New Diagnosis: Hi all! I've been lurking on the... - LUPUS UK

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New Diagnosis

carotopgal profile image
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Hi all! I've been lurking on the forum for a few months, but hadn't posted because I didn't have a diagnosis yet. I went to the rheumy and got all of my tests back this week. I have all the symptoms of Lupus (my sister has diagnosed Lupus) and was in a horrible flare from March to the end of May, but couldn't get into the rheumy until mid-June (I live in the US). Anyway, by the time I got into see him, I looked and pretty much felt back to normal (butterfly rash was gone; I could walk without limping). He wasn't convinced it was anything more than osteoarthritis (knee pain) and tendonitis (elbow pain), but ran all the autoimmune tests and did x-rays of my hands since I told him about them hurting so badly. All of the blood tests came back negative for Lupus, RA, etc. But the hand x-rays came back positive for RA damage. So I was given the diagnosis of Inflammatory Arthritis and he started me on 200 mg of hydroxychloro twice a day. Since Inflammatory Arthritis is the just the umbrella name for all of the autoimmune diseases, does this mean that I have something but they just don't know what and that I'm seronegative? I was just wondering if anyone else had this happen? Thanks for listening!

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Danielle2419 profile image
Danielle2419

Just a thought but I was exactly like you the onset of the symptoms would creep up and creep away when they felt like it one day I would be in bed next week I would wake fresh as a daisy all in all I got diagnosed with lupus I too had knee pain shoulder pain elbows like golf balls hip and back pain hands and fingers swelled up and hurt like hell I would always go for a second opinion cause one of the most significant symptoms of lupus is as we no the butterfly rash across the face and if you said you had that I would look for another opinion good luck and welcome to this site hope you get all the help you fully need

When my hands were bad over winter (scleroderma) and my appointment wasn't until spring, I took photos which my dr found very helpful :)

Chapter profile image
Chapter

Yes, Inflamatory Arthritis, does seem to be an umbrella of sorts. The treatment of Hydroxychloroquine would be the same even with positive blood results so you are covered until they narrow it down. My understanding of Lupus arthritis is that it is painful yes, but does not cause disfigurements - please correct me if I am wrong on this anybody. If you are showing some disfigurement in your hands then perhaps it is more arthritis. Hope all goes well, now you are not just a "Lurker" you can keep us informed as to how you are doing.

mstr profile image
mstr

Hi, there I have UCTD lupus symptoms with inflammatory arthritis. I you go on the NRAS health unlocked site and put it inflammatory arthritis you will be able to see what others have posted with this. You can also just go on the NRAS website (national rheumatoid arthritis). I intend to ask more about this at my next appt as to me the symptoms are just the same as RA now....my GP said last week my fingers are taking on the swan neck shape, my hip is inflammed (both) but right side worse and neck stiff, shoulders sore can't squeeze my hands legs stiff etc. From my understanding the inflamatory arthritis can be from aklosing spondylitis (spine problems), rheumatoid arthritis or lupus. It kind of narrows it down and it was a question I planned to ask my consultant last time but I got the registrar instead who said in a letter I was positive for the squeeze test (pain when they try to squeeze your hands). So next time I see my consultant I plan to ask where does she think the inflammatory arthritis is coming from lupus/ra? I also think it would be wise to take x rays and then perhaps they could be more specific so again I am going to ask my GP about this. I think we have to sometimes be a little assertive to get anywhere. I hope the above site helps you xx

carotopgal profile image
carotopgal

Thanks everyone! And MSTR, I will go look that up. :-)

anthroprof profile image
anthroprof

All of your symptoms (RA and Chronic Bone Pain ) are caused by extreme vitamin D deficiency. The medication will only dumb-down your immune system response to avoid symptoms and it will cause your defences to be lowered. Vitamin D is a hormone that modulates the immune system.

The Vitamin D Council recommends a daily supplement of 5000 IU/day if you are healthy and a blood serum level of between 50 and 80 ng/ml. You will need more daily to reach 50-80 ng/ml if you are already sick.

If you are unaware of the research on vitamin D please visit my free website, leonardogreenfield.com and read the article on Vitamin D and health. It explains what vitamin D does and why autoimmune diseases as well as most of your other problems are caused by vitamin D deficiency. Here is a partial listing of the diseases caused by vitamin D deficiency.

TABLE 1. PARTIAL LISTING OF DISEASES AND OTHER HEALTH PROBLEMS ASSOCIATED WITH LOW BLOOD LEVELS OF VITAMIN D

Alzheimer’s Disease, Asthma and Allergies, Atherosclerosis, Autism and other Spectrum Disorders , Blood clots, Breast Cancer, Cervical Cancer, Chronic Bone Pain, Chronic Fatigue Syndrome, Colitis, Colon Cancer, Cognitive Impairment, Crohn’s Disease, Dementia, Diminished Immune Response to Tuberculosis, Influenza, and other viral, bacterial, and fungal infections, Early Childhood Wheezing Illnesses, Endometrial Cancer, Epilepsy, Epithelioma, Fibromyalgia, Glioblastoma, Graves Disease and Tinnitus, Heart Attacks, High Blood Pressure, Hip Fractures, Hypertension, Juvenile Diabetes, Leukemias, Lupus, Macular Degeneration, Melanoma, Mesothelioma, Metabolic Syndrome, Multiple Sclerosis, Non-Hodgkin’s Lymphoma, Non-Small Stage Lung Cancer, Obesity, Osteoarthitis of the Knee, Osteomalacia, Osteoporosis, Ovarian Cancer, Pancreatic Cancer, Parkinson’s Disease, Pre-Eclampsia, Prostate Cancer, Psoriasis, Rectal Cancer, Reduced Fertility in Males and Females, Reticulosarcoma, Rheumatoid Arthritis, Rickets, Seasonal Affect Disorder, Sleep Apnea and Narcolepsy, Strokes, Type II Diabetes.

Your extreme deficiency usually causes co-morbidity of the diseases known to be caused by vitamin D deficiency. In addition, the co-morbidity occurs sequentially as some of the diseases take longer to develop than others.

You can also visit and explore the free non-profit Vitamin D Council website. This is the international clearinghouse for the world's leading vtiamin D researchers and clinicians.

here is the definitive article on vitamin D and autoimmune diseases. Your doctor should be aware of this article.

Journal of Investigative Medicine:

August 2011 - Volume 59 - Issue 6 - pp 881-886

Vitamin D and the Immune System

Aranow, Cynthia MD

From the Feinstein Institute for Medical Research, Manhasset, NY.

Received March 2, 2011.

Accepted for publication March 21, 2011.

Reprints: Cynthia Aranow, MD, Feinstein Institute for Medical Research, 350 Community Drive, Manhasset, NY 11030. E-mail: caranow@nshs.edu.

Supported by National Institutes of Health Grant AI0563626 and in part by a grant from the National Center for Research Resources (R13 RR023236).

carotopgal profile image
carotopgal in reply to anthroprof

Thank you anthroprof! I am sadly already acutely aware of vitamin D deficiency. I had gastric bypass in 2005 and before I knew it I had rickets!! Who these days gets rickets?? But the malabsorption along with my being so fair and not getting much sun did it. So I've been on 10,000 iu a day since then. That will keep me about in the middle range of normal. I do have my levels checked every year to make sure I'm still doing ok. The information you provided is really great! Thank you again!

jazzsue profile image
jazzsue

Hi, I saw your post and i started having all kinds of syptoms. The dr ran blood tests, xrays, mri. Finally i had a bad flre up and markers where there for RA, Sjhogrens. During the last flare up, tests came back with the diagnosis of Rhupus,.

Do any of you know anything about this AI Syndrome?

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