i take the first step

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Offline Sharmin

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Re: i take the first step
« Reply #75 on: June 04, 2009, 10:54:46 PM »
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
Sharmin

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Offline Andy Battaglia

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Re: i take the first step
« Reply #76 on: June 04, 2009, 11:20:25 PM »
Panos,

I can't find anything about water retention in the Ferriprox documents. Has your kidney function been normal lately (normal urination)?
Andy

All we are saying is give thals a chance.

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Offline baal

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Re: i take the first step
« Reply #77 on: June 04, 2009, 11:38:36 PM »
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.....

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Offline Lena

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Re: i take the first step
« Reply #78 on: June 05, 2009, 05:31:22 AM »
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.

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Offline Sharmin

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Re: i take the first step
« Reply #79 on: June 05, 2009, 02:34:59 PM »
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
Sharmin

Re: i take the first step
« Reply #80 on: June 05, 2009, 03:28:26 PM »
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.
Regards.

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Offline Andy Battaglia

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Re: i take the first step
« Reply #81 on: June 05, 2009, 03:51:23 PM »
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.
Andy

All we are saying is give thals a chance.

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Offline nice friend

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Re: i take the first step
« Reply #82 on: June 05, 2009, 09:28:57 PM »
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
Sometimes , God breaks our spirit to save our soul.
Sometimes , He breaks our heart to make us whole.
Sometimes , He sends us pain so we can be stronger.
Sometimes , He sends us failure so we can be humble.
Sometimes , He sends us illness so we can take better care of our selves.
Sometimes , He takes everything away from us so we can learn the value of everything we have.

===========
Umair

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Offline Dori

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Re: i take the first step
« Reply #83 on: June 06, 2009, 05:34:00 PM »
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

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Offline Andy Battaglia

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Re: i take the first step
« Reply #84 on: June 06, 2009, 06:06:16 PM »
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.
Andy

All we are saying is give thals a chance.

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Offline nice friend

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Re: i take the first step
« Reply #85 on: June 06, 2009, 08:19:01 PM »
Hi ALL ,
could increaseed desferal b a reason of swollen feet ??...

Best regards
Umair
Sometimes , God breaks our spirit to save our soul.
Sometimes , He breaks our heart to make us whole.
Sometimes , He sends us pain so we can be stronger.
Sometimes , He sends us failure so we can be humble.
Sometimes , He sends us illness so we can take better care of our selves.
Sometimes , He takes everything away from us so we can learn the value of everything we have.

===========
Umair

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Offline Andy Battaglia

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Re: i take the first step
« Reply #86 on: June 06, 2009, 08:33:03 PM »
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.
Andy

All we are saying is give thals a chance.

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Offline nice friend

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Re: i take the first step
« Reply #87 on: June 06, 2009, 09:04:17 PM »
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

Sometimes , God breaks our spirit to save our soul.
Sometimes , He breaks our heart to make us whole.
Sometimes , He sends us pain so we can be stronger.
Sometimes , He sends us failure so we can be humble.
Sometimes , He sends us illness so we can take better care of our selves.
Sometimes , He takes everything away from us so we can learn the value of everything we have.

===========
Umair

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Offline baal

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Re: i take the first step
« Reply #88 on: June 06, 2009, 10:49:26 PM »
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

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Offline Lena

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Re: i take the first step
« Reply #89 on: June 07, 2009, 04:43:10 AM »
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.

 

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