To transfuse or not to transfuse

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Offline Andy Battaglia

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Re: To transfuse or not to transfuse
« Reply #30 on: April 04, 2015, 08:12:09 PM »
That is a good regular dose. I would suggest stopping during the fever and resuming with half a dose for a few days to make sure the fever does not return, and then raising it back to 2 ml/day.
Andy

All we are saying is give thals a chance.

Re: To transfuse or not to transfuse
« Reply #31 on: April 04, 2015, 10:41:03 PM »
Thanks Andy,

We will do and will keep you posted.

Regards,

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Offline Tamizhan

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Re: To transfuse or not to transfuse
« Reply #32 on: April 10, 2015, 05:16:54 PM »
Dear Andy,

In the month of January my HB was 8.9. This month result shows, HB is 8.4.

For the past 1.6 years I was having hydroxyurea 500 mg OD. This time doctor advised me to increase it to 500 mg BD, morn & night. My weight is 58 & height is > 163.

Whether my body weight can withstand the HU increased dosage.
Does HU have any side effects?

And doctor asked me to check my blood HB level every 15 days as HU dosage is increased. since HU may also cause reverse action.

Regards,
Tamizhan
I never give up!

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Offline Andy Battaglia

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Re: To transfuse or not to transfuse
« Reply #33 on: April 10, 2015, 05:38:47 PM »
Tamizhan,

What is OD and BD?
Andy

All we are saying is give thals a chance.

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Offline Tamizhan

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Re: To transfuse or not to transfuse
« Reply #34 on: April 11, 2015, 04:21:38 AM »
OD - once a day. morning only.
BD - both the time. Morning & night.
TDs - morning, afternoon & night .

Previously I was having hydroxyurea 500 mg morning only.
Now doctor asked me to take hydroxyurea 500 mg morning & night.


Regards,
Tamizhan.
I never give up!

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Offline Andy Battaglia

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Re: To transfuse or not to transfuse
« Reply #35 on: April 11, 2015, 02:31:19 PM »
Tamizhan,

The dose is a bit higher than the 15 mg/kg that I prefer, but still under 20 mg/kg daily. Hydroxyurea does have some side effects, which are mostly mild when they do occur. It may also affect fertility but that is reversible when the drug is stopped. If you are concerned about suddenly doubling the dose, try alternating days. Take 1000 mg and then 500 the following day. Try this for a week or two. If you have no ill effects, take 1000 mg daily in two doses as instructed. Also take folic acid with the drug and wheatgrass in some form. L-carnitine and magnesium are also both known to increase the effects of hydroxyurea.
Andy

All we are saying is give thals a chance.

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Offline Tamizhan

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Re: To transfuse or not to transfuse
« Reply #36 on: April 11, 2015, 04:19:59 PM »
Thank you, Andy for your reply.
I'll follow the same.
I'm having calcium 500mg, folic acid 2.5 mg & vitamin -e.
Happy weekend, Andy
I never give up!

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Offline Tamizhan

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Re: To transfuse or not to transfuse
« Reply #37 on: May 03, 2015, 04:47:27 AM »
Dear Andy,

I took 1000 mg of hydroxyurea for past 20 days from April 10th to may 1 st.
I.e. 500 mg in the morning and 500 mg in the evening Hoping my HB will increase.

But when I tested my Hb on may 2nd, HB has reduced to 7.1.

Jan 3rd - Hb 8.9 : I took 500 mg hydroxyurea morning alone.
March 29th - Hb 8.4 : I took 500 mg hydroxyurea morning alone.

April 10th to May 1st, took hydroxyurea 500 mg in the morning and night.
May 2nd blood test : HB 7.1.

I'm taking folic acid 5 mg once in two days.

Before having hydroxyurea in 2013, Hb was around 7.4 +.

Kindly advice, can I take 500 mg of hydroxyurea in the morning only. Or can I stop hydroxyurea completely?
Thanks in advance.

Regards,
Tamizhan.
I never give up!

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Offline Andy Battaglia

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Re: To transfuse or not to transfuse
« Reply #38 on: May 06, 2015, 02:51:36 AM »
I think you need to give the higher dosage a little more time before making a decision. If you can get wheatgrass tablets, add them to your daily routine.
Andy

All we are saying is give thals a chance.

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Offline Tamizhan

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Re: To transfuse or not to transfuse
« Reply #39 on: May 06, 2015, 06:12:33 PM »
Sure, Andy. I'll tty to get wheat grass tablet from amazon. As doctor advised, I've reduced to 500 mg.
I never give up!

Re: To transfuse or not to transfuse
« Reply #40 on: May 07, 2015, 01:17:59 AM »
Hello friends,

Today we went for transfusion since my sons HB went down to 5.5 two days back from 6.9 last month, it was 5.8 today before the transfusion.

Doctor said this drop may be.related to sickness or infection, so we will continue HU and monitoring. If thing don't get better in the upcoming months then we will go to regular transfusions.

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Offline Lokkhi maa

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Re: To transfuse or not to transfuse
« Reply #41 on: May 07, 2015, 02:29:22 AM »

Dear Fahed_FN,

Don't worry.Everything will be ok.All the best...
Lokkhi Maa

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Offline Sharmin

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Re: To transfuse or not to transfuse
« Reply #42 on: May 10, 2015, 05:08:18 AM »
Dear Fahed,

It is best to maintain your child's hemoglobin near 10.0  - it should not drop below 9 in order for your child to thrive.  Giving your child several transfusions, closer together until a stable hemoglobin near 10 is achieved is important. 

Please keep us posted,

Best,

Sharmin
Sharmin

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Offline Andy Battaglia

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Re: To transfuse or not to transfuse
« Reply #43 on: May 10, 2015, 04:30:10 PM »
Fahed,

The Hb is very low. If it does not soon stabilize, regular transfusions should commence.
Andy

All we are saying is give thals a chance.

Re: To transfuse or not to transfuse
« Reply #44 on: June 11, 2015, 05:43:49 AM »
Hello friends,

After 35 days from the last transfusion my son's HB was 8.1 yesterday. I dont know if this is because he got transfued last month or because he is on HU, in all cases it was a good news for us as it was not expected.

 

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