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I suffer from Pemphigus Vulgaris> Does anyone suffer with this condition? I have been suffering for just over 2 years and am currently on heavy medication. I tried taking high does of Vitamin D recently and started off with 30,000ius and then gradually went up to 70,000ius daily for approx. 2 months and have since found out that my blood levels are off the chart(536nmo/l ) so I stopped taking it until it comes down. Could anyone advise on the right dose as I have read that Vitamin D helps the immune system, or could even cure such conditions. I'm so desperate to come off the medication as it is affecting my health . It's bad enough with the condition. The Consultant wants me to go on Rituximab as it's the last resort as the other meds didn't work, but I am reluctant to try the new drug . I have started slowly weaning off the steroids under my Consultant's care but am afraid that the symptoms will get worse like they did before when I reduced the dose. I just want to take a healthier approach rather than stay on these awful drugs. So Please I would appreciate anyone who has the same condition, or is aware of to give me some sound advise. Look forward to your reply.. Many thanks.

Asked by  Gem on February 12, 2018

  •  Gem on

    See title

    Answered by  Gem on
  •  IAW on

    I “googled” the condition and it says it is an autoimmune disease. That tells me it is probably caused by a lack of Vitamin D.
    Even if your levels were high at 536nmol/l(214ng/ml)more importantly did you notice any change in your condition at that point???
    In theory if you took the 70,000iu for two months and it gave you the level of 536nmol/l, then cutting that in at least 1/2 would put you closer to 268nmol/l and 250nmol/l equals a USA “upper end” of 100ng/ml which is perfectly safe. So you can do 30,000iu. Eventually if you get better, you may not need to take that high of an amount. You may even be able to do our recommended 5000iu a day. Only time will tell. So in other words it may take high amounts of Vitamin D to get better but you may not need that high of an amount forever. If you would feel better taking a lower amount than try 15-20,0000iu for now.
    We believe in maintaining a healthy level of 50ng/ml which equals your 125nmol/l.
    I thought this was a good success story at https://www.mdjunction.com/forums/pemphigus-discussions/general-support/3514980-my-pemphigus-recovery. I suppose there can be different degrees as to how each person is affected or how much of them is affected.
    I highly recommend reading http://www.vitamindcouncil.org/about-vitamin-d/vitamin-d-and-other-vitamins-and-minerals/. If you do not already take a multi vitamin, this may be the time to add one.
    If you have more questions, just ask!

    Answered by  IAW on
    •  Gem on

      At the time when I was on 70,000ius of Vitamin D3 I had stopped my evening meds on my own accord which I shouldn’t have as I thought the D3 would just be enough. I felt ok up to that point, but then started feeling unwell with the symptoms back. There are degrees, and am lucky in a way as I have the ulcers in the wet areas without being too graphic, than on face, exposed areas. Having said that, when I was first diagnosed, my back was covered with lesions, but with the medication holding it together and contained. I am back on track with the evening med and my blood levels are down to 135mno/l since a coupe of weeks ago. I’m sorry but my sister had to remind me that my levels were high 3 months ago. I have a supply of 10,000ius D3 and K2. They are both MicroLingual that absorbs quicker in your system? I may start on the 10,000ius for now and gradually increase the dose to 30,000ius. Thank you for the links and your support. My sister told me about your website and encouraged me to contact you and am pleased I did as you are very helpful. I will be in touch again soon. Many thanks.

      Answered by  Gem on

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