Another piece of the RA jigsaw

[lily777]

I'm so grateful for early diagnosis and commencement of treatment. Two and a half years later after much reading/research and getting to know my body, losing weight and experimenting with diet plus lots of walking and swimming I am in a good place at the moment.

I just wanted to share my experience of vitamin D supplementation. Having read the importance of this vitamin to people with RA I got tested and found I was quite deficient. My GP does not believe that the science is conclusive enough to draw any conclusion as to the efficacy of supplementing the vitamin, but he relented and did prescribe. Just to add that I could buy over the counter but prefer all drugs and supplements to be under medical supervision.

I've recently returned from a holiday in 30 degree plus heat and for the first time in a long while did not suffer skin reaction (on Mtx) and was able to sunbathe (with factor 50). I understand that there has been research published recently about vitamin D as a treatment for sunburn and wondering about a connection.

[Karen77]

I know I feel much better when taking Vit D and Omega 3. I take them together. I started on 4x the daily recommended dose and after about 8 months of doing so, was tested and found to (only) be at healthy levels! I now take 2x the daily dose, to make it somewhat more affordable (and also because I didn't want to overdose). It actually never occurred to me that it could be prescribed. I wonder if my company drug benefits would cover it if it was prescribed... In the meanwhile, I try to spend at least 30 min/day outdoors without sunscreen so that my body can absorb vitamin D as nature intended. Thanks so much for sharing your experience! I do think there could be a climate factor to RA. A colleague recently confided that her daughter has JRA. She was diagnosed at age 4. The family was posted to Mexico for 3 years (they are diplomats) and the daughter went into remission and off all meds. Two months into their return to Canada, the symptoms (and meds) returned. Not scientific, but interesting nonetheless.

[lily777 in reply to Karen77]

Hi Karen are you in UK? As I'm 64 I get free NHS prescriptions, but my main reason for going that route was the medical supervision bit. I am fascinated by the intricacies of this wretched disease and how we can really listen to and partner with our bodies and the medics to ameliorate the symptoms. I can honestly say that I am fitter and healthier since diagnosis (setting aside the RA) than I believe I would have been...weight loss, diet and gut issues dealt with.

Grateful for forums like this to learn and share.

Hope all continues to go well for you.

[Karen77 in reply to lily777]

Thank you! I am in Canada.

[Simba1992]

RA patients are known to be low on vit D3. It is also quite well known that vit. D is an important player in immune function. Sunburn is an inflammation where the immunesystem is activated and where vitD is needed. There is a lot of research on the importance and benefits of Vit. D that you can google and print out for your doctor😉

[lily777 in reply to Simba1992]

Hi Simba 1992

I went armed with sufficient information in layperson' terms to have a very constructive discussion with my GP which served to increase respect on both sides....so win win. I will tell him about my experience outlined below when I next see him.

My point about vitamin D and the sun concerned the skin reaction I suffered, even with factor 50 and limited exposure since starting on mtx, which is a well documented side effect. I never had sunburn. Since supplementing the vitamin there has been no repeat of said reaction even in 30 degree heat whilst taking sensible precautions.

Another one of the normal pleasures of life I thought had gone has been reclaimed!

[Simba1992 in reply to lily777]

👍🏻I understand so well your sentiments, I could not survive without the sun😊

[Lucy11]

Hi Lily

Nice post!

Just as a side note, I live in Switzerland and the tests given by the Rheumatologists always includes Vitamin D. If you're low they give a prescription of 500 mg of Calcium and 800ie of VIT D3 daily. I would have thought it would be standard practice world wide with the knowledge that many with RA have low vit D?

I'm curious if your doctor mentioned that vitamin D can be toxic and cause a build up of calcium in the blood? Its rare but my doctor mentioned that the body regulates the amount of vitamin D by the sun and the only way to get too much is from mega doses of the supplement.

I'm not sure if over the counter supplements has a warning or if it's so rare they don't bother?

I suppose if someone gets blood tests done every 3 or 4 months to check levels it wouldn't really ever become a problem. I know you don't have to worry about that as you get yours on prescription but I think a lot of people buy their own over the counter and may be worth knowing?

Interesting observation you had regarding sunbathing and vit D while on MTX. I am often in the sun for hours on end and while I do wear 30-50 block I don't get skin issues with the sun. Is it the sun block or is it the vitamin D? Good question.

Lucy.

[Karen77 in reply to Lucy11]

Lucy, I'm so jealous! In Canada you need to request to be specifically tested for Vitamin D, it's not part of regular labwork. I think I even need to pay extra for it, though I can't remember. My Vitamin D levels were tested over a year ago, mainly because I got a new rheumatologist who was concerned about my supplementation.

[nomoreheels]

It just shows, different GP's different ideas. Mine learnt about the relationship between low Vitamin D in RD patients so has my level checked annually. It's always been fine but must add I am prescribed daily AdCal-D3. You may find this from the Vitamin D Council interesting reading vitamindcouncil.org/in-rheu...

I had read about the pilot study you mentioned & it makes sense to me because whilst living in a sunny country (& on both MTX & HCQ) I never had sun sensitivity or burned. I had put it down to being 'hardened' having lived there 6 years before being diagnosed & having a tan of some depth or another most of the year, rarely with sunscreen unless, irregularly, actually on the beach sunbathing. Also dependant on the time of year I had daily 20 or 30 mins daily top up of unprotected sun ('prescribed' by my Consultant). It does make me hopeful that the study is worthy of further investigations as it also revealed Vitamin D also activates natural skin repair genes, this could have some basis on supplementing to give natural protection to some degree, maybe being added to sunscreen is my thinking? It does bear mentioning though that the doses of Vitamin D they used in the study are higher than the daily recommendations currently. It's certainly something to follow with interest, particularly here in the UK where the opportunities for getting our natural Vitamin D is low. How often do we see holidaymakers abroad having recently arrived red as the proverbial gamba?!

I hope you enjoyed your hols & had a lovely relaxing time.