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Jessie,
Do you have a diagnosis of Sarcoidosis? If not, do you have a diagnosis of any other illness? such as Rheumatoid Arthritis, diabetes?
This website deals primarily wit
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i have just sign on to this information net and l'am glad l did because l have had lot of the problems that everyone else has mention and l would like to know why my doctor keeps giving me water pills
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J.B.
As you already know, prednisone is only going to make you worse. If you already have avascular necrosis, you should not take ANY prednisone. There are no safe levels, especially for
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Can anything be done to help a person who has avascular necrosis of the humeral bone ( shoulder) from taking too much predinsone?
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Hi Trevor and Meg,
I have recently had some bloods taken and need you opinion on the results. My Calcium was measured accidentally twice over two days by two different doctors. They were
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I recently had an apt with my pulmonologist because I have been having myalgias and worsening asthma symptoms. I had requested he did a Vit D panel on me, but he stated this was not a standard lab tes
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Hannah,
The specific paper which explains things for your Doc is at this link. It says:
"The two principal hormones o
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Thanks for the input Meg, I will start reading as much as I can. My bone specialist said years ago that it looked like I had osteo for a long time before I was diagnosed, and my new lung specialist i
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Hannah,
Welcome to SarcInfo. Your history of Irritable Bowel Syndrome and osteoporsis make me very suspicious that you've had sarcoidosis for a long time. Sarcoidosis produces high levels
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The doctors are currently looking into a diagnosis of Sarcoid for me. I had a chest x-ray recently to show immense scaring of my lungs and nodules formed. I went in thinking I had asthma due to shor
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I think its both Pippit, the grant is renewable on an annually basis. It's called the Baurenschmidt Patient Care Assistance Grant at Johns Hopkins Sarcoid Clinic.
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Hi Devon,
Are you currently involved in a research project through the clinic you go to? Is it a medication clinical trial or something where they observe the disease?
P
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Thanks Pippit and Meg, and I'll follow-up with you both on my progress with medical assistance. My prelimary application and requested info was submitted the second week of this month, and I haven't
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Hi Devon,
Magnesium is a popular supplement right now and I don't believe it is contraindicated for use by sarcoidosis patients at the recommended dosages-ask you doctor how much you shou
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Devon,
When you say medical assistance do you mean Medicaid? or is it through an employer or the Service? Are you having to pay all your medical costs out-of-pocket? If so, that must
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No, Meg I'm not saying that my doctor won't do the D-metabolites tests because of blood work, and stress test. It's because of my pending medical assistance status that I can't get the additional tes
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Hi Devon,
Why is it that you started taking the Magnesium supplement?
Are you saying that your doctor will not do the D-metabolites tests unless you have other blood work and
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I've just recently started to take a magnesium supplement 250mg. Should I continue or discontinue use? I have pulmonary Sarcoidosis, and it has effected my sinuses, skin, heart, eyes, and joints in
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Hi,
I've been reading this site since being disagnosed with sarcoid in March of this year, but have not found anything specific to my situation. It started with a high calcium reading in
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Tammy,
In the July/August issue of Sarcoidosis Networking, there is a list of symptoms of vitamin D toxicity. According to Sidney, Wolfe, MD, et al, in their publication Best Pills, W
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Tammy,
This article from the National Kidney Foundation points out the importance of choice of beverages in the ri
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Hello,
Thank you Belinda for the quick answer. The pain has subsided mostly, but I can still feel it. I have increased my H2o, and hope that will help. I did not realize I needed to incr
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Tammy,
It is important for sarcoidosis patients to drink plenty of water, so make sure you are doing that.
The American Academy of Family Physicians has this
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Hello,
I'm having a weird symptom....I have pain usually in my RUQ, But this pain is now lower. More waist level, around the side, just above the top of my hip bone. It is sharp and continual. I
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Donna,
Even the FDA says SARC patients should limit their calcium intake.
It is a fairy tale that Calcium will help build bones of someone with an immune disease. A tragic fairy tal
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I have tried to eliminate all foods with the Vit. D added and cut out the sunlight as best I can. I found a Calcium/Magnesium vitamin with no vit. D. About 2 hours after I took 1 pill, I was
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My serum "corrected calcium" in Oct 2002 was said to be "normal". I have not had urine tested.
Diana
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hi i have had high calcium levels since i was diagnosed with sarc in 1975 i am now on purinol as i suffer with kidney stones due to to the calcium levels i hope this helps with you investigation
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Hi Bonnie,
What criteteria did the doctors use to determine that your sarcoidosis is inactive? Have you checked the list of
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My diagnosis of Sarcoidosis came after I had seisures and stopped breathing. I had been very ill and vomitting. The calcium level in my blood was very high, I don't remember the number. My doc sai
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Trevor,
When you said
"Despite what Doc will try and tell you, I don't think there is any way of rebuilding the bone until you normalize your 1,25-D down to the mid/high
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Christian,
No studies have been done.
My gut feeling (pardon the pun) would be that as long as your 1,25-D was around normal that your bone-remodelling should be about normal too. I have
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Trevor,
I need some advice concerning calcium intake. It is apparent that my calcium metabolism is in some way affected. A test revealed that my bone density is a bit low (osteopenia);
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Lynn,
The key thing is whether the supplement has any vitamin D in it, or added to it. If you look at this page on Sango Coral Calcium, for exam
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I have a question about coral calcium. My husband was diagnosed with gout a few years ago, then about a year ago what he thought was a severe gout attack turned out they diagnosed him with sarcoid.
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Wally,
Of all the powerful and expensive drugs you have been given, my experience is that the only one likely to improve your long term quality-of-life is the Septra. It is an antibiotic which i
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Wally,
Welcome to sarcinfo.com. I am sorry you and your wife had such a scary experience. I hope someone has already explained to you why you became hypercalcemic and steps to take to he
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Hypercalcemia was my first problem. I was a (I thought) perfectly healthy man who exercised. In early October and over a weeks time I started getting sluggish and it continued to get worse until my w
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I have never been told I have any problems with Calcium and I have recently given Docs at NIH a 24hr urine sample.
Although when I was first dx almost 2 years ago, I was told that being
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If I could just GET the doc to take my bloody D-metabolite tests ...
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