Fertility and hydroxyurea

Dear all

I read that one of the side effects of using hydroxyurea is that you lose your fertility either men or women. So how can i give this to children. Does this mean that my son will not be able to have children if he started it? I know that some of those side effects might happen or they might not. but this means i am in a gamble and i might not be ale to know unless my son is a grown up.

Another thing, when someone takes hydroxyurea, does he become dependant on it forever? Or he can take it for a while and then test if his body will maintain the increases HB or not??

Hope anybody knows

Manal 

that is exactly what our hemo.said manal. he said he was going to keep olivia on it for 1 year and then take her off to see if she can maintain her own hgb. so i think that is possible

In preliminary studies on hydroxyurea use in sickle cell, it does appear to be both safe and effective.

From http://adc.bmjjournals.com/cgi/content/full/81/5/437

We conclude that hydroxyurea did not induce any pronounced toxicity in a cohort of 101 children with sickle cell disease followed for a median of 22 months

From another study using hydroxyurea in sickle cell patients

http://www.medicalnewstoday.com/medicalnews.php?newsid=26256

After four years of hydroxyurea therapy, the concentrations of Hb, HbF and the volume of red blood cells were significantly increased in the children receiving hydroxyurea. Moreover, the HbF level often exceeded 20 percent of the total amount of Hb, Hankins said. “In children who weren't treated with hydroxyurea, the level of HbF declined significantly,” she added. “The fact that HbF levels rose in babies treated with hydroxyurea suggests that the drug is effective in babies, as well as in adolescents and adults.” ...Babies receiving hydroxyurea also weighed more and were taller than those untreated children 2 to 5 years old who had been observed in a previous, long-term national study called the Cooperative Study for Sickle Cell Disease. The average weight gain for babies in the St. Jude study was more than 4.5 pounds per year; and the gain in height was more than 3 inches...“Hydroxyurea could also prove to be an effective way to improve the care of sickle cell anemia patients who live in underprivileged areas of the world,” said Russell E. Ware, M.D., Ph.D., director of the Hematology division of the Department of Hematology-Oncology at St. Jude. “Treatment with hydroxyurea requires periodic checkups, but the medication is relatively inexpensive and should be adaptable to countries with limited resources,” he said.

Hydroxyurea produces the same effects in thalassemics as far as raising HbF levels and much of what can be said about its use in sickle cell is also true for its use in thal.

The warnings about fertility seem to be mostly aimed at women who may become pregnant and in the one study, a woman on hydroxyurea became pregnant and gave birth to a normal baby. The warning is intended to let women on hydroxyurea know that they should not be taking it if it they wish to become pregnant as it can cause fertility problems. This does not seem to be a permanent effect.

Hydroxyurea has been shown to be safe over a period of six years. It may prove to be safe over the long term with further studies. After observing the dramatic results in Olivia Mary, I would suggest trying it in intermedia. It should be tried before transfusion, as once transfusions start, dependency begins.

Dear Christine and  Andy

Thanks a lot for your replay.
 
Today i went to the doctor to determin whether my son will start the hydroxyurea or not and she agreed that she will start it when his spleen becomes bigger than the measurment she took today
( bigger by two points at least ). His HB was 6.4 and it seems that the highest number for my son is 7 and his lowest is 6.  She checked his growth and found that  his height increased two centimeters in two months, but his weight did not.but generally his growth is within the normal range according to the American growth chart. Actually, growth is what the doctor really cares about.

Back to the hydroxyurea, i told her about my concerns and she told me that people who take have to have there liver and kidney monitered every three months and if they are affected the medicine will be stopped.
Concerning fertility, she told me that she can not gurantee, but she hadn't face it before. On the contrary, she had a patient who has been taking it for 18 years and he is married and got one child.
concerning having low WBCs and platlets as a result of lowering the immunity( therefore getting infected very easily especially that my son goes to school), she said that it also should be monitered with the liver and the kidney and if the decrease dramatically, the medicine should be stopped.
In short, all depends on the patient's reaction to the medicne and people differ.

Chrissy, concerning the dependency on the medicine, she told me that it is not like transfusion( that is to say that you don't depend on it once you take it), but she said that you can not maintain once you stop.  she said that if it is taken daily for one year for example and the HB increased, then you start to take day after day and see if the body can maintain the increase of HB when you decrease the dose . But to stop it completly, the body will never be able to maintain the increased HB by itself. That was her opinion.

Anyway, i wanted to give you all an update

Take care
Manal

Hi Manal!

I'm Kathleen, Olivia's mom. You sound just like us and what we went through with Olivia. Her hb was 6.3 and we were going out of our minds!!! We are so happy that we started Olivia on the medication. She is doing  so good. She eats all day where before it was a struggle to get her to eat one meal. Her hb is now a 9.2 . She is no longer pale she no longer has a yellow color to her eyes she is so beautiful!!!! ! We have had her liver checked and is it fine all of her other levels are good....she is not showing any negative side effects at this time. I do have concerns about long term use but for now she is healthy and we are trying to take it day by day. I do still have my days where I question if I am doing the right thing for her, where will we be in one year and I have days when I am scared . Then I think we have had a great positive 3 months  she is happy and driving me crazy ( in a good way beacuse she is into everything and thinks she is 21 yrs old and not 2 1/2) and she has not needed a tx. I hope this helps and your son does have a chance to give it a try. All our love

Kathleen

Dear Kathleen

Thanks a lot for your words.  They are so encourging and makes me feel that i should not be afraid to give it a try.  I too wish that we are doing the best for our children. 
Kahleen, have you ever thought of bone marrow transplant to Olivia? And did the doctors discussed with you the future of thal intermedia children and what we should expect?

Again thanks a lot for your advice and encourgment

Take care

Manal

Hi Kathleen,

I know there are questions about the long term use of hydroxyurea, but in the short term, since Olivia Mary is so young, I think keeping a high Hb is essential. Many of the biggest probems thals have are development related, as low Hb can cause so many problems as a child develops. Maintaining her Hb now is well worth it as she will have a chance to develop normally during these years. Once a child passes puberty, physical development slows and and the higher Hb is not as critical an issue in regards to growth. You've seen first hand what a difference there is in her since she is maintaining a higher HB. At this point in her life I feel that possible side effects are outweighed by the benefits of hydroxyurea use.

Does anybody know about the possible side effects of Hydroxy Urea treatment ?  Hydroxy Urea treatment is also referred as a slow chemotherapy treatment...slow becoz amount of dose is very less as compared to normal chemotherapy. Does that mean it can have same side effects as chemotherapy, if used for long time?
So far we know that it may(or maynot) affect fertility and decrease WBC count. But other than these, do we know of other possible side effects?

Thanks,
Hallu

Chemotherapy is a term that covers many drugs with many different side effects. Because of the stigma of the chemotherapy word, the term is normally avoided when talking about hydroxyurea use in thalassemics. Hydroxyurea has none of the typical side effects of the harsher drugs often used in chemotherapy and the dosage used in thal is lower than what is used in chemo.

Studies have shown few if any side effects in thal patients using hydroxyurea but more studies need to be done both to determine long term safety and also effectiveness in major.

From http://www.bloodjournal.org/cgi/content/abstract/87/3/887?ck=nck

Hydroxyurea increases hemoglobin F levels and improves the effectiveness of erythropoiesis in beta-thalassemia/hemoglobin E disease...Almost all patients responded with an average increase of 33% in Hb F levels... there was also a slight (10%) but statistically significant increase in hemoglobin levels and an improved balance in alpha:non-alpha globin chains ratios. The side effects were minimal in most patients, although these patients tended to tolerate a lower dose of HU before significant myelosuppression than has been our previous experience in sickle cell disease. One splenectomized patient died of sepsis during the trial. We conclude that increased Hb F production in beta-thalassemia/Hb E patients, with an improvement in the alpha:non-alpha globin ratios and, probably, the effectiveness of erythropoiesis, can be achieved using HU. Longer trials of HU in this population, including at other doses and in combination with other agents, appear warranted.

The further research into hydroxyurea and any other drugs or substances that can raise HbF levels is very much warranted and much more emphasis needs to be placed on this approach to thalassemia. Eliminating the need for transfusion is the most important thing that can be done for thals as it also eliminates the iron build up and risk of disease that comes from transfusions. We must demand that more research be done in this field, as it is known that this approach does work and that there are other drugs that can also be used to increase HbF.