Mine goes up and down it’s 5 now and I’m on the 50,000units a week …I was up to 19 last month and my pain level was much better . I eat a lot of cheese and yougart ectra …but it still stays low. … I always feel great when my vit d level gets to 20 , even if it’s below normal …it goes up and down …I even have been sitting in the sun , but my body dosent absorb the vit d anymore , I have PSA but I have the autoimmune component more than the arthritis part …thank you …you are all amazing 
God only knows. No one has ever measured it.
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Oh I get mine done every 6 weeks …it should be part of your treatment , vit d is very important to your bones and it also helps with pain management and depression …my rheumatologist put me on vit D right away …then she checked my levels and put me on the 50,000 units a week …it’s standard treatment for Psoratic Arthritis… my rheumatologist told me that it is normal for patients with autoimmune disease to run low …please have your rheumatologist check yours …I’m on iv remicaid and methotraxate but I get my labs every 6 weeks before my infusion she also does CBC , sed rate , vit d level , electrolytes , bmp , liver profile and CPk ( heart enzyme) …my arthritis is more autoimmune than arthritis…so is my uncle he is in bad shape with his kidneys …I’m 55 and trying to make it to retirement…please have your rheumatologist check your vit d level , it will help you immensely
@ohmeowzer - You’ve said a few times that, “my arthritis is more autoimmune than arthritis.” I’m thinking that by this you mean that you don’t have a lot of joint pain and inflammation, but that you have systemic inflammation affecting your organs. Did I interpret that correctly?
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Hi Poo, low vitamin D is strongly associated with spontaneous brittle fracture (i.e. your pelvis). I’m actually quite shocked your doc didn’t test you / prescribe it immediately after that happened.
It’s pretty hard to get too high a level of vitamin D if you are taking as recommended, I’d seriously consider getting yourself some asap (available like most vitamins over the counter), then get it checked next doctors visit (even if you are just at the GP for something unrelated).
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Yes I don’t have a lot of joint damage but I have some like my middle sausage like finger ( lol the middle one comes in handy lol ) and my toenails fall off , knees and hips sore but no damage …the dr is more concerned about my immune system, my organs ,I have an uncle with Psoratic arthritis and his organs have been attacked the poor man had 2 heart attacks a bipass and now developed kidney cancer it’s so sad because he was such a vibrant man. He is now also blind …he’s not dying from the arthritis but from the effects …he has such a great attitude and he’s on peritoneal dialysis every night. But he tells me God has a plan for all of us so let’s just keep plugging along …he was working one day and had a heart attack the next , he drove from New York to see us 2 summers before the kidney cancer stopping at Leadville Colorado to look up genaology …it’s sad and so I have the same difficulty with my immune system …but I get pain and flare ups in my knee(just one) and spontaneous fractures like the one in my ankle ,but they are watching my labs closely because my immune system is very poor …and we are trying to prevent any joint damage ,I hope I didn’t babble to much …
Ooh I replied below sorry wrong place …you can read it below …I’ll get use to the format soon I promise
Yes great advice. Please go get some and have your doc test you …it has a lot of advantages…and helps with pain , which we need all the help we can get
Hi Jen, I was put on calcium and vit D after my fracture but I’ve no idea what my levels are. Still waiting for the bone density scan but the appointment isn’t till 26 Sept… I tried to go private for it but with the amount of hoops to go through with that it would bring me up to nearly that date so I decided to just wait it out. However I am getting all my blood tests results for my physio as she wants to see them so I’ll find out soon. I seem to have landed myself with physio who’s speciality is inflammatory arthritis - somewhere either the planets or the gods were looking kindly on me when she landed in my life!
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Whew! Glad you are on Vit D already! Before you go for your bone scan / get the results, it may be worthwhile looking up Prolia or denosumab (brand and generic name).
I didn’t start on it as I was very young, and my osteopenia was thought to be primarily steroid related, but my mum is on it (osteoporosis in the family, had catastrophic fractures almost 2 years ago).
I believe it’s an immunomodulatory therapy. Mum didn’t have autoimmune conditions, so I never looked at interactions / effect on autoimmune disease, but it’s probably worth looking, as it may (perhaps should) be offered to you.
Sorry for the hijack!
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Last month it was 40, I like it at 70, I take 5,000 ui a day, been supplimenting it since 2008.
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Getting a vit d test in the UK on the NHS can be difficult … it’s costly! But you can order a spot test kit from Birmingham City Hospital Pathology Department for under £30. Report is emailed through to you within days of sending your test back and it’s helpful if you do then need to follow up with your docs. Here is the link for anyone interested www.vitamindtest.org.uk/
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Thanks Jules. That explains why no one has done that for me yet.
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I get mine tested periodically, and it floats between 32-40. It was almost 0 a few years back. That’s when I started 9 months of the 50,000 units/week. I’ve since been told to take at least 2000 units every day for the rest of my life, and that for my levels to have gotten so low, it HAD to be a malabsorption problem in the gut. Thus, getting enough sunshine still likely wouldn’t raise it enough.
My situation is confusing though (and may not even be part of the PsA picture) because my mom and I BOTH have autoimmune diseases (mine is PsA and her’s is Rheumatoid Arthritis), but we also both have a cow’s milk protein intolerance. One thought is we both may have damaged our intestines by cheating and consuming dairy products our entire life, thus causing the inability to properly absorb nutrients. You would think one would figure this out early and just avoid dairy, but actual milk and cheese were the only things that made me feel sick, so I kept consuming small amounts of milk for years in ice cream, breads, baked goods, etc. I stopped dairy a few years ago and noticed a HUGE improvement in my joint pain levels and stomach problems. She refuses though, as she’s 80 and just wants to enjoy life. Luckily we’ve both attained normal levels of Vit D finally too.
I still worry though. My 10 yr old son was diagnosed with a vitamin D deficiency in March, plus he also has the same cow’s milk protein intolerance. So far, his Drs think his deficiency is from 8 yrs of taking an acid-blocking medication for severe acid reflux…we’re hoping now that he’s off all medications, his vitamin D levels will optimize. Time will only tell on that one----I just cross my fingers he doesn’t develop an auto-immune disease too.
I also get a bone density scan every 3 yrs or so (thankfully I have great, easy insurance). I was told 20 yrs of lifting weights has resulted in wonderful bone density,even with the vitamin d deficiency and malabsorption. My Calcium levels have always been fine, and my bones just look awesome. I count my blessings, as my mom did develop osteoporosis and had numerous fractures.
All in all, I’m intrigued to follow this thread and see what others have to say.
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I asked for a vitamin D test once and my rheumy just said ‘well, do you get a fair bit of sunshine every summer?’ I do and I liked the simplicity of his reply. It’s not a very rational approach but as he got just about everything to do with me & my disease right I tend to trust that my vitamin D levels are indeed okay.
I can see it may be more complex for some though. At an early rheumy appointment I spoke to someone whose partner was somewhere in the hospital having an x-ray or whatever. She said that it was her partner’s first appointment and that her vitamin D levels were so very low the rheumy thought it might be the sole cause of her joint problems and related symptoms. I’ve long accepted that vitamin D is very important for a whole host of reasons and since then I’ve upped my intake of oily fish and green leafy veg in addition to soaking up the sun (cautiously I might add, I don’t burn easily).
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It is worth being cautious about assuming that your vitamin D levels are fine because you get plenty of sun.
My low D occurred at the end of an Australian summer where I was on the boat every weekend, in the sun 8 hours a day on weekends and around an hour in the afternoon on weekdays.
I also don’t burn easily, and have a bit of a theory that for me, there is some error either in conversion of Sunlight to vitamin D, or some problem in the transport system. I also seem to need help with my melatonin, which is also a sunlight triggered process.
As there is some research that shows people with psoriasis more commonly have a vitamin D deficiency than those who don’t, it may not be best to assume production and transport is the same for people with psoriasis as for those without. This deficiency crops up in other autoimmune disorders such as MS too.
As of yet, the researchers haven’t established the nature of the link, but I’d encourage anyone who has autoimmune disease with access to a test to consider getting it done, because the link is definitely there, even if we are not yet sure why.
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Agree with you Jen. Just saying it may not always be cause for concern. Actually I may get mine tested using the link Jules provides given the autoimmune weirdness of it all.
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Well I really want to know what my bone density is and my Vit D levels given my spontaneous fractures in my pelvis this summer but the NHS is utterly deaf on either of those despite me being post menupausal.
It’s an utterly idiotic way frankly. Simply idiotic.
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I feel for you guys. The NHS, whilst not being perfect, seemed to have a sensible approach to most things - but this is pretty unfathomable. Particularly in a high-latitude country!
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The NHS Choices website says that everyone in the UK over the age of five years is advised to consider taking a daily supplement containing 10 micrograms of vitamin D during the winter months and that certain groups (they don’t include any long-term health conditions) should take more.
Something that is increasingly obvious to me is that cost now influences absolutely everything within the NHS. Although testing for vitamin D deficiency and prescribing it would not appear to be particularly costly, the argument that small costs may prevent larger ones down the line does not prevail for all sorts of reasons.
I reckon we users of the NHS need to understand and to some extent accept this 'cos it’s almost certainly not going to get any better. I consciously ration my use of NHS services, even by making phone calls as quick as possible etc. But nobody’s going to take that into account when my need is that bit greater so that’s when I have to be my own advocate, get assertive or pay for private treatment or testing.
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