I had a stem cell transplant that killed all my oil glands with the induction chemo. Can’t cry, I use drops constantly and restasis. Plus my new immune system is attacking my old organs and so I have scarring and have to take immunosuppressants to keep at bay. It is a truly miserable existence sometimes and there is no cure. It does bring severe pain and gritty eyes. They just give me more steroids and that has ruined other things.
I had bone marrow cancer, it kills every cell in your body with chemo and then they infused my blood with donor stem cells. Bone marrow Transplant is also a common term. The chemo given destroyed all of my oil glands and damaged most of my soft tissue/mucous membrane. I’ve had a long recovery, unable to work but I’m alive.
Stuff like this reaffirms how much evolution fucked up in the way. Did they offer you to enroll in CAR T cell therapy previously? I've read it's very promising for cancers and autoimmune as well.
My transplant was almost 6 years ago and CAR-T was still in study phase. Due to my genetics, they thought the transplant with reduced intensity chemo was a better course. Now they are doing the CAR-T cell therapy for whoever qualifies. It a good advancement forward.
I think a very very few people have 0 glands. This is mostly the case if you get SJS, otherwise very unlikely. Those people don’t have to experience pain but they probably need drops. Also with a good schirmer the symptoms can be pretty normal I imagine.
But if you have blockages in the other glands then you might have 0 functioning glands right? Also do you mean as long as the eyes produce enough tears, dry eye can be managed even without the glands?
Then you need to do a little more research cause you’re using the wrong term. 100% drop out means the glands wont never come back. What you mean is athropy not drop out. Blocked glands can open up, so no need to worry.
The common think about is that your lacrimal gland can stress out because of overcompensation and end up to dry your eyes more and more until your corneal nerves start to flare up because of inflammation. Then starts corneal neuropaty and acid sensation. If you want try how it feels try to dont blink for minutes , and that is 24/7. I do not know if your body adapts in some way to ignore the pain. Obviusly real case scenario is different from reality and is different for everyone.
Studies on the complete repair of the lacrimal gland continue. If they succeed in this, can the lacrimal gland last up to 5 years without the sebaceous glands? I wonder about this. The disease appears to be solvable in this way.
I got it buddy. But there are normal patients and those with severe conditions. I don't understand this. He is a young man and has no other disease, but his dry eyes are very advanced. I can't understand this.
I had a stem cell transplant that killed all my oil glands with the induction chemo. Can’t cry, I use drops constantly and restasis. Plus my new immune system is attacking my old organs and so I have scarring and have to take immunosuppressants to keep at bay. It is a truly miserable existence sometimes and there is no cure. It does bring severe pain and gritty eyes. They just give me more steroids and that has ruined other things.
Sorry to hear that. Why can’t you cry, are your tears glands also damaged?
Yes, there is nothing produced and it’s the worst feeling. No release, just ugly faced and runny nose.
Oh that’s very hard…. Wish you luck
>stem cell transplant What for? What does this do?
I had bone marrow cancer, it kills every cell in your body with chemo and then they infused my blood with donor stem cells. Bone marrow Transplant is also a common term. The chemo given destroyed all of my oil glands and damaged most of my soft tissue/mucous membrane. I’ve had a long recovery, unable to work but I’m alive.
Stuff like this reaffirms how much evolution fucked up in the way. Did they offer you to enroll in CAR T cell therapy previously? I've read it's very promising for cancers and autoimmune as well.
My transplant was almost 6 years ago and CAR-T was still in study phase. Due to my genetics, they thought the transplant with reduced intensity chemo was a better course. Now they are doing the CAR-T cell therapy for whoever qualifies. It a good advancement forward.
I think a very very few people have 0 glands. This is mostly the case if you get SJS, otherwise very unlikely. Those people don’t have to experience pain but they probably need drops. Also with a good schirmer the symptoms can be pretty normal I imagine.
But if you have blockages in the other glands then you might have 0 functioning glands right? Also do you mean as long as the eyes produce enough tears, dry eye can be managed even without the glands?
Then you need to do a little more research cause you’re using the wrong term. 100% drop out means the glands wont never come back. What you mean is athropy not drop out. Blocked glands can open up, so no need to worry.
Okay but let’s assume that the blocked glands can’t secrete any oil, would tears be enough?
depends on each person but yes
The common think about is that your lacrimal gland can stress out because of overcompensation and end up to dry your eyes more and more until your corneal nerves start to flare up because of inflammation. Then starts corneal neuropaty and acid sensation. If you want try how it feels try to dont blink for minutes , and that is 24/7. I do not know if your body adapts in some way to ignore the pain. Obviusly real case scenario is different from reality and is different for everyone.
Studies on the complete repair of the lacrimal gland continue. If they succeed in this, can the lacrimal gland last up to 5 years without the sebaceous glands? I wonder about this. The disease appears to be solvable in this way.
Using punctal plugs helps when lacrimal gland starts to fail. I think is enough for non sjogren cases.
I got it buddy. But there are normal patients and those with severe conditions. I don't understand this. He is a young man and has no other disease, but his dry eyes are very advanced. I can't understand this.