GVHD after a year?!?!?

[teke152]

My Wife is almost upon day +365 (January 30th is a year) post BMT for Severe AA, and she was just diagnosed with onset Ocular GVHD.

Has anyone heard of this before, Taking so long to show any form of GVHD?

Has anyone dealt with Ocular GVHD or can anyone give me any information regarding what to expect?

My wife and I are very nervuos and the hospital did little to control that as they gave her no other information, just a new appointment with a doctor she has not seen at this point.

Any help, advice, or encouragement is greatly appreciated as this is new territory for us both.

[bailie]

If you google "Ocular GVHD" you will find a wealth of information. Below is just one explanation.

Ocular complications secondary to GVHD are common and include dry eye syndrome, acquisition of ocular allergy from donors with allergic disorders. Eyelid changes may occur in GVHD leading to scleroderma-like changes. Patients may develop poliosis, madarosis, vitiligo, lagophthalmos, and entropion. The cornea may show filamentary keratitis, superficial punctate keratitis, corneal ulcers, and peripheral corneal melting which may lead to perforation in severe cases. Scleritis may also occur which can be anterior or posterior. Keratoconjunctivis sicca appears to be the most common presentation of GVHD. The lacrimal glands may be involved with mononuclear cell infiltration of both the major and accessory lacrimal glands and decrease in tear production.

Severe dry eye syndrome in patients with GVHD may develop conjunctival scarring, keratinization, and cicatrization of the conjunctiva.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3770225/

[Whizbang]

I found this on Ocular GVHD (five years old though)...

http://www.aao.org/publications/eyen...810/pearls.cfm

it states: "Many ocular GVHD exacerbations occur during the tapering of systemic immunosuppressive therapy..."

I hope that your symptoms subside, and that they are only temporary...

God Bless...

[Neil Cuadra]

teke152,

The information Whizbang found is what came to my mind too. Is your wife just getting off post-transplant immunosuppressants? If so, the drugs may have been keeping the GVHD at bay, and with an awakening immune system your wife's GVHD symptoms have now shown up. I don't know if that's the explanation for your wife, but if it is then it's a balancing act for the doctors to find the right dosages. It's risky to keep the immune system suppressed longer than necessary, even if it helps keep GVHD suppressed too. You'll find a wide variety of drug-tapering stories in these forums.

[teke152]

Yes, her tacrolimus was just reduced from 2 per day to one per day about a month ago.

I appreciate the feedback and quick replies. My instinct says it is manageable with quick treatment using wye drops as directed but her doctor that said it was gvhd gave absolutely no information on this. He just told her a specialist would call her and sent her home. I think this exacerbated her fear which is never a good thing.

Thank you again for the support!

[dfantle]

Teke, I've heard GVHD can also occur once the immunosuppressive medications are reduced significantly or removed all together. For many, this occurs at around 1 year.

In some cases for localized GVHD, I believe there may be localized treatments available, such as eye drops. The doctor she sees for this should be able to properly evaluate & prescribe what is needed, unless her SAA Dr's suggest more of the Tacro. Perhaps the hospital wants to fully understand the eye issues before treating?

Your wife's & my 1 year date are just 1 day apart (mine is Jan 29). Big milestones for she & I .

Hang in there, it sounds like she's done quite well with no GVHD until now, as have I, so I think we've been very lucky with this. Though I too have on/off concerns about the unknowns of GVHD, I've met a couple of transplant patients who have been treated for various forms of GVHD post 1 year and continue to do extremely well and enjoy life to the fullest. This helps to put me a bit at ease.

Best wishes

[teke152]

Congrats on your year. That's a huge milestone and should not be taken lightly.

I'm glad to hear some consistency in response. We are taking things as they happen at this point. The hospital in which she is a patient is massive and they have so many patients, they rarely have time for us unless we have a scheduled appointment which has to be done pretty far in advance. In this case, the ophto is new and did not communicate with the primary so it caused bigger problems.

I hope you enjoy you 365 celebration, I know I'm planning something for my wife and we ordered a few dozen cupcakes for the inpatient nurses from the transplant team.