pablitoxxx wrote:

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Of course, I understand. Sorry, I didn't realise this was a drugs-only forum.

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 It's not a drugs only forum. It is a Forum that protects itself by not even hinting of a product for medicinal purposes.

That was a bit uncalled for.

JimmyK

Of course, I understand. Sorry, I didn't realise this was a drugs-only forum. I find it very perplexing though. How can the Chemist sell an untested product like this "Poke Root" ointment? Why is Poke Root untested when it seems to have been around a very long time and appears to be so effective? Surely some diligent medical researcher would have noticed it by now and looked into it? Especially when it's sold at Chemists and pharmacies? I don't understand how they can sell it to the public. I should just be glad it's out there I guess.

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.

Glad you feel information to be helpful. Checked a lot of research when my immune system first crashed a month into Solvaldi-Ribavirin protocol. Never expected to be discussing it in a forum like this. I found all information on public record and am sure it's quite checkable given a bit of patience. When searching data on the mysterious rashes, I was struck by stark symptomatic parallels with Auto Immune Disorder. When I learned that Ribavirin directly destroys red blood cells and drastically arrests bone marrow production, it became obvious the immune system must be seriously compromised. Rashes therefore seemed likely a result of proportional increase in white T-cells, as found with Auto Immune Disorder. Rapid appearance of numerous body warts, fungal skin infection and sudden increased susceptibility to insect bites, tended to confirm the drop in immune response. My doctor was intrigued because he experienced something similar during his drug protocol for cancer the previous year. He was inclined to agree that an immune system crash seemed most likely culprit, especially where symptoms so closely matched AID. When I discovered the Poke Root ointment at the Chemist, I was overjoyed to stumble upon something that worked and so quickly erased the itching rash. My doctor couldn't see any problem with a topical salve, especially where it typically comes in a harmless vitamin E base. Although he hadn't encountered Poke Root before, he knew it was on the "safe register" for over-the-counter sales. Poke Root's effect was far more positive than the cortisol or antihistamines, no negatives as far as we could tell.

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.

Hi Pablito -

hope I don't have the bed bugs because I seem to have everything else! Not sure if I can walk into a pharmacy and ask for Poke Root with a straight face, but if I get really brazen I'll let you know. 

Seriously thanks for taking the time to explain it so clearly. 

Cheers Syd.

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."

Bright_Lamb wrote:

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Syd, I'm obviously new at this cuz I don't know how I post something b4 being done.

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 I'm not sure I follow what you mean by this. Do you want to know exactly what is in your post, and how it will look before you submit it? If so, did you notice the "Show Preview" button (shown circled in red in the attached image). You can select this function after compiling the content of your post to see how your post will look prior to posting it.

 If I misunderstood your comment and you already know how to use the 'Show Preview' button then my apologies.

Hi Bright Lamb,

i began 12 weeks of sof/dak/riba on 12/04/15 and then moved to another 12 weeks of just Sof/dak. I will finish treatment on 27th May. The riba caused terrible itching for me too. I have had allergies to other drugs which involved similar "on fire" rashes to yours. I did get some cortisone based cream but it barely scratched the sides ( so to speak!). Even now ten weeks down the track my skin tends towards itchiness - rash and terrible itching slowed down quite quickly after treatment. My skin has horrid little bumps which werent there before and is very dry. 

In hindsight a small price to pay if we are SVR after treatment. Living through it is not easy. looking after yourself, exercising, drinking water and logging in here are all good antidotes.

Cheers,

Syd

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

Sounds like a Ribavirin reaction. Ask your doctor about an antihistamine and if you have a rash, there are some creams/lotions like hydrocortisone, Calamine or Caladyl. Your doctor will be able to address this today when you go in. Don't scratch!

Don't you see the Doctor today?

JimmyK

Hi BL,

I just finished Apr 12, 2016 from 12 weeks of Sov/ Riba. so about a month ago now. Brain Fog from the Riba cleared first .. whew! That was pretty debilitating for me. I still have some shortness of breath but am fine if I do some exercise. I'm able to get out and do gardening and yard chores now (I'm 63 so not so spry as you), went on a nice 6+ mile bike ride the other day ... all feels great, exercise really makes me feel better. I didn't move from my desk much for about two months there so I was gaining weight and energy level WAS very low ... MUCH better now.

I'm using this whole Dx/Tx/Soon to be SVR as a springboard to eat better, get more exercise, drink more water on a regular basis and just take care of my self and ENJOY life. I'm having a ball. I had a bit of depression during Tx but that seems to fade as I get more exercise. Had sleep problems too but that was true before Tx ... I take Trazodone 1/2 hr before bed and it helps me a lot, plus I think it helps my mood slightly as well.

Don't do more than you feel like for a while, just let your body adjust and get some of the Riba out of your system, you'll be able to do more and more as time goes on but don't push it at first, just go with what feels right (our minds and bodies usually do a good job of telling us how to proceed). Trust that, roll with the punches (I still get episodes of Rage and a little exhaustion), those times seem to not be as intense and and are shorter lived, especially if I drink LOTS of water and eat well.

Oh, did I mention the infamous Riba Rage ... I still get bouts of it ... fewer than during Tx but I'm still getting them, unfortunately.

That's going to take a while I think ...

Best of luck, keep us posted,

Dave

Hi just cruised in for an update. I'm just now reaching the six months point of recovery from Solvaldi-Ribavirin combo. Certainly cleared of the virus & familiar old symptoms but was hit quite hard by dillibating effects of drugs themselves, Ribavirin in particular. My general strength, stamina & immune response have fallen well below previous levels. Regular fatigue attacks across the day have me actually feeling like an old man for the first time I turn 65 this month. While my liver is supposedly repairing & regenerating for the first time in 40 years, I now have other problems I did not have before. I can no longer produce insulin or tolerate any sugar whatsoever. Nor wheat products or processed foods. However, what I have learned is that aggressive drug protocols like this also destroy all the gut flora in the same way antibiotics are now known to do. The "pro-biotic" lifeforms in our intestinal tract are apparently essential for digestion and the ongoing production of a broad range of enzymes and chemicals required for various organ functions. I purchased some popular brand Probiotics from the local Chemist and now seem to be experiencing a slow improvement in digestion & stomach-related issues. The next thing is immune response. I highly recommend a new immune booster product which appears on Australian shelves as "Astra-8" or "Astralagus-8." It's a combination of the best known natural immune boosting herbs of both the East & West. If I run out of it for a week or so, all my rashes & insect bites rapidly return along with a noticeable drop in energy. It seems to be the best pick-you-up immune booster around, worth knowing about if you're feeling peaky. So, that's me so far trying to get my system on track. According to general accounts coming thru this forum, the liver takes about a year to regenerate, reorientate actually stop over producing bile and restore detox cells. And clearing Ribavirin from system (or its effects) reputedly takes about six months to a year in some cases. Everyone also agree that Water & Walking are key recovery ingredients. The Solvaldi cure is no instant coffee but still far better than the alternative.

Had to remove the Chemist's name. We don't endorse or advertise retail/wholesale businesses. We also do not recommend the use of supplements at all while on treatment, without first discussing it with your physician and pharmacist/chemist. Thank you.

Tig - Forum Administrator

-- Edited by Tig56 on Monday 9th of May 2016 03:30:11 PM

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! 

Hiya BL

To repeat whats been said already lots of water. I'll add maybe a little light walking in the morning and the evening. Get out when the sun isn't. Enjoy a little nature, it has a way of helping to heal. I was on the old tx and I felt better right after stopping the meds but was a long way off from feeling normal. It took me about a good 6 months + to clear the Riba. Well worth it :) 

Hello Bright Lamb and welcome from me as well.

 As already said, stay adequately hydrated with 3-4 liters of good water daily and it will help you feel better and help get the ribavirin out of your system. I took riba for 24 months during which time my Hemoglobin got down to 7.9 g/dL at the end. I started to recover fairly quickly after Tx but it took over 6 months to get back feeling normal again. It will happen but you need to be patient and help your body by eating healthy, keep your physical activity limited to what you can comfortably do, avoid the sun and use sunscreen if you can't, and talk to your doctor about your sleep issues. Your body needs it's sleep.

 As you see so far, we have a supportive and knowledgeable group here and you'll fit right in. Congratulations on finishing Tx and we'll be looking for you to post what you find out from your doctor tomorrow and the news of your SVR in 12 weeks.

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.

Hi Blou,

Welcome to the forum! I'm glad to hear that you've successfully completed treatment and are on your way to both recovery and SVR!

Here's a link to a thread posted by two of our senior members that will help you understand what you might expect with your recovery period and clearing of Ribavirin. You can find additional information by using our Search function at the top. Speaking from my own experience, it took several months to recover from the long term effects of that drug. I hope this info will provide you with a bit more insight into what's ahead. I found the rash, sun sensitivity and by far the irritability took longest to see relief from. I hope you're spared that length of time! It's a great medication for its purpose, but I'm glad that we're seeing treatments that don't require it like the old SOC. Good luck!

http://hepcfriends.activeboard.com/t53003896/understanding-ribavirin/

Tig

 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/

Hi, brand new to this site! I was really excited to find some people they may understand what my treatment has been and help me through post treatment!

I did the 24 week treatment of rib/sovaldi for hep c type3 and it was grueling.... I have never had suck profound exhaustion, mood-swings of anger and depression, skin broke out worse than highschool and not to mention bouts of nausea and severe headaches....

They originally had my treatment plan pushed through my insurance because do to an old infection I had received doing dnr research my long bones grew extra tissue around the middle which was extremely painful, so I'm still suffering a lot. Guess I'm one of only 12 lucky contestants to receive this constellation prize world wide...

My treatment ended(finally! woohoo!)on Oct. 10th, but I still seem to get tired, have riba anger(saw somebody mention it somewhere on this page), occasional nausea and the occasional throbbing pains around my bones...

Reading everyone's stories really means everything to me to know I'm not alone... Wish I had found this sooner, because this has been a really long road for me.

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

Tig,

I am 5 weeks post treatment of sovaldi and riba combo (12 weeks) and am sleeping good now but still have occasional itching issues. Oddly, I don't have any issues at all for a few days and then I wake up and itch and itch and itch.

The doctor prescribed atarax which works very well but causes me to sleep and sleep and sleep. Is there anything milder that might work for the itching? My scalp and body from the waist up itches although there is no sign of any rash or anything visible. This is very annoying. I tried washing my head in selsun blue for several days but doesn't help. Nothing helps!

Are you still having itching issues post treatment?

Larry

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

Tig,

Today was my 7th day post treatment and feeling better and thinking more clearly but still can't sleep except to pass out from exhaustion and have itchy crawly skin still at times. Like you said, the riba flashes its ugly head at times but does seem to be lessening a little bit. Did you take the riba for just 12 weeks or 24 weeks? I can't imagine taking that stuff longer than 12 weeks or what it would be like to take the interferon darts.

I tried melatonin and it made me dizzy all night but didn't to sleep at all.....just felt drunk which is a feeling I don't like. I had flashbacks of dizziness all day and into the evening and not likely to ever try that again. I know others who like it too but didn't work for me.

Ambien works fine but am trying to wean myself off as I anticipate getting a job any day now and need to be able to sleep again as I doubt I will be able to get any refills on my ambien. I hope it doesn't take a month or two to start sleeping again. That is a long time!

Larry

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

Tig,

What about sleeping? This is my biggest concern. I want to get away

from ambien and sleeping aids.

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

Hey Larry 

Super Congrats on finishing and being UND, sorry to hear about your itching issue.

Did your Doctor say that it was caused by anything in particular, perhaps a rise in your Billirubin numbers.

matt