UK certainly doesn't even if it is an island!  Genetics plays a role - and that's the Scandinavia gene pool. So probably does environment - and that is just outside us but also what is in our food in the form of contaminants.

As for a food source of vit D: Inuit ate a diet with at least 50% fat and much offal. When Searles ate that he was healthy, when he tried eating meat with less fat - on the grounds it must be healthier - he wasn't. It is perfectly possible that the changes in diet so that offal is relatively rarely eaten today and breeding of animals with far less fat in their meat has contributed to the vit D deficienies we see now.

By the way, last week I read a report of some work from an Innsbruck group who think they may have found a cause for colon cancer: the presence of specific bacteria together with the absence of a particular protein (a genetic factor probably) leads to the development of tumours. Add the protein - no tumours. Much the same as H pylori - and presence of gastric ulcers is often a precursor to gastric cancer.

Hi Eileen, my surgeons said I had an an abcess from a "leak" in the small bowel serosa which had lost its integrity from strangulation. That's why I called it "leaky gut" but, I guess, not in the context of nutrition.

After recovering from that I had intractable bilateral hip bursitis which no therapy - save steroid injections -which helped. Then bursitis began in both shoulders, then the knees.

Here I am. That illness was in 2012 when I just turned 70.

Sounds as if that delightful interlude was the trigger for your PMR - in the sense that the stress was probably the final straw that overwhelmed your immune system. That's one of the more dramatic precursors I've heard of though - must have been awful.

Here's a thought.  Long ago read that the Rh negative factor which makes it difficult for infants to survive when the mother's is different from the baby's, is the beginning of a separate species splintering off.  The Rh- factor originates in Scandanavia.  Has anyone ever looked at blood type and autoimmune diseases, at least the ones that seem prevalent in people of northern European descent?

 

Really don't know. The Rhesus factor is a different thing from the A/B/AB/O blood group classification though and there are about 50 different antigens, some are clinically significant, others aren't. I suspect the Scandinavian theory is just one of many such theories - there is no real evidence. The whole of western Europe tends to have negative populations with the highest incidence of Rh negative amongst the Basque people:

Population               Rh(D) Neg            Rh(D) Pos       Rh(D) Neg alleles

Basque people..........21–36%............... 65% ......................∼ 60%

other Europeans..........16% ..................84%...........................40%

African American.........∼ 7%..................93%........................∼ 26%

Native Americans.........∼ 1%..................99%........................∼ 10%

African descent.............< 1%...............=""> 99%............................3%

Asian ............................< 1%...............=""> 99%............................1%

Perhaps it's a legacy from our Neanderthal forebears.  It was one of those programs I fell asleep during the key part   talking about how humans outside Africa have some Neanderthal DNA and not all of it is benign.  Interesting about the Basques.  I shall have to go do some reading about them.  

With that history I suspect my PMR will not "burn out" as optimistically as described by my rheumatologist unless my PMR is in the 5 year plan".

Two of my son's in-laws developed Wegeners arthritis after blood transfusions. I've had plenty of those during my 4 scoliosis surgeries. Gee, I would make a great case study for someone.

What?!?!?! FlipDover, egg whites??? I've never heard this! Maybe this is why Eileen keeps asking me why doctor said egg whites.

I keep seeing this whole leaky gut thing, but I've been ignoring it other than being a fan of probiotics.

How does one know if they have leaky gut issues? I don't have what I have read about like bloating, unless I ate something fried or too much wine, always had good bowels. 

Eggs, geez, I eat them every single day and I may feel better in some ways my inflammation is not going away. Hmmmm, obviously I'll look in to this. Thanks for this info FlipDover. 

Gosh, I'm being moderated, all I did was express my surprise with several ?! Maybe they think I'm angry or cursing.  Not, I just like to be expressive, but guess I won't be on here. Hee, Hee.

Basically I was shocked to hear of the egg white you talk about. I have never heard of it being inflammatory.  I will research more and thank you for mentioning this. Maybe they'll post my original response.  

I got a post snaffled earlier on - brain can't have been in gear! Mr Moderator is very fair though...

LOL I should be moderated in real life...

I first read about the eggwhites when researching the AIP...lol

As usual - google.

 

Do not despair ! Ido not, and never will, believe that diet alone is an answer to anything. I acutally believe AI diseases are brought on by a combination of things and that they need a number of things to 'treat' them.

Diet is something I *CAN* do... as opposed to feeling useless. Evn if it's just reading the latest speculations!

Actually I suspect it was the reference to leaking intestines - I understand there is often spam advertising doubtful remedies and the 5 and 4 letter words trigger a "moderate"...

I seriously doubt that diet can cure anything. But not eating hard durum wheat products stops me itching. There is a plus to being on 15mg pred - I can eat with without itching so am indulging in the odd sin 

And I DO have to say that my asthmatic grandaughter is doing VERY  well on a vegan diet. She went veggie about 6 months ago on ethical grounds and decided to see what happened with vegan - as a baby, milk caused eczema. Seems it might be helping. It isn't much of a hardship these days - she says there are substitutes for everything. Though she does miss cheese - she was my stinky cheese buddy 

Pee yew Eileen, ha, ha, just couldn't resist aging that to stinky cheese. 

I tried to  to go vegetarian once, couldn't do  I read about that blood type eating, said type O's are meat eaters. Other types (I forget which) are more able to go vegetarian.  

My husband hunts venison, I need to get him to do that more and I need to learn to cook it so it taste good! 

i see my moderated post did appear. See, I didn't say anything except for the symbols perhaps. Ha, ha. 

But I did ask why you have asked me several times why the egg whites.

ugh, word should be "saying" not "aging" though that mis is kind of accurate I suppose. Ha.

so...if no eggs for breakfast, and supposedly no grains, what can I eat? 

No way am I eating salad for breakfast! 

Because I can see no point in "egg-white omelettes" - the vast majority of the goodness is in the yolk. Egg whites have a place in cooking (meringues) - but not in an omelette!

The cholesterol being dangerous story is rubbish - eating eggs actually probably helps keep your blood cholesterol down, but even so, if you don't eat cholesterol-containing foods, your liver makes the stuff. It is one thing for the people with a genetic disease that makes them produce excess cholesterol but even so, not eating cholesterol makes little difference even to them. But the "nutritionists" started the "eggs are bad" mantra and wouldn't back down in the face of the biological evidence. A few years ago it was admitted eggs are good for you - you should eat up to 7 or something per week. But like all the recantations - it didn't get the same publicity as the "eggs will kill you" message did originally. And there are STILL doctors who'll tell you you shouldn't eat them.

It was because of your doctor's rather strange (IMHO) dietary restrictions I asked you. Because I see no justification for it - so I wondered about her reasoning.

I don't think that whole eggs are that bad - but I'll have to go and look for evidence. 

And you mentioned leaking intestines, using a different formulation  - that almost certainly trigger it.

Just had a quick look - and found an anti-inflammatory article that tells you to replace meat and cheese (bad because of the saturated fat apparently, not so but hey-ho) with "soy imitation products (veggie burgers, miso, tempeh, or tofu), egg whites, some fish, beans, free-range chicken, and high-quality protein powder." So obviously THEY don't think that egg whites are bad for inflammation. And there are other "proper" scientific papers where they discuss an anti-inflammatory effect of egg white.

The "egg whites and leaky bowel" association appears in articles by the Paleo diet advocates. I'm not going to get into an argument about that and I know there are people who get on very well eating it. However, the "paleo diet" doesn't actually have much scientifc backing in terms of the claims "man wasn't designed to eat blah blah blah". Nor does the "leaky bowel" theory they propose fit too well with much known physiology.  Google it and look at what sciencebasedmedicine says for example. However you want to look at it: there is no evidence that (relatively) large chunks of undigested foodstuffs simply wriggle their way unchanged through the gut wall and cause problems. 

I'm not saying there aren't people who would benefit from changing their diet in certain ways. I'm not saying that there aren't people who would benefit by omitting certain things from their diet. What I am saying is that some of the stuff you will find on the tinterwebs has no good scientific evidence to back it up and sometimes there are directly contradictory facts floating around. If you omit certain foods from your diet and you feel better for it - great. However, if you omit too much then you run other risks in terms of lacking nutrients. Any diet that is very restrictive becomes very difficult to follow which poses other risks - I replied to a young woman with lupus on another forum recently who was descending into a spiral of depression as she fought a cycle of failing at her diet and so feeling a failure for doing so and becoming stressed that she couldnt cope with the diet and, and, and ...

 

One of my friends has eliminated all grains from her diet and now has a B vitamin deficiency.  

My reply got moderated, but I "copied" it so will paste it here and remove the offending word.  No, the moderator has not desensitized the filter!  Layne, hope this isn't a duplication, something happened to my first post.  After a reading of high blood sugar after starting pred I stopped having my usual bowl of cereal for breakfast.  Now I have 1/3 cup pumpkin seeds, an orange, two eggs fried in olive oil or ghee, a mug of tea with milk of course.  In the middle of that I have my pred, also other supplements like cod liver oil, h*** oil, iron, but never calcium.  I feel it is a better balanced breakfast than I used to eat.☕

That blood type thing must be nonsense.  People until the last hundred years or so couldn't know what their blood type was.  They would have eaten whatever was available in the environment.  Their gut bacteria would have adapted to that - much more significant than blood type, and modifiable if circumstances change.  Anyway that's my opinion!

I read the book on blood types, I must admit I thought it was just a way of promoting the doctor who wrote it and selling his services and supplements. He was actually saying that certain types of people developed with different blood types over time, type O being the oldest and so those people should be eating lots of meat and A were agrarian, so wheat and so on. I am amazed I actually finished the book as it really was rubbish I thought, but I may be wrong! 

With you all the way ptolemy. Funny how some of these books are so fascinatingly awful you can't put them down isn't it?