Chronic GVHD causing DES

[Khaled]

Hi guys,

I am a 28 year old living in Melbourne, Australia. The story of my dry eyes is a long one, so I will use sort of a timeframe to explain.

2001 - Diagnosed with Leukemia at the age of 17 and underwent 26 months of chemotherapy

2002 - Had a corneal graft in my left eye due to Keratqconus

2002 - 2006 - Lived a normal life

2006 - ALL Leukemia relapses and underwent more chemotherapy

2007 - Underwent a Bone Marrow Transplant from an unrelated donor

2007 - 2008 - Fought GVHD (Graft VS Host Disease) with immunosuppressants (Cyclosporine, Prednisone, CellCept) til today

2009 - The cornea of my right eye ripped open

2009 - Had a corneal graft a few weeks later, 3 days after my wedding.

A few weeks after the graft, my eyes became dry and it only got worse. It got so bad that I was no longer able to work. I was in constant pain and had mucus and mucus strings always popping up on my eye. I would stop leaving the house because of how bad the discomfort and light sensitivity was.

The dry eyes are caused by the BMT. The donors immune system is attacking my eyes because it is recognizing them as foreign. I have had my punctual holes burnt shut on all ends also with limited success. I currently have to put Cellufresh eyedrops in my eyes every 15 minutes to keep them moist and 4 Panadeine Forte each morning to get me through the day. I did once try cyclosporine eyedrops but they were so painful, I refused to ever take them again. Haven't really tried anything else as my doctors are have not had many patients who have gotten dry eyes from GVHD.

My oncologist has tried increasing my immunosuppressants to suppress the donor immune system from attacking my eyes, but with little success. I have found a eye special who is in my city who is the head of field in Australia. He specializes in dry eyes and has a keen interest in patients with GVHD. I have made an appointment to see him in August (his earliest appointment), but until than I am stuck fighting this disease.

My dry eyes have cost me my marriage, my job and many friends (I have been unable to be as active as I once was), so it has hit deep in my life. I have read about autologous serum drops and am very interested in trying them.

Is there anyone else here who has had dry eyes caused by GVHD? And if so, how did you deal with it?

Thank you I'm advance for your replies.

[MBC]

Hi Australia,

I am near Boston in the US. I have had a bone marrow transplant last year and have suffered extreme gvhd of my corneas in both eyes. I know how painful and debilitating it can be. Fortunately I found a doctor in Boston that works with a whole lot of gvhd patients. He is in the top of his field. He gave me serum eye drops. What you must do is a blood draw so the drops can be made. They mix your donor stem cells they take from your blood. This gives you a supply of about 2 months or so so you will always have to make more. This is the only thing that saved my vision and cornea. Nothing else worked. It is expensive and inconvenient but I can see, have no pain. I still have dry eyes but not to the extent it was. I can now say it is all quite managable. I also believe you need to find a specialist who works with gvhd all the time, not just one who has had a patient or two over the years. There is so much new research for us just this year alone. A regular eye doctor will never be able to really help you. Get yourself to a research university hospital

[Khaled]

Thanks for your reply MBC,

I have made an appointment with Dr Anthony Hall and Dr Colin Chan (in Sysney) so am hoping they will have information or knowledge of the serum drops. My appointments aren't for another month and 2, but I am dry excited about them.

When my oncologist told me my eyes weren't going to get better, it was very difficult to bare. But after reading about serum drops and this forum, I have a new found hope!

[Khaled]

MBC,

Do you mind if I ask if your donor was related or unrelated?

[Rebecca Petris]

Khaled, welcome. I am so sorry to hear what you've gone through with your eyes and how much impact that's had.

There are not too many GvHD folks on this bulletin board I think, but I talk to many regularly. MBC's advice about serum drops is great. I would add that if you get someone to do it who does not do it regularly, make sure they read this study:

Time and Temperature Dependent Stablity of Growth Factor Peptides in Human Autologous Serum Eye .pdf

Many of the GvHD patients I know treat it with PROSE (scleral lenses which keep the cornea under a fluid layer). It's not a slam dunk but it works for a lot of people. Unfortunately it's not readily accessible to everyone, but perhaps worth linking into. Mucus can be an issue for some scleral wearers but it is still more comfortable than without. Light sensitivity is usually resolved with the lenses.

Are you currently using any protective eyewear (night, day or both)? If not I would urge you to look into it as it can make a huge difference to comfort and to light sensitivity. If this is new to you, have a look at this PDF: Moisture Retaining Eyewear.pdf

[Khaled]

Hi Rebecca,

Thank you so much for your reply.

I have not tried anything apart from immunosuppressant drugs to combat my GVHD. My doctors unfortunately are not very knowledgeable when it comes to dry eyes. I am very keen on trying the AS drops and will speak to Dr Hall when I meet him in August:

The Moisture Retaining Eyewear sounds interesting and I am willing to try anything to relieve some of the pain. Which one would you recommend I try? Also, where would I purchase them from?

[Rebecca Petris]

The Moisture Retaining Eyewear sounds interesting and I am willing to try anything to relieve some of the pain. Which one would you recommend I try? Also, where would I purchase them from?

Given the severity, something that can be used indoors & outdoors seems indicated... best ones are the 7Eye (100SPF) and Wiley-X (climate control) brands. If I remember right there is at least one WileyX dealer in Australis - so sorry couldn't tell you where = see wileyx.com for contact info but I don't think 7Eye currently has any distribution there. I have a few customers who I know have been able to get WileyX glasses over the years and fit is key to performance so I'd encourage you to chase that down locally if possibly. Otherwise it's a matter of ordering from the US - whether from the dry eye shop or manufacturer sites - and that's rather hit and miss due to fit issues plus all the customs costs etc.

[Niaz 47]

Hi guys,

I am a 28 year old living in Melbourne, Australia. The story of my dry eyes is a long one, so I will use sort of a timeframe to explain.

2001 - Diagnosed with Leukemia at the age of 17 and underwent 26 months of chemotherapy

2002 - Had a corneal graft in my left eye due to Keratqconus

2002 - 2006 - Lived a normal life

2006 - ALL Leukemia relapses and underwent more chemotherapy

2007 - Underwent a Bone Marrow Transplant from an unrelated donor

2007 - 2008 - Fought GVHD (Graft VS Host Disease) with immunosuppressants (Cyclosporine, Prednisone, CellCept) til today

2009 - The cornea of my right eye ripped open

2009 - Had a corneal graft a few weeks later, 3 days after my wedding.

A few weeks after the graft, my eyes became dry and it only got worse. It got so bad that I was no longer able to work. I was in constant pain and had mucus and mucus strings always popping up on my eye. I would stop leaving the house because of how bad the discomfort and light sensitivity was.

The dry eyes are caused by the BMT. The donors immune system is attacking my eyes because it is recognizing them as foreign. I have had my punctual holes burnt shut on all ends also with limited success. I currently have to put Cellufresh eyedrops in my eyes every 15 minutes to keep them moist and 4 Panadeine Forte each morning to get me through the day. I did once try cyclosporine eyedrops but they were so painful, I refused to ever take them again. Haven't really tried anything else as my doctors are have not had many patients who have gotten dry eyes from GVHD.

My oncologist has tried increasing my immunosuppressants to suppress the donor immune system from attacking my eyes, but with little success. I have found a eye special who is in my city who is the head of field in Australia. He specializes in dry eyes and has a keen interest in patients with GVHD. I have made an appointment to see him in August (his earliest appointment), but until than I am stuck fighting this disease.

My dry eyes have cost me my marriage, my job and many friends (I have been unable to be as active as I once was), so it has hit deep in my life. I have read about autologous serum drops and am very interested in trying them.

Is there anyone else here who has had dry eyes caused by GVHD? And if so, how did you deal with it?

Thank you I'm advance for your replies.

Dear, khaled bro I am 26 and bmt for aml 3 month ago.after one month of transplant I grew severe skin and eye gvhd.and still suffering with severe dry eyes.my schirmer result is only 2/4.I am suffering so much.sometime have suicidal thought. plz inform your recent conditions and medication.my email address niaz_nstupharmacy@yahoo.com. plz give me some advice.now I am living in kolkata.

[littlemermaid]

Niaz, there is a gentleman on the Facebook Dryeyezone who is 2y after RCE from GVHD from bone marrow transplant for leukemia and doing well - if you want to talk to him you would request to join the chat in the Closed Group Dryeyetalk. He is using PROSE bandage lenses so you can ask him about that maybe. Hope you are feeling better.