chloroquine for porphyria

[larry650]

Has anyone received treatment with chloroquine for porphyria cutanea on your hands and feet. It looks like blisters and scabs from too much iron in the blood? When I looked it up it is an anti-malaria drug. I was hoping for a chelating med.............

[larry650]

Thanks for your info. I told my doctor I am giving the cholorquine two weeks to see results. If not, I would like to try phlebotomy. I have the tips of two fingers that are raw from keeping them covered with bandages. When I allow them to dry out in private, one or more cracks and they bleed. Is there any topical ointment that helps heal it faster? I have been through over the counter and prescription oinments and none work!
Thanks & Good Luck,
Lawrence

[Trinity4]

My skin peels like a grape too.  Hate it but nothing I can do until I get rid of the porphyria.  Ok, here's what I mean when I abbreviate:  HCV (Hepatitis C Virus)  dx (diagnosis)  tx (treatment) Inf (Interferon)  riba  (ribavirin).  Interferon and ribavirin are the combination drugs used to hopefully irradicate the hepatitis C virus.  As I mentioned I should be starting treatment soon and from what I've heard and read it is not going to be pleasant.  Most people, not all but most suffer some pretty significant side effects like fever, nausea, weight loss, low blood counts and on and on.  But if I clear the virus it will be well worth it.  If I understand correctly a "chelating drug" would be one that removes a heavy metal from the blood.  I don't know if cholorquine is that kind of drug but for some reason I don't think so.  It's also used to treat malaria so I suspect it is not although I could be wrong.  Phlebotomy is when they withdraw approx a pint of blood several times a month until the iron levels have been reduced to normal.  With this method they seem to be able to monitor the iron level better so that you don't become anemic as quickly as you might with cloroquine.  That is what my doctor told me anyway.  Well, I hope that helps.  Good luck to you and keep me posted.
Take good care
Trinity  

[larry650]

Thanks for your help. My skin peels like a grape from any bruise and cuts or sores can take a month to heal. I am not up on your jargon...HCV, dx, tx, etc. Could you spell it out in easier terms for me. And what is Phlebotomy? Is cholorquine a chelating drug? Thanks Lawrence

[Trinity4]

My dermo recommended it because that's who I went to first for the porphyria. Good thing I did as that is what led to my dx with HCV.   After I found out I was HCV positive and have to treat with inf and riba the GI said treat HCV first and more than likely the porphyria will go away.  My iron levels are slightly elevated, nothing extreme. My concern is sometimes those with higher levels of iron don't respond as well to tx.  Phlebotomy is recommended to treat porphyria also.  That is what I would do first because everything I've read shows the porphyria went away after phlebotomy treatment.  I've also read that chloroquine can make you anemic very quickly and they have to check your blood frequently.  Staying out of the sun has greatly reduced the blisters on the backs of my hands.  Never had any on my feet.  Do you have fragile skin on your hands and feet also?  The slightest bump to my hands and my skin peels and takes forever to heal.  As I mentioned, I am hoping tx will clear this condition up.  If not, I will try the "vampire technique" and see how that goes.  
Take good care
Trinity