RA, the disease that keeps giving!

Hello everyone, I've not posted on here before, so please forgive the long post! This week I've been diagnosed as. Vitamin D deficient, rather high blood pressure and now, I've a deep seated infection along the scar line from a recent carpal tunnel decompression. Because of a recent chest infection I've not been able to have my biologic drug, Infliximab, and now because of the infection in my hand it's been cancelled for a third time! I can barely move & in so much pain from my joints! Sorry for the very long preamble.

Wishing you all well

17 Replies

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  • Welcome to this group but sorry to hear you are having so many problems currently. I hope that means things will only get better!

    Vit D seems very much in the news at present, but I can't help wondering if it is all a bit over-hyped. I can accept that people who don't get out, or who have to wear clothes that shut out the sun, who have lots of pigment in their skin become deficient in these northern latitudes, but surely us pinkos are adapted for it?

    I've had my levels done (keen GP) and I was borderline, so I'm supposed to take extra Vit D. I would rather go to Spain or somewhere else sunny. Can't we have that as a prescription instead????

  • It's really more than a fad. Patients with AI are very often vit. D defficient and really need supplementation. Vit. D has shown to have several protective qualities in perticular with infections and viruses. Research also has shown that the older you get the harder it is for your body to produce vit. D with the help of sunlight and on top of this the meds of RA patients most often force you to stay away from the sun.

  • I actually spent a few weeks in Florida this summer visiting my brother, was in the sun every day, & no, I didn't use sun block, so nobody was more surprised than me with this diagnosis! It's just been a rough week.

    I like your idea of a script for Spain!

  • Unfortunately the sun is seldom enough in a chronic inflammatory AI disease. To get your levels up to a clinicly effective level you need to supplement.

  • Why not, I gave that to myself many years ago so now my RA a d I get along with each other quite well. I live here in Spain most of the time and suffer less from the RA.

  • I'm also low on vit D, been hospital today and have been given some 20,000 . I was taking 1,000 and was told they are useless need to attack it aggressively. My appointment was for cholestral and have to have a MRI scan to see if the pain in my legs is due to PsA or cholestral . He is doing nothing untill he has the answers. Vit D will or should help with the pain levels.

    Hope you get sorted. XXXX

    Chris

  • Being low on Vit D is very common in northern counties like the UK, especially in winter. It is an important vitamin so worth making an effort to get your levels up. A half hour walk outside every day without sunblock should make a big difference.

  • I had my vitamin d level taken, I had a nice total of 28 (25 is deficient, 75 is where they like you to be). I was put on 3000 vitamin d, but then went down with this horridious disease and put on steroids. So now I have ad-cal, which puts me at about 50. Had to come off and had a 3 month supply of a higher level vitamin d. It all surprised me, I sit at the front of the bus with the window open all year, wearing short sleeve shirt and a sun hat and sun glasses (but still don't get vitamin d).

    Jacqui

  • Did you remember to take k2 with the vit. D? To get 6000iu of vit.D you need to be in the sun for 20-30min without sun factor with 30% of your body uncovered. If you just sit in the sun with your face and hands you need 1,5h to get the same effect. What is also interesting is that the vit.D you get when in the sun is water solubale where as supplements need oil. The vit.D from the sun is used better by your body. An interesting study of Vit.defficiancy in different parts of the world came to a surprising conclusion. Vit.D defficiency was found even in the parts of the world where you had a lot of sun, like southern France. The reasons thought to be the abundent use of sunscreen but also it turned out that with age the ability to produce vit.D diminishes with age. An other intersesting fact was that colored people that are living in Europe are often defficient because their color protects them too much.

  • The worse thing is, I have low vitamin D but have a sun damage patch on my face. I only take ad-cal, they monitor my levels every 3 or 4 months (or rather I get the Dr to request it).

    Jacqui

  • Without the K2 you are not metabolizing the D3 effectively. There is no K2 in adcal and I do not know how strong it is. It seems the D3 is there to support the calcium absorption. You really need to ask your doc about a stronger D3 and combine it with Vit. K2. This is the way to get your D3 levels up😊 Good luck!

  • If you are taking Vit D make sure it is Vit D3. New to me is that D3 protects you from colds rather than Vit C!!!

  • Can't give you advice on vitamins. Can just send you a big hug and hope you will get better soon, so you can restart the meds. Never lose hope. All the very best.

  • When I was diagnosed Vit D deficient my Rheumy recimmended

    DLUX 3000 D daily Oral spray. ......even told me I could buy it on Amazon....

    (£6 post free)...cheaper than health food stores...I couldn't find it in regular pharmacies.

    Seemed to do the trick....my next test took it up to the normal range.

  • Have your doc prescribe, that way you get it in a pharmacy and also sufficiently strong!

  • I never see my GP...by the time I got an appoinment (3 weeks last time I tried) I'd have forgotten what I wanted to see her for!

  • Hi Glynis. Welcome to this forum, hope you find it helpful. Have you been offered a steroid jab to tied you over till you can go back on Inflimamab. I take Calceos, calcium and Vit d3, when I was on Prolia I was told to take two a day. Now back on alendronate acid and still take 2, to be reviewed in Jan. I also buy Vit k2 not cheap. Can't go in the sun without sunscreen due to small skin cancers. I hope you get back on track soon. Take care X

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