Hi, has anyone been diagnosed with the above?
I've been on steroids ( this is my last week) and now have a D3 deficiency. GP will be putting me on a supplement.
Has anyone experienced this? I've had a huge surge in bone and muscle pain in the last few weeks.
Any advice would be welcomed.
Thanks
Hi Foodman,
I’m sorry you are going through this. I know I had a vitamin D deficency.
Ask your doctor about liquid Vit D.
It seems ironic that we are allergic to the sun, yet, in more need of it’s vitamin than others🤦🏻♀️ (we can’t win. 🌞)
I know! So frustrating.
Thanks, I'll ask about that.
Did you have symptoms with your deficiency?
It is so frustrating, you’re right!
Idk if I had symptoms. So much has been going on. Have I experienced hair loss, fatigue, muscle and bone ache; YES! Vitamin D deficiency? UCTD? One and the same? Idk.
What have your symptoms been?
I have, twice. I really didn’t know at the time whether it had contributed to my problems. I was tested and found to be deficient at my very first Rheumy appointment. I understand it can contribute to joint pains etc. I thought it was simply because I’ve always avoided the sun as someone who burns easily.
I had loading doses and now take a supplement every day
Hi, I have been diagnosed with very low vit D and had to have 3 months loading dose and am now on a maintenance dose. Recently retested the vit D and still on the same maintenance dose.
Yes looking back I did have a symptom which was pain close to the top of the inner thighs especially if walking up stairs or uphill, the pain stopped a few months after starting the vit D.
I later found out that where I was getting the pains is one of the places for stress fractures so thank my lucky stars that the Dr ran the blood test for vit D.
X
Hi food man! Vit D def is common in lupus/CTD. Vit D is also necessary to keep immune system in check. Apparently reduces relapse in lymphomas. It’s a new area of study that’s gaining traction.
My vit D was normal prior to my first major lupus flare and then tanked even before starting steroids. I’ve read a few papers that vit D deficiency coincides with lupus flares. It could be steroids or it could be something about lupus. Who knows?
Took 50000 units twice a week for 12 weeks and that brought it from 20 to 45 which is just acceptable. I take 5000 units daily now. I had so many symptoms before that I couldn’t tell you if it was from deficiency.
Yes, I have. It's common and suspected to be connected with autoimmune problems. You'll have to take the supplements for a long time for it to become in the normal range too. It caused aching muscles for me.
Hi yes I was found to have a severe Vit D deficiency. I have been on two Fultium D capsules daily for 8 years now. It adds to the bone pain and fatigue but I found it impossible to differentiate which of my conditions was causing what if you know what I mean. I hope that you get prescribed medication that will help you.
Yes, I've been on a maintenance dose (currently 800 units) for over 20 years, with the occasional extra load if levels drop too low. I only found out when it showed up in a heap of diagnostic blood tests and wasn't aware of any particular symptoms. Keeping out of the sun is probably a big factor for me.
I have SLE and have been on vit D supplements for years, not really sure if I feel any better or not, to be honest, but we have to take them to avoid osteoporosis! x
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