Desferal not working

Hey guys, I need some help. I was wondering if anyone can offer me different ideas on iron chelation as the therapy I'm on right now doesn't seem to be working.

Currently I am doing 750mg desferal push over 15-20 mins two times daily. My ferritin is somewhere in the 10000's. This number is really starting to frighten me. I used to do the 8hr infusion over night on the desferal, but we stopped that when I had an allergic reaction when the desferal was mixed with hydrocortisone to help with the itchiness. Then i was switched to Exjade, but with that I always feel nauseous and have really bad diarrhea all the time. So then they put me on what I am on currently.

The sad part is that when I was on the desferal (8hr) or Exjade my ferritin stayed between 6000-8000 even though I was never regular about taking my medicine. I didn't like the daily reminder of the drugs so I wouldn't take them. I never even comprehended how serious it would be if i didn't regularly take them. But last august I did a lot of reading about iron overload and thalassemia and everything because my doctor wanted me to take to some parent who had a newborn just diagnosed with thal major. While doing the reading, I was shocked to see what my actions were putting me at risk for. So i immediately started taking my desferal religiously.

In the past 4.5 months, I've probably skipped about a weeks worth of medication in total. So I don't understand why my ferritin won't fall below 10000. I know that I cant expect to see results immediately, but I don't understand why during the period I wasn't taking my desferal regularly, my counts stayed around 8000 and then when i did start taking my desferal regularly, they jumped to above 10000.

I asked my doctor to switch me back to the once daily 8hr desferal infusions. Hopefully that will help somewhat. Also after a couple months of that the doctor wants me to do a combined therapy of the overnight desferal and Exjade.

Is there anything else that I can do? Any other treatment options that people have tried that have been successful? Please let me know.

Thanks,
Archana

Hello Archana,

I think you have taken the 1st and the most important step of understanding what needs to be done. I have no experience with chelation personally but I think other members will be able to help in that regards.

From what I hear is that the ferritin counts are for a general idea of what options are for managing the ferritin level. I think you might want to get your Liver Iron Concentration done. Also, I am not sure if you can try Kelfer (also known as L1) which has been a well known drug to remove iron in countries like India, Pakistan.

I guess another good step if your asking for ideas from other thals. I am sure this site is a good one and can help you get to your goals.

Archana,

I am not going to beat around the bush. Your chelation program is not working for you. The push is inadequate and you will need a different approach. You need to be taking IV desferal 24/7. This can be arranged in a hospital setting or the IV can be placed at the hospital and you can take it home, like our member Umair did for awhile. Your ferritin is in a dangerous range and prompt attention is needed. It can be beat but it will take an aggressive approach. Your current level is a true danger to your heart and it must be addressed. I will also point out that Ferriprox, the best chelator for heart protection is available in the US under the compassionate use program for those who cannot tolerate desferal. A sense of urgency is required. I would also suggest that you be seen at Chicago. They can put you on a solid treatment program with proper annual supervision. I feel that this is essential for good health and ultimately survival.

Children’s Memorial Hospital
Division of Hematology/Oncology
2300 Children’s Plaza, Box #30
Chicago, Illinois 60614
Phone: (773) 880-4618
Fax: (773) 880-3223

I'm currently being treated at Rush University Hospital in Chicago because I go to school there for respiratory care. I dont know how well 24/7 infusions will work with me since I am in school currently. I am going to ask my doctors if i can get in IV or a pump started that i can just carry around with me all the time and keep going to school. I am in respiratory care program and I have no time what so ever to stop my studies. I know my health is important and I need to prioritize, but I have difficulty completely putting my life on hold for a disease that has already taken so much away from me. I need to hold on to school and my studies so that I can know what I am fighting for everyday.

I would suggest calling Chicago Memorial.
Contact Director: Alexis Thompson, MD (Absolutely wonderful woman).
Contact: Janice Beatty, (773) 880-4618

Explain what your situation is and see if they can either consult with your current doctors or if you can be seen by Chicago Children's and have a program put in place that your doctors can follow. Usually, the Centers of Excellence want to see a patient once per year, but they can design treatment programs that can be followed by other hospitals. They can also set you up with the required scans. You should have a T2* scan done on your heart and an MRI on your liver to assess the true iron load. Exjade and desferal in combination can work rapidly to bring down the iron load, but the desferal has to be working better than it is with your current program.

We are here to support you and we are going to walk this way along with you!!!

Welcome on board!

Dori
PS My body cannot stand desferal either (ulcers in my mouth and it started with a rash so watch it CLOSELY!) Neither L1 (deferiprone) and Exjade, but I take that last though.

Dore,

Do you also react badly to IV desferal?

I don't react to the desferal itself. I reacted to desferal mixed with hydrocortisone. Desferal on its own, I haven't had any bad reactions to except for the normal itchiness and redness at the site.

Dore,

Do you also react badly to IV desferal?

Yes, but I am going to post my answer in my today created topic. I have never had hydrocortisone. Why was it mix with that? It is a steriod?

O yes, I had itching too. Horrible itching. I also developed shingles. And they kept telling me it's an old ladies thing - I was 17yrs. When they inserted my port-a-cath my stitches fell out after only 2 days and the wound become infected and that's where I lost my first year of highschool. Since then I'd no choice but studying part time. The benefit is that you learn to know a lot of people. I was given SQ desferal when I was 4-6 years old but it unable to bend because of bumps.

Yes, but I am going to post my answer in my today created topic. I have never had hydrocortisone. Why was it mix with that? It is a steriod?

I had really bad itching at the site and I would end up scratching it out in my sleep. One time I scratched it out, didn't notice and rolled over onto the needle in my sleep. I got an infectious abscess from the needle. So the docs thought that if the mixed in hydrocortisone it would help prevent the itching. Hydrocortisone is commonly given for allergic reactions. It is a steroid.

Archana,

I hate to say this but you are in great danger and your priority should be your health right now.
Andy explained things very clearly and clearly stated that the best solution for you is the 24hour chelation either in hospital or at home with a 24hour use of the pump. Of course best thing would be to start Ferriprox and desferal together but -alas- in the USA ferriprox is not in use!
Do something immediately. Go to the hospital Andy has mentioned and let people there decide your chelation scheme. Surely your current chelation is not working, you need something else.
Your problem will be solved if you do somenthing now! Good luck,

Lena

Archana,

I agree with Lena and Andy. Your health is the most important factor for you.

Please refer to http://www.ferriprox.com/us/default.asp for Ferriprox Compassionate Use Program in the US

Also, Andy has wrote a post on this quite a while back : http://www.thalassemiapatientsandfriends.com/index.php?topic=1566.0

Thanks to everyone for the advice and concern.

I know that my health has to be a priority, because without health, there is no future. However, I have trouble reconciling myself to the fact that I would have to put my education and everything on hold for thal. It already controls so much of my life and has already taken so much away from me. The one thing that I have never let it get in the way of was my education, and I dont know if i am willing to let it get into the way now.

I am willing to get as aggressive with the therapy as possible so long as I am still able to attend classes everyday. If the doctors can figure out a way to put me on a 24/7 desferal IV and let me go to classes, I am more than willing to do that. If they want me to come in to the clinic and get checked everyday on Ferripox, I'm willing to do that. I'm just not willing to stop my classes.

I have worked really hard to get to where I am at right now. I have 2 more years before I am done with classes and school. Im not going to let anything get in my way of finishing these two years. If I put my classes on hold, I know that I will never get back to them. Being finished with school and finally being able to start working is the only thing that I have to look forward to in my life right now. If I stop school, then I no longer have that. I will no longer have anything to fight for.

I still have to talk to my doctors about the ideas that you have given me (the ferripox or IV desferal). My next appointment is on Jan. 26th, so I will talk to her then, if I don't get a call from her before then. I will post what me and my doctor decide after I talk with her.

Just an update, starting tomorrow, I am being switched to a 8hr. Infusion of desferal and I know its not near aggressive enough, but it will be a lot more effective then the 15-20 min. push.

Thanks,
Archana

without your health in good order you could die..and then the education will not matter..please love yourself enough to put your health first..education can wait..iron  overload can and will kill if not taken care of right away!

Archana,

Joanne is absolutely right on this. I am glad you are increasing the desferal, but please get a T2* or MRI ASAP so you can see what your true iron load is and if you are in immediate danger. The T2* will give you a clear picture of the iron load in your heart and from this the proper approach to your chelation can be determined. Ever since your first post about this, I can't help but think about the similarities to the case of Thoa, a young girl who was going to university in Florida and did not really understand the implications of her iron load. Neither did her family. I had spoken with Thoa on the phone while she was changing locations in Florida and she had planned on getting her chelation routine straightened out once everything was settled. I was shocked when I learned that this 21 year old girl living in America had suddenly passed away. After the fact I felt I should have been more clear about the dangers she faced because of her high ferritin and wished I had tried to do more to convince her. I cannot make the same mistake here. I want you to read her sister's words.

http://www.thalassemiapatientsandfriends.com/index.php?topic=2998.msg29696#msg29696

hello,

I am Thoa's sister and I thank you all for your support, ever since Thoa passed away it has had alot of impact on me and everyone else. That was how I became a member of this website. I never knew that this website existed and with all the info that I have been reading I wish I knew this back then. Only if i can go back in time. Lets just say my family and I was not well informed about Thals major or about thals period. Now I am helping myself to be more informed so I can help others to be informed somehow. Losing a loved one is the hardest feeling anyone can ever experience. Thanks again everyone..
Take care of yourselfs...

I am not doing this to frighten you. I am doing it out of responsibility and hope that you can turn things around quickly. I know it can be done, as we have counseled members Umair, Panos and Nur and they have all watched as their iron loads and gone from well over 10,000 to well under control. Please don't put off good health. It's the other things in life that can wait.