Thalassemia Patients and Friends
Discussion Forums => Thalassemia Major => Topic started by: Ayesha on August 21, 2009, 05:33:00 PM
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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?
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Ayesha,
only desferal is available to you? what about ferriprox?
Lena.
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I have tried ferriprox, had vomiting issues... lots of vomiting :(
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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.
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started with low dose :S
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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.
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no, ferriprox oral solution isn't available..
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Ayesha,
Have you ever had IV desferal and if so, does it also cause the skin allergy?
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Another question as well:
What did your doctor suggest to lower your ferritin?
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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 :(
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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
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i was told to use 5ml for two vials *1000 grams*, it never did any reaction before.. so now?
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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.
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will try this now..
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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.
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I agree with Andy. I delute 5 vials of desferal (2500) in 30 ml water and take it in 11 hours.
Lena.
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Ayesha,
sorry i m replying in hurry so cant read all the posts .. i will read and reply in detail later .. i just wana say that one of my friend experienced the vomiting prob with ferriprox and he asked me wat to do. .. i told him not to discontinue ferriprox and keep taking it , this prob will resolve soon when ur stomach will get used to digest this medicine ( i said this bcoze i had the same and after [bgcolor=#ffffff]1-2[/bgcolor] months this prob vanished ) he did wat i said to him and its 10 month since he is taking ferriprox and he never experienced this prob again .. hope this will help you ...
Bet Regards
Umair
sorry it was 1-2 months .. and last time i made a mistake 21-2 months .. so now i have corrected this :grin ..
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Thanks Umair for this helpful tip :wink :wink
manal
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Ayesha,
I hope that the problem will resolve for you very soon. All the best in getting your iron levels down,
Sharmin
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Hi Again Ayesha :
As Lena has said :
I delute 5 vials of desferal (2500) in 30 ml water and take it in 11 hours
i want to add that " at least 11 hours " ...
i alwayas been on 24 hour chelation plan when i was 2 vial a day plan and as well o 5 vials a day .. i never been on less than that ... i think i think increasing the time will also help improving chelation and also itching and allergy probleme .... when ever i try to finish my desferal quickly (in thal center ) and turn my drip fast i feel the itchiness as well that mean's more DFO in less time = allergy ... i always feelin itchiness in my arm near elbow when i do this .... so , 5ml water for 500mg deesferal is the best ... plz check this how i do make that possible to replace empty syringe to filled one to take 5 vials a day in 25ml water ..
http://www.thalassemiapatientsandfriends.com/index.php?topic=132.msg20528#msg20528
best regards
Umair
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alright thanks alot guys for replying, I have started with 5 ml for 500gram desferal, tomorrow i will contact my hematologist and ask for ferriprox.