I am a 62-year-old male and I was diagnosed with smoldering multiple myeloma in June 2017.
I first discovered a problem with my eyes in December 2016. The problem has gotten progressively worse over the past year, to the point where I cannot drive at night due to the refraction and glare making it foggy.
My doctor in Canada who confirmed I had smoldering multiple myeloma did not address my eyesight problem at all. It has been left without any form of treatment.
My nose also has sores inside that bleed sometimes when I blow my nose.
The concern is my eyesight that has gotten so much worse. So I decided to see a doctor in California, and he confirmed the eyesight problem is part of my disease, and he wants to go ahead with treatment (DVD on a 28 day cycle). I have no other symptoms and feel pretty good.
Is it common with smoldering multiple myeloma, or symptomatic multiple myeloma, to develop crystals in the cornea(s)? How is this treated, and how effective is the treatment and how long does it last?
Thanks.
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Re: Development of crystals in corneas with multiple myeloma
Welcome to the forum, itch.
I've not heard of multiple myeloma causing corneal crystals, but there apparently have been cases like yours in the past. As I understand it, in rare cases of multiple myeloma, the monoclonal protein produced by the myeloma cells crystallizes in one or both corneas of the eye.
The first paper I've listed below discusses a case where the crystallization caused the corneas of the patient to become cloudy. It also has references to other case reports.
The second paper I've listed below describes a case that seems very similar to yours.
Did I understand your post correctly that, based on the connection between your myeloma and the crystals, your doctors decided to start treatment of your multiple myeloma? You say your treatment will be the DVD regimen; what exactly are the three drugs in that regimen?
Good luck!
References:
1. Sharma, P, et al, "Cloudy corneas as an initial presentation of multiple myeloma," Clinical Ophthalmology, April 28, 2014 (abstract and full text of article)
2. Kleta, R, et al, "Keratopathy of Multiple Myeloma Masquerading as Corneal Crystals of Ocular Cystinosis," Mayo Clinic Proceedings, March 2004 (abstract and full text of article)
I've not heard of multiple myeloma causing corneal crystals, but there apparently have been cases like yours in the past. As I understand it, in rare cases of multiple myeloma, the monoclonal protein produced by the myeloma cells crystallizes in one or both corneas of the eye.
The first paper I've listed below discusses a case where the crystallization caused the corneas of the patient to become cloudy. It also has references to other case reports.
The second paper I've listed below describes a case that seems very similar to yours.
Did I understand your post correctly that, based on the connection between your myeloma and the crystals, your doctors decided to start treatment of your multiple myeloma? You say your treatment will be the DVD regimen; what exactly are the three drugs in that regimen?
Good luck!
References:
1. Sharma, P, et al, "Cloudy corneas as an initial presentation of multiple myeloma," Clinical Ophthalmology, April 28, 2014 (abstract and full text of article)
2. Kleta, R, et al, "Keratopathy of Multiple Myeloma Masquerading as Corneal Crystals of Ocular Cystinosis," Mayo Clinic Proceedings, March 2004 (abstract and full text of article)
Re: Development of crystals in corneas with multiple myeloma
First of all I want to say thank you. I didn't get back to you right away because I was waiting for some of my results.
So now my ophthalmologist has confirmed that the multiple myeloma is the cause of the crystal in my eye corneas. My hematologist in Canada said that the multiple myeloma had nothing to do with my eyes. However, the myeloma specialist I saw in California I saw for a second opinion said he was 99.9% sure it was the multiple myeloma that is causing this. But he went on to say he would like a ophthalmologist to confirm this.
The myeloma specialist recommends the following treatment regimen:
Doxil, Velcade, and dexamethasone (DVD) - 28 days per cycle
1. Dexamethasone 40 mg IV infused over 30 minutes on days 1,4,8,and 11
2. Velcade 1 mg/m2 subcutaneous injection on days 1,4,8, and 11
3. Doxil 5 mg/m2 IV infused over 60 minutes on days 1,4,8,and 11
Check echocardiogram within 2 weeks of starting Doxil
* Days 12 through 28 are rest period, but myeloma labs should be drawn on day 22.
1. Acyclovir 400 mg orally twice daily for shingles prevention
2. Alpha lipoic acid 600mg orally daily for peripheral neuropathy (don't take on Velcade days; reduces Velcade effectiveness)
3. Begin calcium 1 g orally daily and vitamin D 1200 IU daily
4. Check vitamin D levels and possibly adjust dose of vitamin D accordingly
5. Avoid vitamin C for about 4 hours before and after Velcade.
Labs to draw on day 22: CBC with platelets and diff, CMP, CRP, B2micro, QIGS, SPEP, SIEP, 24-our urine total protein/total volume, UPEP, creatinine clearance.
My hematologist in Canada, his regimen I will let you know in the coming days. I would think that it would be somewhat different.
I'm still trying to get a sense of how common crystals in eye corneas are with multiple myeloma, and how the myeloma should be treated in such a situation.
So now my ophthalmologist has confirmed that the multiple myeloma is the cause of the crystal in my eye corneas. My hematologist in Canada said that the multiple myeloma had nothing to do with my eyes. However, the myeloma specialist I saw in California I saw for a second opinion said he was 99.9% sure it was the multiple myeloma that is causing this. But he went on to say he would like a ophthalmologist to confirm this.
The myeloma specialist recommends the following treatment regimen:
Doxil, Velcade, and dexamethasone (DVD) - 28 days per cycle
1. Dexamethasone 40 mg IV infused over 30 minutes on days 1,4,8,and 11
2. Velcade 1 mg/m2 subcutaneous injection on days 1,4,8, and 11
3. Doxil 5 mg/m2 IV infused over 60 minutes on days 1,4,8,and 11
Check echocardiogram within 2 weeks of starting Doxil
* Days 12 through 28 are rest period, but myeloma labs should be drawn on day 22.
1. Acyclovir 400 mg orally twice daily for shingles prevention
2. Alpha lipoic acid 600mg orally daily for peripheral neuropathy (don't take on Velcade days; reduces Velcade effectiveness)
3. Begin calcium 1 g orally daily and vitamin D 1200 IU daily
4. Check vitamin D levels and possibly adjust dose of vitamin D accordingly
5. Avoid vitamin C for about 4 hours before and after Velcade.
Labs to draw on day 22: CBC with platelets and diff, CMP, CRP, B2micro, QIGS, SPEP, SIEP, 24-our urine total protein/total volume, UPEP, creatinine clearance.
My hematologist in Canada, his regimen I will let you know in the coming days. I would think that it would be somewhat different.
I'm still trying to get a sense of how common crystals in eye corneas are with multiple myeloma, and how the myeloma should be treated in such a situation.
Re: Development of crystals in corneas with multiple myeloma
Hi Itch,
Multiple myeloma affects us all differently, but you sound very similar to me (even the nosebleeds, which I just can't shake, even after my GP treating with a steroid cream for a month.)
I too had problems with clouding in my corneas not long after my stem cell transplant and was sent to an ophthalmologist straight away. His view was that while my immune system was down, I had contracted a virus behind one eye, which he treated with some steroid drops and put me permanently on acyclovir. The problem occurred twice more and was treated the same. That was about 18 months ago now and I haven't had a problem since, but I remain on the acyclovir and think that is keeping the virus at bay.
Your situation may be quite different to mine, but thought would let you know anyway. Good luck and hope you end up getting same result.
Jim
Multiple myeloma affects us all differently, but you sound very similar to me (even the nosebleeds, which I just can't shake, even after my GP treating with a steroid cream for a month.)
I too had problems with clouding in my corneas not long after my stem cell transplant and was sent to an ophthalmologist straight away. His view was that while my immune system was down, I had contracted a virus behind one eye, which he treated with some steroid drops and put me permanently on acyclovir. The problem occurred twice more and was treated the same. That was about 18 months ago now and I haven't had a problem since, but I remain on the acyclovir and think that is keeping the virus at bay.
Your situation may be quite different to mine, but thought would let you know anyway. Good luck and hope you end up getting same result.
Jim
-
Wainui - Name: Wainui
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 2013
- Age at diagnosis: 56
Re: Development of crystals in corneas with multiple myeloma
Hello Jim.
Thank you for the information. Yes, it seems yours is somewhat different than mine. I'm always learning new things about this disease everyday.
Thank you,
Richard
Thank you for the information. Yes, it seems yours is somewhat different than mine. I'm always learning new things about this disease everyday.
Thank you,
Richard
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