Ferriprox-exjade combination therapy

Dori,

why did you go back to Ferriprox? I missed that.
You can take Ferriprox depending on your kilos. The type goes:
kgs X 75/500 (smaller dose) or
kgs X 100/500 or kgs X 120/500 when on monotherapy (highest dose. I do not recommend it)
 I can give you my doctor's mail in a private message, Dori, so you can ask her whatever you want providing full details of your chelation treatment.

Lena

If you could to do that I would be very happy Lena.
When I told my doctor about my kidney pains he told me to restart deferiprone. Now I think my month long treatment with diclofenac has also something to do with. He diagnosed me with bursitis last week. I did not we had things like this. That such a tiny things can create cruel pain. But I know deferiprone alone would not be my solutation to tackle my fe.

Hi everybody,

i would like some advice on combi therapy Ferriprox-exjade.

Unfortunately i am too sensitive to exjade and after it clears the iron load on my liver the creatinine goes up and i cannot manage it anymore even   on a very low dose. On the other end ferriprox alone keeps my ferretine very low, heart clear but the iron overload in the liver went from 1.9 to 9.8 in the space of less then a year. so i started exjade again and cleared it up in 6 months.

Now i have to decide between ferriprox - exjade (5 days ferriprox 8 tbs a day and 2 day 1000mg exjade) or ferriprox and desferal.  I would be keener on the first.

Can anyone tell me any real side effect and exjade- ferriprox combination.   

Thank you very much for any help that you could give me

Hi Astrid,

The combination has not been studied widely, but there have been no further side effects noted from using combination of Ferriprox and Exjade. I think the fact that you are not planning on taking them on the same day will help to minimize the side effects of each drug in general as neither will be 7 days a week.

Hi Andrew,

thanks for your reply... i will start the combination in a couple of weeks and fingers crossed it will be ok

Astrid,

My son was on exjade/desferal therapy for a year and it worked wonders for him.  He is currently on exjade alone.  I expect that exjade/ferriprox combination will yield good results - I hope that you do not experience any negative effects.  One piece of advise I have is to begin slowly, at a low dose.  I find iron accumulates quickly but seems to decline slowly.  When beginning a new chelation plan - whether with a single drug or combination - it is best to start on a low dose, and if well tolerated then to increase as needed. 

Best of luck,

Sharmin

thanks Sharmin i really appreciate your advice as it is a bit of a new thing and there are not other people where i am at the moment with whom i can share my concerns.

Astrid,


has your doctor suggested this kind of chelation therapy or you decided on your own? I think I have read a clinical trial in Italy on ferriprox-exjade combination therapy. Is that true? and which were the results?


Lena

Hi Lena, I haven't heard of it. At the moment I still take only Ferrirpox and my fe levels stay stable at 2000. But from monday it will increase as I am going to receive 4 units of ery's in a very short time to fix my crashed hgb level. The fun of a hemolytic crisis.
Good luck Astrid. Please keep us up to date. It's a neat plan of chelation, I must admit.

My levels are between 2600-3000 now and I started with this combination therapy at friday. first dose of Exjade with it was way too high and now I take 250mcg tablet at night. But I am stilll itching. If this does not improved in a week I might go to 125mcg. We'll see what happens. Hopefully I can tolerate it and it starts working too. Thank you all for your help. Without you I would not know that this would be possible! (today is sunday)

There again, fresh start with Ferriprox-Exjade combination therapy. Starting on a very low dosage of exjade (half the required dosage) and the utmost dosage of Ferriprox given on monotherapy.

I only hope there will be no side-effects.


Lena

Good luck Lena. I too hope you see no side effects. I think that eventually, we will see doctors recommend that all patients strive for ferritin levels like yours. I truly believe normal to low ferritin should be the goal in transfusing patients.

Thank you, Andy, for your kind support. You have always been there.

Well, I think so, too. I believe that ferritins at the level of 500 should be past history. I know it sounds absurd but this will be the future in Thalassemia. I start with 147 right now and let's see how it will proceed.

Best of luck Lena, i definitely believe having iron levels below 100 is the key
To good health in thalassemia.  The risk of iron accumulation - especially the liver would be minimized if iron levels are normal - along with endocrine function and immune function.

Your compliance and diligence definitely sets the precedent for others and should motivate them.

All The Best  Lena,
Happy to know it's 147.