Thalassemia Patients and Friends

Discussion Forums => Working Towards a Cure => Topic started by: POAR on December 29, 2018, 09:28:39 PM



Title: Thalidomide + Hydroxyurea combination
Post by: POAR on December 29, 2018, 09:28:39 PM
Hi Andy,
Recently we met Dr Vijay Ramanan in India, we heard that lot of Thalassaemia patients under his treatment became transfusion independent as they are able to maintain Hb around 8 to 9 .

He prescribed combinations to 8-10 medicines which includes Thalidomide, Hydroxyuera , Aspirin, Wheat grass and some more along with Deferasirox.
We are bit confused if it is safe for a 9 year old kid with such a big list of medication.

Our son is under regular blood transfusion since the age of 6 months and current frequency of transfusion- 3 weeks. His Ferritin level is around 2000

below are the list of medicnes:

1. Thalidomide 100 mg Daily
2. Aspirin 75 mg / Thrice a week
3. Wheat Grass
4. Deferasirox 800 mg daily
5. Glutathione 500mg
6. Hydroxyuera 500 mg  / Thrice a week
7. Multivitamin Tablets (C2B plus) Daily
8. Vitamin K2 Capsules (SAP-K2) Daily
9. Thal RV (L-methylfolate 1000 MCG+Resveratrol 100 MG) / once Alternate day
10. Injection - Erythropoietin  (SAP-epoeitin 5000 IU) - 1\once weekly for 8 weeks.

we are very confused , is it safe to start such combinations of medicines and also will it impact any other aspects of health ?

As per our previous doctor it can cause overgrowing of bones causing some facial bone deformation if bone marrow works more to maintain Hb, so we are bit confused.
We were settled with one treatment procedure and now moving into another mode of treatment as we always wanted to get rid of transfusion.

we really need suggestion from your side to help us in decision making.


Title: Re: Thalidomide + Hydroxyurea combination
Post by: Keru my angel on December 30, 2018, 07:26:43 AM
Dear Andy

We too need your advise as the same medicines are advised to my 9 year old daughter when we met the Dr. 2 days back. We are going to start the same from 2nd Jan.
Need your advise/suggestions please. Thank you.


Title: Re: Thalidomide + Hydroxyurea combination
Post by: POAR on December 30, 2018, 10:24:17 PM
Waiting for your suggestion before starting the medication.
Please help.


Title: Re: Thalidomide + Hydroxyurea combination
Post by: Andy Battaglia on January 01, 2019, 02:41:09 PM
First thing I want to say is to correct the misconception about the bones expanding, causing malformation that is obvious in the face. That happens when the bone marrow is overactive, but futile in raising the Hb. The bones do expand, which also makes them weaker. This does not happen when the Hb rises, which is the ultimate goal of this therapy. Once the Hb rises, bone marrow activity reduces.

You have to make the decision to try this therapy. I will say that Dr Ramanan has had excellent results with many patients, but as with all programs that require the use of drugs, some people will have side effects that prevent them from continuing the drugs. The only way you will know is to try. If the children cannot tolerate the therapy, then they should resume transfusion.

I feel that I must also mention that Dr Ramanan's success has led to other doctors using the same or similar therapy. These doctors include Dr Chandy, one of the more prominent thalassemia doctors in India.


Title: Re: Thalidomide + Hydroxyurea combination
Post by: POAR on January 01, 2019, 07:50:04 PM
Thanks Andy. We are planning to start the therapy. As we are moving to new way we were little concerned, your words will help.
:)


Title: Re: Thalidomide + Hydroxyurea combination
Post by: Keru my angel on January 02, 2019, 12:34:52 AM
Thanks so much....
We too are starting the same.


Title: Re: Thalidomide + Hydroxyurea combination
Post by: POAR on January 02, 2019, 08:21:29 PM
After the first day of starting the medication he woke up with severe drowsiness and nausea. He had more than 9 hour sleep last night but not able to get up , even after having bath he is unable to walk normally due to dizziness and having vomiting sensation when tried to having breakfast. He went to sleep again.

Are these symptoms expected?


Title: Re: Thalidomide + Hydroxyurea combination
Post by: nitarora on January 03, 2019, 03:31:45 AM
Hi,

We are trying this therapy too since last 3 years and quite satisfied.

I can say is these symptoms aren't expected. Kindly discuss there more with Dr. Ramanan if any issue you feel is severe one.

Kindly be some what more patient & try. May be with God grace Your son will get rid of pain of regular transfusions with this.

Pl. include Morning Pranayama & Yoga Asans further in your son schedule. It really helps a lot in gaining Momentum for child & supports for HB Improvement.

Thanks..

Nitin



Title: Re: Thalidomide + Hydroxyurea combination
Post by: POAR on January 03, 2019, 09:21:25 PM
Thank you so much for your words. We had contacted dr yesterday and he asked us to continue the therapy. We are trying to give dinner early in the evening so that medicines can be taken early. He is completely fine today. Probably initial few days we have to allow him more sleep after hectic year end schedule of us. Just hoping things will be alright soon.
Thanks all for your prayers.


Title: Re: Thalidomide + Hydroxyurea combination
Post by: Keru my angel on January 04, 2019, 11:20:15 PM
Dear Nitin
Can you pls give some details about your experience.
What were the readings etc during the first four months. And were you off BT immediately after starting this therapy.
How often you need to visit Pune now?
Pls advise...it will be immensely helpful. Thanks.


Title: Re: Thalidomide + Hydroxyurea combination
Post by: Andy Battaglia on January 05, 2019, 02:43:34 PM
It may take some time and some experimentation with when the meds are taken to see if it can be tolerated.


Title: Re: Thalidomide + Hydroxyurea combination
Post by: nitarora on January 08, 2019, 04:51:10 AM
Hi Keru my angel,

My experience I already shared on Dr. Ramannan therapy and Kindly start therapy with your kid along with extremely good diet plan along with pranayama & yoga..

It will work ..

If any further info reqd you can mark mail to me on nitin.28.arora@gmail.com, will discuss too if reqd..

BR//
Nitin



Title: Re: Thalidomide + Hydroxyurea combination
Post by: sanjuna on July 29, 2019, 04:17:40 AM
Hi I am using this medicine for last 1.5 years, can good response also. my kid three years old, initial stage of treatment within 1st 6months, he got many times sick fever which makes me to stop medicine for couple of days, during that time his hb fall down to 4, take transfusion. once again continue with medicine his hd leads morethan 9. appx 9 to 10 months he was fine, no transfusion. once again continuesoly 2 months he was sick due to 3-4 times fever. which makes him so week hb dall down to 6.

but I cont... with medicine , feels good result.


I like to know any faced this type experience in between the treatment/ thereaphy reuires to take blood transfusion?


Title: Re: Thalidomide + Hydroxyurea combination
Post by: Andy Battaglia on August 10, 2019, 03:28:48 PM
One bit of advice. If the child becomes sick or develops a fever, stop the meds until the illness is gone.


Title: Re: Thalidomide + Hydroxyurea combination
Post by: Eagle on October 11, 2019, 02:03:52 AM
Hello Everyone!

I've been using Hydroxyurea for 3 months along with multivitamins, L carnitine, wheatgrass and kalonji. Pre Hydrea I was transfusing 3 washed packed cells every three weeks at a pre TX hb of approx 9. Ferritin was at 4k and I was using Asunra which was stopped as my sgpt level was 3x higher than normal. Hydrea was started when lfts came to normal ranges.

After using hydrea for a little over 2 months my hb started showing signs of improvement. But at the same time I started feeling overly weak and fatigued even at the hb of 8.5. To the extent that I start gagging when I walk and getting tired while brushing teeth. So I had my lfts and ferritin done. Lfts were 3 times higher than normal again and ferritin rose to 15000  :-\. My ferritin has never gone this high and it was quite surprising as I have had half the number of transfusions than i would normally have.

My doctor thought it could be a passing infection so he told me to get urine tests done which came back normal. Also during this time I was quite weak so had two packed cells transfused at an hb of 8.2 which should have brought my hb to around 10.2
 However when we checked HB after 4 days hb was 8.9 :-\. 1 whole bag of blood gone missing somehow. At which point the doctor tested for antibodies which came back negative.

Sorry for such a long story. But to conclude it.
1. Unexplained rise in ferritin
2. Unexplained drop in hb
3. Unexplained weakness even at hb of 9. Tachycardia. Muscle weakness. Lower back pain.

I've stopped hydrea for now and am waiting to get lfts done in a few days. In the meantime I have no idea what's going on. And I've stopped all supplements except wheatgrass and kalonji.

What should I do.


Title: Re: Thalidomide + Hydroxyurea combination
Post by: Eagle on October 13, 2019, 10:40:45 AM
Ferritin has further gone up to 35000. ???
WBC is 3. Hemoglobin is 10.8. Last TX was 4 days ago at 8.9.

Lfts have further elevated slightly. All are between 350 and 500. Bilirubin is 3.0.
Liver and spleen have also gotten bigger.

As I said I've stopped Hydrea but I don't know if that's the cause. Still have no idea why ferritin is so high.


Title: Re: Thalidomide + Hydroxyurea combination
Post by: Andy Battaglia on October 19, 2019, 02:11:25 PM
Eagle.

You mentioned that you stopped taking Asunra. Are you using any chelator currently?


Title: Re: Thalidomide + Hydroxyurea combination
Post by: Eagle on October 20, 2019, 02:13:14 AM
Dear Andy,

All meds were stopped once lfts started increasing. I had a fever going up to 102 as well. But now it's down to less than 100.

The hepatitis A test came back positive a couple of days ago. Now doctors telling me to keep myself hydrated properly.

I'm also a little worried about getting transfused. After both last transfusions my lfts and bilirubin have shot up. Plus hb broke down around the same time after TX. Maybe it's being caused by the Hep A virus.  :huh

Thanks for your response Andy. Really appreciate it.


Title: Re: Thalidomide + Hydroxyurea combination
Post by: Andy Battaglia on October 20, 2019, 10:55:15 AM
The Hep A may also be causing the ferritin reading to rise. It may not just be from iron. I would definitely suggest that you take milk thistle to help restore your liver.