Hepatitis Forums
Hepatitis C Main Forums => Post Hepatitis C Treatment => Topic started by: Bobby T on January 02, 2018, 09:45:24 am
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I've been Hep-c free for 2 years. Liver is at stage 4 liver disease but otherwise feeling great! A year before I was put on the Harvoni, I'd experience chills and some sunburn when in the sun. This was after 5 treatments starting with the interferon trials up to Pegaferon/ribo/some other protease inhibitor I don't recall the name of. Of course the sweating/night sweats were awful!! Docs mismanaged ascites and I ended up at a different hospital, Dartmouth Hitchcock in New Hampshire and they drained me immediately of 18 lbs of ascites fluid, had to have a hernia operation due to muscle loss, then was given the Harvoni. Took it for 6 months, though 'cleared' on first 30 days. After spring time, I needed 40 plus sunblock, never used more than coppertone #8 all my life. Last summer I could not tolerate the sun for more than 15 mins. I would break out into a rash, skin looked like it had been 'steam burned'. Used UV clothes, super sunscreen, and cortizone cream on exposed areas to relieve itch and bumps. (Rash looked like 'riba-rash'). The next day, I'd be clear, just to start all over again. Finally dermatologist asked if I sweat. No, I had stopped sweating 2 years prior. She looked at my prescription list, and shook her head. Though I was not taking any 'sun sensitive scripts now" the combos of Hep c drugs, all the side effect drugs they had me on (17) at one time, could have caused my sweat glands to shut down. She called it 'post hep=c treatment' condition. So now I'm hep-c clear, but can't even go for a car ride in the sunlight or swim, fish, etc.
I'm seeing and epidemiologist in Feb and am wondering if any one has experienced this and what they might be doing about it? 14 years fighting the hep-c and I can't go out doors, except in the night! I've also been sober for 34 years, so night clubs are not an option!
If any one has some insight, please feel free to pass it on. Also, now that the cold weather is here, it feels like I'm soak and wet, under my skin, and the rash is back.
Thanks
Bob Tierney
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Bobby, sorry to hear about all you've been through. The only piece of it where I might know of something helpful is the sun sensitivity. If you search on "sun protective clothing," there are garments you can buy that have even greater than 40 plus sunblock. We're not supposed to name brands here, but good brands of the summer garments are designed to be breathable. That might be a better solution for your non-sweating skin than covering it with creams.
I had bought the clothing before I knew I had hep C (I prefer it to creams for normal protection). In my almost 3 years of reading these forums, I can't remember Harvoni being associated with sun sensitivity, but I haven't read every thread. Re: sweating, I stopped needing deodorant (unless the temperature and humidity are super high) when I reached a certain age, which was before being treated with Harvoni. Aging results in sunburning more easily, too, but aging alone doesn't explain your case.
I hope your situation improves with time. Big congrats on the 34 years of sobriety!
Gnatty
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Thanks "Gnatty" Last summer I bought the clothing, over spf/uv 60 and above, about 200 dollars worth and a 125 dollar pair of sunglasses (non prescription) as per my derms suggestions. I put on the creme's, another 60 bucks a tube and went out in the car for a ride 'pre-fall' in VT. Came home, red as a beet, pock marks on chest and legs (Covered with levi jeans, long legged). I called the Derm immediately. We went through a q & e, she asked are you sweating. No, haven't in a couple of years (I'm 63) she said get very cold compacts, put under arms, across forehead and behind knees, also groin area. 15 minutes later, compress's were hot but my body cooled! She diagnosed it as "anhidrosis". So I was having 'heat stroke symptoms!
When I switched my docs, just before Harvoni, she went down a drug list. She discovered that 1, I was allergic to interferon, and that was noted on my 3rd treatment. Due to the reactions to the pegaferon/riba, before I started treatment they 'stabilized me at the Vermont Hospital with Lithium for mood, Zyprexa, Trazadone, Ambien for sleep, and the highest dosage of Zoloft they could administer! Also on Flomax, sprilactone (Lasix) and Nadalol, (4 pills of Nadolol a day for ascites). As I began to have 'knock me off my feet' muscle cramps, they added 2 mgs of clonazapam!. I was getting endocopy's every 45 days to 'band' varicies in my esophogus and had a chronic cough that they sent me to 'pulmonary' for. There they gave me inhalers, squirts/pills and finally codiene, which I would not take more than 3 days of.
I was also experiencing psorosis, though at the time, about half my liver with 'bridging fibrosis" By the time they finished with me (A year on the treatment) and the pills, I had 4th stage liver disease, complete psorsis, 18 lbs of fluid in me, going to my brain, 3 hernias from my chest wall, to belly button, then across to my hip bone. Dartmouth drained me, got a transplant surgeon to do the hernia's. Clotting factor very low and 119 lbs, I was put on the 'live transplant list' with my son present for operation....
I came out of surgery, put on Dilaudid for 5 days (I only took half of them for sleep). ten days after surgery I was walking my dog, could think straight, though still some restless leg syndrome, which was caused by the VT docs putting me on serazone and trazadone at the same time....In 2 weeks after surgery, I started the Harvoni, though at 119 lbs, should have been 155 lbs, and 45 days later I traveled by myself, made the plans and all, to Chicago for the "Fare Ye Well Grateful Dead show" A buddy from High School, last seen in 1973, got me a ticket, and I stood and danced in the pits, though in long sleeves, long jeans and sunglasses!!!
At that time I was down to Lasix and Nadalol and of course a very low sodium diet. Now I'm down to Nadalol and .5 mils of clonazipam as the restless leg syndrome won't go away....If only the Liver Specialist had taken me off the Pegaferon, none of that would have happened. Harvoni was being trialed at the time
So that's the WHOLE terrible tale....Your input is appreciated, it was the first thing the derm suggested! So I have some "Stevie Wonder sunglasses and UV clothing for sale CHEAP!! 3 types of aloe vera....And although a lot of folks say I should sue the doc, I won't, not my style, nor do I need the stress, but I'll trade all the above for a night time "Dead and Friends" ticket, or just some relief from the sun!.....It really pays to have a sense of humor and live in kindness and show some humility...Smile, Smile Smile!!! Anger can kill me as fast as hep-c!!!
Bobby Tierney
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...And although a lot of folks say I should sue the doc, I won't, not my style, nor do I need the stress, but I'll trade all the above for a night time "Dead and Friends" ticket, or just some relief from the sun!.....It really pays to have a sense of humor and live in kindness and show some humility...Smile, Smile Smile!!! Anger can kill me as fast as hep-c!!!
Bobby Tierney
Good for you! That really is the best attitude. I thought I detected humor in your first post when you wrote, ". . . so night clubs are not an option!"
I've had my own major setbacks when docs didn't manage "above all to do no harm" (I'll spare you the "organ recital" but it's amazing how many body parts a person can do without) so I have some idea of where you're coming from. Fortunately, by the time my hep C was finally diagnosed, I was better at running away from docs who gave me the willies, so I avoided the interferon and ribavirin. The cost was being F4 by the time Harvoni came along, but, hey, you and I are both still breathing!
Sorry I don't have any actually useful suggestions, but it's a pleasure meeting you.
Gnatty
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Hey Gnatty
You may have just saved yourself the hassle re interferon. Genotype 1a only had about a 30% chance of treatment working for us anyway. I treated with interferon monotherapy 3 shots a week and no ribavirin ( Haden’s been used yet for hep c) no change. Second time I treated it was 1 shot a week of pegalated interferon with ribavirin. This time they had viral load testing available. My viral load INCREASED on treatment! Third time peg interferon ribavirin and a trial med still a null responder no decrease in viral load. Leave it to me to have the tough bugs.
So anyway you probably just saved yourself some headaches by not treating back in the day. For me after all that I still have cirrhosis.