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Vitamin D levels off post sculptra

  • anon395756
  • 1 year ago

Why are so many of our Vitamin D levelsĀ  off post Sculptra?

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And my believe if that is the end, it can still be there depending on the person for years after. Can any one explain?? Haven't heard any one before been able to.
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Does not make sense when Dr say Sculptra is gone in two years, in the mean time on Sculptras web site is pictures showing how you look in two years that's the end result. So if it was gone in two years wouldn't you look like before you had it done?
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I am 5 and a half years post botched sculptra horror. My ACE levels had been in the 100s, my 125 Vitamin D had been abnormally high in the 90s, my monocytes in the differential had been around 16%. These abnormal results persisted for several years consistent with a condition called cutaneous sarcoidosis (listed as one of the many adverse events related to sculptra). I also had sculptra showing up in a biopsy 3 years post injection that was done during one of the many surgeries I have had to endure because of the misuse of Sculptra Feb 2008. In September 2012 for the very first time I had high but normal high 125 Vitamin D 70s, high but normal high monocytes in the differential13%, and my ACE while still very high was down to 91. I have been on a very strict anti-inflammatory grain free diet. The only sugar I can have is from small amounts of fresh berries and honey. I bake with almond or other nut flours and try to get exercise. While I did recently have a pretty bad flare of a granuloma that is still in my lower eyelid area, I have been working my hardest to do everything in my health to restore my systemic health and immune system that has been so ruined by Sculptra. I have had to endure hospitalizations, surgeries, disfigurement and constant facial pain not to mention the demoralizing humiliation. I am very happy to report that my most recent blood tests from the rheumatologist who has been helping me with this chronic foreign body immune response and keeping me on plaquinil (it helps) has reported that my ACE level, while still abnormally hight is down to 73!! My monocytes are down to a normal 9! This is the nearest to normal blood tests I have had in 5 and a half years. Maybe (Lord please) this evil sculptra is finally breaking down to a load that my body can handle better then it has to date.
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Is your levels better? Had a lot of blood work but they cant see anything. All my stress hormones is in normal range.
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My levels have been abnormal for a few years. The ACE is still abnormally high but is the lowest it has been since this began. granulomas make ACE and it is a good blood disease marker. normal people have levels around 40 or less. If and of itself it does not mean anything but taken with all other parts of the sculptra foreign body immune dysregulation it is a very good marker for the granuloma load your body is dealing with.
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How much was injected? Do you know?
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My estrogen was five times higher then normal, under my worst time.
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I am surprised what you say about the estrogen. I have been telling the doctors that estrogen and estrogen foods have a lot to do with this sculptra. I thought it was just me. I am in menopause, however my ovaries are still releasing a lot of hormones. There is a definite correlation. Funny how te clinical trials were all male. The other thing that is huge is that all of the symptoms i have with my immune system (and i believe i am not alone) are the same as if i was hiv or aids positive. I do not think that the sponsor of the clinical trial diffrentiated the symptoms as pertaining to the sculptra because the hiv/aids have those symptoms anyways. We all need to work together, spread the word so we get help and stop the medical 'code of silence'.
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Hi Gry! I do take hormone replacement but they were surprised my estrogen was sky high when I was as worse, but happy because estrogen helps the skin and it did my skin is almost back to normal and my hormones plus the stress hormones are normal now thank god. Don't know about the other test you guys talking about. My dr that have monitoring me telling me now I most have a thyroid problem and auto immune disease now, went throw two weeks of test and it came back in normal range. I am on and off doxycycline but don't know if it helps have no pain My more and it seam to gone down this month am on my 3 year.
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I don't think it producing collagen never believed that and this should never been out to the public. Want to ask you do you know or heard to take any support for the immune system or will that just be worse?
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I know this product has ruined many people's skin texture. I been lucky to have a successful product line that saved my skin the doctors are amazed about. I give seminars and teach people about skin and staying young I am determent to warn people. I feel for everyone that gone throw bad side effects it just kills me:(((
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How soon after your sculptra did you have problems?
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Usually takes two to three month on me before he'll started. They call that a delayed reaction, it hits the top around six month. Most people that have any reaction stopes around 9 month but not me. First now it looks ok not perfect.
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First year couldn't eat or drink vine I went down to 105 pound. It's like being a prisoner in your own body. One thing that helped to tell people hot wash cloth on the face it was like popping a ballon, so I spend a lot of time in bed with warm towels on my face. Never use cold.
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I found out because sculptra has messed me up real bad. Other then unsightly granulomas and chronic inflammation for 5 years now, I have been told this is a systemic immune system foreign body response. A very smart Rheumatologist found this response to be a form of sarcoidosis caused by the sculptra particles and the immune response to them. Patients with sarcoidosis are typically exposed to some kind of offending agent via lungs and most sarcoidosis patients have lung fibrosis and involvement due to typical routes of exposure. Something like Berylium is known to cause sarcoidosis. The lungs and other parts of the body are effected. With Sculptra sarcoidosis and systemic immune system dysregulation the disease markers are the same. Granulomas and granulomatous inflammation (resulting in sclerosis and fibrosis) produce excessive levels of Angiotensive converting enzyme (ACE) and the active form of vitamin D called 125 Vitamin D. This is a special 125 Vitamin D test not the one typically performed. In my case both my ACE and my 125 Vitamin D are abnormally high and my regular vitamin D test is low normal. Sculptra is really very dangerous.
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Stay with more natural things that can be removed like Restylane or fat inj from your own body. I feel stupid didn't do my background check and being from Europe I believed in France.
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I didn't realize this had been a common complaint. How did you realize your vitamin D levels were off?

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Blood tests. Others harmed will have the same findings. This does not mean as I have found that adding vitamin D3 will help.
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& I was told by mu rheumy MD that granulomas produce ACE (mine is abnormally high) and 125 Vit D, reguular vit D low because the 125 vit is high (mine also abnormally high). The sculptra causes a granulomatous disease state. Like. Sarcoidosis, wegners but the sculptra version.
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What is your ACE result? What is considered high. I just tested and it was 72. This was a good day.
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Mine is now down to the mid 80s, at last check. At one point it was in the low 100s. According to references: Normal results for ACE = Normal ranges for this test are laboratory-specific but can range from 8-57 U/ml for patients over 20 years of age. Typically, adults have ACE levels less than 40 micrograms/L. This test is useful to monitor the activity of the granulomatous inflammatory foreign body response. ACE itself, at these abnormal levels are not dangerous but do indicate something is going on. You should be seeing a Rheumatologist who knows about Sarcoidosis (that does not include lung, some specialists just deal with lung, which is the typical presentation for sarcoidosis) and Scleroderma because they know the most about the foreign body immune response and the disease it causes. The random Rheumy may not be able to help, just like the random Plastic Surgeon or derm who injected this disease into you. That person did not know enough about the device (s)he was implanting into your body and that now can not be removed. You may also need a neurologist and opthamologist who is familiar with neurosarcoidosis and scleroderma issues. If you go to some of those disease specific support groups web sites they often can recommend a physician who can help. FYI my lungs are completely clear. This is all Sculptra disease. A good integrative medicine Dr. can also help you to try to manage this Sculptra disease. Good Luck. It is tough going.
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That was my phone, so to correct the typos. @Megan P, My Rheumatologist MD told me that granulomas make the 125 Vit D. The typical blood test run on most people tests for a different Vit level. The typical blood test will show low vitamin D. In my case my vitamin D was low but when the Dr ordered the special test for 125 Vit D, it is abnormally high (as in my case). Also Angiotensin Converting Enzyme ACE, is produced by granulomas and is a good blood test marker to track the progress of the condition.
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This is about other causes for abnormally high ACE. Increased ACE levels may be a sign of sarcoidosis. ACE levels will rise or fall as sarcoidosis becomes worse or improves. However, increased ACE levels may also be seen in several other disorders, including: Active histoplasmosis Alcoholic hepatitis Asbestosis Asthma Berylliosis Diabetes Emphysema Gaucher's disease Hodgkin's disease Hyperthyroidism Idiopathic pulmonary fibrosis Leprosy Lung cancer Multiple sclerosis Nephrotic syndrome Silicosis Tuberculosis
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That was wrong report. I am looking at the results now and my sept 2012 ACE was 91. That was the lowest it had been since this started.
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