Vitamin D

[Pxs75]

Does anyone take Vitamin D as a treatment for Lupus and if so do you find it helpful? I was told today there is no alternative for me other than Hydroxychloroquine which I took an adverse reaction too, but Vitamin D supplements might help. I am finding the fatigue at the moment almost unbearable, while continuing to work full time from home, although my boss wants me back working in a clinical environment, and I’m willing to give anything a go

[Jmiller623]

A lot of people with lupus and without lupus have low Vit D. We don’t get much sun these days. Mine was low at diagnosis. I was put on 10000 IU twice weekly for like 3 mos and now on 3000 IU daily.

Did it help? Absolutely. My hair and nails now grow like crazy since it’s been repleted. My vit B12 was also borderline low so can’t say if both, one or the hydroxychloroquine helped but yes, my energy levels did improve. I don’t see the harm in taking vitamins B12 and D to see if they help. It’s hard to overdose on B12 but too much vit D can cause over absorption of calcium and leads to things like kidney stones.

Maybe asked to have your levels checked but B12 100 mcg and vit D 2000 IU daily shouldn’t be a problem. Let your doctor know.

Funny thing, I was taking vit D and B12 for years before diagnosis and was told to stop them. Low and behold levels were low and I was self medicating. Get em checked before if you can.

Hope this helps. ❤️ xx

[Wendy39 in reply to Jmiller623]

Hello. Are you able to say what your levels were? I have just posted a few questions about bloods myself and Vit D may be an issue for me too. Thank you. Wendy

[Pxs75 in reply to Wendy39]

I don’t know what my levels r unfortunately I was just recommended by my rheumatologist to take it

[Wendy39 in reply to Pxs75]

Thank you. I think I need another discussion about this. I am so tired right now and finding it hard to find the motivation to do anything much at all. Just want to go to bed.

[Pxs75 in reply to Wendy39]

I am really struggling with fatigue but hoping being a bit more kind to myself with rest and taking the vitamins will help x

[tabjw1]

I take both and yes vitamin D is helpful.

[dgleds]

I use to be on Hydroxy for what they thought was lupus, but I thought they were wrong and over time came off the stuff...(Dont do that!) Anyways when i came off Hydroxy the specialist said to me,"Will you at least go on 2000 IU of vitamin D daily"? I was ok with that, and i take it in a form with vitD, calcium and magnesium all together...I havent had anymore joint pain etc for a very long time, and feel like my old self...I still say it was menopause before...and well who knows...I am also hypothyroid and was over medicated a long time too on synthroid...I think if you take synthroid long time, it can mess your vitamin D levels up..mine were low, but not off the charts apparently...

[Wendy39 in reply to dgleds]

Hello

How are you? Haven't "spoken" to you in ages.

I have literally just posted about Vit D, iron levels and fatigue. It is wiping me out right now.

Do you mind me asking, do you know what your levels were? And who said about taking the Vit D supplement?

Thanks

Wendy x

[dgleds in reply to Wendy39]

Hi! Wendy,

It was a rhumetologist(sp) that spoke with me...He never said what my levels were, just that they were not off the charts, but getting pretty low (and I eat well etc., so im guessing maybe Synthroid over the years may have done this, I've heard it can mess with calcium, magnesium and vit D in your body)... It was also the Rhumeys suggestion for 2000 IU of vitamin D daily..

[Wendy39 in reply to dgleds]

Thank you. My levels are not dangerously low. I’ve heard of people’s levels being so bad that vit D is untraceable. Just think I could benefit from it being higher. Thanks for clarifying. I hope you’re keeping safe and as well as possible. x

[dgleds in reply to Wendy39]

Thanks Wendy Hope you doing well and staying safe too...Over here in BC our covid numbers got to single digits, so they lifted the restrictions a bit. That wasnt a good idea, cause many young started hitting the beaches etc and now our covid cases are going up quite quickly Hoping it all goes away....I guess its going to be a while

[heatherevans28]

Vitamin D is recommended to be taken by everyone in the UK, but for those with lupus (especially if you are photosensitive) it is often essential because we are very often deficient. I have taken it for years with calcium and it has really helped limit my bone density issues from steroids. I would just clarify that it's not a treatment for lupus. If your fatigue is caused (even partially) by a deficiency then it will help. Either way, I would recommend taking it.

For fatigue management, good sleep hygiene and exercise can both be really helpful and might be worth looking into. It sounds counter intuitive but as long as you get the balance right it does work. I know a lot of us have joint issues or comorbidities but low impact exercise like pilates or yoga can be just as helpful. If you don't exercise much at the moment due to your health then a physio could help you to set up a slow graded approach to reintroduce it. There's also guides for this available online if you would rather do it yourself.

All the best xx

[Spanielmadlady]

Just curious....have they rule out every single lupus drug? Steroids,immunosuppressants and biologics ? I do take vit d it's in my bone protection meds cant say how much it helps as I have b12 deficiency anaemia and hashimoto's both of which cause fatigue

[Pxs75 in reply to Spanielmadlady]

My symptoms r not severe enough for those other options but difficult enough for me to manage and impacting on quality of life. A very frustrating position to be in!

[Spanielmadlady in reply to Pxs75]

Surely if it impacts on your daily life it warrents trialling other treatments at a lower dose and I'd be arguing that point as I dont always think they understand the impact these symptoms have on us. I hope d helps you and I'd try some b12 too.i need b12 Injections and I know the week before its due I have an energy slump and run on empty .kind regards xx

[Pxs75 in reply to Spanielmadlady]

I agree, fatigue and it’s impact is such an underrated symptom by health care professionals. Definitely going to try Vitamin D and B12 to see if it makes any difference

[Spanielmadlady in reply to Pxs75]

B12 is water soluble so you just pee out what you dont use.there is a sublingual spray if you prefer.i have my 🤞 xxx

[CecilyParsley in reply to Pxs75]

I take Fultium D twice daily on prescription and I was diagnosed with pernicious anaemia so self inject B12 and take folic acid. It definitely helps with the fatigue. Hydroxychloroquine helped tremendously. I was on it for nearly eleven years but was taken off it last year. I hope your Rheumatologist can try some other treatment for you xx

[Wendy39 in reply to CecilyParsley]

Hello CP

How are you?

What level of Vit D do you take? Is it so high, it's prescription only?

Wendy xx

[CecilyParsley in reply to Wendy39]

Hi Wendy I think it is 800 iu twice a day . It is prescription because when they tested me at St Thomas there was only a small trace of Vit D in my body. I am ok ish thanks. Recovering from yet another nasty fall where I fell onto the glass hand basin, my shoulder buckled the metal shelf above and my hand got trapped in the radiator. I then fell back onto the toilet. I could not feel my feet and just had zero balance. Thank God my hubby came running and I am so so fortunate the glass basin did not smash or my injuries would have been worse. I had to have a three day break from the treadmill then I overdid it and my loose knee cap swelled up so I have had to reduce my time and speed but I am still trying. How are you doing? I read about your ds DNA question and mine was positive when first diagnosed, then was weakly positive for years now it is negative which is why yet again my diagnosis is being questioned. Xx

[LalSD]

I think we all use both, as part of our Lupus treatment as we dont have enough Vit D in our body, in particular early onset of Lupus diagnosis. Hydroxychloroquine regulates our immune system and prevents Lupus flares and Vit D eases fatigue. And I still use Vit D, occasionally as my body permits. Hydroxychloroquine might differ based on the brand you use, Zentiva brand in the UK (for most patients) has little or no side effects ( please check this with your doctor, it worked best for us). If you live outside of UK, I used the medication under the name 'Plaqunil', this might be worth discussing with your doctor? I would try to change the brand of Hydroxychloroquine if you have to use the medication. Vitamin D definetly will make a difference. Please use the a prescription Vit D, sometimes it is more effective. The one I took from my chemist increased my flares and gave me so much grief and pain for whatever reason. Hope this helps, Lale x

[Djlr in reply to LalSD]

I agree with everyone that if we are able to take Hydroxychloroquine, it helps greatly with joint pain for me it was after the 1st 4 months to totally get into my system.

And getting our Vitamin D level up help us to fight off viruses- my pharmacist said even better than taking Vitamin C to fight the Flu Virus, but both are good. If we aren’t fighting off viruses then our energy will be stronger.

I did the Vit D2 75000 weekly for about one year, and then to 2000 Vitamin D3 capsules. My level went up immediately but I did even better on the D3 capsules over-the-counter.

Recently, a Doctor told me that we need the Prescribed High Dose for 6 Weeks to get the Vit D level stable and then we can use the daily capsules of 2000 over-the-counter to hold steady.

We are all a little bit different, so we respond differently to different combinations of All medicines & Supplements. It is trial & error and can change throughout the years for each of us as our bodies might build up resistance or become more “sensitive to drugs”.

[cowhide]

Vitamin D isn't a 'treatment' or a drug substitute. Everyone needs vitamin D but some people are deficient, usually because they either don't get enough sunlight (most Vit D is made by the body on exposure to sunlight) or because an autoimmune disease such as lupus interferes with the metabolism.

Therefore if deficient, supplements should be taken. However, you should ask for a blood test first. If you are deficient - I was, when first diagnosed with autoimmune disease - then 'over the counter' low level Vit D is not likely to be enough to restore your levels to normal. I was given a prescription for high dose Vit D for 2 months and now buy a 'normal dose' tablet, in my case I am recommended to take 2000 iu per day.

[bookish]

Please get your vit D and B12 checked properly before you supplement (esp the B12 as that will really skew your results). You may find all vits and minerals are low as autoimmunity tends to mess with absorption. I generally use sprays, sublinguals, liquids and oils to ease absorption difficulties. I use K2 and magnesium as well as D3 (to help with absorption and the calcium issue). Whilst I appreciate that it doesn't help everyone, eating a really clean, healthy diet with as little that is inflammatory (to me) as possible made a huge impact. I don't have Lupus, but other AIs. I used an autoimmune (eliminate and carefully reintroduce) diet and am no longer eating gluten or dairy as they were obviously long-term triggers for me. Best wishes

[Pxs75 in reply to bookish]

Thanks, it is my rheumatologist who has recommended the vitamins. I definitely need to look at my diet tho. I’m a comfort eater especially when I’m tired so need to address this issue too

[bookish in reply to Pxs75]

How good to hear that vitamins are being recommended! The diet is worth a try and anything that you can do to get processed/additives down and veg (and fruit) up has to be good. I was a bread addict and loved dairy but luckily got really big, flashing light, blindingly obvious 'that wasn't doing you any good' reactions when I stopped, so would be a complete idiot to start again. Shame it took so long to find out, but hey! Just try to do a little bit at a time - stress management is hugely important too so you don't want to be beating yourself up for not having the perfect diet/exercise routine/all the answers. You are doing the best you can for now, and will do a bit more when you're ready. That is what I try to tell myself anyway! Best of luck

[Mya12king]

Hi,

Yes. I was diagnosed 18 years ago and have taken Vitamin D tablets ever since diagnosis. I find it helps greatly especially with the fatigue and tiredness. My nails and hair also showed big improvements as did my joints overtime. I didn't like the calcium supplements and decided to do that through diet which worked.

Also have your thyroid checked as this can affect your mood etc especially if underactive as mine was.

[Jolevans]

Hi, I take vitamin D to try and help with joint pain after stopping Hydroxychloroquine due to macular degeneration. Doesn’t appear to help so now on low dose prednisone all the time as I don’t want to take immunosuppressant.

Pain and fatigue all controlled on Steroids but now have the problem of long term use.

I find it so frustrating weighing up having to get through life as normal as possible v side effects of using drugs in the long term.

[Pxs75 in reply to Jolevans]

Thanks Jolevans, I had to stop hydroxychloroquine due to severe itch so no chance to retry it and now left feeling in limbo. My fatigue is very difficult to manage as I work full time as a specialist nurse and have a busy family life, but my symptoms r not seen as severe enough to warrant other treatment x

[Djlr in reply to Pxs75]

As mentioned in earlier responses, different versions of Hydroxychloroquine may work for you and not have side effects, especially name brand plaquenil.

It is worth a try if they have not tried it for you.

Also, Benlysta is for Mild people with lupus and it helps control the flares, but does not stop them. Nothing I know truly stops them- listening to our bodies and Resting when it shouts to Slow Down💜 is the best remedy like when you have the Flu - your body needs rest to help prevent flares or recover from a Flu.

[Jolevans in reply to Pxs75]

Who do you see?

I would have thought if fatigue is affecting your life then it should be seen as bad enough for treatment.

[Pxs75 in reply to Jolevans]

So I was seen by rheumatology just before lockdown and not diagnosed. Got terrible rash on face/arms during lockdown and had telephone consultation, got diagnosis and started on hydroxychloroquine which I was allergic to. Not been seen face to face since Feb but that is the reality of healthcare at the moment. I’m not seeing my patients face to face either.

[Jolevans]

It is difficult with lockdown but The reason why I asked is I’ve found Addenbrookes have been amazing even posting out new meds to try and keeping in contact regularly. Before that I was seeing professor Hughes at the Lupus clinic in London who were also amazing. My local hospital Rheumatology department were not much help!

You need to shop around a bit to find a department who specializes in Lupus you will find them a bit more sympathetic. Can be a bit of a trek but I find it’s worth it.

Good luck.

[Djlr in reply to Jolevans]

Absolutely-

We shop doctors till we find one that really listens to us and works to help ease “our” symptoms. We are all different 💜

Ask other lupus patients who is working great for them in your area, research online their reviews and their areas of studies, interests and their “specialties” in Rheumatology.

We have to be very involved in order to “understand our own bodies” to be able to share our specific symptoms as they vary throughout the body💜

This chat room is a great place to share what is working for each other on this journey and ask questions.

[miccika1]

If you are low on vit D it should help. But if your vit d is normal I don't see how it would help. Im a bit flummoxed that your doc went from hydroxychloroquine to vit D only. There are plenty of other options for lupus if the fatigue is indeed coming from lupus

[Meg52]

I take vit D every day. When Initially tested for Vit D I was found to be very deficient In it and had to have a High course of It twice a week for about eight weeks. I noticed an improvement in nails, hair and fatigue levels. When the course finished I was told to carry on taking vit D every day. Try taking it every day and hopefully you will notice a difference xx

Meg 😊

[nanleighh]

I take it because I have low vitamin D which is a common occurrence in lupus. Before I was diagnosed seven years to be exact and I was suffering awful fatigue And joint pain, I was told the only thing that was abnormal on my labs was vitamin D. I’m pretty sure I had lupus at that point to it just wasn’t showing up in my labs. Take care good luck in your journey. Nan