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Doctor insights on: Pots And Lupus

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I have POTS and Lupus how come I can now run 2 miles on a jog but I still get short of breath going up flights of stairs?

I have POTS and Lupus how come I can now run 2 miles on a jog but I still get short of breath going up flights of stairs?

It's your POTS: Your ability to run 2 miles suggests that SLE is not affecting your heart or lungs. POTS often presents with shortness of breath &/or palpitations, more common at the beginning of exercise. You require a more lengthly warm-up, hard to provide when going up the stairs. If this symptom is excessively bothersome, you may benefit from low to moderate dose beta blocker such as metoprolol or nadolol ...Read more

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If I decide to get pregnant again(I lost my baby at 24 weeks)will my pots & lupus relapse? I miss my baby and want to try again- had a placental abrup

Lupus and pregnancy: Pregnancy in lupus patients has risks and should be planned carefully. Lupus flares in pregnancy is common. Lupus should be controlled for 6 months prior to planning pregnancy. Pregnancy should be in a high risk perinatal unit. Lupus patients should be fu for apl due to prior fetal loss with anti coagulants if needed. Certain meds should be avoided. Baby should be fu for neonatal lupus. ...Read more

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New lifestyle-supporting my body with non-gmo food/exercise and suppliments. Are newchapter vitamins good? Wanted a non-gmo brand. *battling lupus/pots

New lifestyle-supporting my body with non-gmo food/exercise and suppliments. Are newchapter vitamins good? Wanted a non-gmo brand. *battling lupus/pots

Yes! Also...: Congratulations! I believe anyone wanting optimal health should avoid gmo's but as you are learning, it's not easy! Even most supps contain gmo's; new chapter is gmo-free ; makes quality products- for a list of others see http://www.Nongmoproject. Org/find-non-gmo/search-participating-products/? Catid=25 i also like the synergy company, not on that list.
Also, see http://bit. Ly/19xax7e re: gmo's. ...Read more

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Have lupus& POTS. Got bad respiratory virus & both the lupus & POTS flared causing me to miss multiple days of work. How 2 prevent flare from virus?

Have lupus& POTS. Got bad respiratory virus & both the lupus & POTS flared causing me to miss multiple days of work. How 2 prevent flare from virus?

The usual: Sorry to hear about your debilitating flare-ups. There are many things that can trigger a Lupus flare up. You should consult your Rheumatologist for a specific action plan. For a respiratory virus I want to emphasize prevention. Good diet, vitamins if not, exercise as tolerated, adequate restful sleep, reduce stress, hand hygiene and avoid touching your face, avoid anyone who may have a cold. ...Read more

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Have lupus & POTS. Having low blood pressures, lightheaded, nightsweats, extreme nigttime polyuria. MD ordered 24 hr urine sodium collection. Why?

Have lupus & POTS. Having low blood pressures, lightheaded, nightsweats, extreme nigttime polyuria. MD ordered 24 hr urine sodium collection. Why?

To differentiate : In prerenal failure like from dehydration sodium will be too low in the urine. In true renal failure like that can happen in Lupus you will not be able to conserve the sodium and will leak. So by this test doctors can learn a lot ...Read more

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Have lupus & POTS. Having low blood pressures, lightheaded, nightsweats, extreme nigttime polyuria. MD ordered 24 hr urine sodium collection. Why?

Have lupus & POTS. Having low blood pressures, lightheaded, nightsweats, extreme nigttime polyuria. MD ordered 24 hr urine sodium collection. Why?

POTS and sodium: Excreting less than 124 mmol per 24 hours of sodium in the urine predicts if you will respond favorably to salt supplementation. One also is advised to increase fluid intake to prevent the BP from dropping and the heart rate from rising (typically above 120 b/m) upon standing. If sodium is excreted in larger amounts chances are other therapies will be needed (B blockers, fludrocortisone etc) ...Read more

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This last 2 weeks feel so run down between p.O.T. S and lupus... I'm 27 I want to feel normal. But I don't think ill ever be "normal" again. :/?

See below: Go the lupus foundation of america's website to find a support group for lupus patients near you. I think you would find this beneficial and you would also learn how other patients cope with the disease. ...Read more

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I developed p.O.T. S and lupus post pregnancy, my BP also drops when standing, is there ever a chance of it getting better?

P.O.T. S: P.O.T. S and lupus post pregnancy needs thorough evaluation and management due to associated symptoms of dizziness, near syncope, palpitations to name a few with changes in posture. Lupus by itself needs careful evaluation and management by a rheumatologist due to its multi system involvement. With full understanding and proper management symptoms of p.O.T. S has better prognosis in younger pts. ...Read more

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I hate my life and how I have to be afraid of my medical illness's at 27. Lupus. P.O.T.S. Now maybe lung disease! Yes u can see im anxious w/ my questions but i just want to be ok for once. Just ok.

I hate my life and how I have to be afraid of my medical illness's at 27. Lupus. P.O.T.S. Now maybe lung disease! Yes u can see im anxious w/ my questions but i just want to be ok for once. Just ok.

Find a therapist: Having chronic illness can put a lot of strain on a person and cause depression and anxiety. Feeling like you are always having some medical issue is very frustrating. Talk with your doctor about a referral to a good therapist. Finding better ways to manage your stress can help you manage your illness better than well. It won't make your disease go away, but may help you feel better! ...Read more

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I have lupus and POTs. When one is doing going, I struggle with the other. It's hard to keep up with friends. How to explain? I can't make every event

I have lupus and POTs. When one is doing going, I struggle with the other. It's hard to keep up with friends. How to explain? I can't make every event

I would be candid.: I would explain how much these people mean to you but advise them that your health some times limits what you can do with them and the time that you spend together. ...Read more

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I jsut read that I shouldn't be on atenolol because I have lupus?!?!? Is this true i just started 12.5mg bid for pots

Not true: You can take atenolol. There is a common misconception that beta blockers can worsen raynauds but studies have clearly proven that this is not the case. ...Read more

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I have well-controlled lupus & also have POTS syndrome.If I sleep poorly(mostly due to nocturia)I am lightheaded most of the next day. Due to POTS?

I have well-controlled lupus & also have POTS syndrome.If I sleep poorly(mostly due to nocturia)I am lightheaded most of the next day. Due to POTS?

Monitor.: You need to be monitored to determine if the lightheadedness is related to tachycardia. If it is there is a new medicine that is available for inappropriate sinus tachycardia. It is not yet FDA approved for same except in CHF patients but could be used if clinically indicated. Why do you have nocturia? ...Read more

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Which is causing my fatigue my lupus or my pots?(postural orthostatic tachycardia syndrome) I need to find a way to decrease fatigue! I do see a rheumotolgoist and cardio. I do what im suppose to

Which is causing my fatigue my lupus or my pots?(postural orthostatic tachycardia syndrome) I need to find a way to decrease fatigue! I do see a rheumotolgoist and cardio. I do what im suppose to

Exercise!: Exercise is the magic bullet here, along with staying well hydrated and getting plenty of uninterrupted nighttime sleep. Also, make sure no other problems are playing a role such as depression or obstructive sleep apnea, two large factors causing fatigue in my patient population. Good luck! ...Read more

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Is it ok to get pregnant with sjögren's and pots and a lesion on my brain and raynauds and possibly lupus? My docs ok it but I'm afraid to try.

Is it ok to get pregnant with sjögren's and pots and a lesion on my brain and raynauds and possibly lupus? My docs ok it but I'm afraid to try.

Trust your doctors: Without knowing more specifics of history and lab results, it is impossible to even guess. I will say that you should trust the advice of the doctors who know you best. ...Read more

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Fat malabsorption- what are the possible causes- we know I do not have gastro disease (crohns, divert, celiec, pancreatitus, or gall bladder prob, no surgery/ new diagnosed lupus. And I have pots?

Fat malabsorption- what are the possible causes- we know I do not have gastro disease (crohns, divert, celiec, pancreatitus, or gall bladder prob, no surgery/ new diagnosed lupus. And I have pots?

Steatorrhea : Many causes: pancreatic (exocrine insufficiency); celiac disease; sbbo/sibo; bowel resection/short bowel syndrome; bile acid malabsorption; certain medications; history of chemo/xrrt; systemic disease such as scleroderma & pbc have also been associated with fat malabsorption. Because each of these conditions can have specific and different treatments, determining the exact etiology is important. ...Read more

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Have lupus both &POTS. Waking up lightheaded, lethargic with low BPs of 90/50s-60s despite florinef (fludrocortisone) & high salt diet. Might midodrine be an option?

Have lupus both &POTS. Waking up lightheaded, lethargic with low BPs of 90/50s-60s despite florinef (fludrocortisone) & high salt diet. Might midodrine be an option?

Titrating your: Florinef (fludrocortisone) to a higher dose, using support stockings and sleeping with the head of the bed elevated might be beneficial. Midodrine or Droxydopa could be considered. Review your options with your health care provider. ...Read more

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I have postural orthostatic tachycardia syndrome from lupus. I only take plaquenil (hydroxychloroquine) since lupus gave me pots is that a poorer prognosis since it's the nervous system (I heard if it affects CNS its bad)?

I have postural orthostatic tachycardia syndrome from lupus. I only take plaquenil (hydroxychloroquine) since lupus gave me pots is that a poorer prognosis since it's the nervous system (I heard if it affects CNS its bad)?

YES and many more : Few listed:
cardiomyopathy (rare, relationship to Hydroxychloroquine unclear)

Central nervous system: ataxia, dizziness, emotional changes, headache, irritability, lassitude, nervousness, nightmares, psychosis, seizure, vertigo dermatologic: alopecia, angioedema, bleaching of hair, pigmentation changes (skin and mucosal; black-blue color), rash (acute generalized exanthematous pustulosis, etc. ...Read more

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Yellow tinged hard palate- im on klonopin, wellbutrin (bupropion). Nadolol, and prebiotics in powder form, have possible lupus and have pots could the meds be why?

Yellow tinged hard palate- im on klonopin, wellbutrin (bupropion). Nadolol, and prebiotics in powder form, have possible lupus and have pots could the meds be why?

Good question....: First see your dentist for an evaluation. You should also discuss side effects of all your medications with the physician who is prescribing them for you, along with your known and possible medical conditions. ...Read more

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Can lupus cause malabsorption. I have lupus, and pots and a lot of weight loss sometimes yellow stool sometimes constipated but undigested food, I've lost a lot of weight. Many gastro tests no answer?

Lupus and gluten : Lupus is an autoimmune disease that many people think may be linked to intestinal imbalances. Wheat and gluten can make autoimmune diseases worse. Whether you are celiac you should try going off gluten for 2 – 3 months. ...Read more