advice needed

[frost68]

I'm a 47 yr old m. diagnosed with hepc,pct porphyria, and hemochromatosis. I had radical phlebotomy 4 years ago because my heart was in bad shape. I had an ej fraction of 30 percent. The main problem I am having is the fact all the veins in my arms arm totally gone. They had to phlebotomize me through a chest port. No doctor wants to perform this procedure on me because its off label. What the hell can I do ? Desperate

[Mugwump]

You need to see an infectious disease specialist for recommendations. Try to find one in your area that is experienced daily with HCV treatment. Many work in conjunction with infectious disease specialist clinics in larger centers. Take a role in finding out more about your HCV treatment options.

Many GPs are overwhelmed by the complications that stem from HCV and wind up treating the symptoms not the infection, insurance companies often will not recognize some doctors as being qualified to treat HCV. But as treatment for HCV becomes standard practice and there are more effective treatments, hopefully this will change. The sooner the better!

Having active HCV leading to cirrhosis and all the complications that arise from this terrible disease can easily distract us from the fact that what we need to do first is clear the virus to save our lives. I know I did not have long to live when I commenced treatment as I have stage 4 cirrhosis and because my liver deteriorated slowly over many years other conditions may have made a liver transplant dicey to say the least.

Fortunately I have no problems with my veins because monitoring liver functions is key to treatment decisions. So you need to find someone experienced in dealing with this and most likely an infectious disease clinic specialist will be able to at least recommend the best course of action for you to take.

Take care and stay on this site most likely there are others who live in the same area as you and can recommend who to see in your area. I am in Canada but the same thing applies here as in the US, finding the right specialist is key to getting treatment.

Eric

[Mike]

Hi Frost68,

How are they treating your hemochromatosis?

Mike

[frost68]

 I had phlebotomy 500 ml per week, when they run out of veins they put a port in me and drawed
blood with a 60 cc syringe times 9 . Drawing 500 ml through a port is considered an "off label"
procedure and if something goes wrong say they collapse my sub clavien artery by pulling to
much vacumn on it and I died thier insurance wouldn't stand by them because the manufacture
of the port says it is not intended to be used for that.
 The doctor that did my last phlebotomy said he would only do the treatment about 20 times, then I'd have to find someone else. Nobody wants to do it.

[Mike]

Hi Frost68,

The reason I asked is that I, too, have hemochromatosis.

I had to do the 500 ml per week when first dx; but, once the iron was drained out (took about 12 weeks), I only need 2-3 phelbotmies per year to keep the ferritin levels in check.

Are there any other options available?

Best wishes, Mike

[frost68]

The only other way is iron chelation ,the problem is I have pct porphira and hep c . The doctors don't want to give me chloroquine,lmao I think they would sooner give me a shot of heroin than prescribe chloroquine to me.

[WaltFrazier]

Hey Frost.  I amlso have hepc, pct and tested negative for genetic hemochromatosis. I too have bad veins...could only tolerate 5 phlebotomies.  After that, they were hurting so bad I stopped.  My Gastro and blood doc thinks once I get rid of the hepc the iron levels should come back in line.  That's what I am praying and hoping for,  I hear ya and can't imagine having a chest port for blood extraction.  Also I am thinking if the pct/fer45ritin levels don't reduce after (hopefully) the hepc is gone, I am going to ask for chloroquine treatment VS phlebotomy. Not sure they are willing to do that but I will cross that bridge when I get there...1st complete my 12 weeks on Harvoni...So far so good...Best iof luck...You can always PM me if you want to chat privately...otherwise stay in touch on the board.

[frost68]

 I'd love to get harvoni , I think hep caused my pct and hh but I called.my insurance company
and my part of it would be around 40 k and there's  no way I can borrow that much money. I'll
just have to settle for trying to treat this through phlebotomy. That is if I can find someone.
If i could get a port implant i'd get the supplies and it myself. I know how to.perform the
procedure and do it right . If something like your sub clavien were to collapse it probly wouldnt matter if you were in a doctors office or at home it would probably kill you quik

[Mugwump]

I'd love to get harvoni , I think hep caused my pct and hh but I called.my insurance company
and my part of it would be around 40 k and there's  no way I can borrow that much money. I'll
just have to settle for trying to treat this through phlebotomy. That is if I can find someone.
If i could get a port implant i'd get the supplies and it myself. I know how to.perform the
procedure and do it right . If something like your sub clavien were to collapse it probly wouldnt matter if you were in a doctors office or at home it would probably kill you quik

Gilead has co-pay assistance and your doctor should know this. If you check other threads many are getting over the hurdle put forward with insurance limits that co-pay imposes. You really need to take a very pro-active approach to getting treatment asap. Do not put up with being refused on the basis of income or insurance restrictions!

Take care and check into this option.
Eric

[frost68]

Well I've just now committed myself as it were to go try and get treatment . Its going to take 3 or
4  months to get in the thick of it probly. The waiting list for a hemotologist here is 30 days.
I may be wrong but I think I need to be phlebotimized some if it will make me feel better . Anyone that thinks they have info that might help my situation feel free to call 865-285-9179
ask for Allen

[Lynn K]

Hi Frost

Have you checked My Support Path form Gilead?

Providers and patients can call 1-855-7-MYPATH (1-855-769-7284) for assistance

http://www.mysupportpath.com/

https://www.harvoni.com/co-pay-coupon-registration?evo_source=MYSUPPORTPATH&_ga=1.1849721.973567089.1408674970

 Pay no more than $5 per co-pay for HARVONI

We believe that cost should not be a barrier to receiving treatment. That’s why the makers of HARVONI offer a co-pay coupon. If you are eligible, you may pay no more than $5 per co-pay. Some restrictions may apply. See Terms and Conditions below.

Good luck

[frost68]

This seems like a great program but alas it plainly says people like me who are on medicare
are not eligible. Once again I'm excluded. lmao i'm used to rejection by now . I really appreciate
the post though.  That info would have been usefull to me back before i got on disability.
 Compared to my privitate insurance medicare isnt worth the paper the card is written on.
Its good for paying 80 percent of my md but thats about all. I'm very forttunate that
I had a relativly good paying job and draw near the max so i can pay all these dang co pays .
If i had had a low paying job and drawed less than 1000 a month even phlebotomy would be
out of reach for me
 

[Lynn K]

Dang sorry about that

Seems like the less you have the more medical treatment and medicines cost what an upside down system

[frost68]

I dont know how accurate it is but I pulled a statistic thats says 3.2 million people just in the US
have hep c . One billion dollars will only treat just over 11000 people. Do the math and figure how many people are going to die because they cant get their hands on handful of pills that are available .

[cj]

Hi frost I also have pct ...chloroquine has a lot of side effects I took the hydrokychloroquine its safer one a day with in a week could not get off the couch I have a whole bottle of it ..I quit taking it but might of just been me..endured 12 phelbotomy's my hemoglobin and feritins are down but my perferins were still high when. Got on harvoni believe you have to treat pct first..take hot showers it dries the old ones and cover new o es with antibiotics and b andaids  use apricot face scrub on them also ...could they use a vein in your leg...know they hurt but it really helps ..and for sure call Gilead and I believe there is a few other programs out there to help out with prescriptions..oh went to dermatologist and he had no problem giving me the hydrokychloroquine ..alot of doctors never seen pct and dont know what's out there...I would get on computer to look for new updates or treatment for pct ...there is one more treatment out there out there was ...if you need me to look for it again I could ...good luck cj