high ferritin level

i dont know wat MP is .. but i think this link wud b helpful for u, to decide that to use desferal or not ..
http://www.drugs.com/cons/desferal.html

Umair

MP is Mycoplasmal pneumonia. The incubation period lasts as long as three weeks. Caution needs to be exercised in patients with lowered immune systems. Komal, if your condition worsens, do not hesitate to contact your doctor. In most cases, the illness resolves on its own, but because thalassemia is involved, please be cautious and report any changes, especially any symptoms in your lungs, to your doctor immediately. I do not find and contraindication for desferal with PM. In fact, iron chelation has been studied in PM to see if it slows the rate of infection.

Some viruses are iron friendly and worsen if you chelate with desferal. I do not know whether this is one of them...

Lena.

Lena brings up a good point about infections. The Yersinia bacteria is always noted as one that thrives due to the siderophore that is provided by desferal.


The Prescribing Information from Novartis for desferal provides the following information.

http://www.pharma.us.novartis.com/product/pi/pdf/desferal.pdf

PRECAUTIONS
Iron overload increases susceptibility of patients to Yersinia enterocolitica and Yersinia
pseudotuberculosis infections. In some rare cases, treatment with Desferal has enhanced this
susceptibility, resulting in generalized infections by providing this bacteria with a siderophore
otherwise missing. In such cases, Desferal treatment should be discontinued until the infection is
resolved.
In patients receiving Desferal, rare cases of mucormycosis (Mucormycosis is the term used to describe fungal infections caused by fungi in the order Mucorales), some with a fatal outcome, have been
reported.

The Yersinia family of bacteria has been particularly singled out. Desferal should always be stopped during this bacterial infection.

I am continuing to search to see if there is any concern about desferal use during Mycoplasmal pneumonia infection. I will report back with anything I can find.

Thank you Lena for bringing up the question. It resulted in a long search, but finally I found what I was looking for.

http://journals.pasteur.ac.ir/Research_Microbiology01/Issue3-4/291.pdf

No iron uptake systems of the ABC transporter
type were identified in the genomes of Mycoplasma
genitalium and Mycoplasma pneumoniae.

ABC transporter type includes those bacteria that use siderophores as a method of obtaining iron. Desferal provides the siderophore in Yersinia infections. Mycoplasma pneumoniae does not use this method to obtain iron and cannot benefit from the siderophore that desferal provides. In theory, reducing iron should reduce the iron available to infections, but this does not work with all bacteria, as they have mechanisms for maintaining iron stores. In any case, desferal will not be a problem in the case of Mycoplasma pneumoniae infection.

Hey Komal,

I know you said (back in january sometime) that you didn't want desferal because it does take a long time, but have you considered push desferal? I used to be on the subcutaneous pump desferal which would take me about 8 hours to inject. After that I switched to the Exjade when that came out, however, I had a lot of bad side effects that I couldn't deal with as I am in college and didnt have the time to deal with them. So I switched back to the desferal but now I dont do the 8 hour pump once a day. Now I take the same dose, but twice a day and I push it in manually and it only takes about 5-10 minutes depending on how fast you push. So all together it takes me maybe 30 minutes everyday for the desferal. And It really works. Out of all the treatment options I have done for my iron, this method has gained me the best and fastest results. When I started this method of treatment my iron levels were in the 8000-10000 range. Within 4 months of started this treatment I was down to the 3000-5000 range. For me that is a very good drop. None of the treatments I did before worked as well, not even the desferal over 8hrs.

Archana

Hi  Patel,
       I  never  listen about  push  desferal,30  minutes  really  amazing.But  u  know  doctors  said  take  desferal  for  long  time in order  to  get   good  results.
Now  am  taking  desferal  for  24hrs  its  tough  but  have  to  do.
Andy  whats  your  opinion  about  push  desferal?
komal

Komal,

when desferal got into circulation, some 30 years ago, its first use was that of pushing it with a syringe. I remember taking it that way in my behind. But that was because pump was not yet discovered.After pump got into use, it was the only way - the best way - to administer desferal.

I would say keep on with your chelation schedule according to your doctor.

Lena.

I have heard about people using a bolus pump for desferal, but this is specifically warned against in the prescribing information from Novartis.

http://www.novartis.com.au/PI_PDF/dsf.pdf

Precautions with administration of Desferal:
Desferal should not be given in doses higher than recommended. The drug should not be
given at concentrations higher than 10% as this increases the risk of local reactions.
Intravenous administration of Desferal should be undertaken only by means of slow
infusions. Rapid intravenous injection may lead to severe hypotension and shock (e.g.
flushing, tachycardia, urticaria and collapse). Rates of infusion should not exceed 15
mg/kg/hr.
When given by intramuscular injection, it may be necessary to administer the dose at more
than one site in order to allow sufficient dilution and distribution of the injection volume, and
to minimise pain on injection (see “DOSAGE AND ADMINISTRATION”).
For subcutaneous infusion, the needle should not be inserted too close to the dermis. Desferal
is not formulated to support subcutaneous bolus injection.

Lena is the voice of long experience with chelators. You would be well advised to follow her advice about chelation.

Thank you, Andy.


I got my MRI results today. It seems o.k.
T2* heart : 31,6
T2* liver   : 34 and  0,9 mgr Fe/gr.

I have given it a thought about how to proceed. Many of you, I am sure, would suggest to give it a break but I do not think this is the right thing to do. So, I'll go on like this:
12 Ferriprox per day and twice a week desferal of 5 vials per time. I think this will maintain a negative iron balance, don't you say?

Lena

I cannot read those results, but since you say they are OK: 

Lena,

Since you are so closely monitored, any fine tuning of your chelation plan can be done as needed. Your scores are excellent, but taking a break would probably only lead to catching up later on. And I agree, why allow any iron build up at all? Keep us posted on your continued progress.

My thoughts exactly, Andy. Why allow any iron to build up and have to catch up later on?
The key word is "maintenance". It's like putting up weight after a strict diet. The secret  is not only to lose weight but to keep it down as well. Same thing.
I have often read in this site that people (patients and doctors as well) consider they should break chelation for a while after having lowered the ferritin level. That's wrong - in my opinion, it leads to iron build up, as one cannot give transfusions a break, too. Cannot stop them.
Anyway, I'll keep on with my plan. It has been working successfully for so many years.

Lena.

hi
my ferretin level now is about 190  so my doc say slow your desferal and use it 2 time in week with 4 vial and 10 ml watter
I use 8 pill of L1 too but I use desferal 3 or 4  per week with 5 vial and 12 ml watter
whats your opinion? I do as my way or sth that Dr say?

Right now your ferritin is quite low so desferal twice a week, along with the L1 should be enough. If your ferritin does rise, you can add one more day of desferal per week.