Ferriprox-exjade combination therapy

Thank you both for your kind words. I wish the best for you,too.

Hi Lena,

Have u had ur T2* MRI ?

Yes, of course, last May. I have an MRI every year.One of the routine exams of the year.

Hi Lena,
You will be starting at the lowest level with Exjade won't you? My youngest had that episode with Exjade as he was on maximum
dose for his weight.I started him on the lowest but he was told to take maximum from the start. May have worked for him if he stayed at a lower dose as a doctor who specialises in thal later told us that he was taking too much Exjade. His ferritin was also 147 when he started. I'm worried if he is told to start it again.
I hope it all goes well for you.

Yes, of course, last May. I have an MRI every year.One of the routine exams of the year.

And , I assume it is clear, right?
Would u please , share the scan result?

Hi Emby,

well, if your son started with a high dosage of exjade, it should be realistic why he has those side effects. My doctor gave me now 10mg/kilo and in the future we will maintain the 15-18 mg/kilo dosage for me. if all goes well with the exams, that is. We'll see.

Hanumant Aashrit,

yes, it is clear as follows:

T2* heart 31, T2* liver 27, LIC 1,1.

 

Hanumant Aashrit,

Really... I myself think I could do it better.

Hi Lena,
My son did not start with the high dose...his new consultant said he should...but it was new med for him and it made sense to me that he starts at a low dose so I started him on the lower dose..after a month or 6 weeks I increased it a little, then about 2 months he was on full dose. I dont think his consultant is in line with thal treatment. Another doctor was called in after all that happened with
my son who knows well about thal, said that dose was too high. He should have maitained at a lower dose. You are very lucky to have the consultant you have and I can tell that you steer the way for your treatment..you know whats good..for you :-)

Lena, I posted a question on another post...can you help me please. Both my boys Bone Density Scan show the bones to be weak but they have only been given Vit D. The younger one was given 30000iu a day for 6 weeks and now is on a maintaining dose, 2000iu, and my older son has only been on a maintaining dose the same as his brother but his report came back showing osteoporosis. Both their vitD levels are about 90. Both are very well . Shouldn't they be taking something to help strengthen the bones?   
 

Hi Emby,
Sorry for not having posted earlier, I have just seen your post.
Well, I can only tell you this: Our doctors give us vit. D together with Calcium on a daily basis.  Of course, if osteoporosis is severe, you need to take a special medicine. I think only vit D is not enough, let alone if you take it for some weeks only.

Dear Andy and all,
these past 3 days I exprienced an episode of combination therapy of Ferriprox-Exjade toxicity, starting with myoclonies (=uncontrolabe hand fly) and lethargic situation. I went directly to the hospital and there they evaluated my neurological situation and let me go because they did not find anything. They sent me to a general practioner-pathological dept and there they diagnosed white blood cells 30000 and yesterday 40000 in spite of the antibiotics they gave me. Also transaminases were reaching SGOT  147 and SGPT 196, but after a liver u/s my liver, pancreas, kidneys were clear. They sent me home and told me to search for white blood cells increace through my Unit.

I start to think this is due to the new combo therapy I started a month ago. Have you heard any other patient having wbc increace because of exjade? I wonder.

Lena,

I am sending your post to a doctor who has experience with this chelation combination. I will revert back to you once I get a reply. It may be that at your low iron load, you are using more chelation than required, but I will see what the doctor has to say.

Lena,

I have heard back from the doctor already. I explained about your low ferritin and that your heart and liver iron levels are under control. He had this to say. 

She should not be on 2 with such low iron levels.  The high white count however may be due to infection so it is appropriate that she take antibiotics.  I have not heard of increased white cells with Exjade.  She should just stay on Ferriprox.

Thank you, Andy.

I agree with the doctor's saying. However I am adding another thought of mine:
Is it altogether impossible to see such a side effect of high white blood cells when in combination of ferriprox-exjade, as long as there are no clinical trials up to now for ferriprox-exjade combination therapy? It might be a symtom first shown up to the bibliography of exjade. This is what I think, and this because I have no fever, no other infection symtoms. By the way, my white blood cells have lowered to 25000 yesterday and I am on Augmentin antibiotics. Of course, I have stopped all chelation therapy and will keep that way for a month. No chelation at all, my doctor wants my body to clear up of ferriprox and exjade. After that, I will keep to the lower dosage of ferriprox, 75mg/kgr.

thanks again,
Lena

I think that in your case, a chelation vacation can help. You may see a normalization in your white cell level and your iron load is basically non-existent, so a vacation shouldn't be hard to overcome once you begin chelating again.