Dear all,
I hope you are all well and not much in pain. Now my older daughter is also diagnosed with SLE, i feel life is a bit more challenging and she is a new mum. I wonder if anyone can suggest couple of brands for Vitamin D. Everytime I take an over the counter brand, it makes me very sick.
Any brand suggestions I can try?
Sending love and well wishes to all.
L
Hello. I'm sorry your daughter has it too now. 😔 I get all my vitamins from healthspan on line. They have always been good for me. I get cholecalciferol on prescription for vitamin D.
Hope you get some that suits you.
Take care
Thank you so much.
“Better You” do a mouth spray which is very effective and the taste is quite nice. It’s undertaken clinical trials and came out on top. They do a test if you want to check what strength you need to take and will give you a free voucher for a free spray with your results for the recommended spray or you can just buy one you think would be suitable. I use the 3000iu daily as does my other half and it brought my Vit D up from 50 to 100.
I get Adcal-D3 ..which is 1500mg Calcium carbonate & 400IU of VitD on prescription from my Consultant, …..they are chewy tablets,…by a company called Kyowa Kirin Ltd.
There are also Vit D Sprays you can buy over the counter.I use the Spray as well between October & April when there isn’t much VitD absorbed from the sun.Neither cause me any nasty symptoms.
But do ask your doctors if they are suitable for you & your daughter.
Can you get it prescribed from the doctor? my daughter is currently being tested for SLE after being diagnosed with kukuchi disease she is 19 - I was hoping SLE didn’t run in the family 😭
Unfortunately, both my daughter's now have Systemic lupus. Although they say it does not run in the family, in my case, me and both my daughters have it. Our consultant said it was rare, but I do worry if my grand daughter (5 months) might have it too. Our GP is such a drag, we dare to call and ask something and the centre manager makes life so difficult I dont even think I can ask any appointments without going into depression. I was thinking to order international from a friend or visit a private GP to get it. Anything to avoid that surgery who bully patients and purposely delay medicines. I can not reason with them. It feels they are there to shout at people and murder patients or drag them. They repetitively fail their duty of care. I will make a complaint to medical council when I feel a bit better. Thank you for your reply and suggestion. L xx
I have vitamin D on prescription and take Calci-D which also gives me calcium. Not had any problems at all. It's a powdery tablet that you suck until it's dissolved.
I've been taking Solgar Vit D3 1000IU, for years now and my vitD has never been so good. Buy the softgel, not tablets. Good ludk
Hello
Sorry to hear about your daughter.
I take a vitamin D supplement as I’m photo sensitive and my levels were low / under the normal range.
My lupus doctor told me to take Solgar. They’re made in small batches and are high quality.
I started on a high dose, 4,000 units I think and then reduced to 2,000 after about a year. But he always says not to worry about the high doses, as your body will get rid of anything it doesn’t need.
I hope you find something you can tolerate. Vitamin D is very important to us, as low levels seem to be linked to flares but it’s needed for heart health and to prevent some cancers etc.
Best wishes
Wendy
Thank you Wendy. I will try few of the recommended brands . I am heart broken with the latest diagnosis. Now both my daughters have it. My older daughter almost died during birth as it was not diagnosed earlier, although we visited St. Thomases to seek help few years back but the consultant dismissed us saying she was fine. We had the face pictures, symptoms and two people in the family have SLE and he said it was not Lupus. The funny thing is that the same consultant also who delayed my diagnosis (8 years) did the same to my daughter. He is quite well known and also works at the London Lupus Clinic and a useless consultant(sadly). Due to delay in her diagnosis, the consequences were severe. She was very very sick. Unforgivable. Luckily, she has now been referred to be seen by our current consultant at Royal Free privately and she is in safe hands. She is also being moved to the care of this brilliant consultant at Royal Free. I cant write enough about St. Thomases failure on her care. sorry for the rant.
VitD is important and getting the right brand will save her life in my opinion.
L xx
I am so very sorry to hear what you've all been through. You are right not to name doctors here, but please private meesage me and tell me who this is.
Us lupus patients have to be so on the ball and constantly researching our illness and symptoms, in order to get the best possible outcome. But my concern has always been those that are too ill to fight for themselves and have no family/friends who will fight for them. Heartbreaking to think about.
I wish you all well and please get in touch if you need advice, this site is worth it's weight in gold.
Wendy xx
I agree with you Wendy. We are vulnerable and most of the journey is trial and error until diagnosed. Alot of heart ache, pain and emotional distress. Most peoole dont even know about this platform, which is a goldmine.
I hope you are well. I private messaged you about the details on the consultants. Thank you very much for your well wishes. 😁
L xx
Hi there,
I was so interested to read your ‘rant’ about the consultant at St Thomas’s. I used to be a patient there under Professor Khamashta. When he left I too had bad experiences and went to the London Lupus Centre at London Bridge. This really was not much better, disappointingly. I ended up seeing Professor Hannah Cohen privately and Dr Voon Ong at Royal Free. Both of whom I feel safe with.
Would you mind messaging me privately the details of the consultant at St Thomas’s; it would be interesting to know if it was the same person I saw.
With very best wishes xxx
Vitamin D is a fat soluble vitamin and the body is not able to easily rid itself of excessive. Unfortunately your consultant is giving poor advice. What he said is true for water soluble vitamins like vitamin C, but not for vitamin D.
He is a well respected rheumatologist and lupus expert. I trust him. He doesn’t stop supplementing until patients get into the hundreds. Me, I was 32. Normal range is 50-150? It’s taken 4 years to get my level to 75. I don’t need to be concerned about overdosing on vitamin D.
I use a vitamin D3 spray the brand is Incite. I brought it from Amazon
Hi LalSD,
I am the same. i am extremely hypersensitive to almost everything and that is no exaggeration.
I take Biocare vegan Vit D3 1000 iu 2x a day. I have found that i do not react to it. I started at one a day and gradually increased it to 2 x a day.
Bear in mind that we all have different constitution, so it may no suit u as well as it does me
All the best
I use Purolabs. Its not cheap but its high quality ingredients. Unfortunately with supplement you get what you pay for. It took me ages to find a good omega 3 supplement, some tasted burnt or just foul. Purolabs promised it was guaranteed to taste fine and it absolutely did. They have a website and I order vit d, menopause mix, omega 3 and biotin online from them and get them within about 7 days. They are completely great and they have 15% off deals usually or buy one get two more half price etc...
I take the Holland & Barret one without problems. I used to get it on prescription, but the formulation I was given stopped being made and it somehow dropped off my prescription list.
I agree with Wendy above - most of us stay out of the sun so there’s a high probability that we have very low levels, despite being fat soluble and therefore not just washed out. If you’re concerned and you doctor is unhelpful you can get vitamin D tests privately (just Google).
I get a prescription from the dr
I have to say I have always been one to get stomach/gastro problems (I have GERD) but I've been fine on the Boots own brand vitamin D tablets, which are not too expensive and they have been on 3 for 2 for ages. I know you mentioned you've taken lots of over the counter ones so you may well have tried the Boots ones but I thought I'd mention it just in case.
Best wishes
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