Hi all
I know that we need to take vitamin D as those of us who are light sensitive and stay out of the sun need this, however there is also lots of other suggestions on the internet. I do have inflammatory arthritus and many sites suggest turmeric, other sites suggest fish oil and omega 3. So, for those who have been doing this longer than I have (just diagnosed this year) what do you take? Is there a good make? Some seem very expensive. Any thoughts welcome. I hope this is ok to ask on here.
Hi Cowsaresweet, you are right, being sick is very expensive! I have had great success with turmeric, but be warned, it can take a month to kick in, and you’ve got to take a high dose, and it has to be a good quality one, and take it with pepper because it helps with the absorption.
I take Vitamin D but that’s because I’ve just been diagnosed with osteoporosis. So it depends on what’s happening for you.
The doctors I’ve spoken to have said you can try vitamin supplements because they’re over-the-counter, meaning the risks and side effects should be minimal (if non-existent) and if they work, they work. So you can experiment. If they make a difference, stay on them. And if they do nothing for you, you’ve lost nothing except a little money and time!
Thanks yes I am happy to try anything. To be honest as I am still on steroids at the moment and doing a gluten free and dairy free diet it is probably hard to work out what is doing me good. Just throwing teh kitchen sink in😅😂
A doctor told me the important supplements are VitaminD and Omega 3 Boots tend to do 3 for price of 2 ,these cheap ones are ok no oily taste and not too big.Taking anything else is flushing money into the toilet as the body doesn’t need other ones if you are eating properly.
Hello Cowsaresweet. I think I know too much about supplements because I didn’t get a diagnosis for 30 years or more if my lupus began as a teenager. I will never know. The wisest statement I believe is nutrition through food is best. However, the supplements I have found to be helpful after trying way too many over the years to feel better are the following: Vitamin D
As I do not tolerate sun or most lighting.
Vitamin C which I’ve recently found one that comes in gummies without too much added sugar and work! And a methylated
Form of folic acid because I do not process
Folic acid and last a good vitamin B supplement. I think it’s hard with lupus
To take my medications and space out my supplements. So some supplements are taken every other day. I hope this is helpful
Best, Titters
Thank you for your reply. It seems vitamin D is the crucial one and then once I have stabilised try different options to see if they make a difference. Still tapering off the prednisolone so hard at the moment to work out what is working or not.
Cowsaresweet, My 12 year old grandson has many symptoms at the moment and had recent bloodwork. The test that came back that alarmed the doctor the most was his very low Vitamin D, especially since he is young, eats well and gets outside. The doctor immediately called in a prescription for Vit. D. He has joint pain, rashes, headaches, dizziness, uncontrollable body movements, etc. I have lupus and low Vitamin D. I wonder if I had it in childhood. It was not tested for until bone loss was detected. I was on prescribed Vit. D for a long time until the other Vit. D got very high and I have hyperparathyroidism so that is a concern so I am always deficient on the one Vit. D. I don't really understand this even though the endocrinologist has tried to explain it to me. I do know that you do have to be careful with Vit. D. It should be monitored with bloodwork.
I am worried about my grandson. His ANA was negative, but his Compliment 3 was low. The doctor does seem thorough, so hopefully will get to the bottom of what is happening to him. He is a great kid and I hate seeing him going through all of this.
Healing hugs.
Thank you. I am hypothyroid as well you wonder how much these are all connected
I know what you mean. I think so much is linked together. Then doctors want things to be in the box and rely only on the tests they decide to do.
Healing hugs.
Yes I think one of the difficulties is that the doctors are all so specialist. So I saw a urologist for the blood in my urine, a neurologist for the migraines etc. It wasn't until I had a major flare and everything that the Lupus was diagnosed. Wishing you all the best.
Supplements and sulking...
Not panicking. Much. UPDATE
Hydroxychloroquine Prescription Information
MMF side effects - getting me down so much thinking about stopping them
Doctors and their lack of information !!!!
