Hi
Following my visit to my Rhumatologist last week, I have received my blood test results. I am apparently lacking in vitamin D & my count is only 25 & it should be nealy 100. Had I not broken my wrist would not have found out as my bone density scan said that my Osteoporosis has now changed to Osteopenia, my Risidronate was stopped at my previous visit & so now I have to get Vitamin D supplements. I did not get my blood levels checked for my lupus even though I am going through flair up.
Just had long consultation over two days, apparently all lupus patients are low on Vit D. I have been on Vitamin D for a couple of years and I am still low.
Hi I was diagnosed last May and have been on vit d right from start x
I for a number of years I struggled taking Calci chews & drinks before I was put on Risidronate, but because I had been on 10 years my Consultant took me off them last October, he claimed that it was dangerous to take any longer than 10 years. I was originally put on because I was diagnosed with Osteoporosis in spine & hips 20 years ago. I had also lost a of weight & I had previously gone down to 4st 12lb's because I was sick all the time, that was the start of my lupus.
My vit d levels dropped some time ago. When I saw my rheumatologist I told her about the problems that had flared up...shortness of breath, no energy and dull muscle aches. I was sruggling to get upstairs. She sent off the usual blood tests plus one for vit d, she knew straight away what the problem was
Once confirmed I had to go to hosp once a month for 4 months for doses of vit d capsules by mouth..after that was prescribed Adcal which I'll have to take for the rest of my life. I feel so much better for them 
I have osteoarthritis, mild SLE and other probs that are autoimmune related
Most patients with an autoimmune disorder are low on vit D. Whether it is cause or effect isn't known.
You should be on special high-dose supplements until you achieve a decent level - 60,000 IU either as a single dose per week or 3x20,000 IU.
It is actually appalling that you have been on a bone-protection medication without your vit D and calcium levels being monitored. These drugs can only work if your vit D and calcium levels are OK and they remove both in order to build bone. Obviously they need to be looked at!
AdCal is maybe OK once you are replete with vit D - but even then is probably nowhere near enough to maintain the levels if you are one of the many people with problems making it from sun. And when you think about it- that is everybody with lupus just about isn't it? Using even Factor 8 sunscreen reduces the amount you can make in the skin by over 90%.
Even healthy people here in northern Italy where I live and who are outside all year are told to take 2,000 IU/day, not the 800 IU AdCal provides.
Hi Cal66,
We would recommend that you discuss any requirements for vitamin D supplementation that you may need with your GP or consultant. Lupus is different in everybody and some people may need more than others. It is important to take an amount suitable for you. Levels of vitamin D which are too high can cause toxicity potentially resulting in hypercalcemia.
Such a sage PMRpro, once again. Agree with it all
I asked a gp about vit D level last year after reading comments on here. Veerrry reluctantly did blood test. Nearly fell off her chair at result. I had high dose for a month now one capsule a month. My brain fog went after this incidently which was a huge relief. Dont know if everyone feels same.
Previously, my annual Rheumy visit got told to buy them over counter if concerned!!
Do you like visitors huh? Huh? Only joking, green with envy of your location.
Continue with your kind responces of wisdom please.
You now have guru status with co co and twitchy
XOXO
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Hi Val, just saw your post and wanted to let you know that you need to be really careful with supplementing your vitamin D because if you take too high an amount, it can be dangerous.
You need to have a consultation with your GP or your Rheumatologist about it so they can work out exactly the right amount for you personally. You can have a low vitamin D or a deficiency and often if its borderline acceptable to low, they may advise not to supplement and may suggest 30 minutes exposure of outdoor light in short and T shirt. Don't forget, you don't need to visually see the sun, it still counts even if a cloudy day 👍.
Its tricky to work out because you mention 25 as being low. The acceptable level in the blood will be in a range of:
20 nanograms/Milli litres litres to 50 by/mL
BMI also needs to be taken into account. Often someone with a BMI of 30+ will present with low levels.
Some foods you may want to consider eating more of, are:
Fish, fish oil, fortified milk, cheese and egg yolks.
I believe that there maybe a connection with SLE and low vitamin D because some SLE patients have kidneys affected by the disease. The problem with vitamin D production and absorption, is that it is converted and metabolized in the kidneys, to produce its useful firm of VitD. People with compromised immune systems and kidney function, will have a real difficulty with converting UV into useable vitamin D, so it is very important to get your kidneys checked out. You could literally supplement big amounts of VitD but your body may not be able to absorb it.
Hope this helps, Claire 👍
"People with compromised immune systems and kidney function, will have a real difficulty with converting UV into useable vitamin D, so it is very important to get your kidneys checked out. "
In which case telling the patient to sit in the sun for 1/2 an hour won't help either - will it!
I agree PMRpro. I also take it as read that if we are investigating things, we are also being careful as this disease causes this or triggers that. My point really was that I, like others do NOT have an interested, engaged GP in the practice who will be invested in calibrating subtle differences in level. If I got a begrudged blood test thru my gut feeling and indesputable evidence arrived in DOCTOR SPEAK this evidence scored and my health improved through my efforts not theirs.
I have another round with a supposed senior GP today. I expect the interested GP above would have referred claire immediately rather than being unable to find salient details on the e referral site when he practices less than 30 miles down the road from said hospital and consultant. Ever helpful, though, I have researched carefully and will present this GP with the full name, credentials and computer address of the Professor and hope to encourage him - to try again! We shall see.
I am, of course, delighted to hear that some of my fellow Lupus sufferers have interested doctors who do their best to understand and help their patients. Sadly, I think there are an awful lot more like me, who have to do personal research in order to find out what can be done to help ourselves. We do not do this lightly, believe me, but the alternative is to sit passively and fade away without a fight for basic rights, like health care.
As a salient bit of advice folks. Before you ask for an e referral, do investigate the accepted name of specialist and the Hospital. EG. I want referral to Manchester Royal Infirmary but it is not listed as such as the GP showed, shrug, give up. It is under Central Manchester Foundation Trust, nothing like you would think. I shall be ssssoooo helpful and give this in to ensure he knows this for any other patient who needs referral to MRI so he can find the listing and send the e referral.
Sorry, long winded but I do appreciate advice to be careful which is always relevant, but some of us come from a deep dark region rather than a bright enlightened place and have to beg for a hearing and to be believed and to have symptoms taken seriously.
Much love all 🌹
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On my own "home forum" we meet this all the time - and we have a fairly simple disease you'd think! We have our favourite doctors who do have their heads screwed on right but they must have queues out the door and most people don't live sort of south west-ish of London or in Leeds...
Someone posted today about being told off for gathering info from "forums - they aren't always reliable..." Does the gentleman in question also dismiss anything from ArthritisUK I wonder?
Yes, shrug, give up...
Not on my watch if I can help it!
Thanks Claire, when my GP recieves his letter from the hospital, he will then give me prescription for the vit D. Unfortunately, I am Lactose intolerant & I am unable to eat many types of foods as I also have a Hiatus Hernia. I get terrible reflux because of my hernia & this often causes me to be sick sometimes unexpectedly. When this happens I can only eat plain food like chicken breast, jacket or boiled potatoes. When I have eat like that it lowers my vitamin intake according to the dietician. I also do have problems with my kidneys, but I never thought about them being connected to the intake of vitamins.
Thanks for your advice.
Cal 66 you have my best wishes and hope that your problems can be solved. Someone hete may have the answer to your complex question. After all Lupus can affect any, or all systems in our bodies. Perhaps there is a special preparation you can take.
Lots of love
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Thank you everyone for all your advice that you have given me. I did not realise how common that anyone with lupus have or other autoimmune illnesses suffer from lack of vitamin D as much.
I am waiting for GP to recieves his copy of the letter from my Rhumatologist & then they said that they will write me a prescriptiion,
As for brain fog I had just put down lupus, I all ways say "that thing or you know what I mean",because I didn't know about the connection.
I think that I may have had a blood test for vitamin D only once that would have been over 20 years ago, so thanks again for all your advice & I hope that you all have great Easter & good night as I'm keep falling asleep.
Hi Cal66.
We recently published an article about brain fog that you might be interested in reading. It's got some information and tips on how to manage it. You can read the article here: lupusuk.org.uk/coping-with-...
George
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