so, the advice i haven't gotten the most recently is "you should take (insert random vitamin/supplement) to help boost your immune system so you don't get sick so much"
now... i know i'm still really new to this whole lupus thing, but isn't that the opposite of what i need to do? i mean, yes, i'm all for taking natural supplements that will help me with symptoms, but i'm not really sure the immune support/boosting ones would really be the way to go, right?
like i said, i'm a newbie so please correct me if i'm misunderstanding this illness.
I've had a lupus diagnosis for about 13 years (since I was 24). I must say I don't have great results with taking too many supplements. There are exceptions. I have been on prednisone for almost 4 years and do try to take calcium and vitamin d. I do not take much vitamin c because it directly blocks the effectiveness of cortisol (or prednisone) and then I feel really crappy. I would try to eat as healthy as possible but don't overdo it with supplements. Ask your doctor if you are wondering if it is something you need. If you do feel like you are getting sick a lot in addition to suffering lupus symptoms there are things like olive leaf extract and my favorite oil of oregano to combat colds and influenza once you already have them. They won't help your immune system fight itself but will fight the offending virus/bacteria. Hope that helps some.
I take prednisone (amoung other things) and my doctor has me on calcium. She always does when I have to have prednisone treatments because she says the drug does damage to bones like fractures and they're weakened (creates little holes? sounds osteoporosis-ish, no? hmm). But yeah she said bones need help to stay strong so I take calcium and usually a bit of vitamin D too, but calcium is the most important.
I was told that our immune systems are attacking our bodies...so they are over active. I know some of the vitamins such as Vit D are extremely important in our situation. And really, a good rheumatologist will explain exactly what you need to take and what you need to avoid.
Mine put me on a therapeudic dose for several months and will check it again in a month.
The medications we are given can play havoc with some of the supplements. It is something you really need to talk with you doctor about. I know some naturalist will go more towards supplements but they are not giving the strong meds. There has to be a balance. And Lynn...good question.
Before taking an supplement which our bodies may need it's always best to check with your doctor because of other meds which you may be on because counter reation can still be caused.
Our immune system is lowered because Lupus does'nt recognize infections so when they enter the body lupus reverts back on our immune system and lowers we even less.
I hope these links help you besides the advise other members have given besides.
The Hopkins article Terri provided is the same info that the hematologist told me when I was dx with ITP. Immune boosting foods (garlic is a major one) should be avoided in autoimmune disease. Our immune systems attack the wrong things and food/supplements that are known to “rev up” the immune system, don’t change what it attacks. I would ask your rheumatologist if there are any supplements you should take. As others have mentioned, calcium, vit d, b12 and iron are sometimes what we are lacking and can contribute to your symptoms. Blood tests will determine exactly what you need.
Until i was told i had Lupus i used to have a clove of Garlic daily but when i was told about the lupus i soon looked it up and i stopped having it 5yrs ago.
Well i've just had my next rheumo appointment come for the 30th november this specialist is quick on seeing me to say the least and regarding calcium i'll soon know from my x-rays.
I have a B12 jab every 3mths for life because of my anaemia besides folic acid daily but i have read that b12 is mainly in the area of the stomach and lupus and autoimmune diseases really go at it and that's why alot of us end up with anaemia.
Calcium and Vitamin D are both very important. Calcium as you grow older, especially women will help prevent brittle bones. I'm not exactly sure what the Vitamin D does beyond being the 'sunshine' drug but there is mounting evidence that it is important for Lupus patients, especially people like me who live n northern climates. Omega three is also important for eye issues like Sjogren's, photo sensitivity, etc.
The one thing important to note is that calcium should not be taken at the same time as most medications because it binds to the drug and reduces the effectiveness of the drug. I take my vitamins and minerals (+50 multivitamin, calcium, vitamin D, and omega 3) at lunch time and my lupus meds morning and night.
I have sjogrens disease bad where it's drying my system out and affecting my organs besides my eyes...regarding multi-vitamins i can't take them as i have IBS bad and they constipate me badly tried them years back and at the moment i'm eating best i can to make me go besides medicine.
I do eat fish regular for my omega 3 so i'm ok regarding that but i'll know more with what's happening when i see the rheumo as my toes are disfigured now through my osteoarthritis besides bad spasms helping it along the way and lately i've been having bad cracking of the toes/ankles and years back i could crack my knuckles for relief well he had them x-rayed last time i saw him, so i need to wait for the outcome.
Thank you for your imput though as it's most appreciated.
This brings up a very interesting question. I was diagnosed with Lupus a year ago and although I enjoy a vegetarian diet loaded with many fruits, vegetables and herbs (all known to help boost the immune system) I'm wondering if this is not a good path to stay on. I do include B-12, folic acid, Vit D-3 and DHEA supplements as well. Perhaps I'm only compouding my problems?
One thing to note with omega 3… It thins the blood like aspirin. So you should be careful if you are taking other blood thinning drugs and should not take it without a doctor’s advice if you have low platelets. =)
Being a vegetarian is alright because it helps problems such as candida, IBS and also coeliac disease besides your lupus, regarding herbs some can cause counter reactions with the body and also other meds if you take any....this link may help regarding herbs which help but it's still always wise to ask your GP about what you want to take to make sure.
Y ou seem to be taking all the correct supplements on helping yourself Kathy. :)
Kathy said:
This brings up a very interesting question. I was diagnosed with Lupus a year ago and although I enjoy a vegetarian diet loaded with many fruits, vegetables and herbs (all known to help boost the immune system) I'm wondering if this is not a good path to stay on. I do include B-12, folic acid, Vit D-3 and DHEA supplements as well. Perhaps I'm only compouding my problems?
I'm on 75mg of bay asprin because of my clots in the past and i eat fish about twice weekly, so i should be ok with that and when my bloods took from me, it's never quite as thin as it used to be and if i hurt myself hardly any blood leaks but they say i have no clots either. :)
Roni said:
One thing to note with omega 3... It thins the blood like aspirin. So you should be careful if you are taking other blood thinning drugs and should not take it without a doctor's advice if you have low platelets. =)
Thanks so much for your prompt input! I found both sites to be very informative. :-}
Tez_20 said:
Hello Kathy,
Being a vegetarian is alright because it helps problems such as candida, IBS and also coeliac disease besides your lupus, regarding herbs some can cause counter reactions with the body and also other meds if you take any....this link may help regarding herbs which help but it's still always wise to ask your GP about what you want to take to make sure.
Y ou seem to be taking all the correct supplements on helping yourself Kathy. :)
Kathy said:
This brings up a very interesting question. I was diagnosed with Lupus a year ago and although I enjoy a vegetarian diet loaded with many fruits, vegetables and herbs (all known to help boost the immune system) I'm wondering if this is not a good path to stay on. I do include B-12, folic acid, Vit D-3 and DHEA supplements as well. Perhaps I'm only compouding my problems?
Well omega 3 would be good for people who clot like you. Someone like me with ITP shouldn’t take it though. I also can’t take aspirin or ibuprofen. I always check supplements with my doctor because some can have side effects which in an ordinary person would be fine, but can cause an issue with my blood counts. I mean, who would think garlic & omega 3 would be bad for you? But the combo would drop my counts for sure! LOL
Your welcome but regarding herbs always make double sure by checking first.
Love Terri xxx
Kathy said:
Thanks so much for your prompt input! I found both sites to be very informative. :-}
Tez_20 said:
Hello Kathy,
Being a vegetarian is alright because it helps problems such as candida, IBS and also coeliac disease besides your lupus, regarding herbs some can cause counter reactions with the body and also other meds if you take any....this link may help regarding herbs which help but it's still always wise to ask your GP about what you want to take to make sure.
Y ou seem to be taking all the correct supplements on helping yourself Kathy. :)
Kathy said:
This brings up a very interesting question. I was diagnosed with Lupus a year ago and although I enjoy a vegetarian diet loaded with many fruits, vegetables and herbs (all known to help boost the immune system) I'm wondering if this is not a good path to stay on. I do include B-12, folic acid, Vit D-3 and DHEA supplements as well. Perhaps I'm only compouding my problems?
Your right with people who clot it's not so bad for us but yourself where you can bleed easily with ITP it's a high risk more.
Roni i used to take ibuprofen regular and when i had my monthly i used to pop as many as 16 in a day to ease the pain but thank goodness that lark was stopped and the first rheumo soon had me off them onto paracetamol, then when i had my TIA when i joined the site, the TIA unit said paracetamol carried to many high risks and i'd be better off taking ibuprofen...so it's no win position with some.
Well how they say Aspell cider vinegar is good for we, sure to god garlic would be the same, that's another issue i can't get my head around.lol
Love Terri xxx
Roni said:
Well omega 3 would be good for people who clot like you. Someone like me with ITP shouldn't take it though. I also can't take aspirin or ibuprofen. I always check supplements with my doctor because some can have side effects which in an ordinary person would be fine, but can cause an issue with my blood counts. I mean, who would think garlic & omega 3 would be bad for you? But the combo would drop my counts for sure! LOL