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SarcInfo.com: Frequently-Asked-Questions

  1. I have read that you guys have a new treatment which is sending chronic sarcoidosis into remission. But I can't find a simple summary anywhere, only complicated details
      You can find a copy at http://SarcInfo.com/phase1.pdf
      It is in Adobe Acrobat format, and you can dowload a free reader from http://www.adobe.com/products/acrobat/readstep2.html
  2. If I take 40mg of Benicar every 6-8 hours, my Doctor is worried I am going to have such a low blood pressure I will be passed out on the floor
    Here is a plot of the drop in blood pressure versus the daily dosage of Benicar. You can see that there is a very rapid change at low dosages. There is very little extra decrease in BP as the dosage increases from the starting 10mg every 8 hours (=30mg daily). But the curve only becomes very close to a complete blockade (horizontal line) at dosages around 120-160mg daily. Benicar "is safe and well tolerated at doses up to 160 mg/day". The FDA Package Insert instructs:"Dosage must be individualized."
     
    You might also notice that the total drop in BP, even at 160mg, is not all that large. It is less than achieved by the more effective BP drugs (like the Beta Blockers).
     
    Actually, in Sarc patients, the BP varies considerably (much more than this) as the 1,25-D surges. That is why I advocate patients monitor their change in BP whenever their symptoms change.
  3. I live in [Alaska][Antartica][Greenland] where there is very little sunshine. Do I have to stay indoors too?
    Sarc patients' skin may generate 20 times the amount of D metabolites as healthy folks, since the bacteria live in the keratinocytes (cells of the skin) and make them hyper-active. Too much Vit D can even be manufactured in twilight or at extreme latitudes. Every sarc patient should assume that daylight will detrimentally affect them. The only way to tell if you are unaffected by your daily activities is to measure your D metabolites. The hyper-sensitivity slowly disappears as the antibiotics kill the bacteria.
  4. I know that Sarcoidosis patients have skins which are hypersensitized to sunlight. Does the use of UV Sunblock creams reduce the amount of Vitamin D we get while out-of-doors?
    No, UV creams have no effect whatsoever on our body's production of Vitamin-D metabolites. Neither does lightweight clothing. Even if we totally try to cover all exposed skin, the light reflecting from the ground into our face and necks creates too much Vitamin D, over the course of an hour or so. Studies have shown that exposed skin produces most of its Vit D within 10-20 minutes, and a sunbathing body will get a dose of about 10,000 IU in that short time. Here is a study from Australia and a study from Spain, both showing that there is no difference between the D levels of folks whether they use UV block creams or don't use them. The only way to really effectively cut your D input is to stay indoors during daylight hours
  5. If you kill all the bugs, why might ARBs be useful afterwards? Because from what I understand, ARBs disrupt the inflammation cycle and if there is no more inflammation to disrupt, why continue the therapy?
    The issue here is whether all the bugs can be killed. At this point it seems certain they can. Additionally, I now have a pretty good idea of what type of bugs cause the hyper-inflammation of sarc, and what their mechanism of action actually is, and so I would expect that eventually there would be no need for ARBs. That is one of the reasons I have started to muse about a "cure" rather than just talk about remission - as more and more folks recover with such innocuous antibiotics (as the tetracyclines) it seems pretty clear that ALL the bugs can really be killed....
  6. Because of your genetic sarc predisposition, will you have to take ARBs for the rest of your life?
    No. The mechanism of action of the bugs is to actually create the hyper-immune response (see my BMJ letter explaining T-Lymphopenia). As more of us get closer to remission (or cure, or whatever) the sensitivity to everything drops. No more huge welts from cat scratches. No more allergies from pollen. It is the bugs that are creating the hyper-sensitivity, and as they are killed off the body is returning to health....
  7. Why does the immune system of sarc patient seems to be in a loop and cannot get rid of these bugs?
    These CWD bacteria have learned to live inside the actual macrophages (phagocytes) of the immune system. These CWD bacteria fail to be destroyed by the very cells (phagocytes) which are supposed to kill them, as they have learnt to live in the caustic 'cytokine soup' inside a granuloma. The control of 1,25-D (which regulates the "hospitality" your immune system extends to these bugs) is the area of genetic predisposition to sarcodiosis, IMO.
  8. Does it mean that every time the body will be in presence of these bugs, it will respond in the same fashion. i.e produce granulomas that take years to clear out?
    If the bugs infect you again, or if you allow the remaining ones to get a grip again, the hypersensitivity will return.
  9. Why do some people have normal ACE levels and still have sarc. Is there an explanation for that?
    ACE is an intermediate biochemical. It is a precursor to Angiotensin II. It has no direct action in the inflammatory cycle other than to cause the release of quantities of Angiotensin II. I guess that is why it is relatively insignificant in some folks, depends on your Renin Angiotensin System activity level. This is explained in our description of sarc biochemistry at "The Angiotensin Hypothesis" in our "New Treatments Emerge.." paper.
  10. Why are you guys so critical of Prednisone?
    Prednisone is an excellent drug whenever the immune system needs to be "turned off" for a short period of time (days or weeks). But when used for more than a few weeks at a time it causes the following disease processes:
    1. Doses as small as 20mg for long periods or 60mg for a month can cause destruction of the hips and spine (and other joints) with a disease called 'Avascular Necrosis'
    2. It can cause Diabetes, which, if poorly treated, may become permanent
    3. Steroids are a major cause of osteoporosis
    4. It usually makes the sarcoid inflammation worse by allowing the sarcoid CWD bacteria to freely multiply in the immunosuppressed patient. When patients try to stop using steroids, the inflammation is worse than when they started.

Prepared by Trevor G Marshall, PhD
Last Revised: 26 August 2003


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