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AA Aplastic anemia

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  #1  
Old Wed Nov 12, 2014, 11:08 PM
Rentzi Rentzi is offline
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Fluid retention

I am hoping some of you can shed some light on this. Since my husband finished the prednisone, he has been retaining lots of fluid in his lower legs. (Plus2). He has been elevating them and wrapping them with ace bandages. They go down some at night but fill up in the day. We are three months post ATG. His recent counts are wbc 1.8, hg 8.3, anc 860, platelets 40. It has been two weeks since his last transfusion but numbers seem stagnant. It is so hard to be patient. Oh, his creatinine was 1.6- slightly elevated. I think he was dehydrated from the traveling to Mayo clinic. Please advise on the swelling. Thank you.
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Old Wed Nov 12, 2014, 11:40 PM
DanL DanL is offline
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I have experienced some swelling from steroid use. The best success I have had is to rub myfeet nightly and use an upward stroking motion to push the fluids back toward the upper body - gently, drink water with lemon or lime juice added in, get some exercise daily to keep everything moving, and reduce salt intake - also check potassium levels as low potassium can cause retention. The lemon juice works as a natural, mild diuretic. My feet were swelling from a normal size 11 to about a size 13 daily for a few weeks, they are down to swelling just a bit each day, and the neuropathy that i was experiencing has declined substantially to where I am back on the treadmill daily. Also, there are some socks that you can get at Walgreens, I forget the name, but they are therapeutic, very tight socks that are supposed to help with fluid retention in the feet and ankles, they are worn during the day and removed at night.
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MDS RCMD w/grade 2-3 fibrosis. Allo-MUD Feb 26, 2014. Relapsed August 2014. Free and clear of MDS since November 2014 after treatment with Vidaza and Rituxan. Experiencing autoimmune attack on CNS thought to be GVHD, some gut, skin and ocular cGVHD. Neuropathy over 80% of body.
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Old Thu Nov 13, 2014, 01:31 AM
Chirley Chirley is offline
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I have swollen legs too because of the intravenous steroids. They settle a little overnight and swell during the day. Other than taking diuretic tablets (which I can't do due to low potassium and low blood pressure) I haven't been given any treatment advice except compression stockings.

Well, it's over 30 degrees C here at the moment and I've decided I'll just tolerate the leg swelling.

I may just try the lemon/lime in water though...thanks for that tip. Even though I do take extra salt to increase my blood pressure so I'm not sure it will work.

It can't hurt to try.
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Old Fri Nov 14, 2014, 12:10 AM
Cheryl C Cheryl C is offline
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Chirley - I believe that licorice tea (or perhaps just plain licorice) can raise the blood pressure.
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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 Fri Nov 14, 2014, 02:17 AM
Chirley Chirley is offline
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Thanks...I love licorice.
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Old Fri Nov 14, 2014, 02:57 PM
Marlene Marlene is offline
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Make sure it's real licorice candy though. Many have no licorice root in them and just use flavorings.

I love the stuff too.
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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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Old Sat Nov 15, 2014, 11:28 AM
dfantle dfantle is offline
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Licorice & Cyclosporine Contraindications

Cheryl, Chirley & Marlene, FYI, Licorice contraindicates with Cyclosporine (as well as some other medications) & and can cause serious side effects. You can find a number of posts on this on the Internet.

My pharmacist warned me about this when I first started taking cyclosporine. Just a reminder when people make recommendations on any site to always do your own homework to make sure there are no contraindications. This is because the person making recommendation doesn't know what medications you're on & what is OK for them may not be for others.
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Age 54; DX Heavy Chain (AH) Amyloidosis 6/10; AutoSCT 3/11; Amyloidosis remission 6/11; DX SAA 7/11; Horse ATG 3/12; Mini MUD SCT 1/13; Recovered from SAA 5/13 & feeling great

Last edited by dfantle : Sat Nov 15, 2014 at 07:35 PM.
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  #8  
Old Sat Nov 15, 2014, 06:36 PM
Chirley Chirley is offline
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Thanks....luckily, no cyclo for me.
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  #9  
Old Sun Nov 16, 2014, 02:04 AM
Cheryl C Cheryl C is offline
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Well said, dfantle. As I'm not on any medication at present I was not aware of that. Re licorice, I think the tea which is made from the root is the best option, as the other licorice has high sugar content and for those of us with low white cells this can compromise our immune systems.
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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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  #10  
Old Sun Nov 16, 2014, 12:26 PM
Marlene Marlene is offline
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We are fortunate that John's not on any meds either. Makes life a lot easier.
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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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