Patient Comments: Amyloidosis - Other Illnesses

Please describe any other illnesses you have suffered in addition to amyloidosis.

Comment from: Casey, 55-64 Male (Patient) Published: August 15

My father died of familial amyloidosis in 1987. I was diagnosed in 3/12 when I was 62 years old, I have type Thr60Ala. I have autonomic and peripheral nerve damage, and had cardiac amyloidosis as well. This type requires a heart/liver transplant from the same donor, I was on the waiting lists. I received the dual transplants in 12/13. I am now 8 months out, transplants are doing good, still have to contend with my transthyretin polyneuropathy symptoms. I may go on drug therapy soon, once my immunosuppressants go to lower maintenance dosages.

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Comment from: berrypicker, 55-64 Female (Patient) Published: February 28

I was diagnosed in 2012 with amyloidosis. I thought I was having heart problems but that turned out to be acid reflux and the amyloid deposit was found in my stomach when they did the scope for the reflux. I also have an ulcer found at that time. I have Sjogren's syndrome and sub-acute cutaneous lupus. I take clobetasol for the plaques from the lupus, and Nexium for the reflux. I have no pain, but find I am often more tired than I was. I have read that reducing or eliminating gluten from the diet may help prevent some of the buildup of amyloid chains, and that there are some essential oils that may be of benefit. I am trying to structure my diet to remove refined sugar, gluten, red meat, caffeine, and all processed and deep fried foods. I'm also am adding omega 3, turmeric and probiotics along with my regular vitamins. I read that bromelain helps as well, and will add that when I check with my doctor.

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Comment from: Kate, 55-64 Female (Patient) Published: February 11

I was diagnosed with primary AL amyloidosis in November 2012. My symptoms were dry mouth, constant heart palpitations, muscle fatigue, light-headedness, fatigue, being able to eat only very small portions of food and found meat very difficult. I was diagnosed with Graves' disease because my thyroid was on the extreme hyper end of the scale. After this misdiagnosis it took almost a year to correctly diagnose my condition. I was happy that there was a chance to stop this blood disease and was fully expecting chemotherapy with stem cell transplant. I instead was treated with a chemotherapy drug Velcade and dexamethasone. It was like a miracle! My light chain levels went from 287 to 24 in one cycle of treatment! I had four more cycles of treatment to be certain and then was taken off but my levels remain in the normal range. I have congestive heart failure and am dealing with it through having a very low sodium diet, drinking no more than 1 1/2 liters of fluid a day taking Lasix or water pills. It takes a very long time to see progress but I feel better and better every day. There really is a lot of hope for amyloidosis. I think this website needs to update their information on amyloidosis treatments.

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Comment from: GINGER, 55-64 Female (Patient) Published: December 16

I was diagnosed with hereditary systemic amyloidosis in 2001. I have been attending the hospital where the amyloidosis center is based. I have recently been in hospital with a suspected blood clot in my lung, my D-dimer which should be around 500 is over 4000 and the doctors now think that I have scarring in the lungs, but do not know the cause (they usually blame the amyloidosis if they don't know what's wrong with me).

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Patient Comments

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Amyloidosis - Symptoms Question: What symptoms did you experience with amyloidosis?
Amyloidosis - Treatment Question: What treatment has been effective for your amyloidosis?
Amyloidosis - Complications Question: Describe the complications of amyloidosis experienced by you or someone you know.

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