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Discussion about multiple myeloma treatments, stem cell transplants, clinical trials, alternative medicines, supplements, and their benefits and side effects.

Dexamethasone & eye health of multiple myeloma patients

by Chris M on Tue Jan 29, 2013 10:38 pm

Hello,

I haven't seen any postings about two more complications that dexamethasone can cause: cataracts and steroid-induced glaucoma. My husband was diagnosed with multiple myeloma in May of 2011 and began the clinical trial of carfilzomib (Kyprolis), Revlimid, and dex at the University of Michigan for newly diagnosed patients. He's now in his 21st cycle and FINALLY his M protein went to 0.0 after plateauing at 0.1 g/dL (1 g/L) for over 6 months. :D

Last fall, he suddenly developed very cloudy and blurry vision. The ophthalmologist determined he had cataracts in both eyes plus steroid induced glaucoma. He's had the cataracts removed surgically and now uses eye drops daily to control the pressure in his eyes. The ophthalmologist said it was not uncommon to develop these eye problems while taking dex for long periods of time. The glaucoma will hopefully not be a problem after he stops the dex.

With so many other multiple myeloma-related complications and conditions that need medical attention, it's easy to let the annual eye exam slide if you don't notice any problems. I just wanted to share this so that others are aware these complications can occur, too, so don't forget to get your eyes checked!

Chris

Chris M

Re: Dexamethasone & eye health of multiple myeloma patients

by Mater50 on Thu Oct 15, 2015 4:06 pm

I too, have been taking Revlimid and dexamethasone and now have developed fast growing cataracts (in just a few months time). Does anyone else have information on this?

Mater50

Re: Dexamethasone & eye health of multiple myeloma patients

by Music box lady on Thu Oct 15, 2015 9:05 pm

I too had cataracts come quickly, but I was thinking mine came from the stem cell transplant. Within 30 days of my transplant, I could not read the newspaper. I had been on Revlimid, Velcade, and dexamethasone (RVD) before my transplant. I had to wait three months for cataract surgery due to just having the transplant, and was so glad to be able to see and read again afterwards.

Music box lady
Name: Margie
Who do you know with myeloma?: Me
When were you/they diagnosed?: 2012
Age at diagnosis: 60

Re: Dexamethasone & eye health of multiple myeloma patients

by John Y on Thu Oct 15, 2015 9:46 pm

Cataracts are one of the GOOD side effects of multiple myeloma treatment (primarily the dex, I think). The operation to replace your natural lenses is quite easy and painless. If you are like me and wear glasses – I have been severely near-sighted all my life and always wore very thick glasses – they put the glasses prescription in the lens that is inserted in your eye to replace the natural lens. As a result, my eyesight is now 20/20 and I only need glasses to read.

John Y

Re: Dexamethasone & eye health of multiple myeloma patients

by Margareta on Fri Oct 16, 2015 3:25 am

The only eye problem I had was a minor one but left the doctors perplexed. After each transplant – I had two – I lost my reading sight and had resort to borrowing my husband's reading specs for a month or so. the it returned to normal without any treatment.

Margareta
Name: Margareta
Who do you know with myeloma?: myself
When were you/they diagnosed?: June 2012
Age at diagnosis: 63

Re: Dexamethasone & eye health of multiple myeloma patients

by KayTee on Thu Oct 22, 2015 12:49 am

I do not have multiple myeloma but follow the Beacon due to a former loved one having multiple myeloma. Just want to add my two cents which may or may not be of any value.

I've had Type 1 diabetes for over 30 years and have a number of related complications. Dex is a steroid. Any time I've received steroids, my blood sugar increases tremendously. I've had to learn to increase my insulin dosages to accommodate the rise in blood sugars. I cannot take any type of steroid treatments that require taking tablets over several days. I also cannot use steroid topical creams. Due to chronic pain in trigger fingers, frozen shoulders, etc., I've had many steroid in­jections and spinal epidurals. My blood glucose can increase a couple of hundred points following treatments.

High blood sugars definitely and directly affect eyesight in a negative fashion. Before I knew how to self monitor and increase my insulin dosages myself, I would end up with blurry and or double vision. I've read about people with multiple myeloma who have to go on insulin while taking dex. You may want to ask your myeloma specialist if daily glucose monitoring and taking insulin could help with vision problems.

Just a suggestion. I haven't read through other comments on this post and apologize if others have also addressed the correlation between steroids, high blood sugars, and vision issues.

KayTee

Re: Dexamethasone & eye health of multiple myeloma patients

by Kevin J on Sat Feb 27, 2016 10:28 am

Add me to the list of those that have developed dexamethasone-induced cataracts. I have noticed my eye­sight deteriorating steadily for the past two years or so. Last year my optometrist indicated I was starting to develop cataracts, then with my exam this year he indicated they were progressing.

I scheduled an appointment with my ophthalmologist, and she indicated I needed the surgery. She also indicated they were definitely drug-induced, not from aging - evidently, they form differently one case vs. the other.

I will be getting one eye done next month, then we'll decide on the other since it's not as bad. Similar to John Y, they will be putting a corrective lens in place which will eliminate the use of glasses except for reading.

Kevin J
Name: Kevin J
Who do you know with myeloma?: myself
When were you/they diagnosed?: Jan 2011
Age at diagnosis: 52

Re: Dexamethasone & eye health of multiple myeloma patients

by brandyjoco on Sat Feb 27, 2016 11:52 am

Kay Tee,

That is very interesting. If steroids or dex increase the sugar levels and cancer cells thrive on sugar, does that make the myeloma worse? But then I wonder if the other drugs counteract that ? It is so complicated.

I keep praying they can come out with a targeted antibody that only kills the CD138 cells.

brandyjoco
Name: brandyjoco
Who do you know with myeloma?: husband
When were you/they diagnosed?: September 2015
Age at diagnosis: 54

Re: Dexamethasone & eye health of multiple myeloma patients

by moonscape on Sat Feb 27, 2016 8:14 pm

I am on induction, and had to reduce my dex to 20 mg after the first week because my blood glucose soared almost 100 points.

I'm diabetic, and have controlled it via very low-carb diet without medication, but went to an endocrinologist last week asking for insulin. I started insulin, and upped the dex to 28 mg. It was very successful, and while I will need to continue tweaking the insulin, I'm now comfortable enough that this coming week plan to take the 40 mg dose, and think my oncologist will be happy!

I also have macular degeneration, and the first week my eyes went wonky from the dex. I had a lot of flashes and developed a large smudge floater, but with both diabetes and macular degeneration, I cannot say it was because of the dex. Perhaps it was entirely coincidental.

For anyone who has problems with the dex and blood sugar, I can recommend first line of defense is to reduce carbs drastically (wheat, potatoes, grains, rice, root vegetables, sugars obviously, etc.) - it makes an enormous difference. The dex effect was most dramatic for 2-3 days, and after that I can manage via diet without insulin.

moonscape
Who do you know with myeloma?: me
When were you/they diagnosed?: 11/2015

Re: Dexamethasone & eye health of multiple myeloma patients

by Karen on Fri Feb 02, 2018 2:44 pm

About a year ago, I started having blurred vision. I went to my eye doctor and she ran all of the tests for dry eye and started me on several therapies, but nothing has helped for more than a few hours (OTC eye drops, warm compresses, Restasis, blink exercises, humidifiers, etc.).

She thinks it might be a result of my long-term use of dexamethasone, which seems plausible. Unfortunately it seems like I'll never be able to go off the dex. I'm currently taking Kyprolis (carfilz­omib), Cytoxan (cyclophosphamide), and 40 mg of dexamethasone. A while ago (when I was on a different drug combination) my doctor let me cut back from 40 mg of dexamethasone to 20 to see if it would help my eyes, but unfortunately it didn't.

The eye doctor hasn't seen any sign of cataracts, but I'm going in next week for a more sophisti­cated test that I guess can determine if any are starting to develop.

So this is a topic that interests me, and I'm wondering what can be done to help in situations such as mine.

Thanks!

Karen
Name: Karen
When were you/they diagnosed?: December 2010
Age at diagnosis: 51


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