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Old Fri Jun 21, 2019, 09:01 PM
Meri T. Meri T. is offline
Join Date: Aug 2016
Location: Tokyo, Japan
Posts: 153
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
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 .

Female born 1965, diagnosed MDS RAEB1 in August 2016, watch and wait for 9 months. Sibling match - Stem cell transplant in June 2017. Some GVHD skin, liver, stomach, esophagus.
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