I am always reading bits here and there about the benefits of certain vitamin/food supplements. Does anyone incorporate such supplements into their diet or are they to be avoided as they can aid the immunity (thus having the potential to counter the job of the immune suppressants we all have to take). If anyone does take any supplements; What do you take and is this something you have discussed with your doctors or is it something you have tried on your own? I was thinking of coconut oil and omega 3 (I don't eat any foods rich in this), but I don't really want to have to ask my doctor for approval.
Does anyone take vitamin/food supplements? - Vasculitis UK
I take calcium/magnesium to counter steroids- C and zinc to ward off colds- D told very important - and fish oil.... I havent discussed with doctors just read loads - olive oil or coconut is supposed to be the best for cooking.
There is a difference of opinion about taking supplements but I shall continue taking them!
Sorry forgot one doctor did say very important to take calcium if you are on steroids.....
Thank you. I already take (prescribed) alfacalcidol as I'm on prednisolone. I have, like you, read loads of benefits of adding fish oil (capsule form) and I don't want to go down that path where I'm justifying my self to the doctor (who'd probably err of the side of caution and be opposed me having them). I'm in the 3rd week of a cold and would like to be healthier without affecting the job my drugs are doing for my WG. I'm glad to find someone else doing it already.
The primary consideration is what medications you are on - if you take prednisolone for example, then something like echinacea is not a good idea and I imagine that might apply for most immunosuppressants. If you don't want to speak to your doctor then find a good pharmacist and ask for a chat - because they are far more knowledgeable about pharmacy than most medics who often don't even read what it says in the BNF when prescribing a drug and so manage to use it wrongly! They take as long to qualify as a doctor but all they do is pharmacy in all its aspects.
As Sheila says, at least calcium and vit D (the vit D is as important as the calcium) are essential as supplements if you take pred. I can't see that coconut oil is a problem as an addition to your diet and I know someone with a profoundly handicapped son who has achieved miracles in avoiding infections and hospitalisations by using that and cooking all his meals from scratch with organic food instead of the pre-prepared enteric nutrition. Many vasculitis patients add various foods to their diet, including turmeric and garlic, as antiinflammatories and say it does make a difference.
Thanks for the info. I've ordered some coconut oil and I'm going to experiment with it's many uses when it arrives. I quite like the idea that it helps with digestion and can suppresse appetite.
It suppresses appetite because it is a fat - eat a bit more of any fat and you remain satisfied for much longer than eating low fat/high carb stuff. I have looked for it here but olive oil is (not surprisingly) the overwhelming oil! I would like to try it.
I've found it on Amazon, cheaper than Holland and Barret (the health food store) for the same brand. There is lots of suggestions for how to use it. I'm looking forward to trying it.
I am a big coconut oil fan. You can buy 54fl oz tubs from Costco for around £12 which is the cheapest I have found it.
I have used it sucessfully in scones, pastry and flapjacks as well as " normal " oil uses. It smells delicious when frying onions, ginger and garlic etc to make curries!
Apart from that I eat loads of veg, fruit and have bought a nutribullet which I use to make at least 1 smoothie every day. I am underweight ( despite being on prednisolone ) due to bowel problems secondary to Behcets but my diet is as nutritious as I can make it and I think it definitely helps. I also have some home made cake every day!
If you are on Facebook a group of us have started a group called Vasculitis Healthy Eaters where we share recipes, diet tips and generally motivate and support each other. You can send a request to join.
I feel that my diet is the one thing I do have control over these days and although I would love to put some weight on I have managed to stay very mobile, my joints ache but there is no extra pressure on them!
Oooh - wonder if my daughter still has her Costco card...
Lol, my neighbour has one and I get her to get me it. It's a massive tub and lasts for ages. Makes wonderful roast potatoes as well!
Cheers Keyes, sadly (or not, depending on your preferences) I'm not on Facebook, but the fact that there is already a group of you swapping healthy eating ideas tells me that diet is a huge factor on how we can try to improve our various conditions and symptoms. Thanks for the info re coconut oil.
I am on steriods, so I take a liquid calcium/vitD/magnesium supplement. Also on methotrexate so i take folate and B vitamins. I also tale a multi-vitiamin, COQ10, alpha lipoic acid, potassium, and luetin. Doctors know what I take and say it's ok.
Hello London37, I wonder if you'd be available for a chat. I have a still undiagnosed and mild (so far) form of vasculitis. Am just getting started on understanding what supplements etc can help as I am not gonna be put on medication until my doctor says my blood markers show real change. Any help would be much appreciated.
Sorry to have taken so long to reply, but there’s been a lot going on lately. Hope you are doing well. 😊
In my case it seems like the main problem is keeping the inflammation down. The best way to do this is by following the Anti- inflammation diet and stay away from processed foods, sugar, dairy, and trans fat as much as possible. It’s hard, but at least 80% of the time helps a lot.
I dont take drugs except Tribenzor for blood pressure, a small Lipitor, and aspirin81.
I do take a lot of supplements because I have a lot of pesky issues such as arthritis, osteopenia, cataracts et.
What seems to help most in keeping the inflammation and joint pain down is Tumeric and ginger. They are also blood thinners so use caution. I ok everything with my doctor and have her approval.
Everybody is different though. If you would like to chat, please get back to me, and I I will answer right away this time! 🙂
Oh, and I take omega 3 chews.
Thanks London37, I have taken my first omega 3 capsule myself today. It's quite a list you take. I think I'll introduce one thing at a time, that way if I get a reaction I will have a better idea of the cause. I hope your eyes are better since the other day. Cheers.
Hl raspberry_tea. The supplements I take are to lessen the bad effects of different pills I take. The omega 3 also acts as a blood thinner and i can only take a small aspirin. Before you take anything, ask a doctor or a pharmcist. Some supplements are helpful but some can interact negatively with your meds. I am going to the eye doctor tomorrow. Thanks for asking.
I use Borrca as it has everything in it and it does seem to help? be a bit more up and about, which is important to me.
I take a high quality fish oil brand Vegepa with a high concentration of EPA which is good for the immune system and also allegedly helps with depression. The fish oils from the supermarkets are ok but they are low in EPA which the most beneficial part of the fish oil. You can buy Vegepa from Amazon. The one I buy is Pharmepa Step 1 Restore. In my opinion it has helped with my anxiety and depression but this is only my opinion. Now I have Cardiomyopthy caused by the Churg Strauss I asked my specialists if I could continue with the fish oil. They said to me it should be encouraged because of the fish oil benefits to the body.
One other thing I bought was a Nutribullet. Everyday I blend half a pot of spinach or other green with any other fruits you like such as oranges, apples, pineapple, ginger, strawberries. The list is endless. I find that I have energy and get a natural hit of vitamins from the fruit and vegetables and believe me it is a nice drink and you wouldn't know the spinach or green is part of it.
Thanks for the info. some good tips. I definitely notice the difference in my health when I let my diet slip and eat too much junk. I become sluggish and I look and feel bloated very quickly. I definitely have more energy when I consciously watch what I eat. I wanted to add fish oils/omega 3 as I don't eat fish. I might give the spinach a go too.
You don't say what your diagnosis is or what drugs you are taking from the doctor. If you have any kind of vasculitis, which I think you most likely have, it is important to avoid anything that is a vaso-constrictor, ie reduces the capacity of your arteries to carry blood to your vital organs. What you need is something that is a vaso-dilator which is what anti-inflammatories do. You are at liberty to ask your doctor for a copy of the results of your blood test and these will inform you if you are deficient in something important. (My GP glosses over matters which I consider of importance.) There is some information online about serrapeptase and ashwagandha as performing in this way but the jury is out on their potential side effects. Hopefully, someone will do some accredited research so those who wish to take a supplement can do so with confidence.
Hi WMTuk, I have WG. I've had cyclophosphamide, ritiximab, azathioprine in the last 18 months (since diagnosed). Currently I'm on methotrexate and prednisolone with omeprazole, alfacalcidol and folic. I have already eliminated various foods from my diet and I attempt to be as healthy as I can with my choices (not easy when surrounded by so many temptations at the supermarket). I agree that I would be nice to have some confidence in taking supplements but the best we can do is make an informed choice. It's crazy that we worry so much about these supplements when the food industry adds all manner of additives, preservatives, colouring and enhancers to our foods, which can cause problems to people who are susceptible.
I have also found a bit of exercise helps my health too.
Thanks for your advice.
Hi Raspberry Tea, I'm trying spiritual healing now because it can't make anything worse and some people say it makes them feel better. Hope you are comfortable over the Bank Holiday.
I like it. I do think there is something to spiritualism (having the correct state of mind) to heal your self. Today, I actually felt a little bit of the old radiance that I had in my old self so I think I'm going to be ok, thank you. I hope you have a happy bank holiday weekend too.
I am trying to eat mainly fresh foods... Very little packaged, processed foods that contain all those additives. I talked to a nutritionalist and she said--cut out sugar, grains, and fats....at least 80% of the time. A little treat on the weekend wont hurt. It's hard at first, but after a while you get used to it. And I do feel better! Exercise is also very important for good circulation.
I also feel much better since I found this forum and all these wonderful helpful people since being in Fort Worth, I don't have access to any Vasculitis clinics....just a rheumatoligist with a few vasculitis patients.
Do be very careful though.....I just read an article about cinnamon supplements and statins not mixing.
Our Target has a computer program that can run the meds and supplements you take and tell you if any of them should not be taken together. If you have Target, you might ask.
Just be careful.....and Best Wishes
Thanks London37. You do have to be be very disciplined to cut out sugar, fat and grains. But by applying that rule you are automatically going to make healthier choices (no cakes, doughnuts or biscuits). I'll be careful and I am not going to take anything other than the omega3 and Coconut oil for now. And you're right about having somewhere to discuss stuff like this...makes me feel better too.
I think that you should check and discuss with your doctor/specialist before adding any supplements to your diet as they can affect other medicines you are taking.
I eat as healthily as funds allow and have reduced my gluten as this definitely helps me. I avoid processed foods and eat wholemeal grains if I eat any at all. I avoid processed sugars.
I kept a food diary and rated my days out of 10 for joint pain/cramps, stomach troubles, headaches etc and that enabled me to see patterns and adjust my diet accordingly. It's an ongoing process.
It is a minefield and I am still learning and it doesn't mean I don't treat myself, it just means when I eat something I know I shouldn't I am aware of the consequences for me and I eat it knowing what to expect.
I've just been given several boxes of chocolates for my birthday and they'll last me ages, but I still enjoy the treats.
I nibble on nuts – almonds and a few walnuts – through the day and have noticed they help with stomach problems and cramps. Since I've introduced walnuts into my daily diet my hairdresser has noticed my hair condition is much improved – coincidence? Maybe but as long as it's not doing me any harm and I'm enjoying the snack I'll carry on.
A friend of mine who has lupus and suffers similarly to me, takes the following and is now medication free, although I do understand that Lupus is different to Vasculitis there is some overlap in symptoms and both are auto-immune conditions:
Serrapeptase (called Serraenzyme). Serrapeptase digests (dissolves) non-living tissue, blood clots, cysts, and arterial plaque and inflammation in all forms. For best results take on empty stomach. My friend has taken it for 2 years amd if she stops her symptoms worsen. Take one a day but more if having a flare. Take with water not with juice.
Nettle - one cup of tea per day. You can buy organic tea or take as tablets. Nettle has been used for centuries to treat allergy symptoms, particularly hayfever which is the most common allergy problem. It contains biologically active compounds that reduce inflammation.
The next one is Siberian Ginseng. It helps with energy. The other types of Ginseng are not recommended for auto-immune conditions. Siberian ginseng contains remarkable compounds that favorably affect the adrenal glands, the small glands that rest atop the kidneys and secrete stress-fighting hormones
Vitamin D3 4000 IU per day (Solgar make) Some people use vitamin D for skin conditions including vitiligo, scleroderma, psoriasis, actinic keratosis, and lupus vulgaris. It helps with the absorption of calcium too. It is also used for boosting the immune system, preventing auto-immune diseases.
Magnesium Citrate, this one really helps sore muscles. Increases water in the intestine so aids constipation. Every cell in the body needs it. Solgar make.
Someone I recently chatted to has a member of her family with early dimentia and another who has more advanced dimentia, both have benefitted from adding coconut to their diet as it it aids brain function and the family have noticed an improvement in the lesser affected member of their family and the other family member has stabilised.
We are all different and the meds we take and the way the react with us are equally diverse but whatever you decide to do I hope it works for you.
Thank you for your detailed information. I'm working through it, very much appreciated.
Magnesium is brilliant helps ease painful joints muscles and cramp. also helps the bowel it works wonders on constipation and helps with difficulties sleeping. also is good for circulation and heart
The best way to take it is to buy ionic magnesium online called mega -mag 400mg by Trace Minerals research. You can also , if you font want to tske it orally, buy magnesium oil , After a lot if resesrch i found a great product by life-flo great value but good qaulity (takes a while to deliver as from the states) non greasy easily absorbed into the blood stream. For digestion tub over abdomen and stomach or wherever required.
I asked my consultant if it was OK to use and he said yes.
Interesting. I've just had a little look at the product you mentioned online, KirstyW1999.
Some good testimonials from other people using for joint paint and migraines too. Thanks.
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