Vitamin D deficiency?

[Thereseh]

I had a hospital appointment last week, only 2 months since rituximab infusion and my hands are so painful. The nurse gave me a steroid injection, which usually kicks in after a few days, but only a slight improvement so far, the pain is still pretty bad. She did send me for a blood test for my vitamin D levels though - anyone else had experience of this, and can it affect other medication? I'm a bit worried because I feel like I'm running out of options now.

[JuneRose]

Vitamin d levels are sometimes low with RA and can make you ache I take d3 with k all year round except if I’m on holiday or when it’s hot sunny weather.

[weathervane]

Hi Thereseh , I don’t know if this is your first course of rituximab but it can take at least 12 weeks before you see improvement and you might see more after 2nd course . I also take vit d and i find it is easy to take . I find the rheumy Nurse very helpful if i have any worries or questions. I hope you start to feel better soon, best wishes 🌸

[juneann]

Hi, Is Vit K necessary with Vit D. I tossed the idea around in my head of trying Vit D even though I don't normally dabble with all that kind of stuff, but it seems once you start with one thing it then needs something else to work with it.

[FionaHerts]

I found I was severely deficient in Vit D. I have been treated by Rheumatology at the hospital for 11 years and had never been checked. After reading about some of the symptoms deficiency can lead to, thought it would be worth checking so I asked the GP to add it to a blood test.

I needed high dose 5000IU D3 on prescription for 3 months and now take 1000IU a day to keep my levels up. I've been taking it for nearly a year now and feel so much better. More energy, not so achy and despite coming off Methotrexate, I've not had a bad flare in all that time. It might be a coincidence, I don't know, but it's worth getting checked. My Rheumatologist said it could have contributed to my symptoms. Seems crazy they are not routinely checking patients for Vit D levels.

Best wishes

Fiona

[Suey4]

I have just been diagnosed with RA and afer my first blood test I was told I have a vitamin D deficiency. I now take D3 1000IU every day, can't say I've noticed any changes yet but it's early days.

Good luck

Sue

[Rubyroo1]

This is interesting, I have only just had my bloods checked for RA, which have come back positive, so now waiting to see a Rheumatologist for the first time. Previous to this last blood test, I was diagnosed with a Vit D deficiency was taking 5 x 1000IU tablets for the initial 2 weeks and then down to 3 x 1000IU until I had taken 90 tablets. I was feeling a lot better in myself but still had a swollen thumb hence return visits to the GP. I have now stopped taking them as advised to do so by the GP - but whilst waiting for this first appointment, I may revert to taking some daily through the year, despite the sun being out at the mo, and upping it in the winter. Interesting to see what others do, is a Vit D deficiency linked to RA ?

[Riedenise]

I've been diagnosed 5 1/2 years never been tested for VitD before. 3 months ago went to my gp as the fatigue eas so bad asked her to check vitD, B12, she also. Checked my hormone levels and confirmed I'm going through the menopause, which was pretty obvious to me. Anyway I'm severely deficient in vitD only 17, healthy person should be around 50. I've been taking 2500ui vit D, and calcium with vit D3 daily. Having another blood test in 5 weeks to see how my levels are now.

Question: if it's known along with RA that are vitD levels can be low why aren't we tested? Surely it's a no brainer. If we're all suffering with pain and fatigue then shouldn't we be tested as matter of fact.

I don't think it will affect your other meds. I'm on mtx, Sulfasalazine, folic acid, Rituximab, Bisopropol ( for my heart).

I think we should all be tested. Rie

[Suey4]

I am newly diagnosed and was put on Methotrexate, since then I had so far had two blood and today my GP has put me on a vitamin D supplement. It's called Colecalciferol 20,000 iu, I have to take 1 tablet twice a week.

I also asked for a print out of my last 2 blood test so I can keep an eye on things too.

[Thereseh]

Thanks all for the help and support, blood test came back showing my vit D was extremely low (14). Have now got to take a prescribed 'heavy duty' supplement twice a week for 8 weeks, and an otc supplement after that. Feeling a lot better, but now I don't know if it the rituximab taking effect, the steroid injection I had at the hospital, or my new supercharged vit D!!