Now my doctors are trying to get my on Hydroxyurea like hardcore. I'm still scared about it. I know some people have used it with lots of great results, but those side effects are no joke---AND NOT BEING ABLE TO HAVE CHILDREN?? That is some crazy shit.
Well, the main thing is that if you conceive while on Hydroxyurea, your child will have birth defects. I'm not even sure I want children in the future, but not having that option because of sickle cell is something I'm not willing to take.
So there goes another reason why I won't take Hydroxyurea. I'm hoping that taking a mix of Fagara, Nicosan and Arginine will be the right combo for me. My mom is gonna get me the fagara root and I still have to figure out where I'm going to get Nicosan from, maybe I'll pick it up when I go to Nigeria this summer.
Hope you are having a great weekend...I'm going to work 3 nights in a row and then have 6 days off...wish me luck!
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Greetings from your occasional DC area poster! I'm so sorry to hear that you've been under the weather. Terrible way to start the year. My husband has been having a few aches and pains himself as the temps have hovered around the low 20s in the daytime. I swear, we SO need to move to Florida. :o)
Your comment about Nicosan caught my attention. I've heard so much good stuff about it but of course, it's still in orphan drug status stateside and trials are few and far between. If you can get your hands on it this summer, I hope it works well. Seems like the next big development in SCD.
Best wishes to you and yours. Take care!
did u tell ur friends u had sickle cell or tell the whole school because have it and ppl dont know about it im 15 yrs old and ppl hate me cause im so so skinny and they think im a freak too with the yellow eyes and all i just don't want to end up all alone in high school with people yelling mean names and gossiping about me. Even my best friend is kinda embarrased about me and she is the only one who knows.uz
Hello Vixen,
I share your trepidation over the prospect of taking hydroxyurea and I sincerely hope you do not have to resort to using that for treatment.
Have you discussed the possible option of Nicosan with your hematologist? I would suggest gathering all of the clinical trial and study information about the drug and submitting it to your physician for review. If your doctor feels that the drug warrants a trial run with a patient there are special dispensations for the importation of non-approved drugs into the U.S. for compassionate use.
"Expanded access program (EAP). EAPs are typically designed to provide widespread access to a drug that has proven efficacy in clinical trials but is still awaiting FDA approval. They’re similar to standard clinical trials with a specific treatment plan and certain FDA requirements, but they have looser patient eligibility criteria. More than 23,000 U.S. cancer patients enrolled in an EAP for Iressa before it was FDA-approved, for example."
"Single patient use. This program offers an experimental drug to an individual patient, rather than a group. The FDA approves these uses on a case-by-case basis. Decisions are based on other treatments already available and information about the drug’s efficacy and potential toxicities."
http://www.curetoday.com/backissues/v3n3/departments/specialreport/index.html
Nicosan already has orphan drug status in the U.S. and the E.U. awaiting the submission of
Investigational Drug Applications and all the associated fees to set the approval process in motion. This should make it possible for your physician to obtain the medication if he/she is willing to go through the process with the FDA to campaign for a special dispensation for your use.
Let's get our heads together and make this thing work!
Email me
TheRaven-inexile@rocketmail.com
My daughter is 3 years old and has SS type. Docs have been trying to get us to experiment with hydroxea as earlier as 6 months. We have declined because of potential side effects. How were u affected as a child and what type are u ss or sc? you seemed to be a really strong young lady.
Tamika, thanks for the comment! I hope you check in more often! Yeah, it sucks starting the year off sick, but I'm so used to it now. I think the holidays always has me stressed. Even FL isn't that hot...try Arizona, lol.
Kem, I just wrote a post addressing you question. I hope it helps!
Raven, I don't think my docs are that proactive, this is just stuff I'm doing myself. I'm going to try to pick up a whole batch of it when i go to Nigeria this summer...that should do the trick.
Moma, I'm SS, and I wrote a few bits of my childhood in previous posts. I would recommend you looking into bone marrow transplant for your daughter...she has a better chance of being totally cured with BMT...or even gene therapy if no family match is available. I think BMT is actually a beter route than Hydroxyurea...but it's also arduous and difficult. Please look into it...your daughter has a better chance of getting it taken care of than us old fogies do. Smooches to her and please take good care of her!
Hi, I happened to stumble upon your blog, because I wanted to see how many people with sickle cell are letting the world know what it's like to live with this disease. Especially, since I have it as well, and wanted to blog about it also.
Anywho, I wanted to comment about my experience with Hydroxyurea. At first I did refuse to try the drug, because it's a cancer drug, but after doing some research on it, it's one of the milder cancer drugs out there. Plus, it kinda helps, that I'm studying to be a nurse. So, yeah..on to my comment. The only side effect that I encountered with this drug, and which seems to be the ongoing trend, especially amongst the fellow hydrea users in my clinic seem to be nausea, which is why it's given at night, and loss of appetite.
As far as not being able to have children, you can't not have children while on the drug, but that certainly does not mean you can't have children at all. If you do want to have children it is something that has to be planned, because as we all know women with Sickle Cell are considered "High Risk" once they become pregnant. For me, when i do decide to have children the doctors and I have come up with a plan, I will stop taking the hydrea and be off it for about 6-9 months before trying to conceive and then will have Chronic Blood Transfusion every month while I'm pregnant, and until I'm done breast feeding and then will go back on taking the hydrea.
This is by no means at all a way to change your mind, but just to let you know that your option of having children are still there.
-Cat
Hey Vixen,
I LOVE your blog. I actually found it by googling "Hydroxyurea" because I wanted to find out more about the drug. I have been taking it for about a month now and have experienced just about every side effect listed: Nausea, Drowsiness, Numbness in my fingers, I've also not had a period for a while now but my doctor claims its due to "stress". I haven't taken the drug or refilled it for the past week because I want to see if the symptoms go away. I was first prescribed it because I suffered from Acute Chest Syndrome and the Parvovirus all in one year! I went from a really health one crises a year that would hospitalize me to about one crisis a week or bi-weelky that hospitalized after I got the virus. I'm also in the med field too, I'm in medical school so I too am trying to make a difference.
Anyway, I just wanted to thank you for your blog, its really great reading other peoples accounts of the disease. And I wanted to ask you how you stayed strong and toughed it out through nursing school - lately my advisors have been encouraging me to take time off for my health, but I know my body better and want to get med school over asap. What did you do or say to the nay sayers? Especially since your sickness seems to be a bit more severe than mine is.. or was. Thanks, keep posting!
Hey Cat, thanks for your comments! I hope hydroxyurea keeps working for you. It's always been a thing about the lesser of two evils, either getting sick, or having to deal with alot of side effects. I know a few people on it that it seems good for; I'm still hella wary about it though.
Anon, welcome to the board. I wrote a post about nursing school just for you. Don't let sickle cell take your dreams from you, you can do anything you want! You just have to put in extra work and effort than others, and work your schedule around when you are sick. Keep doing your thing!
Thanks for the post Vixen, I saw it and thought it was in response to my post hehe. I also just saw your AVN post. I was worried I developed that because I've been having pain in my hips but its in the greater trochanter area and after many many MRIs there is still no diagnosis or clue. I have a 27yr old cousin who's suffering from true AVN in his hip right now and is most likely getting a hip replacement soon. He can barely walk and stays home a lot or just limps around. My advice is definitely put off the surgery until you can't take it any longer. What they don't tell you is that you'll have to get your replacement replaced after 20 years or so, which is normally not a problem in the elder patients its designed for, but with people our age that means 2 ore more of the replacement surgeries in a lifetime!! I'd love for you to contact me with any info or thoughts or just a what's up. You can email me at akinyos2@eden.rutgers.edu for now then I'll give you my permanent email. Thanks!
By the way if you do email me could you title the subject " SICKLE CELL WARRIOR", I get so much junk mail I've given up sifting through it. Thanks! Hope to hear from you soon!
Haven't been hospitalized since I started taking it. But I did gain a little weight.
Nicely written about Hydroxyurea & Infertility. I need this information so badly. However thank you
Russell Reed
arginine supplements
Great Article. I came across this blog while searching for reviews on Hydroxyurea. Side effects are a scary thing!
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