me and my issues

okay after a very long time, am here to post about me

ferritin high: 7000
taking desferal 4 vials (2000 gram) 5 days a week

taking anti-allergic because am getting itching problem while using desferal

SGPT high since last year, never took it seriously, finally after getting scolding landed to liver diseases doctor, he told me that my LFT report isn't normal too

have to get done Ultrasound to check fatty liver, if its not fatty liver then they would go for liver biopsy

have been told to lose weight by endocrinologist and liver diseases doctor, advices please?

Ayesha,

only desferal is available to you? what about ferriprox?

Lena.

I have tried ferriprox, had vomiting issues... lots of vomiting

Ayesha,

When you tried Ferriprox, did you slowly raise the dose or did you take the full dose right from the start? Many people find it easier to get used to if they start out slowly, just as with Exajde.

started with low dose :S

Ayesha,

have you tried Ferriprox oral solution? it is supposed to help in that direction...patients who face stomach problems. Is it available in your country?
It is a pity you can't have the benefits of Ferriprox. However, if you are systematic with your desferal chelation you can still  lower your ferritin. I remember when I started with desferal - 30 years back when desferal first presented itself - my ferritin had reached 8.000. But I protected myself, starting to chelate regularly. This is what you must do. Stay alert and chelate yourself. Do not stay behind.

Lena.

no, ferriprox oral solution isn't available..

Ayesha,

Have you ever had IV desferal and if so, does it also cause the skin allergy?

Another question as well:

What did  your doctor suggest to lower your ferritin?

Andy: its 4th time I got reaction issue, never had it before... nor with IV or pump

Lena: just desferal, I haven't tell him about reaction, didn't get time

http://www.springerlink.com/content/uce04vq0y9w3rdap/

P. Cianciulli1, F. Sorrentino1, L. Maffei1 and S. Amadori1
(1)     Ospedale S. Eugenio-Cattedra di Ematologia-Università "Tor Vergata"-Centro Microcitemie. Piazzale dell'Umanesimo 10, I-00144 Rome, Italy, IT
(2)     Ospedale S. Eugenio-Cattedra di Ematologia-Università "Tor Vergata"-Centro Microcitemie. Piazzale dell'Umanesimo 10, I-00144 Rome, Italy, IT
Abstract    In some patients compliance to subcutaneous desferrioxamine therapy is reduced because of allergic symptoms. Effective drug desensitization consists of bringing patients to tolerate the same mode of administration. We evaluated three thalassemic patients with severe allergies to desferrioxamine. Each patient received weekly three prefilled infusors with desferrioxamine 4 g/48 m1/48 h for s.c. therapy. Follow-up was performed for 12 consecutive weeks. During follow-up no allergic events were noted. The s-ferritin levels decreased from 2583 μg/l±485 to 1916 μg/l±275 (mean decrease 25.8%, p=0.038). Compliance to the infusional system was excellent. Our results show that continuous infusion of desferrioxamine using a new infusional delivery system is effective in preventing allergic reactions and in reducing iron overload.

Basically, the desferal is diluted more in this method but taken over a longer period, resulting in much better iron reduction and desensitization of the patient to desferal. Try diluting the desferal more than you currently do, but take it for a longer period of time. This does work. You can get more chelation by taking the same dose of desferal over a longer period of time and because it is more diluted, the allergic reactions lessen and hopefully desensitization to desferal will also take place. In the reported cases, desferal was used in the ratio of 1gm per 12 ml water. This is easier to do with the balloon pumps that use pre-mixed desferal, but try diluting the desferal more than you are now. With ferritin over 7000, you really should be taking desferal for longer periods, so try diluting more and keep the benadryl handy if you do get the skin reaction.

I do wonder what people are using in this regard. How much water per gram of desferal when doing subcutaneous injection? The actual recommendation is 10 ml per gram and I know many patients do not dilute it this much.

Se  http://dailymed.nlm.nih.gov/dailymed/drugInfo.cfm?id=10074 and look under Table 4: Preparation for Subcutaneous Administration

i was told to use 5ml for two vials *1000 grams*, it never did any reaction before.. so now?

Every set of instructions I can find, recommends 5 ml water for each 500 mg desferal, so 1 gram of desferal should be used with 10 ml water.

Why now? It happens sometimes. It may be something that has developed long term, but the solution to desensitizing one to desferal is to dilute it more and take for a longer period of time. As I mentioned, this is actually more efficient at removing iron because the chelation takes place over a longer period of time.

will try this now..

I was going to say the same as Andy. It was said that I developed the allergy when not only the frequent, but also the concentrating was increased. Be careful & keep us up to date. I hope the itching problems will vanish soon.