Someone suggested tumeric to me, and they said that there is a product called cucumen that is a combination of tumeric and pepper, and that the pepper helps absorb the tumeric. I don't want to add a lot of additional products, but I heard of this from two different people. Does anyone know about this? I was doing well until I stood in line as I said earlier for about 20 minutes with friends waiting for a table in a restaurant. The next day I hurt from my neck to my toes. My hips are VERY sore and my upper back. It's lessening but very slowly. It's almost like the original flare up, and it just keeps hanging on. Some folks add things like over the counter drugs, but what I've read just says that pred negates it. I also have gained about 4 or 5 pounds, and i don't want to go in that direction. I've worked hard to get off 40 lbs. Low carb is the only thing that works for me. If it isn't a fruit, veggie or protein then I should not have it, but I do give in like most of us do at times. This is not for sissies.
I have heard of this but wondered how to use it. Would the other item be cumen? I only tried it once but didn't like the taste. If anyone could help us I would be very happy"
Apparently curcumin (turmeric) works well enough that there are some research studies. The piperine in black pepper raises the absorption level of the anti-inflammatory properties of turmeric, which otherwise is not particularly bioavailable. It certainly is not a substitute for prednisone when it comes to treating PMR, but its anti-inflammatory properties could possibly help with lowering the amount of pred needed. I believe that ginger (in the same family) is also helpful. I like to drink a mug of ginger tea made with about a teaspoon of fresh grated ginger every day. Ginger is also good for the digestion and possibly for migraine headache as well. Have not tried curcumin myself, other than as a spice in a recipe.
No - you're right there, definitely not for sissies!
Low carb has worked for several of us to avoid putting on weight in the first place and in my case to lose 36lbs of pred fat. I find fruit problematic - fair bit of sugar in some so I stick to veggies in large quantities.
One lady on here swears by using turmeric and garlic in cooking - said she could always tell if she hadn't had her usual fix of that or her oily fish 3x weekly.
There has been a discussion recently where someone said that the capsules tend to be high doses and can upset your stomach and chelate iron - causing anaemia. I have no idea whether that last is true but I think the general concensus was that using turmeric in cooking was fine.
Have you tried any complementary therapies? Some of us have found Bowen therapy VERY helpful for back pain - it won't change the PMR but it may help what I call the add-ons that are often found alongside it, such as myofascial pain syndrome. Layne will tell you about her experiences I'm sure. There is a thread about Bowen therapy.
I gave up simple carbs and gluten on diagnosis to try and avoid a moon face, it did actually work. I do go astray occasionally nowadays though. I try and eat a diet that includes anti inflammatories and the nutrients that are affected by the pred eg calcium, potassium, magnesium, vit D etc etc. I feel a healthy diet is preferable to filling myself full of supplements, although I do take vit D and calcium prescribed by the doctor. There is an enormous amount about good nutrients on the internet I have found.
All those herbs are good to be added to our diet however they can't replace the proper medication to take care of the inflammation the root cause of our health condition.
Be safe. All the very best.
🌺
Yes Tumeric paste is brilliant.
i make it up for myself and my dog who has lots of joint pain?
i cup of water
half a cup of tumeric
quarter a cup of coconut oil
one and a half teaspoons of black pepper.
put Tumeric in the water and bring to the boil, stirring until it thickens, add coconut oil and pepper. Allow to cool. Put in a jar in fridge. Add a large spoonful I n stews, sauces etc once a day..
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.
I had a bad experience taking concentrated curcumin in capsules: I felt worse and- this was before I was diagnosed with PMR- I became very anemic in one month. I found a study in the medical literature suggesting curcumin chelates iron from the body and is not recommended for inflammatory conditions resulting in anemia. I avoid using a supplement that "people say" is good for this or that malady. I prefer evidence based medicine, imperfect as it may be, for my health needs. Fear and desperation are potent forces but can lead to inappropriate choices.
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.
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.
I'm trying (and failed more than a few times!) to stick to an AIP 'diet' (auto-immune protocol). It's basically meat, fruit and (not all) veggies. It excludes nightshades (tomatoes, potatoes, capsicum/peppers, eggplant and more....) as they are inflammatory for most people with autoimmune diseases.
So, no dairy, legumes, eggs, grains of any sort... it's really hard until you get used to it and get a few recipes to use regularly.
I do try and use a lot of tumeric and ginger becuase it's thought to help. It also adds flavour!
My view is that if you eat nothing but 'real food' you have to be doing better than eating crap.
And trust me, I love eating crap.
"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.
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 ...
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.
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.