Hep C Discussion Forum

Thanks Pablito,

I was able to do some research on Poke Root and while it has some possible benefits, if used in a specific manner, I'm concerned about it's noted dangers as well. The research is poorly documented and unsupported by the US FDA. While one source says the salve may be helpful, there are oral tinctures as well. I do see one source says it's safe and another claims it can be deadly in low doses. That's why I don't recommend the use of supplements or encourage their endorsement here on the forum while on treatment. Good luck.

Hey Pablito,

That's an interesting post, would you happen to have references to that information? Whenever we go into such detail, it's nice to have access to the documentation. I would like to read it if you can post the link.

As always, anyone should check with their physician and pharmacist before using any medication or supplement while on treatment and for the 12 week period following the end of treatment. The reactions to these products and the impact they may have on your lab results is unknown and often alter the true results.

Thanks Pablito, that was very insightful!

RE ITCHING SKIN & RASHES:  What many medics haven't fully explained to their patients is that drugs like Ribavirin attack the auto-immune system, arresting bone marrow production and directly destroying red blood cells. The primary "side-effect" of the drug's action is auto-immune dysfunction, similar to people who suffer Auto Immune disease. The reason for this aggressive approach is to prevent HCV's targeted infestation of red blood cells at point of origin. At the same time, the Solvaldi attacks the virus on a genetic level, causing it to misprint faulty copies of itself as it attempts to replicate into the cellular DNA. The white cell count rises disproportionally and the immune system weakens dramatically. The body loses in-built resistence to everything that seeks to populate the skin, moles, warts, fungal infections and insects. Everything from fleas & bedbugs to invisible outdoor seed ticks suddenly attack in significant numbers. Excess white T-cells are dispersed to the surface of the skin, especially around the spinal area, causing the same skin rashes & 'crackle-skin' experienced by Auto Immune disorder. Additional drugs prescribed to allay these symptoms such as antihistamines or cortisone have not proven very effective, as well as stressing the immune system further. These days (in Australia at least) the local Chemists or Drug Stores have taken to including a broad range of herbal cures and health supplements. I was able to find something called "Poke Root" in the form of an ointment, which is remarkably effective. Typically used for rashes, insect bites and swollen glands, Poke Root apparently has the unique ability to absorb excess white T-cells, as well as fight fungal infection and draw out toxins from the skin, including small ticks and intractable insect bites. I bought two jars and regular application worked like a charm. I combined this with half-hour daily exposure to sunlight on my verandah, the old-time remedy for skin problems. Although I am post-treatment now, at the time my doctor was surprised and pleased by the dramatic turn-around. He remarked how he was plagued by skin rashes and an outbreak of warts during his cancer treatment the previous year, which all disappeared a few months after he finished medication. He agreed that many such medications apparently compromise the Auto Immune system, leaving it to rebuild itself afterwards. I hope this information proves helpful to some of you struggling with the infamous "Riba Itch."

Syd, I'm obviously new at this cuz I don't know how I post something b4 being done. Lol Sorry to hear about your skin issues, hang in there you are close to being done. :) It will be well worth it once we reach SVR indeed!! I'm all about drinking water, eating right, and light to moderate exercise (what our bodies tell us we can do), it's best for the journey we are on! Last Friday I completed12 weeks of Sov/Riba. It's all good. Best wishes to you! You got this! Have a good night! ~Sarah.

Hi Dave. Thanks for the tip on the soap & baby shampoo, hadn't thought of that. Not doing to bad other than the Riba itch. I totally get the being bummed or depressed because of the Riba, sorry you felt that way today, I completely broke down at work, hated everyone seeing me like that. Oh well I'm a woman, everyone is used to women being overly sensitive right? Lol Glad you got out for a bike ride with your shades on! ;) it does change perspective & location, and the fresh air is nice. Didn't get out today, maybe tomorrow. Oh & yes so much better than taking the daily Riba and definitely worth it in the end! Glad to hear from you... Keep on pressing on! Have a great night! Sarah.

Hi,

Great to hear that you got out for a bit of exercise, it helps a lot in many ways (beyond the exercise it changes location and perspective),  ... I got out on the bike today, it was beautiful out and not too hot so it was a great little ride.

Was feeling a tad depressed and bummed that I was feeling the Riba ... the bike ride took that all away. (Wore my shades too).

Takes a while but it's Oh so much nicer than still being on the daily 1200mg of Riba.

Hang in there, sounds like you're doing well. Cool compresses or cool water can help a little with the itching, keep clothing away for itchy areas where possible, use no soap or a tiny bit of baby shampoo instead of soap. Benedryl should help, take in evening.

 

Dave

 

Thank you. Doc. Told me to try benedryl for now and if that doesn't work to call and they'll have me try something else. No visible rash but definitely Riba reaction. I've not scratched but I really wanna lol not that it really helps cuz it's an internal feeling! This too shall pass and no matter what it's ALL good... Just looking at it like it's one step closer to being stronger & healthy!! 1 day at a time... Good news is I was able to take a walk today, didn't power walk or do tooooo much, but... Fresh air really helped & it lifted my spirit even more today!

Don't you see the Doctor today?

JimmyK

Hi Dave, thanks for sharing, your story is encouraging. I go through moments of depression thinking life won't be normal again, but I know deep down it will, or whatever "normal" for me means. Lol your story reminds me there is always hope! holy cow if I didn't have hope, I'd be a mess & lost! congrats on completion of Tx and congrats on being able to do all that you've started to be able to do, that is awesome! I agree with you, our bodies tell us what we can or can't or should and shouldn't do, and a decade ago I lost 105 pounds cuz I was a big girl, and I started listening to my body then, so during Tx, listening, & my health was my main goal & people at work were supportive, thankfully. I'm blessed! The first 2 months of Tx I was able to be somewhat active, but very light exercising, the last month wiped me out and I had 0 energy, which worsened my depression because I couldn't exercise even a little and that makes me feel better, fresh air does too, even though I have to be in the shade for now. I take over the counter Simply Sleep, that seems to work most nights, Doc. said if it didn't they'd prescribe something. My skin felt like it was on fire, or pins and needles, or crawling or itching all at once today and I just wanted to scream, it has subsided some but still very annoying & frustrating today. I'll keep you posted. It's so good to meet everyone here, share stories and get & eventually give advice from experiences. Have a great evening! Best wishes to you and continued renewed strength!

Thanks for the info, Tig, will check it out. Thanks Scruffy and Cinnamon Girl. Definitely appreciate all the advice and tips. I'm 41 so I know when my energy comes back it won't be like when I'm in my 20's but I'll take it easy and give the process time. Doc. said today that my last blood work came back good, slightly low on iron but not tooo bad so they're not real concerned. They said the same thing, keep drinking lots of water, be patient, rest, etc... I've got a lot of fight left in my & I will do all I need to to finish my journey strong. It's encouraging to read positive stories & get helpful advice here.

Hi BL, welcome, and congrats on finishing your Sov/Riba treatment! 

Like others have said, it took me a good 6 months before I could say I`d fully recovered, but I`d also done the old Peg/Riba combo, like a few of us who are still around here.  Some people start feeling a lot better sooner than that, but that`s the sort of time period you need to allow.

Having said that, you`ll soon notice yourself gradually feeling better and your energy levels improving.  So carry on looking after yourself well, the same as you did while on Tx, and follow all the good advice already given.  You`ll get there, you just need to have a bit of patience and not try to push yourself too hard too soon.  

Best of luck with your results, keep us updated! 

Hi wmlj1960... Thank you. I'm glad to hear you got back to feeling normal in time! I know it's a slow journey. I've been following what doc.'s say to a T... lots of water, pedialyte, eating healthy, & when I could I did light exercise. I'm going to stay out of the sun still because I quickly realized I can't do that yet. Thank you for your advice, I think I will up my water intake even more. Lots of water was very helpful during treatment, I found that out quickly. I really don't like taking a sleeping aid but the doc. said I could and I do, and it works, I was just trying to stop taking them so I don't depend on them but, I took it last night and slept 8 hours!! Wahoo! I guess it's not time to stop taking them yet. I have to say other than my vision, lower energy, skin crawling (after being in the sun for a little bit) and aches because of the fatigue, I'm not doing that bad, I know it could be worse, so I am thankful!!! Happy Monday!

Hi BL,

I'd like to direct you to the signature lines that reside under our posts. There you will find the dates of treatment, type of treatment and the SVR date. It often includes a little information about the genotype, lab tests, viral load and fibrosis stage. It's helpful when replying. You will find the instructions to set that up, as well as the abbreviations we use here. Here's the link to that information:

Signature/Abbreviations

Hi Bright Lamb,

Welcome, we're glad you're here!

I just finished Sov/ Riba 12 weeks and wanted to suggest that you keep drinking LOTs of water and eat lots of greens, they help to detoxify the system and will help flush that Riba away. You might want to check out our nutrition section, lots of great ways to give our bodies what they need to move on from Tx.

Congrats on finishing Tx ... Good Job!

 

Dave

You're more than welcome Bright Lamb! Please let us know what you find out at the doctor tomorrow. I know it will all work out the way you want it to. We have all had a moment when we wondered if life was ever going to return to normal or close enough to celebrate and it does. There have been miles of rocky stretches of road that never seemed to end and then we turn a corner, where the road is paved and life is better. Best way to deal with it right now is trust that it will and have a positive outlook. Do that and tomorrow will be a brighter day, I promise! 

                 

Hi Bright Lamb,

Welcome to the forum and congratulations on completing treatment! The hard part is over and you'll have steady improvements each week, but it takes time. You have just completed a very agressive drug regimen and it affects your body and metabolism in many ways. The Sovaldi has a short half life and will clear your system within a week. Unfortunately the Ribavirin is a different story. It is released very slowly and will take every bit of 6 months to be free of it. That doesn't mean you'll feel poorly the whole time, but you may continue to have skin complaints, moodiness and sun sensitivity. Continue to wear sunscreen, and get a good pair of UV sunglasses. It bothered my eyes too, but that will steadily improve. My vision has gotten poor, but that's all about age and genetics. Your doctor should be able to address your sleep and skin issues easily.

These are effective medications and I'm sure you have no reason to worry. Things will improve fairly quickly and you won't feel like garbage for long. Others will be along to share their thoughts and offer advice. Hang in there, it gets better!

hi pablioxxx. sounds like you really went through the wringer mate.i know that riba can be harsh on people some more than others. it is a nasty drug but until they come up with something less toxic it will be used. would like to know if at eot you were virus undetected? i wish you well in your recovery sems like you  are getting back to a bit of your energy.hope to hear how you get on so will look forward to reading your future posts best of health to you                                                                                    william

I am now in third week post treatment Solvaldi/Ribavirin and just starting to feel a little better. Although very keen for a cure, I found the drug protocol very torrid indeed, rendering me severely anaemic and barely able to bless myself. Within a few weeks of commencing the protocol, Ribavirin's attack on red blood cells and bone marrow production completely brought down my auto immune system. Almost immediately, every insect around the house and garden began biting me all over my body. In particular, ex-dog "seed ticks" which infest the grassland of suburban areas were embedding themselves in multiple clusters. Covered in bites and sores I became the "man in the bubble" confined to the lounge room couch for three months. As I grew more anaemic and the white cell count rose dramatically, I broke out in a massive crackle-skin rash down the centre of my back in similar to people with auto immune disease. Warts and strange fungal growths also began randomly appearing. Any immune-boosting supplements one might normally have taken were counter productive to the necessary effect of the drug which was directly destroying red blood cells to limit replication of the virus. Fortunately, net-search revealed an anti-fungal herb called POKEROOT able to counter excess white cells in the skin. A locally available Pokeroot ointment became my saviour, regular application massively reducing and controlling the rash and other skin eruptions. As a double bonus, Pokeroot's unique ability to pull toxins and foreign bodies from the skin also worked to salve multiple insect bites and draw out the constantly embedding ticks. I also found an half hour daily sun exposure to upper half of body seemed to dramatically assist healing effects and compensate for long periods frozen to the couch. Much weakened by the end of the 12 week Solvaldi/Ribavirin protocol, I found it very slow to resume any energy or recover any immune system response. As an obvious sign, all outdoor insects continued to attack me in droves as well as a persistent cough, as if my daily vitamin C intake had no effect. At that point, I stumbled across a new scientific study of chemo-therapy patients which found a way to "reboot" a compromised immune system. Researchers discovered a three day protein fast (sufficient to cause ketosis) scavenged away all the old white T-cells and reinitiated bone marrow production. I decided to try the fasting method, spending three days below 200 calories one egg & toast for breakfast, miso soup during day and some steamed veg at night. It worked, insects are no longer biting, cough subsiding, energy starting to return. All I can share at this point, I'm off to do some walking and try to get back into condition after a few months of solid couch-surfing. I hope my experience might offer a few clues to all of you out there working towards getting your life back.

 Ribavirin has a half-life of 12 days (288 hours). source:  http://www.drugs.com/pro/ribavirin.html

 

Here is a link to a drug half-life calculator:  http://www.drugsdb.com/resources/drug-half-life-calculator/

 

 

larry,

here's my 2 cent's worth of info. i believe you're on the east coast, so it's prime time for allergy sufferers. the ribo rash is allergic reaction, so why don't you switch to benadryl or zyrtec? both are otc. also i still have a very mild itchiness at night & always keep myself hydrated & apply about 4 layers of lotion/cream/day.

at one point i had the horrid itchy scalp as well. it took 1.5 mo. to clear up after i ditched the rx topicort & head & shoulders. here's what worked for me . once/twice a week i used a good clarifying shampoo, next the good tea tree shampoo and finally a calming lavendar conditioning rinse. two weeks & i was all clear. the hair salon people recommended it!!!!

good luck & one day at a time w/ the lingering sx.....

sandy,ucbgal

Hi Larry,

I'm surprised you had a reaction to Melatonin. That's typically a product that doesn't have any real "felt" side effects, at least I'm not aware of any. Not until you mention having them that is. I imagine, like everything, some things cause different sensitivities in people. If you're sure it's the Melatonin, don't use it. Like I said, I took it to try and ward off the constant ringing in my ears and it helped a lot. Then I noticed my sleep patterns were drastically better. I don't want to take it forever either, so once I'm sure this stuff is out of my system, I will stop it. As far as Sovaldi, I'm not sure how long to expect that to stay with you, I'll look and report back. I do know that the Ribavirin is another story. The reports and articles clearly claim it can take months to totally leave your system. My doctor told me to expect at least 6 months for clearance and I believe it. I'm still having skin problems, itching, occasional rash, sun sensitive (easy sunburns) and of course our favorite, the rage. It does improve by the month but I hoped that I'd be different and have no evidence of it after a month or two post treatment. I'm just past the 3rd month and it's still raising it's ugly head to remind me of it's presence. Better but still there. You might ask your doctor if you can stay on a lower dose of Ambien on an as need basis for those first few months. The documentation is available that shows the lingering effects of Ribavirin. So you wouldn't be going in there unprepared. Just remember this though, while it does hang on longer than any of us want it to. You will notice improvements steadily as you go forward. Just know that you have to be cautious during post treatment as you were during until those side effects are no longer a problem. When you get that SVR report, it's all going to be worth it! Good luck Larry!

Tig

Larry, I had some issues with insomnia for a few months during tx and avoided taking sleeping meds by simply waiting until I couldn't stay awake any longer. I called it knock out exhaustion. I didn't work during tx, so I found myself living on short naps the entire time. I know some people don't have that luxury and the first time I went through treatment I was working full time plus, so there were many tired days and long nights. It's almost unavoidable. I experienced a lot of night time restless leg syndrome too. That didn't help with sleep matters either. But the good news has been a continued lessening of these symptoms and after a couple of months I'm not having much trouble at all in that respect. One thing I might add is, during treatment I suffered from tinnitus (ringing in the ears). Whether you're having that issue or not, I kept looking for ways to reduce it and saw one doctor suggest low dose Melatonin. I had a terrible problem with it and after I started it, I noticed fairly quickly that the volume of the ringing reduced significantly. But the point I want to make is the unintended consequence of taking it. I started sleeping like a rock! I had always heard Melatonin helped with sleep and by mistake (fortunately) I discovered a relatively safe sleep aid. I don't plan on taking it forever either but right now as I'm clearing my system of all these drugs, it's serving a great purpose on different levels. You might try it, but right now, you need to do what is required to get through treatment rested. Once you get finished with it, you'll be better able to deal with the insomnia on a level playing field. These drugs you're on cause some unpleasant side effects. Once you're done, they typically go away. Hang in there!

Tig

The doctor didnt say but i am sure it was sx of ribavirin.