Most of the symptoms and signs of AL amyloidosis are non-specific and usually caused by a number of other common conditions. But a few rare complaints are very suggestive of a diagnosis of AL amyloidosis. Bruising of the skin around the eyes is one of these. This is known as periorbital purpura in medical terminology, and may also be referred to as raccoon eyes or panda eyes.
Although less than 15% of patients with AL amyloidosis experience this problem, it is hardly ever caused by anything else, so it should certainly prompt doctors to investigate the possibility of AL amyloidosis.
Periorbital purpura is dark, usually appears quite suddenly, and is quite different from the common phenomenon of shadows under the eyes. The appearance is usually that of quite severe bruising. Sometimes the bruising fades or even disappears during or after chemotherapy treatment, but this may take months. Some patients with AL amyloidosis also experience easy bruising in other parts of the body. Any rubbing of the skin can cause these to appear and they may then fade. However the bruising round the eyes usually lasts for much longer. It does not cause any pain or irritation and is only a cosmetic issue.
It is quite often the trigger for a doctor to check for the possibility of amyloidosis.
Source: National Amyloidosis Centre
I am part of the less than 15% who was diagnosed with AL Amyloidosis. That was definitely the first sign for the hematologist. I was told that it was called purpura or raccoon eyes.
At the time (2015), I was working and the staff and everyone else always made comments about being in a “bar fight”.
I had perioorbital purpura about four years ago while at Mayo-AZ for diagnosis studies. The Mayo docs said I had something in my eye that caused the problem, maybe some powder or something. Anyway, I left Mayo with no diagnosis after four months except for a bad thyroid, some swollen organs, and some esophageal pre-cancerous stuff. I am still looking for diagnosis, but apparently the docs are too lazy to do the research necessary for a strong diagnosis.
Karl, you must keep searching for answers and don’t give up. Someone will be concerned about this and send you to get the right testing. Do you have any pictures of what you looked like with the purpura?
I took pictures in order to show every doctor I saw until a hematologist was concerned enough to get biopsies done and I finally got a diagnosis.
So, don’t give up. I will pray that you get answers soon.
What causes this, i.e., what’s the physiologic explanation for this? Amyloid in the capillaries?
The consequence of vascular (i.e., vessel wall) fragility induced by the deposition of light-chain fragments.
I first experienced raccoon eyed 2 years ago after a sneezing episode. After repeated bruising, an eyelid biopsy led to a diagnosis of al amyloidosis. 2 months into chemotherapy I still have bruising.
After 2 years of asking doctors, eye drs, cardiologists my husband saw amyloidois picture and insisted on a biopsy of his eyelid. He was diagnosed with AL amyloidosis and immediately referred to a hematologist who said it’s rare to only have light chain deposits in one place, i.e. neded other tests. He is now diagnosed with smoldering multiple myeloma, although not a total surprise since he had MGUS for 18 years (with no change noted in annual lab). PLEASE FIND OUT WHAT IS CAUSING YOUR BLACK EYES!
Luckily he is at a very early stage, so no organ damage and chemo injections seem to be improving his labs.
I was diagnosed with Smoldering MM as well back in November of 2019. In July of 2020 I had my first bruising around my eye. I thought it was due to an infections. But has intemitent outbreaks. I just had a periodic blood test and Urine test and they were unchanged since my initial diagnosis. I keep hoping the symptom will go away but it persists. Also I get this eye twitching that is annoying. I am still on a wait and watch program with my oncologist.
I had the periorbital purpura for about a year prior to my diagnosis. I saw my pcp, allergist, dermatologist and opthomologist, all with no diagnosis. It wasnt until I had chest pain that the real work up started. It was found in my heart via cardiac mri. I’m now post chemo and bone marrow transplant x2 months. Myblight chains are now normal bit I’m still having the bruising and it seems to be getting more frequent and worse. Does this ever go away or am I just going to have to deal with it the rest of my life?
My cardiologist has been suspecting amyloidosis for over a year but two biopsies gave negative results. I recently had a biopsy for temporal arteritis. I had pronounced purpura around my eye afterwards that went away. Could this further indicate amyloidosis or was just the trauma of the surgery that caused it?
I’ve had the bruising on my arms for 8 yrs. I started getting exhaust about 3yrs ago. After I had a heart attack. No one listened until this year. I have liver cirrhosis now. Ckd stage 2. Heart failure. Etc cking me tomorrow for AL. Then a MRI Oct 3 for ATTR. I want a diagnosis. To start getting better