Thalassemia Patients and Friends
Discussion Forums => Iron Chelation Corner => Topic started by: baal on February 15, 2009, 07:56:48 PM
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hi all
i become this days my last ferritin-count....
and i must sy thats it is really amazing.....
august 2008 i had 8.800 ferritin and feel
very unconforteble.....
at that time i met theodora(smurfette)
in the chatt-room and she told me about
the L1 she start to take.....
after this day i start for myself...with one
tablett...after some days i take 2....after weeks
i took 3....then 4 ....and now....i take....
5 pills in the morning...5 before lunch...and 5 more at the afternoon...
plus every 2cend week for 7days desferal iv in the row....
AND KNOW.....serumferritin 3600
i never ever has such a small amount of fe....
i think i will hold that system on....
by the way...i get know the ip6 kapsules from my drogist...
it was 200 mg kapsules...
did i had to take 1 or more every day? panos
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That's great news Panos. Are you taking the Ferriprox oral solution yet? Take 2 capsules of IP6 on an empty stomach with a full glass of water. Do not eat any protein foods until at least 30 minutes have passed. And keep up the good work. I am really happy to hear how much your ferritin has dropped. L1 also helps protect your heart so there are benefits that you won't see with ferritin tests but you will see with T2* or SQUID.
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Hi Panoz ,
:congrats buddy , You done a gr8 job .... well done .. keep up the good work up buddy and you will see more amazing results , i m realy hapy to hear abt the drop in your ferritin ... wat is your weight buddy ??.. L1 also helps protect your heart so there are benefits that you won't see with ferritin tests but you will see with T2* or SQUID.
:agree keep it up .. :clapcheerboy :clapcheerboy :thumbs :thumbup :yay
Best Regards
Take Care
Umair
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Hey Panos,
:yaaaaaay
That is really awesome!!!!
:congrats
Keep the good work going on! Don't stop, but continue the treatment and soon you will reach the magical 1000 :cheer
Best wishes,
Dore
p.s. Are you from Greece?
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hi andy and nice friend
thx for reply....
yes at home i take the liquid L1...
and outhome i take the tabletts....
buddy my weight is about 82 kilo.
i raissed up since i have diabetes too (since october2008)
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hi dore
yes i am a greek....
but i lived in germany...
not so far away from u...
to the netherland border its about 2 hours...
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Guten Abend,
In that case we are nearly neighbours ;) You see, I live in Apeldoorn. That's 1.5 to 2 hours from the frontier :) We pass usually the frontier by Arnhem. Where near the frontier do you live? I did attend concerts in Arnhem Oberhause and Köln in the past :shy And we went around Chirstmas to Münster. I dont speak German very well though, but I do understand it pretty good. I start to love Germany more and more :).
Too bad you did develop diabetes :( Umair has diabetes as well, so there is at least one person who can tell you more about that.
Auf wiedersehen,
Dore
p.s. I dont have thal, but the rare anemia pyruvate kinase deficiency. It is an North-European anemia. I get every 3 weeks a transfusion. Chelation therapy goes slow, because my child doc did not treat it (very well). I started with the intensive therapy when I was 16, so I am doing this since 5.5 years. I am allergic for all meds, but this fourth try of Exjade is going well. I got a fe. of 2400.
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That is awsome news.... Please continue the good work.
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Congratulations Panos
manal
:congrats :congrats :congrats :congrats
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Panos,
Thats the great news indeed :thumbs :hi5boys Thats how every thal should be compliant with the chelation.You are an inspiration :) .
Zaini.
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Hi Panos ,
I m sorry to hear that you got diabetic , but its good to hear that never thought to give up and you raised up ur self and strongly determined to fight not to give-up .... keep this spirit alive in your self and be strong always, as you are now .... yeah ,as dore mentioned, i m having diabetes and managing it ( trying ) with insulin .... variation and fluctuation of BSLs in diabetes is a normal thing for thals and non-thals, but its dificult to controle with thalassemia , as Hep-C also play's its role in ups and down of BSL ..... but with time its settle's up and you got to knowing the how many units/dose to take on wat level of BSL .... sooo feel easy and never b afraid to it ... as your S.Fe is decreasing you will see more changes and your diabetes will bcome more easy to handle .. you will see the noticeable decrease in the need of inuslin when your S.Fe will decrease more ... here is a thread that i started a couple of months ago, when my S.Fe was decreasing , its about the change in the "decrease of S.Fe and need of insulin" .... i hope it will help you understanding alot ...
here is the link : http://www.thalassemiapatientsandfriends.com/index.php?topic=1870.0;highlight=diab
( i m Diabetic since april 2006 ) , i m always heere to help, soo please feel free to ask if you want to know about anything ....
Best Regards
Take Care
Umair
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Wow ! Amazing! :congrats :hi5boys
I hope I really could try Ferriprox myself. Been dying to try it for months now but no doctor would prescribe it yet, since no medical representatives would introduce them to the pills. Although they have it launched it on our local group already, still they have very small knowledge about the Ferriprox. :dunno ?? :wah
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Baal,
That is great progress! It shows what committment to chelation can do in a short time. I think that you can further slash your iron levels in no time.
Best of luck,
Sharmin
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Panos,
This is wonderful news indeed. Keep it up.
Take care
Jade
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newsflash
today i got transfusions (2 units)
and of cause some results:
leuco 13.00
hb 9.2
hämatokrit 28.0
thrombos 658.000
crp 0.33
natrium 141
kalium 4.01
calcium 2.30
chlorid 100
kreatinin i.s. 0.62
glucose 149
billirubin 1.4
GOT 65
alk phosp. 113
LDH i.s. 178
ferritin 3275
F E R R I T I N 3275 isn it crasy......
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It is so crazy that you should eat lots of yummy cake! :wink
As for the other results: you should also post the normal ranges that your hospital use. Otherwise it would be difficult for use to give a judgement.
Best wishes from your neighbour :boogie
Dore
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Panos ,
Your ferritin is going down gradually and its a good news :) .This is a pre transfusion hb or post transfusion hb ?
Zaini.
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thx dore and zaini
the resultsn are before tx of couse....
andy and the rest...
did u have ever heard of an antioxidant
called Idebenone
its not to get in europe
but in the states....
must be good
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The Dutchies have this stuff already: http://www.supersmart.com/nl--Specifieke-producten--Idebenone-45-mg--0259
http://www.vitavie.nl/content.php/nl/135/productinformatie?ProductID=14
English:
http://www.smart-drugs.net/info-idebenone.htm
I have searched in medical database, but could not find any article. So I got only wikipedia (http://www.myhq.com/public/a/l/alper/) and it's own website (http://www.myhq.com/public/a/l/alper/)
Dore
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Panos,
As far as i am able to understand,its a synthetic replacement of CO-Q 10. Which is an antioxidant.
From http://www.antiaging-systems.com/a2z/idebenone.htm
Idebenone is a synthetic variant of one of life's most essential biochemicals, Coenzyme Q10 (Co Q10). Co Q10 is an important antioxidant component of the lipid (fatty) membranes that surround all cells, as well as the lipid membranes surrounding the various organelles ("little organs"), such as mitochondria and microsomes, inside cells.
Zaini.
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Idebenone is related to CoQ10 and is a good antioxidant with special value to the heart.
http://www.antiaging-systems.com/a2z/idebenone.htm
Idebenone is one of the safest and most potent antioxidants known to man
Idebenone is a cerebral stimulant that increases brain energy levels and has a rejuvenating effect on the whole body
Idebenone is a synthetic variant of one of life's most essential biochemicals, Coenzyme Q10 (Co Q10). Co Q10 is an important antioxidant component of the lipid (fatty) membranes that surround all cells, as well as the lipid membranes surrounding the various organelles ("little organs"), such as mitochondria and microsomes, inside cells.
Co Q10 is also an important member of the Electron Transport Chain (ETC) within mitochondria, which are the ‘power plants’ of the cell. Most of the oxygen we breathe is used inside the electron transport chain to produce much of the ATP bioenergy that powers virtually every activity of our cells and bodies.
When blood flow is seriously reduced to any part of the body - as in a heart attack, stroke, trauma, shock or chronic poor blood circulation - cellular/ mitochondrial oxygen (O2) levels quickly drop in the affected region. Free radicals quickly damage cell/organelle structure and function, as well as rapidly halt ATP energy generation by the electron transport chain. Brain and spinal cord cells are especially prone to such damage, and may be irreparably damaged or even destroyed within minutes.
Studies have shown that in such circumstances Idebenone prevents the free radical damage and maintains relatively normal cell ATP levels. In short, while Idebenone can effectively substitute for Co Q10's positive and life essential functions, it doesn't have Co Q10's free radical producing feature which occurs under hypoxic (low oxygen) conditions.
Idebenone's potential benefits fall into five categories:
1. Anti-aging
2. Energy enhancement
3. Cognition enhancement
4. Organ protector
5. Protector against excitatory amino acid neurotoxicity
Anti-aging benefits
The mitochondrial power plants produce over 90% of all cellular ATP bioenergy. They are also generally the richest sites in Co Q10 (or Idebenone). Mitochondrial DNA (mtDNA) allows mitochondria to reproduce themselves.
Over the course of a lifetime our mtDNA becomes ever more damaged, and the mitochondria produced become ever more ineffective in their energy generation.
Studies comparing heart tissue from young people with that from elderly people have shown almost no significant mitochondrial dysfunction in young hearts, with significant, often severe mitochondrial dysfunction in elderly hearts. The cells that are most susceptible to mitochondrial energy depletion with advancing age are the brain, skeletal muscle and heart muscle cells.
Idebenone, therefore, provides an anti-aging effect here in several ways. Unlike Co Q10, even under the low oxygen conditions that may occur periodically over a lifetime, Idebenone will serve as a powerful mitochondrial free radical quencher, lessening the ever-increasing mtDNA damage that occurs with age. Idebenone will work even better than Co Q10 within the electron transport chain to keep energy production high, even under hypoxic conditions. This is especially critical to brain and heart cells that may be rapidly damaged during low ATP production episodes that occur due to poor tissue oxygenation.
A variety of studies using brain cells (animal and human) have shown Idebenone's ability to enhance brain structure and function. These tests have demonstrated that Idebenone can enhance serotonin production, even under far less than optimal conditions, such as in patients with cerebrovascular dementia.
Dosage:
Take 30mg two or three times daily.
Side effects:
Possible gastrointestinal disturbances, dizziness, headaches, anxiety and uneasiness and sleep alterations.
The section in bold shows how this supplement is relevant to thals, who live their lives in a state of low oxygen.
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Andy,
Would Idebenone be something that I could recommend to my friend - as a supplement that she can give to her son, who has epilepsy?
Sharmin
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Sharmin,
If your friend is taking anti-epileptic medicines it is advised to not use Idebenone, because it can interfere with the function of the drug.
http://www.thehealthierlife.co.uk/natural-remedies/alternative-therapies/co-enzyme-q10-more-powerful-vitamin-e-00342.html
Idebenone
* Idebenone is up to 100 times more effective than vitamin E
* It preserves the small, but very important, amounts of genetic material (DNA) found inside the mitochondria. Damage to this mitochondrial DNA is believed to be one of the primary causes of ageing.
* It is best used together with co-enzyme Q10 for a much more potent action
Warning: Idebenone is best avoided by people who are taking anti-epileptic drugs. As it may interfere with the actions of the drugs and reduce their effectiveness. It is well tolerated with other prescription-only medication. Side effects are rare and mild (Pharmacopsychiatry 2002, 35(1):12-18). Examples are nausea and stomach upset.
The normal dose is 45 mg a day for general anti-ageing protection. For treatment of existing diseases the dose is increased to 45 mg or 90 mg three times a day. Because Idebenone stimulates the production of energy, it makes people 'buzz' with vitality and this may cause problems with sleeping. So, to avoid difficulty in sleeping, it is best to avoid taking it late in the evening or at night.
If your friend is not taking anti-epileptic meds, then it may be of some value to take Idebenone.
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Andy,
My friend's son (12yrs old) is now and he has been off of medications since August 2008. He hasn't had seizures since 2006. There was some abnormality in his eeg this fall. The docs think that he may outgrow epilepsy completely, have some reoccurance, and in rare cases it could become worse. I hope that he outgrows it completely, and I believe that a proper diet and supplements can help him along. The description of Idebenone, above sounded like it would be beneficial to him.
Thanks again Andy,
Sharmin
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here is a small update
unfortunately after my fe went down to 3200
i got an infect in my porth....
so i have to stop the IV desferal and i only
take the L1 (18 tabs)....
in that few weeks i got 6 units of blood (transfusion)
and my fe goes to 3500....
so i have to believe that 1 chelator only would not
bring the fe down....
not in my situation (2 units blood in 12-14 days)
i have to axept that only combie-therapie bring
the fe down....
since monday my porth have become infect-free
and i start again with both....
4 gr desferal and 9 gr L1....
lets see what happend....
panos
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Hi Panos,
its nothing to worry about , be faithful with chelation ,...
i want to mention here something,
1st my Fe decreased from
9650 to 3582
then 3582 to 2902
then went up back to 3613
then it came down again 3613 to 2330
then 2330 to 2060 ...
soo, i think fluctuation/variation in S.fe level is nothing to worry about .. as other forum memebr told me that infection could b a reason of hike in S.Fe .. soo dont worry abt it and keep chelating...
your S.fe is decreasing day-by-day and you're doing good, soo please keep it up ... Way to go buddy ... its a little long to get your S.Fe in normal range but you can , and its not imposible as few other member has controled their Iron level quite well... dont worry abt the hike and keep chelating , its my main message to you Panos .... Wish you all the best of luck and everything :thumbsup ..
Best Regards
Take Care
Umair
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Panos, sorry to hear about the infection and definetly the combination therapy is the best in case of elevated ferritin levels. The most important thing is taking antioxidants to decrease the oxidative stress on the cells
Good luck
manal
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hi manal
every morning one hour befor breakfast
i take 400 mg ip6,
1x kolostrum,
1xnigella softpill
and one l-carnitin-magnesium combi-pill......
the color of my skin change from grey-olive
to now fresh rose.....its amazing
panos
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Panos,
I am so happy to hear that. When your skin (which is an organ) shows this kind of improvement, it is an indication that your internal organs must also be improving. This is great!!
I wish you continued improvement and good health,
Sharmin
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Panos,
I am so happy for you, my friend. I am sure the colostrum is also of benefit in helping to keep your immune system working well during the port infection.
The power of supplements is becoming more and more evident as we hear more reports like this from patients of all ages. Panos is an older patient and has been through many life threatening experiences. This shows that it doesn't matter what you've been through before and what your current health status is, or even how old you are. What matters is that you take control of your health and for thalassemics, taking supplements is something all can do to have a very positive effect on their health. I'm a firm believer in the power of supplements for all people but for thalassemics, the benefits are undeniable.
This group will continue to be a leader in this area and the cooperation of the members in trying various supplements has and will continue to be key in the development in our knowledge of what everyone can do to improve their health and enjoy better lives. When I first became involved with thal, the value of supplements was not well known and other than folic acid, zinc and vitamin E, there was very little being recommended to thals. Research has advanced since then and a better understanding is being created among those who treat thal, but I have to say, we are far ahead of most with our recommendations. This has been a true group effort and everyone who has taken part in advancing our understanding of what will help the health of thals deserves a big thanks and a round of applause. :thankyou2 :clapcheergirl :clapcheerboy
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This has been a true group effort and everyone who has taken part in advancing our understanding of what will help the health of thals deserves a big thanks and a round of applause.
You too Andy :yes
Panos,
I am really happy for you,the way you have fought to stay on your chelation is an inspiration for us all,don't worry about the minor ups and downs,once you start IV desferal once again,you'll reach your goal. :goodluck
Zaini.
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Ball,
How often are you transfusing now? How much blood are you receiving at each transfusion?
IV desferal is very effective. We have been on combination therapy - my son's iron levels dropped from 2880 to 1545 within 6 months - so combination therapy may work for you (under a doctor's supervision of course).
Best of luck
Sharmin
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Panos
I am really so happy for you and soon your ferritin will be under the 1000
One more thing that you should consider is not to take IP6 and colostrum at the same time. Colostrum has protein and when it is taken with IP6, it combines with it resulting in ineffectiveness of the IP6.
So IP6 should be taken either alone or with no proteins at all
Take care
manal
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@sharmin
i get tranx every 12-14 days,
the units were washed,leukofree and radiated.....
but we dont weight them....
@ manal
thx for the tip...now i take the inositol at first for it own...
and now the news
after the first week again with combi....
and after transfusion.....
my fe is 3125 and the hb is 11.6
i am feeling really good.....
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:yahoo
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Baal,
That is great!!
Sharmin
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Panos,
All our prayers are with you,i hope you reach 1000 very soon :goodluck.
Zaini.
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Hi Panos ,
That's Great Buddy ... Good progress, keep it up and you will se more amazing effects of it, you will feel good happy and energetic as your S.fe wil come down .. WAY TO GO buddy , i hope you will achieve your target sooner than me ... i hope your S.FE will come below 100 verry soon ... i m realy very happy for you .... How is Your Diabetes buddy ??... please keep an eye on that too ..
keep a good record of BSLs ( Blood Sugar Level ).... its realy nice to see that you are making progress towards good and healthy life , MAY GOD BLESS YOU WITH ALL THAT YOU NEED AND WITH ALL THAT IS GOOD IN YOUR FAVOUR .... Always Praying for You and all the other thals who are fighting hard... for those who are thinking to give up , MAy God bless them with hope ofe good healthy life and strength to fight and come back in life ....
Best Regards
Take Care
Umair
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@sharmin
i get tranx every 12-14 days,
the units were washed,leukofree and radiated.....
but we dont weight them....
@ manal
thx for the tip...now i take the inositol at first for it own...
and now the news
after the first week again with combi....
and after transfusion.....
my fe is 3125 and the hb is 11.6
i am feeling really good.....
We dont weight them either. I never heard about this in Europe, to be honest. You just get that whole bag. I never had a half bag or something like that. The mump knows most of the time how much you have been given. Once there was 330 ml in the bag, such a strange huge amount.
Anyway, good luck with the trip to the 1000. I'll join you!
:thumbs
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Congratulation Baal. Please keep up the good work.
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Congratulations my friend , keep up the good work
manal
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hi all
since a few days i have to stop chelation again
cause i get a flu...
with nose..eyes running and pain by breathing...
fewer of cause too....
i take antibiotics for a week....
today i go for transx....hb is at 10.2
lets see wats happen....
panos
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Panos,
Did you check your WBC count,since you are on Ferriprox its necessary to keep monitoring WBC count and specially when you get flu like symptoms cause Ferriprox can cause Neutropenia.
Zaini.
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Panos,
Did you check your WBC count,since you are on Ferriprox its necessary to keep monitoring WBC count and specially when you get flu like symptoms cause Ferriprox can cause Neutropenia.
Zaini.
Hi Panoz ,
Zaini iis right please do check your WBC , and take car buddy , Best of luck :goodluck
Best Regards
Take Care
Umair
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Baal,
I hope that you feel better soon. Good luck with your tx, and I hope that you are able to start chelating again soon. While you are sick, keep up with the IP6 and other antioxidants so that somethind is binding with the free iron in your body.
Sharmin
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:huh
DEAR FRIEND
I CANNOT SAY CONGRATULATIONS BECAUSE YOU SEEM TO HAVE DISCOVER FERRIPROX AND ITS LIFE SAVING EFFECTS 9 YEARS AFTER ITS MARKET INTRODUCTION!!!!
HOWEVER KEEP UP AND MAKE YOUR TARGET TO GET YOUR FERRITINE UNDER 100 LIKE HUNDREDS OF PATIENTS IN GREECE!!!
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dear friend and landsmen
its the work of this wonderfull thal-group we have here,
that makes me try to taste the combination-therapie
with ferriprox and desferal.
the drug ferriprox isnt new to me....
i firsttime take it under the name L1 and it comes from switzerland
and has no accreditation.....
this was over 10 years ago...
unfortunatly after a while i become pain in my bones and had to stop them...
5 years later i try again...
the result was vomiting and pain in my feet...
this is my 3th try....
what is different iss that i start very very slow(with low low dose)
and grow up....
this time it seems to work.....
however i will thank u for ur care and wish to require ur thal-story
panos
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Good luck Panos,with every thing :goodluck we all are so happy for you.
Zaini.
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(http://farm4.static.flickr.com/3254/2923830456_a8e96865da.jpg?v=0)
Good Luck Panoz
Best Regards
Umair
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Soon we will congratulate you of reaching a ferritin of less than 100, best of luck
manal
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dear panos
i just want to tell you that go for ultra sound of your both knee joints , because the arthritis and joint effusion caused by ferriprox is common .your report reflects low serum calcium ,so please repeat it too
erum minhas
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hi pals
@erum minas,thx for ur advice....
my calcium-level....as the magnesium and the kalium
are all in the norm-levels......
i do a lot to hold em ......i take IDEOS,
l-carnithin plus magnesium and some more....
and know i will tell u from my last fe-count....
its 2800 and be the loest i ever had......
i make some mind and come to the resolution
to change my therapy.....
i hold the every second week IV desferal for a week on
(6 vials per 24hours)
and take now 4 times ferriprox (5-5-5-5)
6 in the mornig 12 midday
6 in the evening and last at midnight....
i recodnisted that so everytime i have
red urine .....
with 3 times there are few hours without color in the urine
panos
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Panos,
Thats such a great news,i am really happy for you, :yahoo :yahoo keep up the good work and soon your ferritin will be below 1000 :hugfriend.
Zaini.
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What great news Panos, within six months you can get your iron levels below 2000 - with your dedication I know that you will do it!
We are all here to support you and celebrate with you when it happens!
Sharmin
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WowwwWWwww , :yahoo Panos ,
:congrats You're Faster Than me buddy , i m really glad for you . .. keep it up buddy :thumbsup . i hope to hear soon that your Fe level is within he normal ranges .. really soon ... carry On buddy ...
Best Regards
Take Care
Umair
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@ ALL
I am happy to inform you that today I received new results ferritin now down to 2380.. :biggrin
However, I would like to check, as my friend is going to a different sector in the hospital and the doctor there told him not to take L1 4 times per day (every 6 hours) as the body can only excrete a certain amount of ferritin. Do you have an idea ?
Thanks for your views.
Bye, Panos
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Wow Panos , going too fast buddy , good to hear your latest Fe results :congrats ... sorry buddy i have no idea abt 4 times a day method of L1 ...
Best Regards
Umair
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Pano,
It's the first time I have ever heard something like this!!! Excrete only a certain amount of fe? No, I think he is wrong about it.
<xtes girisa apo Thesalloniki kai otan paro ta apotelesmata tis mri tha se paro na ta poume. filia.>
Lena.
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dear panos
i just want to tell you that go for ultra sound of your both knee joints , because the arthritis and joint effusion caused by ferriprox is common .your report reflects low serum calcium ,so please repeat it too
erum minhas
I am not happy to hear - nor did I ever hear of that before. You know that arthritis is (almost) problem #1 by iron overload?
I am really afraid to be diagnosed with it (I know it's wrong grammar)
Dore
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back again
brandnew results (yesterday)
serumferritin...............1994 ng/ml
panos
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Wow Panos , :congrats
you're still giving me giving mme hard competition , you achieved this in shorter time than mine ... going too fast :what .. i wish and hope that you'll achieve the goal of lowering down the Fe below 1000 in way shorter time period than mine .. God Bless you buddy .... i m really happy for you :stars :love :party
Best Regards
Umair
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That's great news, Panos! I am really very happy to hear this. Keep chelating and keep taking L-carnitine. You're doing great!
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Panos,
That is such wonderful news!!! I am sooooo happy to hear it!!! You are now approaching the 'safe zone' of iron in thalassemia. Keep at it and your iron will be lower than 1000 in no time!!!
Sharmin
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Congratulations dear friend, very soon you will be below 1000, so happy and proud of you , keep it up :hugfriend :hugfriend :hugfriend :hugfriend :hugfriend
manal
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Hi Panos,
(http://i270.photobucket.com/albums/jj87/turkelclp/congratulations%20way%20to%20go/Smiley8.gif)
Zaini.
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Congrats!!!
I am sureyou are going to show my ferritin how to act really brave!!!!! ;-))
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yesterdays serumferritin.........................1870 ng/ml
:hugfriend :hugfriend
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:yay
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Ferritin going down and down, :biggrin keep up the good work champ :biggrin
Zaini.
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Three cheers for Panos, hip hip hurrah
:yahoo :yahoo :yahoo :yahoo
manal
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Hi Panos,
:congrats buddy, i m reallly soo much happy for you buddy :cheer :cheer :yahoo :clap :veil :thumbsup :stars :love :party :yay :yay :yay , and scared too , scared bcoze you are gonna break my record of getting to 1000 in short time just kidding hahahaa , i m really very happy for you buddy ... your progress is gr8 and your going very fine ... i hope you will get your Fe below 1000 NO time and within normal range in soon future ... i m always praying for you buddy , keep it up , thats the way to go buddy .... :clap :clap :high5 :high5 :thumbup :thumbs :thumbs :hi5boys :clapcheerboy :clapcheerboy
Best Regards
Take Care
Umair
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:cheer :cheer :cheer :cheer :cheer
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:party :stars :party :stars :party :stars
:thumbs
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and here know something unpleasend
since 1 or 2 weeks i have very big problems with
swollen feets(both)....
and its not from heart or liver(the results are to good)....
i think it comes from the ferriprox......
tomorrow i start with smaller dose and hope to bann the swelling.
wished me luck...........panos
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Panos,
Wish you all the best buddy ...
Best Regards
Umair
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Hi Panos,
What did your doctor say about the swollen feet? I hope that the problem is resolved very soon. You are making so much progress with your iron levels, I hope that this problem will be resolved soon.
Sharmin
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Panos,
I can't find anything about water retention in the Ferriprox documents. Has your kidney function been normal lately (normal urination)?
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hi
my kidneys must be all right,cause after i take lasix the fluid comes out
of the body.
@sharming: i wont tell my dr. the problem i have......
i dont think that she can help me....
anyway...i reduse the L1-dose and see whats happend....
my heart has no palpilations since some months,and my
liver-results are all in an moderate area(billirubin 1,4 GOT 45)
kidney levels are good too...i go the whole day to urinate....
lets see whats happened with a dose of 4-4-4
the IV-desferal i will hold on(by porth)
i dont think that it bothered my succes in chelating.....
-
Pano,
I do not think that Ferriprox can cause swollen feet.
(den exo akousei to ferriprox na kanei priximo podion. Proteino na to peis ston giatro sou.)
Lena.
-
Dear Panos,
I think that the swollen feet may be an indication that continued chelation is required - not reduced chelation. It is important for you to continue removing the iron from your organs and the combination chelation path that you are on is an excellent way of doing this. Have you had a SQUID exam or T2*? Swelling of the feet should not be caused by chelation.
Best of luck,
Sharmin
-
Hi Panos,
Some good work keeping your serum ferritin levels down. This is indeed good news for all of us. I checked the causes of swollen feet (link below). Please see if you can identify the cause by reading this article.
http://www.mamashealth.com/foot/
If you cannot spot the reason then please check with your doctor. I think Sharmin has a great idea to have SQUID, Ferriscan and T2 test in case the condition does not go away.
Please keep us posted.
-
Good link, CF. Panos, I would suggest you try some of the ideas on that page and see if any help. I also don't think that this is related to Ferriprox and want to point out that Ferriprox does give some cardio protection. One other suggestion I have is to increase your desferal use temporarily in case this is being caused by free iron in your blood. Desferal will quickly remove the iron if this is the case.
-
Hi Panos,
to know about my experience of Swollen feet please read this thread to the message i posted there :
http://www.thalassemiapatientsandfriends.com/index.php?topic=2612.msg28512#msg28512
and this thread from post this post ( reply no 115 )
http://www.thalassemiapatientsandfriends.com/index.php?topic=2112.msg25209#msg25209
to this ( reply no 142 )
http://www.thalassemiapatientsandfriends.com/index.php?topic=2112.msg25295#msg25295
[bgcolor=#b00000]Correction pleas : i told to many people that i start IV desferal in January , that is wrong, i forgot that i started IV desferal somewhere in March after a few days to when Andy sugested me to do that .... yeah i m bad at memory now a days and always were bad at remembering the dates :grin ... sorry for misguiding abt that but it was by mistake,,, it wasn't pre-planed .... sorry again[/bgcolor] ..
Best Regards
Umair
-
I must say that I believe this swollen feet issues has a bit too much 'accidentally' (do I use the right word?)
Panos, Umair and I are following intensive chelation and all the three of us experience swollen feet..
It might be nothing though.
Dore
-
Dore,
That is also my suspicion and is why I said Panos should temporarily increase his desferal use to eliminate any free iron that might be in the blood from the intensive chelation. In addition, I would strongly recommend taking a high dose of vitamin D daily. This will be explained in another new post.
Free iron can cause a reduction in heart function, so it is very important to remove it as quickly as possible. Supplements like IP6 and green tea extract may be of benefit in this situation.
-
Hi ALL ,
could increaseed desferal b a reason of swollen feet ??...
Best regards
Umair
-
I don't think that desferal is the reason. I think that other chelators like Exjade and Ferriprox can temporarily raise serum free iron, as they remove it from tissue. This creates a short term condition that I believe can cause a reduction in heart function, which leads to water retention. I think increasing desferal and taking natural chelators like IP6 and green tea extract can clear this out and return the patient to normal. This would also explain how using IV desferal can correct the swollen feet problem. This would also help explain why combination therapy that uses desferal with other chelators is so effective.
-
Thanx alot Andy for a detailed answer. it could be fixed with desferal :agree bcoze when i started IV Desferal since then its 1st time that i got that swelling back and that is bcoze i m on rest to chelation , i mean chelation with desferal is on held since last IV session and after that i had a Tx and now its time to have another Tx on monday ... it mean's that keeping chelation on hold could be a reason of getting back the swelling, bcoze of free iron in blood bcoze of recent Tx bcoze i haven't resumed the chelation after that TX ... :agree to you buddy ...
Best Regards
Umair
-
hi to all
oki here now some news....
the swollos at feets is getting better since i got my last blood-tx.
my pre-tx hb where 9.4......
maybe i have to take care to hold it higher....
but i go every 10 days and get 2 units....
where shall this end if i go earlyer???
6 units per month are 1.500ferritin increasing.....
my desferal-dose....i couldnt increase it......
bcause i take now 10-12 vials per day....
how mutch should i decrease it?
there is no leeway for it.....
i try now to keep the line and hope that the time works for me......
panos
-
Pano,
in case of having heart disfuction - here in Greece at least - we never get two blood units at once. If your ejection fraction is less than 63% you should not get two units together because heart gets overburdened. That's what we are told here and I find it logical. Why don't you try get one every week or some other scheme that suits you?
Lena.
-
There are several reasons why thalassemics might get edema (water retention). The biggest concern is, of course, poor heart function. However, if the heart tests out fine in T2* and echo tests, other possibilities should be considered. As I mentioned, a temporary increase in free iron has been seen to occur sometimes in combination therapy. The best thing that can be done if this happens, is up the desferal intake until things clear up and also make sure natural chelators like IP6 are being used. Poor leg veins can also cause water retention in the ankles and feet and this is a fairly common problem. Elevating the feet while resting can help. Getting up and moving around should be done if you sit for long periods or stand for long periods in one place. Walking does help improve this condition. I would also suggest some citrus be taken daily between meals, so as not to add to iron absorption. The veins need vitamin C for proper function so thals do need to make sure they get some C daily from their diet. This last one is very important. Stay hydrated at all times. Don't drown yourself but please make sure you get plenty of fluids and especially water every day. This is needed to eliminate toxins from the body and dehydration can actually cause edema.
I will appreciate feedback to see if any of these suggestions help those bothered by swollen ankles and feet.
-
Do you mean with citrus: Adding a slice of citron or leman juice to your water?
The thing I know, is that I am probably vit C. deficiency. I got some problems with the limit of 200mg a day. Most of the times I only have 1 glass of orange juice with Exjade. However, yesterday I eat plenty of fruit.
Today I will buy or order ip6. I will also buy green tea. Must this be pure green tea? I don't think you can ask me to do that ;). I will pick up green tea with jasmine.
For at least 5 years I have had infusion (for transfusions) in my foot!!! :wah
I will be part of the experiment,
Dore
-
Hi Dore,
The important thing is to try to get all the vitamins and minerals your body needs but because of its ability to aid iron absorption, vitamin C foods are often avoided completely. As you know from taking Exjade, some vitamin C is OK, as long as you don't take more than 200-250 mg daily and also avoid having vitamin C foods at the same time as high iron foods. So, taking it with Exjade is good and having some fruit between meals is also a good way to get vitamin C. So have a piece of fruit like an orange or have some citrus juice. It is very good for the veins and also helps minimize bruising.
-
here are my latest news now....
after reaching 95 kilo (heavyweight) i stopped now
the comby-therapie with desferal and ferriprox.
i am not able to stop the more and more foodsupply.
at the beginnig i was 72 kilogramm.......
i speek with my hematologist and we come to the
agreement to switch to exjade in combination with desferal....
i start yesterday with a low low dose and try to raise it up slowly....
my latest ferritin is 1.800
lets see whats now happend.....
please keep the fingers crossed for me.....panos
-
Hi Panoz,
its really good to hear that you r going to switch to Exjade+Desferal combinatio therapy , BEST OF LUCK buddy, i hope you'll find alot (infact all) of its benefits... your Fe isn't too high but it can decrease more with less efforts , soo keep the good work up and keep compliant to the chelation ... i hope everything gonna be right soon, Don't worry ....
lots of good wishes
& Best Regards
Take Care
Umair
-
tx u umair.....
lets see whats happend.....
-
Hi Baal,
My son has been taking exjade/desferal for 10 months now - and so far (thank god) we have seen no side effects. Oakland has done a trial with numerous patients, no patient has had any side effects so far - the treatment has been very effective and many patients found their ferritins fall below 500 and they were temporarily taken off of the combination therapy until their ferritins got a little higher. I think that you will find much success with this combination.
Best of luck,
Sharmin
-
Pano,
Rejecting ferriprox due to overweight? No, we would never do that here. All thals who had the same problem here just refrained from eating and they have regained their original weight.
<vre panouli, den einai logos aftos na afiseis kati poy exei doulepsei kai na arxiseis kati kenourgio poy exei kai perissoterous kindinoys kai parenergies. Ti na po? apla ego den tha to ekana pote. To ferriprox exei apodeixthi to kalitero kai den to afinoume gia tetoioys logous.>
-
hi thalpals
here are my latest news !
after switch to exjade/desferal combie i lost 12 kilos of weight,
and comes down to 82 kilos.
my ferritin stay stabile at 2000....tomorrow i became brandnew results...
the results from the ferriscane is commig yesterday and its not so bad....
my liveriron is 11........
and my BNP (a new marker for hearthfailtur) comes down from
800 (in august 2008) to now 110......
this must be the good work of the ferriprox.
i feel very very well the last 6 weeks.... panos
-
and my BNP (a new marker for hearthfailtur) comes down from
800 (in august 2008) to now 110......
Congratulations Panos, this is very encourging, keep up the good work :yahoo :yahoo :clap :clap
manal
-
Panos,
This is good to hear and I agree that Ferriprox has done much good for your heart. Are you feeling physically stronger than earlier?
I want to add some explanation about the B-type natriuretic peptide (BNP) test.
http://findarticles.com/p/articles/mi_qa3689/is_200301/ai_n9190946/
NP is a neurohormone that the heart secretes in response to ventricular volume expansion and pressure overload. By helping to maintain the body's salt and volume balance, BNP counteracts the adverse effects of the neuroendocrine stimulation that accompanies HF.
An elevated BNP level correlates with increased left ventricular enddiastolic pressure and volume, New York Heart Association classifications, and pulmonary capillary wedge pressure. It's useful for differentiating HF from lung disease in patients with dyspnea. ..
A BNP test is performed on a venous blood sample via fluorescence immunoassay, which quantifies BNP levels in whole blood and plasma specimens. Normal BNP levels are less than 100 picograms/ml; levels greater than 100 picograms/ml are a primary indication of HF. In one study, patients with HF had BNP levels ranging from 400 to 800 picograms/ml.
As you can see, Panos is almost at normal in this test compared to previously being at the high end of the scale. This is excellent improvement. Also, I want to say that in patients whose ferritin is low, Exjade is doing a very good job. Aston Dialo told me this week that his ferritin is now around 250 and his Exjade dose is going to be cut in half. Good going guys! Keep up the good work. Your bodies will thank you.
-
Panos,
Thats really great to hear,your hard work is finally paying off,keep it up ,you are an inspiration :hugfriend .
Zaini.
-
:congrats Panoz , its indeed a good report :) nice to hear this :) ... BNP is really condition is really improved in comparison to last year in august it was .... so, Panoz, how r u feeling now , energetic !! healthy !! and ofcourse happy... controled Iron levels is a big relief for thals, keep it up buddy .... way to go Yayyy.....
Best Regards
Take Care
Umair
-
Bravo Pano!!!
Hard work always gives good results!
( tin Triti fevgo pali gia diakopes, 10 meres akoma, tha ta poume meta.bravo sou. kai se anotera!!!)
-
Congratulations Panos!!!! Are you having a nice summer? Paris was super and last week i was in Germany :D I dont love even France, I also love Germany! Nice people. Once again congratulations. Give yourself tge permission to do something special. For example à strange combination for à big icecream (i Will dream about that tonight)
as for special mri (for heart?) im told that i will have one in very soon future. We"ll see. (i know Dutch couple with you kid who has à doctor in Oberhausen. Is that close to you? It isnt too far away for me, but T
the only i visited was for a concert. Enough! Nite, Nite
ps the horrible is xaused by my mob
-
Hello all and first of all happy New year!!
I wanted to give you a short update of my situation. Since summer I am using exajade, L1 and desferal in combination. I only use two at a time and switch from exjade and L1 or exjade and desferal.
My docs are not recommending this kind of combination but according to my experience, I am doing fine and my ferritin is at about 1.600, which is quite good for me.
I went even on a short holiday to Cyprus - for long weekend at the end of OCT and I was doing fine. Must admit flying was quite challenging with my lung presure (pah), so the next time I am thinking of ordering oxigine for the flight duration..
However as total result, I am happy to advice that I am feeling good.
Therefore I wanted to share this information with you ! Do not always keep strict on docs recommendations, don't be afraid of taking own decions as by the end of the day we are the only ones knowing our body and how it is acting best.
Take all good care of you and hope 2010 will be a happy year for all of us in the THAL PAL Community.
Yours Panos :biggrin
-
Happy New Year, Panos. I agree with what you said. You are the master of your own body and only you can tell the immediate results of the things you try to help yourself. Panos, do you take L-carntine?
-
Pano,
happy New Year to you, too! Well, I am not for the three-part combination therapy, I have to say that.It is far too risky to use all three chelators together in so short time interval. I think you could reach this ferritin level with just the two of them but it's your call. Everyone is his own master and do as he decides.
Best of luck,
Lena.
-
Panos,
Best Of luck ... !! ... n Happy New Year to you too ...
Umair
-
yesterdays they gave me my last results......
serumferritin.... .....1103...
i felt really really well........panos
p.s. ANDY yes i take l-carnitin every day.....
-
Glad for you Panos :yes
Zaini.
-
Bravo, Pano!
Lena.
-
:congrats Panos , i m really happy for u buddy ....
Best Regards
Take Care
Umair
-
Congratulations Panos. :yahoo :yahoo :clap :clap :clap
But please always check kidney and liver functions as long as you are having the 3 chelators
manal
-
Congratulations Panos!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
:yahoo
-
three chelators in combination!? it is a new great idea. no one though about before!!you are a very adventurous and innovated. :clap :clap :hey
-
Panos,
Way to go! I hope that you are getting all of the necessary tests done. I am confidant that everything is good, these chelators all have different mechanisms and I find they work better in combination than alone. I can't wait to hear that your iron levels are below 800 soon!
Sharmin
-
Hi Panos,
I don't understand why you are experimenting with 3 chelators at one time, your ferritin is not bad at all and you can achieve your desired results from using one or combination of two chelators easily.
In my opinion there is no reason to take this extraordinary risk, sure your ferritin will come down as a result of three combination, but I am not sure what effect this combination will cause. You had mentioned you feel good which is great, however, I will be extra extra careful in monitoring your health.
Take care.
-
I feel I should clarify things regarding the chelation program Panos has developed for himself. Yes, he has been using all three chelators, but never more than any two at a time. All of these combinations have been used elsewhere and some are the subject of trials that are currently ongoing. Although unorthodox, I don't think there is anything inherently wrong with his approach because there are no known reactions between the various chelators and they all do act a bit differently in how they attach themselves to iron. I do think that the same monitoring that normally is done for any of these drugs should be continued, so white cell counts should be monitored along with creatinine levels and liver function tests.
Panos has lowered his ferritin greatly because he has used this method. Being that he is a well experienced thal, I do expect that he does pay close attention to the doses and any reactions in his body. I also expect that as his iron load becomes under control, that Panos will once again revise his chelation routines. I've known Panos for some years now and four years ago we tried out the primitive chatroom we had on our new site. Panos explained his hemolysis problem and it was severe. With what Panos was going through then, I wasn't sure he'd still be around 4 years later, but he has conquered the severe hemolysis problem and now is attacking the iron load that was a product of those times. He is a real survivor and I want to give my support to his unique chelation routine with just this advice. Stay cautious and observant. And once your ferritin gets to 500, revise your routine.
-
let me tell ya all some words about my situation....
first i will thank u andy for take part for me and clarify my past.
after really bad bad years (spleen enlarged over 35cm,billirubin between 5-7)
very short tranx-intervalls.....my ferritin becomes about 16.900
this was the time everythink broke down.....
fast hearthbeats, papilations, polmonary hypertension, livercyrosis, diabetis starts
immunsystem broke down (become a really heavy herpes zoster in the face)
after all this i go trought spleenectomy and when i come out the hospital....
after 3 months... i change my live completely......
i start with i
-
i start with iv-desferal via porth for 7 days... and then 7 days break.....
after some months i take deferiprone too....
this helpes a lot, but after some months i become overwigth...
because of the ferriprox, (40 pounds more)....
i stop the ferriprox but with the desferal only thinks dont go
thinks dont go as fast as i wont them....
so i start exjade and hold the desferal by.....
after some weeks i become a raise in the kreatinin and stop it.....
as i lost a lot of pounds i restart the ferriprox.....
bu teverytime again i become the wightproblem under ferriprox...
so i take all 3 but in the same time only 2 of them.
panos
-
after really bad bad years (spleen enlarged over 35cm,billirubin between 5-7)
very short tranx-intervalls.....my ferritin becomes about 16.900
this was the time everythink broke down.....
fast hearthbeats, papilations, polmonary hypertension, livercyrosis, diabetis starts
immunsystem broke down (become a really heavy herpes zoster in the face)
Panos
Comparing between your situation in the past and now, i must admit that you are real inspiration. I remember that when i first joined this forum, the posts that your sister was posting at that time were the first that i had seen. At that time you were in the hospital and she was updating about your case and i remember that you were in a serious condition
Actually in a very short time you were really able to reverse the whole situation with a strong will. I really admire your hard work, keep it up
Manal
-
Panos, I share Manal's opinion!
:thumbsup :thumbsup :thumbsup :thumbsup :thumbsup :thumbsup :thumbsup :thumbsup :thumbsup :thumbsup :thumbsup :thumbsup :thumbsup
PS do you plan to attend that conference in Berlin too?
-
Panos has lowered his ferritin greatly because he has used this method. Being that he is a well experienced thal, I do expect that he does pay close attention to the doses and any reactions in his body. I also expect that as his iron load becomes under control, that Panos will once again revise his chelation routines. I've known Panos for some years now and four years ago we tried out the primitive chatroom we had on our new site. Panos explained his hemolysis problem and it was severe. With what Panos was going through then, I wasn't sure he'd still be around 4 years later, but he has conquered the severe hemolysis problem and now is attacking the iron load that was a product of those times. He is a real survivor and I want to give my support to his unique chelation routine with just this advice. Stay cautious and observant. And once your ferritin gets to 500, revise your routine.
Agreed, well said.
-
wish You all the best of Luck, Panos... You're a true fighter :) ... :goodluck ...
Best Regards
Take Care
Umair
-
hi buddys
today is a good day and i want to share some news with u all.
as i told i have a ferriscan made in july 2009...
the result was: 11,3
yesterday i become the brandnew results....
it was : 5,9
this shows us that strong chelating works.....
andy could u give us some words about it...... thanks panos
-
Panos,
That is excellent progress and you are now in the safe range of under 7. Ideally, the level should get down to a level of under 3 and I am sure that will happen. I am amazed and very happy at how you have turned things around. A few years back I wasn't even sure there was anything that could be done, but we have all learned plenty during that time period. Aggressive chelation, especially using a combination of chelators, can turn things around no matter how bleak it looks.
Panos and Umair have recently shown us what is possible with hard work. When the excuses stop and the work begins, the reward of life is found. For some, the work may seem too hard, and our job then is to convince them that it's worth it.
I don't want to see anyone "left behind." If you are having trouble finding the right chelation routine and you need help, please come to us and tell us your situation. We have enough great minds here and enough real experience to help you on your path. Don't let yourself become history without a fight. I keep reading even today that with treatment, thals can live to 30! Let's be leaders and change this wrong thinking. We don't know how long thals can live but we all know it's much longer than that. I personally know several thals in their 50's, with more and more approaching that age. Let's make sure the world knows this, but most importantly, let us make sure that every thal on earth hears this message.
-
Panos,
You rock :hi5boys You have done something that can inspire everyone,you took a stand and you did it for yourself and by yourself,Congratulations !!!.
Zaini.
-
Great Panos ... i m really happy for u :congrats ... :)
Umair
-
Congratualations!!!
-
here is a pic of the
ferriscan-result....
-
and this is my last
ferritin-check....
first time ever under ......1.000........
come down over 10.000 points.
-
:congrats Panos,
I'm really happy for u .. may you'll find more succes in ur treatment soon ..
Best Regards
Umair
-
excellent work body ... hey ppl now i think its reallyy serious to bring my results like that,,,im on it
-
We are always here to cheer you on Waleed :cheer :cheer :clapcheergirl :clapcheergirl
Zaini.
-
today brandnew ferritin-count....
down and down....
......... 745 ......
panos
-
Panos,
That is wonderful! I am so glad for you!! Your hard work is paying off:)
Sharmin
-
:thumbsup
-
tx u both
tomorrow i get 2 units of blood
after more than 3 weeks.....
i am feeling very comfortable at moment...
thank u all for give me an helping hand....
if i could... i would hug u all...... :hugfriend
-
Bravo Pano!
This is great!!! :cheer
(mine, after one month of ferriprox alone, has gone up to 232!
that shows us the value of combination therapy, which I have already returned to--ferriprox along with desferal, as I do not want to go back to exjade.Today I am due for my MRI, we'll see.)
Lena.
-
good luck for your MRT lena
i have splitt my exjade dose in 2 parts...
an i take it wiht meals sometimes.....
panos
-
Thank you, Pano.
I just got back from my MRI and the first unofficial results are these:
T2* heart and T2* liver is somewhere around 32....
It's o.k I guess.
Lena.
-
Lena, I do not understand this values. Oh friends, how I wish I could let them do a mri. It is the old song, we do not have this in the Netherlands. We can only get the iron in picture by blood tests.
Congratulations Panos!!!!!!!! I am glad I read it because this morning I have decided to increase my dose of Exjade from 1000 to 1500 but split the dose up in two. So that is what i am going to prepare now.
Everyone tells me to be content with having a stable ferritin at 600. It is. But I want to have it more low. Can you blame me for that wish?
-
Lena,
If your heart T2* score is over 30, it is quite excellent and considered absolutely normal. Keep in mind that women generally score a few points lower on the T2* than men.
-
Thank you, Andy.
I am aware this is normal count, the general population count. That is what the technician who did the unofficial estimates for me told me. Now the maintenance dosage is to be set, but I guess the ferriprox-desferal combination therapy will go on and I believe this to be right. The only thing I am sceptical about now is the toxicity of the drugs, as heart and liver are free from iron.
Lena.
-
hi friends
time to share same good news with u all.....
i am feel very fine and my ferritin stays stabil in the 6 hundred ranges....
638 ...672.... and my last was 619......
since a few days i stopped the ferriprox and take only exjade....
the wether here is at moment very hot,and if it turns i try to make some
IV-desferal too....
and before i forget...i start to take another strong antioxidant too....
it is very expensiv and the insurence didn pay for it....
but i here from DBA-anämias that it helps alot.....
maybe Andi nows somethink about it....
the medicin called LEUCIN....panos
-
Panos,
Leucine is an essential amino acid, which means the body cannot make it. You can see a list of foods high in leucine at
http://www.dietaryfiberfood.com/leucine-rich.php
Leucine is necessary for muscle growth and replacement and I can see a need in thals as they get older.
Panos, leucine is a very cheap supplement when purchased from supplement companies or health food stores. Of course, when it is supplied by a pharmacy using a doctor's prescription, the price is much higher. I do not know the status of the supplement in Europe because Codex is doing everything possible to prevent people from acquiring the supplements needed for good health and Codex has much influence in Europe. Codex is nothing more than a tool of the pharmaceutical industry, which has no interest in health. They make their money from illness and do not want a healthy population and are trying to prevent people from having access to nutrients, as in Canada where L-carnitine can only be purchased with a prescription and at a high price. Try to find leucine from a health food store or supplement company. It will be much cheaper than what you are currently paying.
-
Hello,
My friend in Toronto heard from her doctor that from now one she should only take Exjade after her meal. From someone else i heard another new thing, but I cannot remember it anymore. Has anyone heard about this?
-
Hello,
My friend in Toronto heard from her doctor that from now one she should only take Exjade after her meal. From someone else i heard another new thing, but I cannot remember it anymore. Has anyone heard about this?
I haven't heard any such thing yet,but it be helpful for sure.
Zaini.
-
hi friends
let me share some statistik about
my ferritin-levels.
panos
-
That is an impressive drop. Do you feel better physically now that your iron is so low?
-
Congratulations!!!!!!!!!!!!!!!!
My doc gave green light at the end of August and I restarted the first of September. The last six weeks I have been very ill (gonna split my doses; will get used again about all the staring at uni and public life for mixing it. I have no choice; again more stuff to drag with me. That's my lil whine). Three weeks ago it was 1200 and at tuesday I receive my tomorrow's lab work results. It prolly will hit the 2000 before coming down. You are gonna be my drive to beat all this, Panos. It IS possible to knock it out of your body! And my twice dose of Shakira live in Concert ;) ]Cologne was much better than Rotterdam!]
I am a little blind, so how low is it now exactly?
-
hi
yes andy, i feel very much stronger and my body shows this in
some resultes too.
per example my ejection fraction is now 56% and the PHA
ambulance called me now to come every half year(not every 3 months
like the last years).
even the diabetes is going better. no more over 200-results since a few months.
and at least the transfusion-intervalls changes from 12-14 days to 15-20 days.
to ansered ur question dori......
the exact ferritin count was last time; 499
the last half year is coming down from 700 to now 500.....
and i continious to chelate with the 3 drogs as follow;
ones in the month iv desferal for straigth a week by porth
and exjade every day, and the ather days ferriprox and exjade...
my next ferriscan is on 19.januar.
this was my news happy holly days to all panos
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We need to talk about combin deferiprone/Exjade. Please remind me of it.
Once again congratulations! It must feel good. You have done an excellent job. Will you be also in Antayla for tif's conference in May?
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Panos,
I am very excited for you! You are doing a terrific job - I hope and pray for continued excellent results for you. Soon your iron levels will be below 100:)
Sharmin
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here now a pic
from the last ferriscan.
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That's remarkable progress over just 1 1/2 years.
It's also a testimony to what can be done when you take control of your life. Most thals can be saved from iron overload and certain death by taking control of the situation and doing everything that needs to be done to correct the problem. With modern chelation, this is now possible and I hope everyone understands that. It is not too late to turn your life around if you find yourself in a state of high iron overload. Panos turned it around. Nur turned it around. Umair turned it around. And we just keep hearing from more and more people how they are learning to turn things around and be healthy people.
I think more than anything, Lisa would be happiest to hear these stories of how people have reversed their iron status and given themselves a new chance at life and that her group has played a definite role in helping people get on the right path. I hope we can continue to give the help and support that can make the difference to many.
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hi panos.
good work. v happy for u. its nice to hear that u hav succeeded in reducing ur ferritin. u r an inspiration for people like me. i just saw ur posts and how u hav worked hard on ur iron.
i hope i can reduce my iron too. i am now on asunra 1600mg and am allergic to desferal. i see that u hav combined asunrra and ferriprox. i hav recently increased my dosage of asunra frm 1500 to 1600. we r waiting to see if my ferritin reduces with this. else we also might hav to combine asunra and ferriprox. did u hav any problem with this combination? i would appreciate ur views.
thanks
shaziya
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hi shaz!
dont be afraid to start the combinetion with exjade and kelfer...
if u have taken exjade before...and also have prooft kellfer....
than normaly there isnt a reasen to let it be....
if u are under control cause of the exjade, so please watch the
white bloodcells and the neutrophils too...
and please dont forgot to start at a very small dose for example
1-1-1 for a week. than 2-2-2 for the next week. than 3-2-2....
than 3-3-2...and please dont take more than100/100 mg to ur kilos.
because u take the second chelator too.
for me every combination works...only under kelfer everytime i take it
for longer i start too gain weigth cause of more hungry...
than i stop it and combine the other 2 chelators.
i wish u good luck and let us know how u do... panos
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hi panos.
hope ur fine. thank u so much for ur advice. since we hav just increased the dosage of asunra again we r waiting to see if it works. else i might hav to combine.
its good to hear that u had no problems with this combination. i wish u all the best in bringing ur iron down some more.. thank u.
shaziya
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hey panoz.... gr8 job budy .. now b ready to check mine ferritin report after an year without Desferal at home ... ;) ..
Best rEgards
Umair
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hi pals
some good news i have to share...
its the second time i goes to a 4 weeks intervall between
transfusions.....
and i did a bones-check up....
the damage get from 53% in the year 2008 to
now 75%.
panos
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and here unfortunatly some not so good news...
today after 25 days i got transfusionet (radiated and washed blood)
and after 35 minutes a got a very bad reakion(TRALLY)
2 hours of shivering and state of shok.
after that they gave me cortison and tavegil and the second unit.
now i am at home and the result of the cortison is that my
bloodsugar is at 495 .
in a moment i think i am on a good way..there comes this. panos
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Panos,
I am sorry to hear this, hope you are fine now.
I thought that it is a routine to take cortison injection before transfuion to avoid any reaction, so it seems that it is not the same at your center??
Is there any thing that trigger the TRALLY in particular, did you discuss it with your doctor??
manal
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i dont get it before takig blood.
i become it to stop the reaktion...
they take after this a lot of blood to find the reasen.
maybe another antibody....
in the run of my transfusion-history (over 2.500 units by now)
i have a dozen of antibodys in my sample.
thanks for take concern about me manal.
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Oh Panos thats really high,pardon my ignorance,but aren't there any meds or injections you can take to lower it?
Zaini.
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hi panos.
i am so sorry dear. i hope u r fine now. take care.
shaziya
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Panos,
Do you know if any mistake was made with the blood this time that led to the TRALI? Was the matching correct? And, is there any possibility that a more thorough matching process can be used to avoid future reactions?
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Panos, I am so sorry to hear. All the shivering (is from having it cold). It sounds a bit similar to me. However, I am very sorry to hear. I hope it was just once and your blood sugar will act very normal very soon. Stay strong and keep us up to date!
PS I restarted Exjade. It's a very annoying process and I fight to myself to not take regular doses immediately.If I set a targer for myself. By September I want to have bring it down from 1400 to 500.
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hi all
today i got news from the ferritin-battlefield.
it seems that more and more i kill the enemy....
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Excellent! I am very pleased to see this continued success. :biggrin
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Congratulations Panos, so happy for you. You are doing a great job :wink
Manal
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Bravo, Pano! You certainly did well. Do you still use all three chelators?
Lena
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Congratulations Panos! :-D
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Hi Panos ,
I m sorry to hear that you got diabetic , but its good to hear that never thought to give up and you raised up ur self and strongly determined to fight not to give-up .... keep this spirit alive in your self and be strong always, as you are now .... yeah ,as dore mentioned, i m having diabetes and managing it ( trying ) with insulin .... variation and fluctuation of BSLs in diabetes is a normal thing for thals and non-thals, but its dificult to controle with thalassemia , as Hep-C also play's its role in ups and down of BSL ..... but with time its settle's up and you got to knowing the how many units/dose to take on wat level of BSL .... sooo feel easy and never b afraid to it ... as your S.Fe is decreasing you will see more changes and your diabetes will bcome more easy to handle .. you will see the noticeable decrease in the need of inuslin when your S.Fe will decrease more ... here is a thread that i started a couple of months ago, when my S.Fe was decreasing , its about the change in the "decrease of S.Fe and need of insulin" .... i hope it will help you understanding alot ...
here is the link : http://www.thalassemiapatientsandfriends.com/index.php?topic=1870.0;highlight=diab
( i m Diabetic since april 2006 ) , i m always heere to help, soo please feel free to ask if you want to know about anything ....
Best Regards
Take Care
Umair
I also got diabetes in end of March 2006. And really want to see S.Ferritin starts decreasing. Umair and Panos both of you are inspiring, truly :thumbsup
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Hey Andy,
What does L1 consists of? I heard from one of your post in this thread that it also protects heart well and helps T2 function, so I am very interested in it.
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L1 is deferiprone, kelfer or Ferriprox.