Supplements

[chapatti]

Hi All,

Does anyone take supplements alongside their usual prescribed medication? I have SLE, vasculitis in the legs and rheumatoid arthritis. Always suffering from muscle pain and sharp joint pains in knees and ankles. Bloods are all in good range so I started taking Glucosamine sulphate around 10 weeks ago and I have seen a difference in terms of muscle pain which has gone down I was thinking of taking vitamin B12 additionally - any thoughts or other ideas?? TIA X

[Paul_Howard Partner LUPUS UK]

Hi chapatti ,

It's always best to discuss any supplements with your consultant before starting them so that they can advise you about any potential adverse effects or interactions with other medications you may be taking. When reading about the experiences of others you must bear in mind that lupus is different in everyone and what works for one person may not work for another, or could be potentially harmful.

[chapatti in reply to Paul_Howard]

Thank you - it has been mentioned to my specialist nurse in the past and she said there’s no harm in taking supplements. Therefore I gave it a go but now thinking of adding Vit B12.

[miccika1 in reply to chapatti]

Your specialist nurse made a very bold and potentially dangerous statement. There are plenty od supplement that 1. Interact with medication and 2. Increase lupus activity. Please make sure you get advise from a pharmacist or an MD as well as do your own research

[chapatti in reply to miccika1]

Hi, Miccika1 and Paul_howard may be I should have been a bit more clear with my above comment. My nurse and I were talking more specifically about Glucosamine. In regards to other supplements, it was just a more general comment - she was not implying in any way to take any supplement off the counter and even before I do take Vit B12 it will be discussed with my MD before I start. Me and my specialist nurse both know how sensitive my condition is and anything discussed, my consultant is fully aware of and authorises it before I go ahead.

[Paul_Howard Partner LUPUS UK in reply to chapatti]

Hi chapatti ,

miccika1 is right, that statement is exceptionally broad. It is always best to seek expert medical guidance on this matter.

[chapatti in reply to Paul_Howard]

Hi Paul, I have replied to miccika1 please read.

[Cathyan]

Hi chapatti. I take fish oils, Vitamin D, Vit b12 (as I’ve been on lansoprazole high dose for years), and the prebiotic Bimuno. I have SLE and Psoriasis.

[chapatti in reply to Cathyan]

Thank you - I’ve been on Lansoprazole for years too and now can’t do without it! How does vit B12 help with that?

[Cathyan in reply to chapatti]

You're welcome. If you take lansoprazole for a long time it may cause B12 deficiency - see here - under "long term use" nhs.uk/medicines/lansoprazole/

[Spanielmadlady]

I take vit c every day.you can take b12 tablets or sublingual spray as its water soluble so you just pee out what you dont need.i have b12 injections for b12 deficiency anaemia so it's safe to take .kind regards x

[holden01]

Hi Chapatti,

There is an organic superfood supplement that I take twice daily that my coach informed me about. I have taken it for 3 weeks now and I have felt amazing and my fatigue has disappeared. I can message you the details if you'd like?

[Princerogers777]

Yes consult yur doc he know if u are low on anything on yur blood test. I personally take calcium plus D, Vit C, probiotics,

[Florence91]

My consultant has me taking high dose vit D for several years now. No other supplement, but I do it on his advice only. Take care with extras

[Cas70]

Hi - I would add Vit D spray to the B12 as combination did me good ref energy. I have Turmeric every day and that takes a few weeks but is great for arthritis aches. Good luck

[chapatti]

Thank you all so much for your advice. I will defo speak to my consultant on next appointment. Although, I have always been advised to keep up with vit D over the years which I have done so. Tumeric is a key ingredient in Asian cooking so I have been consuming this for decades

Thanks again x