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Old Fri Jun 21, 2019, 09:01 PM
Meri T. Meri T. is offline
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Join Date: Aug 2016
Location: Tokyo, Japan
Posts: 140
Smile 2 years post transplant : doing well.

Hello everyone.
Would like to update you on my 2 years post transplant. My doctor is tapering my medication very slowly, especially prednisolone.

Prednisolone withdrawal. From 4mg to 3mg. Just a lack of one mg, I had a bout of diarrhea, nausea, restless legs, headaches, itchy skin, which lasted around a week. The second week looks better. It will get better next week as my body is aquainted with the lack of prednisolone. Dan, I am still on cyclosporine, so no vaccinations yet.

My medication daily:
Prednisolone 2mg
Cyclosporine 3 times a week (25mg)
Itraconazole 200mg
Antibiotics 3 times a week
Vitamins
Fosamax for bones per week
Entecavir 0.5mg

My skin cGVHD is better compared with last year, seems it takes time to burn itself out.

My blood counts are great:
WBC 6.0
RBC 4.38
Platelets 210
Hgb 14.4

What I learnt at the checkup was that you have to absorb these as normality: wash hands, gargle, don't try buffets/old food, brush teeth, floss, use sun screen, cover yourself outside, stay away from sick people, use lotion every day for skin care, wear gloves and a mask while gardening, be careful of mold, etc. It has to become your normal way of life while on cyclosporine.

For my part, I don't eat out so much, no swimming, no hotsprings, no camping, ... maybe next summer .

Meri
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Female 53, diagnosed MDS RAEB1 in August 2016, watch and wait for 9 months. Sibling match - Stem cell transplant in June 2017. Some GVHD skin.
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