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Suggest Treatment For Symptoms Of Vasculitis All Over Body
Question: Everyone is interested but can not figure out what it wrong. I have what looks like vasculitis all over my body, extreme fatigue but insomnia, malar rash that comes and goes, retinal hemmorhage and occasional ptosis in the left eye, vision getting worse in left eye, severe headaches left side throbs like a hammer is hitting it, night sweats that soak the bed, mouth and nose ulcers, sore hips, elbows, and shoulders. Left arm and leg goes numb often, when standing up I feel like I'm going to faint, constant ringing in ears, lesion on the liver, chest pain and tightness, abnormal ekg, only urinating two to three times a day but drink a lot. Sometimes foamy urine that I have to force. I can't drink alcohol anymore just one drink and I have extreme chest and arm pain, hangovers are 24 hours of vomiting bile. Hair loss and toe nail loss. When I shower in hot water I feel needle pricks all over. I have a low grade fever more often than not and my resting heart rate is 100. Hep tests negative, Ana negative but positive a few years ago, hiv test negative, Lyme test negative, ct wi contrast of chest clear but found liver lesions, ct of head with no contrast that did not show anything. I have problems waking up in the morning. I am having memory loss as well and occasional shaking of the eyes with eyes dilated more often than not. I feel awful all the time and some doctors say it may be lupus but bloodwork says it is not so I am not getting proper treatment. What else could this be?
Brief Answer:
Likely lupus
Detailed Answer:
Thank you for asking
i read your question and i understand your concern. Your history fits the the ACR (American college of rheumatology ) criteria and more than 4 symptoms of your this multiorgan manifestation is pointing towards lupus. You should be put on lupus management protocol and you will respond for sure. No mor ebothering with any further tests are needed. Sometimes lupus present atypically with multi organ involvement.
Your labs are pointing towards lupus the anti double stranded DNA antibodies and ANA are both in favour of Lupus. I cant see anti XXXXXXX antibodies though, they should have been done too. Also your sjogren antibodies are pointing towards lupus as lupus give higher levels of normal sjogren antibodies. Also anti histones, anti SSA, Anti SSB, Anti cardiolipin , anti ribosomal P antibodies and anti RNP antibodies are advised.
You have been just on prednisone and that too very small dosage of 20 mg when it should be up to 60 mg at least in a day. Along with these other anti lupus agents should be administered like
Biologic DMARDs (disease-modifying antirheumatic drugs): Belimumab, rituximab, IV immune globulin
Nonbiologic DMARDS: Cyclophosphamide, methotrexate, azathioprine, mycophenolate, cyclosporine
Nonsteroidal anti-inflammatory drugs (NSAIDS; eg, ibuprofen, naproxen, diclofenac)
Corticosteroids (eg, methylprednisolone, prednisone)
Antimalarials (eg, hydroxychloroquine)
Let me help you with some preventive measures. avoid triggers for flare. avoid ultraviolet light and sun exposure to minimize worsening of symptoms from photosensitivity. Diet modification should be based on the disease activity. A balanced diet is important, and if you have hyperlipidemia, for example, you should be on a low-fat diet. Many patients with SLE have low levels of vitamin D just like you because of less sun exposure; therefore, you should take vitamin D supplements. Exercise is important for you to avoid rapid muscle loss, bone demineralization, and fatigue. Smoking should also be avoided.
Antimalarial therapy (hydroxychloroquine) has been shown to prevent disease flares and to decrease mortality. In contrast, high rates of sulfa allergy and anecdotal reports of disease flares have led to avoidance of sulfa-based medications in patients with SLE.
Contraception and family planning are important considerations given the risks of disease flare with exogenous estrogens and pregnancy and with the teratogenic risks of some SLE drugs. Estrogen therapies have typically been avoided to prevent disease flares; progesterone-only contraception is more often considered.However, studies have suggested that oral estrogen-containing contraceptives may not be associated with disease flares or thrombosis risk in patients with mild lupus without antiphospholipid antibodies.
You will also neds Preventive measures which are necessary to minimize the risks of steroid-induced osteoporosis and accelerated atherosclerotic disease. The XXXXXXX College of Rheumatology (ACR) Guidelines for the prevention of glucocorticoid-induced osteoporosis suggest the use of traditional measures (eg, calcium, vitamin D) and the consideration of prophylactic bisphosphonate therapy.
The ACR Quality of Care statement recommends annual cardiovascular disease risk assessment which youshould have regularly. some researchers suggest that the cardiovascular risk for SLE is similar to that for diabetes mellitus. The 10-year coronary event rate is 13-15% in patients with active SLE, which is comparable to the 10-year event rate of 18.8% in patients with known coronary artery disease. XXXXXXX XXXXXXX patients with SLE may be particularly vulnerable to premature cardiovascular disease and related death.
Angiotensin-converting enzyme (ACE) inhibitors and/or angiotensin receptor blockers may be useful in patients with renal disease. Aggressive blood pressure and lipid goals may help prevent CAD or renal disease progression
I am sure you will respond to the medications and lupus will be managed. After that you will just need maintenance therapy with hydroxychloroquine.
I hope it helps. take good care of yourself and don't forget to close the discussion please.
Regards
Khan
Likely lupus
Detailed Answer:
Thank you for asking
i read your question and i understand your concern. Your history fits the the ACR (American college of rheumatology ) criteria and more than 4 symptoms of your this multiorgan manifestation is pointing towards lupus. You should be put on lupus management protocol and you will respond for sure. No mor ebothering with any further tests are needed. Sometimes lupus present atypically with multi organ involvement.
Your labs are pointing towards lupus the anti double stranded DNA antibodies and ANA are both in favour of Lupus. I cant see anti XXXXXXX antibodies though, they should have been done too. Also your sjogren antibodies are pointing towards lupus as lupus give higher levels of normal sjogren antibodies. Also anti histones, anti SSA, Anti SSB, Anti cardiolipin , anti ribosomal P antibodies and anti RNP antibodies are advised.
You have been just on prednisone and that too very small dosage of 20 mg when it should be up to 60 mg at least in a day. Along with these other anti lupus agents should be administered like
Biologic DMARDs (disease-modifying antirheumatic drugs): Belimumab, rituximab, IV immune globulin
Nonbiologic DMARDS: Cyclophosphamide, methotrexate, azathioprine, mycophenolate, cyclosporine
Nonsteroidal anti-inflammatory drugs (NSAIDS; eg, ibuprofen, naproxen, diclofenac)
Corticosteroids (eg, methylprednisolone, prednisone)
Antimalarials (eg, hydroxychloroquine)
Let me help you with some preventive measures. avoid triggers for flare. avoid ultraviolet light and sun exposure to minimize worsening of symptoms from photosensitivity. Diet modification should be based on the disease activity. A balanced diet is important, and if you have hyperlipidemia, for example, you should be on a low-fat diet. Many patients with SLE have low levels of vitamin D just like you because of less sun exposure; therefore, you should take vitamin D supplements. Exercise is important for you to avoid rapid muscle loss, bone demineralization, and fatigue. Smoking should also be avoided.
Antimalarial therapy (hydroxychloroquine) has been shown to prevent disease flares and to decrease mortality. In contrast, high rates of sulfa allergy and anecdotal reports of disease flares have led to avoidance of sulfa-based medications in patients with SLE.
Contraception and family planning are important considerations given the risks of disease flare with exogenous estrogens and pregnancy and with the teratogenic risks of some SLE drugs. Estrogen therapies have typically been avoided to prevent disease flares; progesterone-only contraception is more often considered.However, studies have suggested that oral estrogen-containing contraceptives may not be associated with disease flares or thrombosis risk in patients with mild lupus without antiphospholipid antibodies.
You will also neds Preventive measures which are necessary to minimize the risks of steroid-induced osteoporosis and accelerated atherosclerotic disease. The XXXXXXX College of Rheumatology (ACR) Guidelines for the prevention of glucocorticoid-induced osteoporosis suggest the use of traditional measures (eg, calcium, vitamin D) and the consideration of prophylactic bisphosphonate therapy.
The ACR Quality of Care statement recommends annual cardiovascular disease risk assessment which youshould have regularly. some researchers suggest that the cardiovascular risk for SLE is similar to that for diabetes mellitus. The 10-year coronary event rate is 13-15% in patients with active SLE, which is comparable to the 10-year event rate of 18.8% in patients with known coronary artery disease. XXXXXXX XXXXXXX patients with SLE may be particularly vulnerable to premature cardiovascular disease and related death.
Angiotensin-converting enzyme (ACE) inhibitors and/or angiotensin receptor blockers may be useful in patients with renal disease. Aggressive blood pressure and lipid goals may help prevent CAD or renal disease progression
I am sure you will respond to the medications and lupus will be managed. After that you will just need maintenance therapy with hydroxychloroquine.
I hope it helps. take good care of yourself and don't forget to close the discussion please.
Regards
Khan
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Above answer was peer-reviewed by :
Dr. Chakravarthy Mazumdar
Answered by
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