Hb is still dropping

[pranute]

Hello Everyone,

My mother Haemoglobin level was dropping. She got diagnosed with MDS (RA). She underwent un-related donor bone marrow transplant in 2nd Week of Feb 2017. Its been almost 6 months, still her hb levels are dropping. We are facing the same problem as before transplant i.e. of Hb. Moreover her wbc and platelets are dropping some what which was not the case before transplant.

After transplant cmv virus was a also detected & she took medicine for it.


I wanted to know how much does it take to recover. The doctor is saying that she is doing fine and it is going to be fine but we are a bit worried.

[Neil Cuadra]

pranute,

Is she taking the immunosuppressant cyclosporine? It may be called Sandimmune in India. It's a challenge for doctors to get the dosage just right, and to know how quickly or slowly to reduce the dosage over time. Sometimes tapering cyclosporine too quickly can cause blood counts to crash.

That happened to my wife. After trying to lower her dose and having bad counts, she had to have an increased dose, then try tapering again later. Figuring out the best does and the best schedule is as much an art as a science for doctors.

I don't know if this is related to the cause of your mothers lower numbers, but it's a possibility that you could ask the doctor about. I'm glad her doctor is confident that she's still doing OK overall in her recovery.

[pranute]

Hello,

She had her transplant in Singapore. She is taking tacrolimus. And doctor is adjusting the doses.

[Neil Cuadra]

Originally Posted by pranute

Hello,

She had her transplant in Singapore. She is taking tacrolimus. And doctor is adjusting the doses.

The same issue can occur with tacrolimus (Prograf). How much you lower the dose, and when, can affect blood counts and feel like a setback even during a successful recovery.

[pranute]

She is at 0.5 mg in morning and 0.5 mg in evening since last 2 days.
Earlier she was taking 1mg in morning and 1 mg in evening since 2 weeks. And before that she was taking other dose.

I want to know that her does bone marrow takes time ro recover. Her hb is still dropping.

[Neil Cuadra]

Your mother's bone marrow may be recovering even though the tacrolimus is keeping her counts down. I understand that you want to know if she is indeed recovering, but it's hard to tell.

The starting dose usually depends on a patient's weight. Doctors don't want patients on immunosuppressants any longer than necessary, but tapering the dose often has to be done quite slowly. Going from 2mg/day to 1mg/day is a significant reduction, especially if she was on more than 2mg/day only a few weeks ago.

Sometimes patients need transfusions because of low counts during transplant recovery, so don't be surprised if that happens. My wife needed a few transfusions. Immunosuppression was making her counts drop, but it was 2 to 3 months after transplant, not nearly 6 months later as in your mother's case.

I suggest asking her doctor if her tacrolimus dose needs to be increased again to maintain her counts, or if she should continue at the current dose. (I'd be very surprised if they reduce her dose again very soon.) And ask what other factors might be affecting her counts.