Author Topic: Porphyria-Beware- Nasty Stuff-What to check for (Read 42470 times)

Scooter · « **on:** October 15, 2014, 10:07:39 pm »

I've been getting blisters and sores on my hands for months.
Showed them to the intern at the liver clinic, the doc was out playing golf, i guess.

I was assured it was unrelated to my hep C/cirrhosis. I finally arranged a walk-in appt with a skin doctor. He recognized it immediately as Cutaneous Porphyria which is a LIVER disease, somewhat rare except in Hep C patients who make up 90% of cases.

It is also responsible for all the other symptoms I was complaining about at the liver clinic.

Skin discoloration
Terrible smelling Urine
skin sores, blisters, itching pain

There is no cure for this, once it is triggered, but it's treatable.

Here's what to look out for, you get weird blisters on your hands like bad sunburn, then little bumps and scabs that heal slowly. Really foul smelling pee.

If you have these symptoms start using total sunblock and wear a hat in the sun, go see a skin doc and make sure to tell them you are Hep C positive. Getting this into remission is not too difficult. This condition is rare, but not for Hep C folks. It can really tear you up and become painful, take my word for it.

For more info search <Porphyria Cutanea Tarda (PCT) >

Check out the Phlebotomy Treatment for PCT.... if you are uninsured and broke you could do this yourself if you can hit a vein and run a tube to an aspirator.

lporterrn · « **Reply #1 on:** October 15, 2014, 10:27:11 pm »

Oh Scooter - PCT is a drag. I am sorry. Thank you for doing an A+ job on educating us. A friend of mine wrote this - perhaps it'll help: http://hcvadvocate.org/Hepatitis/factsheets_pdf/PCT.pdf

WaltFrazier · « **Reply #2 on:** January 19, 2015, 10:10:12 am »

Hello, I was recently diagnosed with PCT. Man my arms, hands, legs and feet are covered in sores that heel slowly and itch. Sun definitely makes it worse. I tried the Phlebotomy therapy to reduce ferratin lkevels but it didn't slow down the itching. I stopped as I await Harvoni. My hep doctor believes it will go away once the Hep C virus is cleared. Hopeful! Anyone else have this problem...Thanks!~

cj · « **Reply #3 on:** January 20, 2015, 09:05:57 pm »

I also have pct have taken 12 phelbotomy treatments but still have scabs on arm and legs starting taking harvoni 7 days ago still itching have no one really to talk to.. everyone thinks im making it up or something really hope to find someone who is going through what I am to talk to ...also have not much energy .suffer from shortness of breath ...and brain fog running rapid mostly straight out of my mouth...

Mugwump · « **Reply #4 on:** January 21, 2015, 02:07:09 am »

Quote from: cj on January 20, 2015, 09:05:57 pm

I also have pct have taken 12 phelbotomy treatments but still have scabs on arm and legs starting taking harvoni 7 days ago still itching have no one really to talk to.. everyone thinks im making it up or something really hope to find someone who is going through what I am to talk to ...also have not much energy .suffer from shortness of breath ...and brain fog running rapid mostly straight out of my mouth...

Hang in there and pay careful attention to your dietary needs especially if you have been having phelbotomy treatments! What you will experience the most is thirst, make sure you drink at least 2 liters of water per day. You need to hydrate normally so your liver and kidneys can clear the dead virus particles!

I had the beginnings of mild Porphyria and having the liver start acting more the way it should definitely helped to relieve the blisters and itching. Mine is easing to a great extent and I am not scratching away at blisters and blips like a junkie does any more!

I also found that just drinking coffee and tea was not a very good idea as caffeine is a diuretic and will effect you more during treatment because Harvoni definitely causes your liver to pass more bilirubin. Try a temporary switch to decaf especially if you are jittery and nervous all the time for no reason. I know I sure as heck was in the first week because of my morning habit of having 3 cups of kickass coffee even if I drank no water to help me pee.

After carefully following the recommendations of my health care providers things changed almost overnight. Haley my clinic nurse must have been shaking her head as to why the heck I was acting like a space cadet at the beginning of week two until she finally said; "just follow the guidelines PLEASE Eric" and I knew I was in deep doo doo for not doing so in the first place!

In the first week of treatment I did not pay careful enough attention to the fact that my liver was producing more bilirubin because the Harvoni was ridding the liver of infected cells and bilirubin is the way the liver discharges of waste dead cells that are then replaced with new healthy cells.

Please eat as you need it, do not deliberately starve yourself thinking that it will help the liver! The so called 'brain fog" will clear in a short period of time. Your liver should right now be ridding itself of toxins created by the removal of inert virus rna that has essentially had Harvoni's viral replication inhibitor components latch on and make it so they cannot encapsulate and replicate in the liver the way hepatitis virus retrovirus (hcv) type infections do if left to do their dirty work killing off healthy liver cells.

The anxiety caused by not fully understanding exactly what is happening is not a good thing and it sounds to me very much like you need extra encouragement to see this through!

You have come to a good place. Learn to take your mind off what is happening and you will find it much easier to deal with what is happening to your system. If you are unsure please call or deal with a medical professional.

DO NOT LET YOURSELF BE OVERWHELMED by what is going on and fall into fear. Many here have been through this for a very long time can help you through what is happening.

Whatever you do DON'T stop your treatment unless your doctor knows and has told you to do so. But equally follow the guidelines regarding the dosage and avoid double doses!

Use a calendar and check mark that you have taken your medication and notate the time, if you wish keep a treatment log and make certain that the time you took the meds is marked. This way you can easily keep a pill count as the pills are dispensed 28 at a time and you can count to make sure you are on track with taking the meds.

If the anxiety becomes overwhelming hopefully there is someone you can call, but please keep in touch with people who you know and care enough to listen and help you. This web site is a great resource but we all need support dealing with this virus. If you have a clinical nurse or specialty clinic where you receive treatment then please at least call them if you cannot get a handle on what is going on with your treatment.

It is amazing what is now happening to your liver! After 2 weeks of treatment I felt better than I have in 20 years, after receiving the 4 week results of my liver panel showing the lowest ALT levels I have had in 30 years, then receiving the joyful news that my viral load was almost undetectable at 24 days of treatment the tears of joy and relief were impossible to describe and the smile and love from my spouse made me feel young again.

To your good health and in hopes that you get over the hurdles many who undergo treatment for this terrible disease experience and soon!

Eric

cj · « **Reply #5 on:** January 21, 2015, 04:46:20 pm »

Thank you for your reply ..I take my pill in the morning not really having side effects like I thought I would and for sure will see it through ...my major concern. Is pct and as it has no cure will it be gone at the end of treatment and the hep c is what caused it...want to be able to go outside again ...still itching some today rash still here .harvoni sure is a miracle gives me hope...I will try to drink more water now you told me about removing dead virus cells ... im still in shock that I have this ....I also pray you have a good recovery and appreciate you taking time to message me ...this is a first time I ever joined a forum ..coffee stays lol

Mugwump · « **Reply #6 on:** January 22, 2015, 12:28:12 am »

Quote from: cj on January 21, 2015, 04:46:20 pm

Thank you for your reply ..I take my pill in the morning not really having side effects like I thought I would and for sure will see it through ...my major concern. Is pct and as it has no cure will it be gone at the end of treatment and the hep c is what caused it...want to be able to go outside again ...still itching some today rash still here .harvoni sure is a miracle gives me hope...I will try to drink more water now you told me about removing dead virus cells ... im still in shock that I have this ....I also pray you have a good recovery and appreciate you taking time to message me ...this is a first time I ever joined a forum ..coffee stays lol

CJ Before a definitive diagnosis of HCV g1a an elevated level of iron and hearth palpitations caused my doctor to consider doing a phlebotomy. He went on holidays and I saw his locum and he did a more thorough liver panel which showed signs of alcoholism and liver damage. So I faithfully cut back to almost nothing on my consumption of home brew beer and wine. THIS DID NOT lower the counts in my blood work so the locum gave me a req to test for HCV. I shrugged it off until my regular doctor came back. His hands shook as he re-wrote the req for a HCV screening test.

I worked for almost 9 years post diagnosis until I could no longer be employed and then finally went for peg interferon-ribaviron treatment after it was shown to cure almost 50 percent of individuals with genotype 1a. Needless to say it did not work for me even over the full 48 weeks.

Now there is a promise of a realistic chance to cure this disease. I have mild stage 4 cirrhosis and fortunately for me only the beginnings of blisters from elevated iron and then only very slight. I had one on a finger near the nail that was a concern and over the years other that have come and gone as well as the usual little ones in various places. After about 3 weeks on Harvoni it completely disappeared and all my so called "liver spots" or age spots are starting to fade. So is the itching and so are my chronic set of racoon eyes that have made me look like the little bandits that upset out garbage cans at night here where we live.

When your liver function returns to a more normal level it is amazing how good you start to feel. At first it is almost as if someone has slipped you a happy pill and you do not know who! But the reality is you will start to feel alive again and it is wonderful for those of us who have for many years lived with a feeling that they are essentially suffering a terrible hang over.

This disease has cost me my lively hood, made me unproductive as a worker, made others including medical professionals believe I was a useless drunk. Fortunately the people that I love and know me know the real reasons why this has happened to me.

I hope your iron levels drop the way mine obviously have and soon. One thing I have done that seems to help is cut down on my consumption of iron rich foods for periods of time, I considered becoming a vegetable terrorist like my sister but...sorry I like a nice sirloin on the barbie far too much and it would be cruel to watch others tucker in while I sit there pretending to be in ecstasy munching on my gourmet tofu burgers with a roast carrot or zucchini! LOL

One thing I will say about strong coffee is that it will seem even stronger on Harvoni. HOLY CRAP I get the jitters and bounce off the walls like 5 year old kid who is hooked on Red Bulls and donuts if I drink more than two 8 oz cups in the morning. Kickass coffee also seems to exacerbate the treatment head aches and brain fog when the caffeine fix wears off.

All the best in your recovery from a terrible manifestation of poor liver function that dumps too much iron in the blood and most likely a common affliction amongst those with long term HCV infection.

A disclaimer here is in order though. I am not a doctor but from what I have read Porphyria is related to poor liver functions. So logically anything that improves your liver function should also help relieve at least one of the causes of the affliction.

Eric

cj · « **Reply #7 on:** January 22, 2015, 03:09:47 am »

Thank you for you reply and words of encouragement. I really appreciate it ..dont know when I got this liver score is 26 so they say ...broke out in what I thought was poison ivy ...very bad case of it when. It didnt clear went to dematologist it was pct could not get off my back all summer blisters were very painful my skin looks like I had a tan hair all over my face baths made it better once they dried I could pick them off and cover new ones with antibiotic and b andaids lots and lots of bandaids stress could make me bleed out of my pours ...than I here about new treatment that no one could afford so was thinking was not sure how I could live like this Indefinatly. .could not take any more phelbotomy hemoglobin at 10 ferritin at 9 porphyrins 295 so was better than it was but still scabs smaller but itchy....today not to itchy no big patches of anything new ....so im dareing to hope I will get my life back ...soon ....I didn't know how sick I must of been ...and looking forward to a new healthy life ...im still in disbelief over this ...hope your doing well also ...as I been reading all the different stories and hope everyone is blessed with cure ..

cj · « **Reply #8 on:** February 17, 2015, 12:40:05 am »

hey walt how are you, im doing well ,, i havent heard from you not sure if you got my last message,,hope you started your meds and starting to fill better, anyway stay in touch and let me know how your doing,, cj

Mugwump · « **Reply #9 on:** February 17, 2015, 08:09:26 am »

Quote from: cj on February 17, 2015, 12:40:05 am

hey walt how are you, im doing well ,, i havent heard from you not sure if you got my last message,,hope you started your meds and starting to fill better, anyway stay in touch and let me know how your doing,, cj

Eric here, in fact this morning I am going steelhead fishing for the first time in 4 years because I finally have the confidence to wade cold waters that have more current during the winter! Which is why I am on twitter @Hat_Float

So if you don't hear from me well just maybe I got a little too ambitious. But like all things in life challenge is a good thing!

The little blips and brown blisters on my body are gone so I would guess my iron levels are starting to normalize again. The GI I am seeing is not at all concerned so he is just doing the essential hcv test not a full blood panel this time!

Cheers
Eric

PS
If I catch a fish I will post a pic but it will have to be remote cause google drive does not link to the php in this forum so no pics except off site.

cj · « **Reply #10 on:** February 19, 2015, 01:29:46 am »

Are you saying the brown scars will clear as well I have some on my legs not to much on my arms and vesicles on the back of my hands ..was at dr today im und ..so amazed ..energy level up ...just eating ..fish is even sounding good ..hope you find some ...day 36 and its over ...hopefully dont go back til july..for final test..cj

Mugwump · « **Reply #11 on:** February 19, 2015, 09:27:48 am »

My levels were never that bad but the brown spotting on my face is lessening so yes. My complexion is more pink and almost looks human again instead of gray ghost with racoon eyes!

Keep your stick on the ice CJ

eric

PS we do not kill, we catch and release these fish as they are precious and soon all fishing for them will be banned here on Vancouver Island. But aquatic ecology is another topic and many do not "believe" in climate change so I would not start down that path on this thread.

cj · « **Reply #12 on:** February 21, 2015, 12:56:10 am »

Eric are you finished with treatment how long did you take it...I got 12 weeks im on day 37...did you have any aching bones...sore muscles ...not sure if its the meds or old age...lol...what are you catching that you cant eat it..I live down in pa lots of fish to eat here not that I eat it alot..nice to think about other things now..cant wait to get this behind me..

Mugwump · « **Reply #13 on:** February 21, 2015, 09:37:12 am »

Quote from: cj on February 21, 2015, 12:56:10 am

Eric are you finished with treatment how long did you take it...I got 12 weeks im on day 37...did you have any aching bones...sore muscles ...not sure if its the meds or old age...lol...what are you catching that you cant eat it..I live down in pa lots of fish to eat here not that I eat it alot..nice to think about other things now..cant wait to get this behind me..

No CJ I am on 12 of 24 because of stage 4 cirrhosis. I still have new brown spotting in places that has not disappeared but nothing new and the spots have lightened up in color. And yes there is muscle pain at times and lack of stamina once you pass about 8 weeks of treatment. The specialist that I am seeing agrees that reduced liver functions though normal will improve as the liver finishes dealing with the cells killed off by HCV and as the organ heals itself those of us with cirrhosis will regain good stamina depending upon how well we individually heal.

My stamina is perhaps only 30 percent of what it was 15 years ago when hiking 15 miles with full pack in the bush to go fishing was not beyond my daily capabilities. Just last year before treatment I was rowing my pontoon boat against stiff breezes all day long and getting very good aerobic exercise fishing.

We will see how well our stamina returns.

As for the fish, well, these are wild winter Steelhead we are angling for and we only leave the river with pictures. So far this year the fly fishing has not been great because of unusually high water on the Stamp but it ain't over yet and the river only just finally came into shape for us fly fishermen yesterday.

Once a good friend upon learning that we were going to a famous isolated lake with trophy sized Rainbows that is designated, one fish over 50cm the rest catch and release only commented, "GOOD, that is why it is called fishing not CATCHING!" Funny part is the fish out this lake taste disgusting even though they look terrific and in theory should be fantastic to eat. Many who have taken a 10 plus pound fish out of this lake have then found it discouraging when even their dog snubs the nose at the food offering!

I do not go fishing to catch fish as catching fish is not very hard to do. There is nothing more beautiful than coming to a river or lake and having a chance to hear nothing and have the mind also do nothing in response, then gracefully angle in peace and silence. That is what I have been doing to make the treatment have real meaning, because when the treatment is over reality will once again set in and work will again dominate my life, in the same way that catching fish does for some people.

On another thread that I started I will post some pics and links to a nice vid of my brother Chris casting for steehead on the Stamp River. The chance to fish in this incredible place again in my lifetime was the whole reason why I fish and so do many anglers. Only 5 months ago I was considering giving my gear away and giving up any hope of being able to wade rivers again!

Hope you respond as well to treatment as I have.

Eric

cj · « **Reply #14 on:** February 21, 2015, 11:47:34 pm »

Oh sorry eric not up to much on angeling or fishing ...sounds tranquil and relaxing ...well I was getting some energy and did a few jobs and over did it..now my hole body is achy like arthritis. .drinking alot of water and had to take a second Tylenol tonight not touching the pain...hope this passes I have a couple days on this job left ...its a couple cause I get to where I have to stop .....always something...you said after 4 weeks im on day 39 so I quess im there ..does harvoni reverse cirrhosis ....cant spell it sorry ...dr not really never told me anything to much my stats his assistant gave me were wrong when I went the other day he said Vl 72 she told me 800 so be it ...and asked if I got the harvoni because of the pct he said no...but didn't tell me why ...in the letter from ins says dr said it was medically necessary. ..not complaining about getting well ...just was wondering about if the pain was normal ...and then I asked about reinfecting my self with tooth brush... reading lot of post ...anyway I changed that and cleaned the couch due to the pct ...let me know how your filling hope all goes well for you ....oh and thanks for chatting ..cj

Mugwump · « **Reply #15 on:** February 22, 2015, 01:09:02 am »

Harvoni cannot reverse cirrhosis but given the fact that the liver is the only internal organ that is made to regenerate itself, being free from HCV will allow the liver to create new cells at a greater rate than they are destroyed or naturally die. The skin is the other major organ that regenerates itself and skin health and regeneration is very closely related to liver health so many skin issues are a direct result of difficulties with liver functions. As are many immune disorders.

I have no doubt that people who live longer than others have a greater capacity to replace cells in their body especially the skin and liver as they age.

Cirrhosis is a stiffening of the structure that the liver is built on and an excess of fat cells and dead tissue that can constrict vascular movement of blood. The amount of function that will return depends greatly on the level of damage to the structure that suspends the cells that do the actual functions. Currently my liver test panel for alt ast is as good as a young person that does not drink. However that does not mean that there is no damage to my liver it simply means that what is left of the liver is doing the job properly in a chemical conversion way.

There is also a question of how rapidly the liver will function to filter and convert food to fuel the body after treatment and recovery. Logically if the liver has less structure to do the job the job will be not as efficiently done with a damaged liver with good but reduced function levels.

With us men this can easily result in an excess of iron in the blood and is a common issue with a damaged liver. So modifying the diet to reduce iron intake accordingly, or even having a phlebotomy to reduce the blood volume and lower iron levels can help. But remember the HCV was causing liver cells to die and send excess iron into the blood stream and I am sure you know that this is not a good thing.

A little know fact is that Polar Bear liver is so high in iron that it is actually very toxic, or course this is only a concern if you decide to eat one. But in the case of Polar Bears it is us who can wind up on the menu so as any Eskimo knows you don't mess with them critters. Same thing with a Grizzly, though their liver is not as toxic it is not a good idea to try to eat one especially if the Griz has anything to say about it!

So yes your liver will heal and your levels of iron should stabilize as the HCV is removed and is stopped in its tracks.

Back to fish as that is what most of the Grizzlies prefer to eat, not people here on the West Coast thank heavens, though if we continue to destroy all the streams where they get their fish that might just change, the so called adventure eco-tourism industry here in BC might wind up providing a ready source of nourishment for them. LOL

No fish on this trip but the assurance that I am still capable of wading a difficult river with large boulders with moving water was well worth the outing and expense. We all need to test ourselves and try to do things that challenge us in some way, for me this exercise simply helped me greatly to stop thinking of myself as an invalid with little hope of experiencing a great outing again in my lifetime.

Harvoni is capable of freeing us from much more than HCV. Equally importance to society It can free us from the fears associated with becoming feeble and thus too much of a burden for our children and loved ones to worry about.

Here is hoping that we all see improved levels of liver functions that allow us to become active and healthy again!

Best wishes

Eric

cj · « **Reply #16 on:** February 23, 2015, 02:39:41 am »

Hi eric..than dont he stand to reason that those of us with pct especially high iron levels have skin that has been compromised ...and will shorten life span considerably ...as pct is in curable thus leaving us susceptible to skin damage from the sun plus other factors...you must have some medical knowledge or like myself read everything you can find onThe subject... in either case ..it worries me cause the scars from pct to not heal quickly and wondering weather its effecting other organs ...or now that 5th urod does not function properly ...weather clearing hcv at this point would make a difference now...and now you want to feed the poor bears some tourist ...you think like a Canadian if you were from the us ...we would breed them and throw then in the river for the bears ..lol...cj

Mugwump · « **Reply #17 on:** February 23, 2015, 12:16:36 pm »

Quote from: cj on February 23, 2015, 02:39:41 am

Hi eric..than dont he stand to reason that those of us with pct especially high iron levels have skin that has been compromised ...and will shorten life span considerably ...as pct is in curable thus leaving us susceptible to skin damage from the sun plus other factors...you must have some medical knowledge or like myself read everything you can find onThe subject... in either case ..it worries me cause the scars from pct to not heal quickly and wondering weather its effecting other organs ...or now that 5th urod does not function properly ...weather clearing hcv at this point would make a difference now...and now you want to feed the poor bears some tourist ...you think like a Canadian if you were from the us ...we would breed them and throw then in the river for the bears ..lol...cj

Sorry CJ unfortunately I have a Canadian sense of humor or humour or whatever. Yes the fact that liver diseases can compromise the ability of the skin to regenerate is only logical. I truly hope the best for you regardless of where you come from. It stands to reason that if you free yourself from HVC then the liver will be able to work better with the skin to heal scars.

To me what seems most important is to give your liver and skin the best chance by eating sensibly and exercising sensibly. Obviously exposure to too much UV light is not a good thing regardless.

As your liver heals itself logically there should be an increase in the speed at which the skin can heal scaring. I have always had thin skin on my lower shins and when I scrap or cut them it does not heal for months. So I have to wear heavy clothing to protect them even when working at jobs that others do not have the same problem with skinning their shins.

Sometimes I would be working and look down and would be bleeding heavily from my shins. I got in the habit of caring sterile dressings just for my shins. Here is hoping when I get back to work in a month or so that my shins will not bleed so easily every time I bump them for some silly little reason. I have scars on my shins from over 2 years ago and they do not completely disappear for a very long time!

Regards CJ
And from a Canuck
"don't look a bear straight in the eye or it might just think you are spoiling for a fight to get at the grub!"

Eric

cj · « **Reply #18 on:** February 24, 2015, 01:12:49 am »

hey Eric ,, do you have pct? or just alot of iron and is treatment helping with the break outs mine is minimal now and yes have scars on my legs ,,i sure hope they clear up ,, but your right getting the liver free is more important than a few scars ,,,you know i dont think i ever want to look a bear in the eye unless its in the zoo ,,i probaly would just plain pass out right there..have you ever seen a real bear in the wild and what did you do..lol not that its any of my business,, but just in case you wanted to share,,oh besides dont know yet if ill be able to go back in the sun.. impossible to see one hiding in your house,,, i think i could take the fish ....stay well ,,and hoping all works how out for you,,, get healthy name of the game,, cj

Mugwump · « **Reply #19 on:** February 24, 2015, 02:03:53 am »

Quote from: cj on February 24, 2015, 01:12:49 am

hey Eric ,, do you have pct? or just alot of iron and is treatment helping with the break outs mine is minimal now and yes have scars on my legs ,,i sure hope they clear up ,, but your right getting the liver free is more important than a few scars ,,,you know i dont think i ever want to look a bear in the eye unless its in the zoo ,,i probaly would just plain pass out right there..have you ever seen a real bear in the wild and what did you do..lol not that its any of my business,, but just in case you wanted to share,,oh besides dont know yet if ill be able to go back in the sun.. impossible to see one hiding in your house,,, i think i could take the fish ....stay well ,,and hoping all works how out for you,,, get healthy name of the game,, cj

No I do not have full blown pct but my doctor was thinking about a phlebotomy series just before I was diagnosed with HCV and when the diagnosis came in positive for HCV active he did not bother checking for low UROD which is the next step. I regularly have blistering happening and had to have some pre cancerous skin lesions removed on my face and back over the years but they all came back negative for cancer except one on my nose that was pre cancerous.
We have a very good cancer agency center here largely because of the fund raising done by a marvelous person who died of cancer named Terry Fox, he is a national hero.

Out here in BC we have some of the best cancer treatment and research going on in the world. Cancer screening is quick and readily accessible to all, unlike HCV viral load testing which is only done at one facility and is very expensive because of the software and costly technology involved in the test.

Just before starting Harvoni I had one lesion on my middle finger on my right hand, it swelled up brown to about 2 millimeters square in size and I considered having it excised and tested for cancer. But at 4 weeks into Harvoni it just backed down and dissipated and did not reappear. I have had them off and on for many years. Always they cause the concern that they could be a melanoma. I did have fairly smelly urine and other problems that come along with decreased UROD.

Here is hoping that getting my iron levels stable and ridding myself of HCV will mean less minor skin problems for me and an end to the skin lesions and difficulties healing in places on my skin.

CJ I sincerely hope that you get over the PCT soon as I know that it can be terrible and have seen others who have it and the scarring and light sensitivity it causes.

Best Wishes and good thoughts to you!

Eric

PS
Bears come with the territory out here, one time working in the bush a co-worker stopped to have a leak. And I got out of the truck to have a stretch. Not more than 15 feet away a large black was just sitting there quietly watching the action. My partner did not even see it as he was otherwise occupied. As he finished I quietly pointed up the hill and he looked the critter straight in the eye, which was a mistake. I had to make myself look big and do a little stomping to make the bear think twice about doing a charge. It looked at me and decided not to take a chance with the two of us and slowly moved off after letting out some barking snorts to let us know not to follow.

The first bear I ever came face to face with was when I was berry picking at the age of 11. It was no more than 30 feet away munching away on a patch that I was picking. Because it could see that I was not going to threaten it and it was fat and healthy it just kept on munching while I slowly retreated down the hill deliberately to not take a high ground and thus threaten the animal. I have had wolves check me out as I hike streams and again try to never become a threat or competition.

I am more scared of HCV and crazy drivers talking on cell phones than wild animals in a healthy environment. Large aggressive domestic dogs raised by idiots cause more fatalities and injuries than wild animals, there is a greater chance of being mauled to death in Detroit than in the bush!

cj · « **Reply #20 on:** February 24, 2015, 11:26:32 pm »

Eric through my reading over and over , the liver has 8 parts the 5th urod being the one the controls the iron and makes heme which is why our blood is red ,,when this part shuts down and the iron backs up it gets in veins close to the skin which is why the sun and light react to it ,,before the blood letting i had hair all over my face and looked like i was tan i woke up one day and had so much hair in my pits my daughter asked me if i also grew some balls..lol they say it seems to be associated with hvc but dont know how or if treatment will help since at this point there is no cure after 12 blood lettings my hemaglobins and ferritin are as low as they can go my porferins are still at 295 or was before i started treatment going to take test after eot to see where i stand than,,,my husband passed of alcoholic cirrhosis we owned a bar and he drank more than we sold in any case i was left to try and run the place on my own made almost 3 years but just got to hard cant trust anyone soon as you turn your back people are stealing from you..now have a friend living with me who has hep c and cirrhosis .. all his levels are down ,,sodium potassium all that stuff but he wont stop drinking ,,looks like hes got to now, he can barely walk but wants a beer ,,,, i heard Canada got some big drinkers ,,,i hear camping and drinking my kinda place or use to be as i quit drinking about 3mt ago ....in any case thinking you must have some sort of pct the symptoms you mentioned sure sounds like it..... good luck to us we need it...cj

WaltFrazier · « **Reply #21 on:** February 25, 2015, 08:59:43 am »

Hello CJ and Eric, I just saw this post! I realize I posted here several weeks ago. Since then I started Harvoni (Day 7). So far no real side affects. I drink 100 oz water daily. Don't work much but pee a lot! lol. I also have this PCT issue. My legs, hands, arms and feet itch, scan and bleed for past 2 years. I use LidoCaine patch and tons of cortisone cream to reduce pain. I went to 5 phlebotomies and just can't handle them. It reduced my ferritin levels but did not notice anything in terms of lessening of rash etc. I was told by my Gastro that the Harvoni should straighten out my iron levels. As you can see in my sig line below, I am 30+years, Stage 2 VL 2.5 million. Failed 48 weeks of INTFRN + Ribavirin.
Last night I broke out in bad rash on arm caused by new shirt. Man it sucked. The symptoms of PCT are far worse then I would ever have imagined. I pray that this harvoni straightnes it out.

I also am a very big fisherman. Live in South Florida and in the Florida keys so do a lot of offshore big game fishing and diving. Staying out of the sun is impossible for me. I wear long sleeve shirts all summer. Looking fwd to being "normal"....

cj · « **Reply #22 on:** February 25, 2015, 07:47:26 pm »

Hey walt it will help arms do not have any on them and I got vesicles where the blisters were now the vesicles are breaking open witch is good my hands may not show any signs of the pct once there gone if you dont have know or have them its like hard white dots under your skin dr said you get them be cause you had the injury there ..pct to weird but there busting through now so hopefully hands heal I do have some pot marks on my arm but no sores so it's like day 44 so im thinking you might get some good results as well..for first time im believing it..good luck cj

WaltFrazier · « **Reply #23 on:** February 28, 2015, 11:35:29 am »

Hey CJ...just checing in...Day 11...Had 3 days of migraine headaches but drinking over 100 oz of water and they headaches have PASSED. The PCT got worse but now it's atrting to seem like the sores are healing alittle...Huh. I am starting to feel much more alert and payng more attention to details. I am actually planning my next business company startup. So far so good....Still have trouble sleeping...Take Xanax which gilead said was fine. I kinda like this harvoni stuff...helping my mind lol

cj · « **Reply #24 on:** March 01, 2015, 12:52:38 am »

Hey Walt ,, take a lot of hot showers it seems to dry them out,,my arms are clear now and the vesticles i had on my hands are breaking through and scabbing over so im hopeful too ,, i drink alot of water but having a lot of body aches and a rash not like pct just itchy and filling really bloated 38 days to go ,,at first is did have patches on my arms real small ones having a few still on my legs hope the last 30 days they will be done ,, one leg was totally clear the one popped up so i was down to one leg but keeping the faith i know it will work,,,i also been clear minded and working alot even though im sore...i will tell you did hit my hand the other day and it cut easy but not bad im thiinking its the meds ...wont it be great not to have to deal with this anymore,,,good luck with your treatment and keep me posted i really want to know if your pct goes away ,,me more than anyone know the misery it causes,, good luck ,,, cj

Mugwump · « **Reply #25 on:** March 01, 2015, 03:04:40 am »

Quote from: cj on February 24, 2015, 11:26:32 pm

,my husband passed of alcoholic cirrhosis we owned a bar and he drank more than we sold in any case i was left to try and run the place on my own made almost 3 years but just got to hard cant trust anyone soon as you turn your back people are stealing from you..now have a friend living with me who has hep c and cirrhosis .. all his levels are down ,,sodium potassium all that stuff but he wont stop drinking ,,looks like hes got to now, he can barely walk but wants a beer ,,,, i heard Canada got some big drinkers ,,,i hear camping and drinking my kinda place or use to be as i quit drinking about 3mt ago ....in any case thinking you must have some sort of pct the symptoms you mentioned sure sounds like it..... good luck to us we need it...cj

I never was a heavy drinker. I quit completely as soon as I was diagnosed having cirrhosis over a year ago. I was pre cirrhotic for many years and the HCV damage seemed to come and go after I had combo therapy over 10 years ago but the truth is it was slowly getting to the point where my immune system could not keep up with the liver damage it was causing. And my liver panel blood work actually slowly got worse after I quit drinking so the Hep C was winning and Harvoni was my only chance.

I don't think Canada has a higher level of drinking per capita than the US. Up here the liquor sales are more of a tax grab like cigarettes, our sin taxes are extremely high but few other than the rich complain about high consumption taxes on items like booze and smokes. LOL They are the ones that complain the most about the cost of health care and then try to offshore the Canadian economy by buying real estate in places like Belize...Heck we even have specialty legal/ accounting firms that will help you take your money and run, they advertize their craft on tv.

Soon here in Canada (BC) for sure we will have booze being sold as a grocery and the government liquor stores will without a doubt slowly all close. We have a Republican style of government here now and privatization and selling off of public assets is all the rage. Essentially they are just lazy politicians that have learned that it is easy to abrogate public responsibility in the name of profit for those who back them.

Enough politics.

Yes if you have HCV quitting drinking has to become a priority because HCV will over time compromise the rate at which the liver can heal. I know Winston Churchill drank like a fish smoked cigars and lived over 80 as do many politicians! But those of us with HCV must give our livers the best chance to heal and the drinking must go or we will not make it. I know if I was a heavy drinker I would not be here right now.
We only stop drinking for ourselves, it is not a selfish thing to turn away from drinking or smoking. The reality is that no one except the individual quitting will benefit from stopping either vise, especially those who collect taxes from vice. Perhaps this is what your friend needs to consider before it is too late.

Cheers and take care
Eric

cj · « **Reply #26 on:** March 02, 2015, 02:27:15 am »

Hello Eric,, well i guess the dr scared my friend as he quit drinking the other day ,, i take care of him though a agency down here so i take him to the doctors and such and found it interesting that is alt and ast are normal it also said he was a carrier was wondering can you have hep c and it not be active just a carrier,, taking him back to dr tuesday will be interesting to know what vl he is ,, also i know you on treatment for 24 weeks was wondering how much time you have to go yet i have 36 more days and cant wait cause im so sore not tired but just achy everywhere ,, and so uncomfortable bloated and itchy other than pct which is a real drag, as far as drinking goes not a big drinker myself i use to like my wine,, the states are tying to let liquor stores go public here they can be a real pain give you a license to sell it than harass you every chance they get ,, but i wont get into that,, and the polices and law here are self serving to say the lease and wont get into that either.. ,, i have had a lot of energy and trying to teach myself crafts so now i trying to make lamp shades ,,keeps me busy cause dont really socialize since i found out about my condition and the pct like i said was miserable and debilitating im glad to have someone to talk to about all of this i really dont discuss it with my family or anyone so its good to hear from you and walt once in awhile,,i hope your treatment is still going well ,, have a good day tomorrow ,, as im always checking out the stories here befor i go to bed at night seems i gotten into the habit of doing this ,,now with harvoni maybe no one will need to talk or share anymore,, here is a one a day pill ,, and there you go cured... i even heard there is going to be a vaccine for it so soon it will be gone ,, how about that ,,good news ,, ttly cj

BubbaT · « **Reply #27 on:** March 28, 2015, 10:38:16 pm »

Quote from: WaltFrazier on January 19, 2015, 10:10:12 am

Hello, I was recently diagnosed with PCT. Man my arms, hands, legs and feet are covered in sores that heel slowly and itch. Sun definitely makes it worse. I tried the Phlebotomy therapy to reduce ferratin lkevels but it didn't slow down the itching. I stopped as I await Harvoni. My hep doctor believes it will go away once the Hep C virus is cleared. Hopeful! Anyone else have this problem...Thanks!~

Walt, be careful about vibrio infection from the warm salt water, My Gi told me that people with cirrhosis are at risk to be infected with this bacteria. And have died from this infection. You probably already are aware but I wanted to say something just in case you not aware.

WaltFrazier · « **Reply #28 on:** March 29, 2015, 11:41:22 am »

Hey Bubba....I heard about that and will look further into it. I don't have cirrhosis I am stage 2. I am just about 6 weeks in Harvoni but PCT is still bad...not much if any improvement. PCT sucks....

Onefluover · « **Reply #29 on:** October 03, 2015, 04:36:03 pm »

I have many symptoms of porphyria minus the blisters. Abdominal pain, vomiting, high BP, joint and muscle pain, extreme light sensitivity, fatigue, complete male pattern baldness that includes thinning at the back of head and temporal peaks, most notably dark urine that darkens much more after left out over night, many other signs that look like porphyria such as high iron. Hereditary porphyria is of course incurable but if it's a result of Hep C liver disease, it stands to reason that curing the Hep C which is sending enzymes up and down, would also help clear up the porphyria. Does anyone know anything about this?

Onefluover · « **Reply #30 on:** October 03, 2015, 04:39:51 pm »

I apologize. I searched for porphyria here and only found two posts and responded and now see there is much more information that I will now read through. Thanks.

Onefluover · « **Reply #31 on:** October 03, 2015, 06:50:38 pm »

Well I learned a great deal from this thread. Many questions were answered. Thank you to all who contributed. Especially thanks to Eric. (Who reminds me of Christmas 1980 when I was 15: The Orpheum and Granville, The Jazz Club, the lions at Lions Gate Bridge, Polar Dive, ferry rides to the big island to fish for steelhead, my girlfriend "Starr" who dumped her boyfriend M.F. for me because he was too short for her but then went back to the future...) and Bo Strange Mortil who showed it all to me. Such a beautiful city!)

beto · « **Reply #32 on:** October 03, 2015, 09:16:16 pm »

Hey all,

With respect to iron and ferritin; Harvoni magically lowers ferritin (at least for me). I do not know why, however, mine went from about 300 to 83 in four weeks of therapy. I used to get phlebs that would lower it 30 to 50 points each treatment. I have had ferritin levels up to 800 and have seen a friends go over 2000 . Many of the hep symptoms are exacerbated or caused by iron overload alone. Just saying...I've always been a naturopathic/integrative type, but this med is the bomb.

KimInTheForest · « **Reply #33 on:** October 03, 2015, 09:32:48 pm »

Quote from: beto on October 03, 2015, 09:16:16 pm

With respect to iron and ferritin; Harvoni magically lowers ferritin (at least for me). I do not know why, however, mine went from about 300 to 83 in four weeks of therapy.

Very interesting Beto. This might explain some of my problem because I turned out to be very iron deficient post-treatment (12 weeks of Harvoni+ribavirin). And that iron deficiency was impeding my ability to rebuild my red blood cells and hemoglobin to their pre-treatment levels, since the ribavirin had really lowered them due to the hemolytic anemia it causes.

At 5 weeks post-tx, when we finally checked my ferritin, it was just 29 ug/L. Reference range is 15-180. After 4 weeks of daily iron supplements (25 mg), I have brought my ferritin level up to 41 ug/L. But that is still "Probable Iron Deficiency" according to my lab. I had assumed my iron deficiency because I had been vegetarian for a number of years and I am also a big tea drinker. (The tannins in tea block iron absorption significantly - up to 70%!) But I now wonder if the Harvoni lowered it even further. Thanks for the info.

kim

beto · « **Reply #34 on:** October 03, 2015, 10:18:20 pm »

Kim-

You also had ribo, which from all I have heard is notorious for causing anemia. So for you in could be a double whammy. However, if your hemoglobin is close to normal, keeping ferratin lower like 50-90,is probably not bad, or even good. I know that folks with hemochromatosis (genetic iron overload) receive phlebs until they get ferratin down to like 70. Funny, the symptoms of iron overload can resemble anemia. Balance, right?

KimInTheForest · « **Reply #35 on:** October 03, 2015, 10:49:50 pm »

Quote from: beto on October 03, 2015, 10:18:20 pm

Kim-

You also had ribo, which from all I have heard is notorious for causing anemia. So for you in could be a double whammy. However, if your hemoglobin is close to normal, keeping ferratin lower like 50-90,is probably not bad, or even good. I know that folks with hemochromatosis (genetic iron overload) receive phlebs until they get ferratin down to like 70. Funny, the symptoms of iron overload can resemble anemia. Balance, right?

Interesting. But my hemoglobin is nowhere near normal yet. I wish it was! In fact, it has not budged since my EOT level 9.5 weeks ago, which was 99 g/L. (Reference range is 120-150.) That's where I think my iron deficiency comes in. I think my body cannot manufacture more hemoglobin until it has more iron...

And my ferritin at this point is just 41, which is still being flagged "Probable Iron Deficiency".

I think everyone's relationship to iron is different. And while clearly some people need to be vigilant about not getting into an iron overload position, I have been adversely affected by iron deficiency most of my life, as has my mother. We have both had to take iron supplements more than once to even approach normal levels of serum ferritin. The intricacies of the body, eh!

kim

beto · « **Reply #36 on:** October 04, 2015, 01:38:12 am »

yes...we are certainly all different chemistry sets. Hope you get where you need to be soon. Did you know that there is enough iron in a Polar Bear liver to manufacture one nail...teehee...I read that somewhere once

Forums Index

Welcome

Author Topic: Porphyria-Beware- Nasty Stuff-What to check for (Read 42470 times)