[Bulan]

Have MGUS, wondering if symptoms point to amyloidosis

by Bulan on Tue Apr 03, 2018 10:37 pm

I'm 40 years old, a wife and mother to a previous 5-year-old boy, and I'm diagnosed with low-risk MGUS. My question is about amyloidosis.

I developed bursitis in my hip before Christmas, and it became excruciating. I also noticed swelling over one of the painful areas in my hip, which is about two inches (5 cm) across, and has not grown but has stayed that size for months. Physiotherapy helped reduce the pain, but not the swelling. (On my doctor's orders, I can't take anti-inflammatories.)

Meanwhile, I had bloods done in January, and all came back normal except for the same 'faint' elevated light chain that I had last year, confirming my low-risk MGUS diagnosis.

In February I had a bone scan, SPECT scan, and low-dose CT scan of my hip. All came back normal.

But I'm concerned now that the swollen area is beginning to lose feeling. It isn't growing, just feeling a bit numb. If it was a fracture or myeloma tumor, would I feel bone pain? Because I don't, only pain just under my skin in the swollen area.

Also, about two inches away, I have a small patch of dry skin developing. It was translucent at first, and now a small part of it looks a bit reddish. This is why I've had amyloidosis on my mind.

Do the symptoms I've described suggest that I might be developing amyloidosis?

[Multibilly]

Re: Have MGUS, wondering if symptoms point to amyloidosis

by Multibilly on Wed Apr 04, 2018 8:05 am

Hi Bulan,

I'm not sure if your symptoms would necessarily suggest amyloidosis to a doctor, but skin lesions and swelling in the joints or bursa are indeed some of the symptoms that may or may not show up in patients with amyloidosis.

Have you been doing UPEPs (24 hour urine collections) as part of your routine MGUS testing? Progressive proteinuria (high levels of protein in your urine) can often be the first sign of amyloidosis in patients with monoclonal gammopathies.

If you haven't had a bone marrow biopsy with a Congo red stain test to look for amyloid protein, a fat pad biopsy on your tummy would probably be the least expensive and simplest way to verify if you were dealing with amyloidosis or not. Given your ongoing pain with your hip, it seems very reason­able to me to ask your doctor for this test. Also, based on one of your earlier posts, it might be good to follow up with a myeloma specialist on this request..

Lastly, is your doctor suggesting that you don't take anti-inflammatories because of your MGUS diagnosis? Note that the reason for not taking some anti-inflammatories like Advil when you have a monoclonal gammopathy is for fear of compromising your kidneys after long-term use. But in these situations, some doctors do prescribe Tylenol, which tends to be much more kidney-friendly than Advil.

[Bulan]

Re: Have MGUS, wondering if symptoms point to amyloidosis

by Bulan on Tue Apr 17, 2018 10:01 am

Thanks, Multibilly! I appreciate your informative post! It helps in figuring out my next steps.

Since my last post, I've seen an internist. He isn't a myeloma specialist, but he has seen amyloidosis on the skin before, and he doesn't believe mine is the same.

That being said, I am trying to be thorough. I have a hematologist, but she feels strongly that I don't have anything more than low-risk MGUS, and in our first and only appointment, she was resistant to discussing my other questions with me. But she still offered me a bone marrow biopsy, which is coming up later this month, so I'll ask her to do the Congo red stain test. I hope she'll say yes. I'll also ask her about the fat pad biopsy. (I'm in Canada and have had consultation requests declined by four myeloma specialists based on the low numbers in my blood work.)

I did the 24-hour urine collection in September and it came back clear. I'm wondering, however, if I should do it again after 6 months. My family doctor has already said that anything other than basic blood tests are unnecessary at my 6-month check-up, but I feel I need it again now that I have these symptoms, I'll need to make a case for it, and I may face opposition from her, and I don't want to go through it unless I need to.

About the anti-inflammatories, it's actually because I have migraines with aura that I'm not supposed to take them. Apparently, the migraines with aura increase my risk of a blood clot or stroke, and NSAIDS increase the risk further, so I'm taking Tylenol (acetaminophen / paracetamol) instead.

[Multibilly]

Re: Have MGUS, wondering if symptoms point to amyloidosis

by Multibilly on Tue Apr 17, 2018 4:14 pm

Thanks for the follow-up. Note that a Congo red stain test is very simple and it's cost should be insignificant in comparison to the overall cost of a bone marrow biopsy test. A Congo red stain test simply involves adding a drop of stain to the biopsy sample and then looking for an apple-green sheen when viewed under polarized light in a microscope. So, I doubt that your doctor would not include that simple test if you asked for it.

Having said that, I would trust your doctors as they are probably right about you not having amyloidosis.