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MDS Myelodysplastic syndromes

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  #1  
Old Sun Mar 16, 2014, 09:28 PM
Cheryl C Cheryl C is offline
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MDS - Dry eyes?

Has anyone else experienced dry eyes with MDS?

I don't have an infection but over the time I've had MDS I have experienced increasingly dry eyes, especially during the night. This prevents me even opening my eyes at times when lying down. My GP has prescribed a gel which helps but I'm wondering if this is something that I just have to learn to live with. (The GP doesn't know much about MDS).
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Dx MDS RAEB 10% blasts + hypogammaglobulinemia, Sep 2011. Jan 2012 BMB - blasts down to 2% w/out treatment so BMT cancelled. Re-diagnosis RCMD. Watch and wait from Feb 2012. IVIg 5-weekly. New diagnosis Oct 2019 AML 23% blasts in marrow, 10% blasts in peripheral blood.
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  #2  
Old Sun Mar 16, 2014, 09:54 PM
triumphe64 triumphe64 is offline
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Have your doctor check for Sjogren’s syndrome.

http://www.inflathrace.gr/sites/defa...20concepts.pdf

A lot of these diseases overlap.
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Dallas, Texas - Age 81 - Pure Red Cell Aplasia began March 2005 - Tried IVIG - Then cyclosporine and prednisone. Then Danazol, was added. Then only Danazol . HG reached 16.3 March 2015. Taken off all meds. Facebook PRCA group https://www.facebook.com/groups/PureRedCellAplasia/
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Old Mon Mar 17, 2014, 02:11 AM
Cheryl C Cheryl C is offline
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Thank you - that was very helpful and at the same time a little scary. I looked up Sjogren's on Wikipedia. I also have dry mouth problems at night and an increased tendency to cystitis so will discuss this with my haematologist on my next visit.
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Dx MDS RAEB 10% blasts + hypogammaglobulinemia, Sep 2011. Jan 2012 BMB - blasts down to 2% w/out treatment so BMT cancelled. Re-diagnosis RCMD. Watch and wait from Feb 2012. IVIg 5-weekly. New diagnosis Oct 2019 AML 23% blasts in marrow, 10% blasts in peripheral blood.
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Old Mon Mar 17, 2014, 08:51 AM
triumphe64 triumphe64 is offline
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Quote:
Originally Posted by Cheryl C View Post
Thank you - that was very helpful and at the same time a little scary. I looked up Sjogren's on Wikipedia. I also have dry mouth problems at night and an increased tendency to cystitis so will discuss this with my haematologist on my next visit.
That is what Venus Williams has, and she has resumed playing in tennis tournaments.
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Dallas, Texas - Age 81 - Pure Red Cell Aplasia began March 2005 - Tried IVIG - Then cyclosporine and prednisone. Then Danazol, was added. Then only Danazol . HG reached 16.3 March 2015. Taken off all meds. Facebook PRCA group https://www.facebook.com/groups/PureRedCellAplasia/
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  #5  
Old Tue Mar 18, 2014, 11:01 PM
Cheryl C Cheryl C is offline
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Aha! Thanks for the encouragement ... I need it since I'm trying to edit a book at present and blurry eyes are making it more difficult than usual.
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Dx MDS RAEB 10% blasts + hypogammaglobulinemia, Sep 2011. Jan 2012 BMB - blasts down to 2% w/out treatment so BMT cancelled. Re-diagnosis RCMD. Watch and wait from Feb 2012. IVIg 5-weekly. New diagnosis Oct 2019 AML 23% blasts in marrow, 10% blasts in peripheral blood.
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  #6  
Old Tue Mar 18, 2014, 11:45 PM
newfintexas newfintexas is offline
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Dry eyes

Hi Cheryl. With hubby - his MDS brought along Glucoma. He puts drops in his eyes each night and hasn't really had a problem with them since. Might be good for you to get a full eye exam to make sure all is well there?
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  #7  
Old Wed Mar 19, 2014, 06:09 AM
Cheryl C Cheryl C is offline
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Had the full eye examination with my optometrist last week - no glaucoma. He recommended drops which didn't help at all. The Lacri-lube prescribed by the doctor works the best but my eyes stay blurry for a long time after using it. Today was better than yesterday so I'm hopeful.
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Dx MDS RAEB 10% blasts + hypogammaglobulinemia, Sep 2011. Jan 2012 BMB - blasts down to 2% w/out treatment so BMT cancelled. Re-diagnosis RCMD. Watch and wait from Feb 2012. IVIg 5-weekly. New diagnosis Oct 2019 AML 23% blasts in marrow, 10% blasts in peripheral blood.
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  #8  
Old Wed Mar 19, 2014, 08:05 AM
Marlene Marlene is offline
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Cheryl,

Have you looked into using omega 3 fatty acids. They can be helpful in treating dry eyes. If the oil glands around the eyes are not flowing well, then the tears evaporate faster. Increasing omega 3 can help with that.

I know there's some controversy regarding the use of the EFA with low platelets but we found there was no impact on John's counts or his bleeding times when he is taking it.

Also, an imbalance in estrogen/testosterone can impact your eyes too.

Hope you get some relief soon.
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of July 2021 HGB 12.0, WBC 4.70/ANC 3.85, Plts 110K.
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  #9  
Old Wed Mar 19, 2014, 10:10 AM
Barbara K Barbara K is offline
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Hi, Cheryl

I don't have MDS but do have mild blepharitis, which is a condition where the oil glands around your eyelids tend to get clogged up, leading to a range of problems, including dryness. In addition to increasing my Omega 3's, which I agree does seem to help (and, again, I don't have to worry about platelets simultaneously), I also use a warm, wet compress on my eyes for about 4-5 minutes morning and night, and that seems to make a big difference. I soak (and presoak) a clean washcloth in hot water and then press it to my eyes. It's supposed to help unclog the oil glands and thus improve lubrication. There are also some other strategies they recommended I could use, including swabbing my lid rims with a Q-tip to help remove debris. In more serious cases they will prescribe an antibacterial ointment, but my situation isn't that serious (yet).

Of course, these ideas may be of no use to you depending what's causing the problem, but they have helped me--and I, too, do work that is very labor-intensive on my eyes.

Hang in there!
Barbara
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  #10  
Old Wed Mar 19, 2014, 09:59 PM
Caregive Caregive is offline
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I was also given that info for my eyes. I did the soak for ages but have stopped for no reason. Your posting will get me up and going again. I'm not the person with MDS but am his caregiver.
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  #11  
Old Sat Mar 22, 2014, 09:43 PM
Cheryl C Cheryl C is offline
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Thanks for all these helpful responses! Will try the Omega 3 supplements and the warm washcloth. (At present I only take a multi vitamin and extra Vitamin D). My platelets, while lower than normal are usually over 100 so I can probably handle a small reduction if that occurs.
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Dx MDS RAEB 10% blasts + hypogammaglobulinemia, Sep 2011. Jan 2012 BMB - blasts down to 2% w/out treatment so BMT cancelled. Re-diagnosis RCMD. Watch and wait from Feb 2012. IVIg 5-weekly. New diagnosis Oct 2019 AML 23% blasts in marrow, 10% blasts in peripheral blood.
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