My Hep C Journey

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woofer4
Regular Member


Date Joined Jan 2016
Total Posts : 35
   Posted 1/12/2016 7:30 AM (GMT -6)   
Hi Allison, congrats on your treatment...soon you'll have passed the 1/2 way point!
Kudos also on doing your homework and being so well prepared.
Having said this, I absolutely echo the advice themiz gave you.
Stay on your current regimen of Ribavirin.

As you know, Ribavirin causes bone marrow...period. The severity and consequent anemia varies individual to individual. Most folks will suffer with some degree of anemia which manifests with chronic fatigue, general weakness, maybe some shortness of breath, etc., and then there are the usual side effects, but most patients will not need medical intervention aside from a prescription or two. The bone marrow depression will also cause a decrease in platelet and WBC production. Generally, this is not a problem.

Myself, in 2013, I completed a 24 week regimen of Ribavirin, Interferon and Telaprevir (one of the first two direct antivirals available to treat hep c). It was a darn ugly treatment, but so, so worth it. I sound like a broken record, but life without hep c is a blessing and I would do it again...in a heartbeat, no question.

Anyway, my pretreatment hemoglobin was 15.5. Two weeks after starting tx., my hgb dropped to 12.3, in another 2 weeks it was down to just about 10. In just 4 weeks, I was miserable, chronic fatigue, no stamina, shortness of breath with minor exertion. I had to stop and catch my breath after a flight of stairs. Minor chores like laundry seemed to take forever. For a 66 yo old fart, I'm in decent shape. Normally, I kayak, hike, do a ton of landscaping, yard work, etc.
I thought to myself there is no way I'm doing this or worse for 1/2 a year. I pushed to start Procit (synthesized erythropoietin...a hormone that stimulates RBC production in the bone marrow). My hepatologist had no problem with this since most clinicians start Procrit when you hit close to a hgb of 9. Much below 9, you're talking transfusions...no thanks, not if It can be avoided.
Ultimately, the Procrit helped a lot and made the treatment more tolerable.

A few thoughts that may help while on the meds, stay away from hot showers and baths....really tough and irritating to your skin. Comfortably warm is fine.
Stay greased up...right after a shower and as needed through the day.
Use a decent quality, unscented lotion. Aveeno and Cetaphil worked well for me...
I used the generic walmart brand. I had quite a few really dry and incredibly itchy spots...almost like psoriatic patches. The OTC hydrocortizone cream 1% (again the walmart brand for me...lol) did the trick. If you already have the RX suggested above, you're all set. Use just a thin layer of either of the creams.
You already know about the near fainting spells when climbing out of a hot bath while on these meds. Hot baths cause a significant amount of cutaneous vasodilitation...quite a bit of blood is shunted to your peripheral circulation. Once the heat source is removed...this doesn't last long, but it really exacerbates the risk of fainting. These are powerful meds, I almost fell downstairs while on these meds and no shower was involved.

Sounds like you're doing well with the water. During my 24 week tx. I kept a gallon jug of water in the fridge.
I made sure to drink the whole thing...this in addition to any of he usual fluids in my diet. Voiding frequently generally is a reliable indicator as long as something like diabetes isn't involved.

Once again, I can't urge you enough to stay on your current meds and schedule.
The first shot at treatment is your best and no this doesn't mean that successive treatments aren't effective, esp. the newer txs...they are, but you would never forgive yourself if you altered your treatment and you didn't maintain SVR. You would never really know, but it would probably drive you crazy...it would me.

I don't know how you have the energy to handle and teach 6th graders right now, but you must love it and you sure are dedicated.
Sorry for such a long post.
Keep doing what you're doing.
Hope this helps.

woofer5 (Still not able to post under my regular username)

RoseAnn
Regular Member


Date Joined Dec 2015
Total Posts : 38
   Posted 1/12/2016 1:56 PM (GMT -6)   
Allison -

I am glad to read your posts - currently - I am just a little tired and nothing tastes right (but I know I have to eat so I do). I am a little more colder than normal (but I have always been cold). I legs/calfs itch and I have been using Uricin lotion (I know spelled incorrectly). the Diabetic formula (although I am not diabetic). I help with the itching. Eyes a little dryer than normal - using drops for dryness.
Thank you so much for sharing your journey. I too - the years you listed - got HEP C back in 1977 ish (and to tell you the truth - I was a heavy partier back then - just overdoing on the drinking). I have since stopped drinking 1981 - so I have no clue on how I contracted this disease - but it is what it is.

take care

Allison K
Regular Member


Date Joined Dec 2015
Total Posts : 58
   Posted 1/13/2016 6:23 AM (GMT -6)   
Thanks themiz.
I have contacted my doctor. I've had my blood tests and she is awaiting the results, as am I.

Allison K
Regular Member


Date Joined Dec 2015
Total Posts : 58
   Posted 1/18/2016 8:31 AM (GMT -6)   
Hi Hepcsurvivor and Rose Ann,

I swear your posts weren't there when I last posted or I would have responded. Thank you so much for sharing your stories with me! It's really nice to have a bit of comradarie in a lonely place like this. I think many people not fighting this are a little unsympathetic. It's not like anything looks wrong with us. Honestly I don't want too much sympathy, just a little nurturing. I do feel fortunate there is a more benign treatment for hep c these days. I almost feel like a whiner complaining about my side effects. I just think it is important that people have access to real stories of others' treatment histories. It was important to me to find this site and hopefully I am repaying the favor. <3

So after contacting my doctor's nurse and getting blood tests done I received a call back telling me to decrease my ribavirin to 1000 mg from 1200. It's been 5 days since I dropped to the new dosage. I am maintaining my water at about a gallon a day. I switched to distilled for now, in case any of the substances in the local drinking water might be reacting with the meds. ( I understand there are low levels of antidepressants in our water supply now that they have no way of filtering out.) I also am taking oatmeal baths and using Aveeno excema hand cream. My legs are not as itchy. The places I scratched are healing some too. Yay! Small battles.

Also skin related, I have had cold sores erupt twice in as many weeks. I don't often get them so it feels as though the battle in my body may be making conditions more opportune for them. Used melaleuca and melissa oils on them and some colloidal silver externally as well. They didn't start to heal as soon as usual.

I am maintaining 1/2 mile to a mile of walking most days. I am doing a bit of yoga every morning as well and yoga classes a few times a week. I did a more energetic class yesterday and did get a bit lightheaded. Came home and took a long nap. I don't do that often. It felt really good. I am always just a step off, a little forgetful and tired. I'm not sure if I am more cold. I do layer more in fear of becoming cold. Don't know if that exactly makes sense. It's just what I'm doing.

I see my doctor on the 22nd. She'll share my blood results then. Then I'll share them here.

Have wonderful days my sweets! I am attempting just that. <3

woofer4
Regular Member


Date Joined Jan 2016
Total Posts : 35
   Posted 1/19/2016 6:15 AM (GMT -6)   
KHi again Allison, it's so great to see a patient so well informed and taking on the difficult job of being her own, "best" patient advocate. Also really happy that you were able to decrease the Riba from 1200 mg to 1000 mg...with your doctor's blessing. Like you said though, you were right on the borderline

You probably know this, but the multiple dose 1/2 life of Ribavirin is about 12 1/2 days (298 hours) so it really hangs around and it can take up to 6 months to rid yourself of the drug entirely...at least on the 24 week tx. regimen.
When I finally completed my 24 week tx. (Telaprevir, Interferon and Ribavirin) I actually noticed I felt better in just a few days and again, substantially better in 2-3 weeks. Honestly though, it took me just about 6 months to get back to my baseline and even then I was outa shape. I've still got some tendon issues that I'm convinced are the result of the Interferon, but it's really nothing to complain about. I am so, so grateful to be rid of the Beast.

Some thoughts about distilled water. Your tap water sounds pretty nasty, but drinking LARGE amounts of distilled water on a regular basis can do you substantial harm. It can shift the acid - base balance that your body does an incredible job of maintaining (homeostasis). Over time it can also strip essential minerals from your body. The human body normally maintains a slightly alkaline pH (normal pH range of arterial blood is 7.35 - 7.45) whereas distilled water has an absolutely neutral pH of 7.0. Tap water is typically alkaline, at about a pH of 7-8, but in truth, it can vary greatly.

When I was treated for hep c in 2013, I was lucky to have some decent quality tap water to stay hydrated. But I can tell you, I miss the well water I had in Maine.
We built a home near the coast and had a well drilled...a 635 foot hole. I'll tell you that was the best darn water I've ever had...and still really cold, even in July...lol.
Enjoyed it for about 30 years.

Like I said, keep doing what you're doing.
I remember what a thrill it was seeing "Undetected" on my first set of labs (4 weeks into tx.)
Can't wait to hear that you're undetected on your 1st draw!

woofer5

Barrylink
Regular Member


Date Joined Mar 2015
Total Posts : 124
   Posted 1/20/2016 8:45 AM (GMT -6)   
Keep your head up I'm sure everything will turn out well,its a awesome feeling..
I hope everyone that is reading this is having a really good day. And if you are not, just know that in every new minute that passes you have an opportunity to change that.

Allison K
Regular Member


Date Joined Dec 2015
Total Posts : 58
   Posted 1/23/2016 7:38 AM (GMT -6)   
Thanks Barrylink and Hepcsurvivor!

I really figured the distilled water was a short term thing to get me over the itchiness. I do have a decent filter for our tapwater. Though I have heard that the antidepressants are so small a molecule that it is impossible to filter out completely.

Great news today!
HCV RNA Quantitative Real Time PCR <15 NOT DETECTED IU/mL
it also says HCV RNA Quantitative Real Time PCR RESULT : < 1.18 NOT DETECTED Log IU/mL

AND my liver function is in the normal range!
AST : 18 U/L from 136 in November before treatment
ALT : 16 U/L from 209 before treatment

Today is my exact half way point for treatment. Doing the Happy Dance!!!

themiz
Forum Moderator


Date Joined Feb 2013
Total Posts : 1891
   Posted 1/23/2016 8:19 AM (GMT -6)   
Wonderful news! You are half way home and I am so happy for you. Big Hugs
themiz-Forum Moderator-Hepatitis
Wife of themister, a fine man living with ESLD. Transplant list-2013

“Out of suffering have emerged the strongest souls; the most massive characters are seared with scars.” Kahlil Gibran

woofer4
Regular Member


Date Joined Jan 2016
Total Posts : 35
   Posted 1/23/2016 10:39 AM (GMT -6)   
Allison K said...


Great news today!
HCV RNA Quantitative Real Time PCR <15 NOT DETECTED IU/mL
it also says HCV RNA Quantitative Real Time PCR RESULT : < 1.18 NOT DETECTED Log IU/mL

AND my liver function is in the normal range!
AST : 18 U/L from 136 in November before treatment
ALT : 16 U/L from 209 before treatment

Today is my exact half way point for treatment. Doing the Happy Dance!!!


SWEET!
News we love to hear.

woofer5

marsch21
New Member


Date Joined Jan 2016
Total Posts : 5
   Posted 1/23/2016 1:48 PM (GMT -6)   
Congratulations. Reading about your journey is inspiring. Mine is just starting but I'm extremely hopeful.

Dog LeDon
Regular Member


Date Joined Apr 2014
Total Posts : 191
   Posted 1/23/2016 4:25 PM (GMT -6)   
Hello Allison, and all.

It's been awhile. I hope you all are in good spirits. We're having a blizzard here in Virginia. I'm thinking Monday may be a snow day, got plenty of water and food, so I'm in really good spirits as I love my time off.

Kudos for hanging in there and taking good care of yourself. I read your thread and just wanted to add a bit to what the others said.

I think ribavirin was the toughest drug in the HCV regimen. And what you should prepare for is the mental battle during the last few weeks of treatment. Riba starts to wear on you, at least it did on me.

BTW, you can read my thread by clicking on my "handle" and then the "third times a charm" thread if you care to read my journey through treatment.

I'm a veteran of treatment, three tours over the past 15 years, and two involved interferon and ribavirin. The third was Harvoni alone for six months.

The first round, interferon and ribavirin, 48 weeks, three shots a week, three pills twice daily, I broke out in rashes. I don't think it was the drugs. I had a hard time with stress. I thought that I had to be healed or I was going to die a miserable death. I was fixated on the cure. Very regimented in my diet and vitamins. I would start crying if I were alone and talking to a doctor about it. I kept HCV a secret. Only my girlfriend and one or two of my siblings were the wiser. I dropped to 180 lbs, from 220. I was lean and mean. People thought I had AIDS. I was an emotional wreck. At the end, I was a partial responder and never cleared the virus.

Fast forward fourteen years, treatment two was Sovaldi and ribavirin. My mental state was kind of like, you know what, if I die, I die. The ribavirin sucked, I was weak, I worked out, but not like I was in training, which is how I usually do. If I missed a workout, so what. I really didn't care. Mostly depressed. No skin problems. At the end, I cleared the virus, but relapsed.

Then found out I had compensated cirrhosis. I was numb for a week or so after, but then the "I lived a good life" reflex kicked in. I didn't give a rip, just lived life. I finished six months of Harvoni this past July. No problems, it was a breeze compared to past treatments.

Stress is a killer. Get a handle on that and you're good, no matter what.

As far as doctors go, they are practicing medicine. They make a crapload of mental errors. You have to stay on top of your treatment. My first two treatments, I followed the lead of my doctors. This last time around, I was in charge.

It seems you're doing everything right the first time. The current drugs are like almost a guarantee of SVR.

All you need to do is keep on keeping on, hang in there.

I just gave blood this past Tuesday for my six month SVR test. Results should come any day.

Take care, all.

Mike

Allison K
Regular Member


Date Joined Dec 2015
Total Posts : 58
   Posted 1/24/2016 7:26 AM (GMT -6)   
Hi Woofer5,
Thank you for all the great information and congratulations.

I did not know about the half-life of ribavirin. 298 hours is substantial. It seems my doctor is not very forthcoming with information unless I specifically ask. I didn't think to ask how long before it would clear my system. I was just worrying about how I was going to get through this while it seems to be progressively wearing me down. She did send me to the lab to check my hemoglobin and says she may have to reduce the ribavirin even more if my red blood cell level continued to drop after she reduced it the last time. I'll probably know that on Tuesday. They took my blood just before closing on Friday. I doubt will be tested before Monday and then the next day the doctor should get the results.

That well water in Maine sounds wonderful! As does building a home near the coast. Our family has a cabin in New York. There we use filtered lake water for bathing and bring in water to drink. The water feels luxurious in comparison to what we get here. There are some people who have never experienced water like that. All they have is the water that is treated and flouridated. I rarely drank water in San Diego as a child and young adult. You could actually see particles floating around in it. Yuck.

Glad to hear you are clear of HepC. What a frightening disease. I am doing all I can to control my outcome, though I know it can go either way once treatment is over. Definitely hoping for the best. I am still pushing to keep up regular physical activity, but its wearing me down. I am sure I will need to take a few days off to rest as I continue. I'm not in the greatest shape, but so much better than I used to be. I'm glad of that as it has made me stronger to fight this fight. Funny thing is I improved my health so much while I was infected with HepC. That tells me that it is not all of what was causing my health issues and it is my responsibility to take care of my body the best I can. It is a wonderful body that has taken me everywhere I've been in my life.

Take care and Thanks again!!!
Allison

Allison K
Regular Member


Date Joined Dec 2015
Total Posts : 58
   Posted 1/24/2016 7:38 AM (GMT -6)   
Welcome marsch21!

I'm glad you found my posts. I found another thread here that really helped me be less fearful of this treatment. I felt that I might help others in the same way by sharing my story.
Then there was the bonus of all the loving people who have experienced what I am and worse from the older treatments. I have learned a lot and feel very supported here. I wish you the best of luck and a fruitful journey through your treatment. There's a light at the end of this tunnel!

Allison

Allison K
Regular Member


Date Joined Dec 2015
Total Posts : 58
   Posted 1/24/2016 7:53 AM (GMT -6)   
Hi Dog LeDon,
Thanks for the heads up on the mental battle I am heading for at the end. I had a feeling that might be the case.
Wow! 3 treatments! So glad the Harvoni finally took care of it.

I can see my doctor being less than involved in my treatment. Of course I am not her only patient, but she is really just following a protocol. She doesn't ask probing questions and seems in such a rush that she was gone before I thought to share the issue of cold sores with her. One more thing I'll need to talk to her nurse about. At least this time she didn't threaten me with withdrawing treatment when I refused the Hep B booster to avoid stressing my body more right now. She initially pressured me into those vaccines by telling me she's apply for treatment once I had started vaccines on Hep A and B.

Headed over to your thread now. Hope your blood test shows SVR.
Allison

tblount
Regular Member


Date Joined Oct 2015
Total Posts : 82
   Posted 1/25/2016 1:11 PM (GMT -6)   
I wish I had taken less ribavirin the last month. It's still causing high blood pressure problems. It got so high last weekend I ended up going to the emergency room because I knew the dangers of having a stroke or heart attack are very high when bp is soaring. ...and I couldn't get it down even doubling regular bp med.

The first thing the er dr said when I told him I had just finished 12 weeks of ribavirin was that it's a powerful drug that takes 6 months to clear out. It causes veins to restrict so I got vascular dilation meds that I take only when my systolic won't come down on normal bp meds.

My clinic doctor (treating hep c) had never heard of ribavirin and she couldn't find or get a rx filled for a month. Finally I found it and paid for it but it took an extra week for the pharmacy to get her to reply and verify the rx before they could ship it. I have no doubt that any advice she had would be any more than just a guess. She never could get rx filled for Lactulose to bring down my ammonia... so I finally bought some from Australia that didn't require rx.... AND she didn't call in rx for my bp med (almost 2 months ago) so I found some that was a couple years old and used it. Now I'm breathing into a paper bag because co2 will bring down bp. I'm actually looking forward to moving to a third world country.

I applied for the affordable care deal and even with 0 income all they offered after filling out forms for a half hour was to pay $19,000 a year ($1,000 per month with $7,000 co pay) BEFORE the insurance kicked in. What a joke that was.

Ok, enough complaining... I got a printed lab report saying Not Detected an framed it. When I look at it during morning coffee I feel like it's a new birth certificate... the treatment gave me my life back. I'm feeling stronger and don't fatigue as much as I did before I declared war on this bug.

Best wishes to everyone undergoing treatment and trying to get treatment. If you follow Lucinda Porter on Twitter, she just posted a great article on how to get treatment if your insurance company won't pay.
M 64, detected after taking a 10 panel STD blood test
Started 12 week treatment with Solvaldi and Ribavirin 9-28-15
Genotype 2b -- Load Count 17,000,000
NOT DETECTED 12-22-15
Thank You Gilead

Allison K
Regular Member


Date Joined Dec 2015
Total Posts : 58
   Posted 1/30/2016 9:19 AM (GMT -6)   
Wow tblount! That is awful! How do they even have health professionals treating this that don't know the standard medications they have used for years. AND can't get them? That is simply ridiculous. Maybe we are a third world country now.

That is an excellent case for lower ribavirin doses. If you don't mind me asking, did you have high blood pressure before you started your treatment? And the ribavirin has worsened it? Or did the ribavirin start your high blood pressure?
My doctor did not lower my ribavirin again. It appears my hemoglobin stopped dropping after the decrease last month. In fact it went up a touch. I get tested again in just over a week. She said she wants to keep it as high as I can handle to give me the best opportunity for a cure.
It certainly does feel wonderful to have a Not Detected result!

Allison K
Regular Member


Date Joined Dec 2015
Total Posts : 58
   Posted 1/30/2016 9:43 AM (GMT -6)   
Today I start week 8.
I am pretty tired at the end of the day. Often asleep by 7:30 or 8. Still working full time at a strenuous career, teaching 6th graders. Thought I would take a day off this week to rest, but it would have been so much work catching up that I didn't. I made it through alright though.
I am maintaining walking about a mile most days. Number of steps usually between 6,000-9,000 a day. Still doing some yoga. 2-3 classes a week and morning stretching for 15-30 minutes daily.
I am definitely forgetful. Getting ready in the morning I am having to do a lot of extra running around because I left something somewhere and have to go back to get it.
I am having some itching again on my lower legs and a couple of rough patches and bumps on my arms.
My legs are aching enough to keep me from going to sleep and waking me up in the night. I raised my legs on a pillow last night and finally was able to sleep. This may be related to the extra attention by my chiropractor doing fascia massage on my ankles to help my mobility.
My son has had a bug and I may have caught it, so that may be using some muscle aches. I also have a bit of yuck in my throat in the morning. I asked about pain medication for muscle aches and in case I developed a fever. I was told no ibuprofen. Use tylenol. I thought that tylenol was specifically bad for your liver and told that it was fine as long as I didn't go over the recommended dosage. I bought the regular strength and took two last night. I don't think it helped the muscle aches. They got worse rather than better. I also ate some chocolate around that time and wonder if that could have added to edema or done something to worsen the pain.
Off to the Wild Animal Park with my granddaughter and son today. My granddaughter turned 5 on Thursday so it's kind of a birthday outing. I was the one who got to spend her birthday evening with her, taking her to her circus class and sharing cupcakes, walking around Market Night, the bounce slide, dinner, the horse-drawn carriage princess ride around town, dancing around the bandstand(and the unfortunate skinned knee), and finishing it up at A La Minute(ice cream, locally sourced, organic, frozen a la minute by liquid nitrogen - in strawberry balsamic and lavender chocolate, YUM!)
I am so fortunate to have this life and the chance for it to be even better after I finish treatment.

Love you all! Hope things are going well for you too!

ppm guy
Veteran Member


Date Joined Apr 2010
Total Posts : 1080
   Posted 1/30/2016 2:23 PM (GMT -6)   
hi Allison,
love your post!!
you are handling things great. And getting out with the kids, fantastic. IM jealous. Enjoy the park(is that san diego), and kids.

so glad your getting thru tx at full dose, and with a seemingly strong treatment team.
barry

themiz
Forum Moderator


Date Joined Feb 2013
Total Posts : 1891
   Posted 1/30/2016 3:48 PM (GMT -6)   
You are doing great, Allison. Enjoy every day with the kiddo's is surely, a good day. Stay positive. Big Hugs
themiz-Forum Moderator-Hepatitis
Wife of themister, a fine man living with ESLD. Transplant list-2013

“Out of suffering have emerged the strongest souls; the most massive characters are seared with scars.” Kahlil Gibran

woofer4
Regular Member


Date Joined Jan 2016
Total Posts : 35
   Posted 1/30/2016 8:17 PM (GMT -6)   
Allison, reading your posts are a real treat.
Honestly, we should nominate you for poster child on how to handle hep c treatment!...hahaha.
Seriously, so glad to hear you can enjoy life and cherish those precious moments in spite of taking those "feel crappy" meds.

Funny about the Tylenol vs. Ibuprofen controversy and how some docs arrive at their opinions. Tylenol, in recommended doses, is just fine for someone like you while being treated for hep c. It's typically safe unless you have significant liver disease (it's metabolized in the liver) and even then, some hepatologists will prescribe it, but these specialists know what they're doing.
Ibuprofen is metabolized primarily by the kidneys so renal insufficiency/disease are the only common contraindications. Liver damage secondary to Ibuprofen is rare, but virtually any drug can cause severe damage to various organ systems.

I would never suggest that you go against your doc's advice, but I much preferred Ibuprofen during my treatment.
I was blessed to have been treated by my hepatologist, for many reasons, but also because he recommended Ibuprofen for me. Both are decent analgesics and antipyretics (anti-fever), but only Ibuprofen has significant anti-inflammatory activity...Tylenol has none and most pain has inflammation at its source.

Sorry enough of that stuff.

Anyway, I meant it about you being a role model for hep c patients seeking treatment. You really are an inspiration.
Keep on doing what you're doing.

woofer5

Allison K
Regular Member


Date Joined Dec 2015
Total Posts : 58
   Posted 1/30/2016 9:08 PM (GMT -6)   
Thanks everybody for the encouragement! It's so much nicer that you're here. I don't know anyone who is doing or has done this. It was really frightening for me to start. Of course the alternative sucked more. You all have given me so much support. Thank you from the bottom of my heart.

<3 Allison

Post Edited (Allison K) : 1/30/2016 8:26:59 PM (GMT-7)


Allison K
Regular Member


Date Joined Dec 2015
Total Posts : 58
   Posted 1/30/2016 10:09 PM (GMT -6)   
Hey Woofer5,

I appreciate the compliments. Of course I don't really see the option of doing this half way. I've got to do my best to get rid of this disease. This is the life I get. I've got to give it my all. Actually, having HepC makes me see that even more...

So, the Ibuprofen/Tylenol controversy... Being a Baby Boomer, I was raised using aspirin. It worked for pain and fever. I really liked that chalky orange taste when I was little too. I used Tylenol for my children, but never was convinced it worked all that well. It never seemed to break a fever and didn't work well for pain. When I used it, it didn't fix a headache or break a fever. I resorted to baby aspirin a couple times when my kids were really miserable.

I've used Ibuprofen since it came out as a competitor to Tylenol. It's always worked well on pain and fever. It worked better for pain than vicodin I was prescribed. It worked for my son with his motorcycle accident when high doses of vicodin didn't help. If my doctor and her nurse didn't say no Ibuprofen every time I saw or spoke to them I would have used Ibuprofen last night.

I may just have to tough it out. I hope I can find a way to alleviate this pain. I don't tend to use medications at all. I haven't used anything for pain for well over a year. I've had a pretty healthy immune system, despite the HepC, being able to fight off the germs brought in by over 70 kids daily.

I am heading to bed now and lying here I can feel my ankles starting to ache again. Can I ask if anyone noticed pain after taking ribavirin? I also took my pills for tonight just before crawling into bed, about half an hour ago.

Anyway, thanks again for the kind words and information.
Allison

woofer4
Regular Member


Date Joined Jan 2016
Total Posts : 35
   Posted 1/31/2016 12:10 PM (GMT -6)   
Allison K said...
... Being a Baby Boomer, I was raised using aspirin. ..I really liked that chalky orange taste when I was little too...

Hahaha, I really liked that chalky orange taste too. Like you said, that's all we had back then (I'm turning 67 in a few weeks).
Hey, I wonder if that's why I'm so addicted to Cheetos. They must rank up there as one of the most unhealthy things to eat (maybe #1...lol) but my goodness I love those things.

You and I are similar in how we approached fighting this infection...the big difference I see is that I whined about it a lot and you don't, but then again...I'm a guy...enough said...hahaha.
I really did approach this almost like a religious zealot. At one point I actually had 45 alarms on my phone/week. That's how forgetful and confused I became, especially during the first 12 weeks while on Telaprevir. The first 2 nights of my 24 week tx. I spent dry heaving in the bathroom...thinking Dear Lord, how am I going to do this and keep down all these meds. The Telaprevir was every 8 hours (precisely) and you had to take at least 20 grams of fat approx 20-30 minutes prior to taking it and I was so, so nauseated all the time. I was max'd out on both Phenergan and Zofran so there wasn't much else to do, although the ginger tea and "real ginger ale" helped out. Telaprevir is highly fat soluble so you had to ingest the fat and give it time to be properly emulsified otherwise you would compromise the absorption and its direct antiviral activity.
Anyway, coconut oil was my savior. I was able to chug and keep down 2 Tbs (30cc) so I got 28 grams of fat in prior to dosing.
Then there was the Ribavirin...and Interferon and Procrit injections. None of it was really difficult, but you had to adhere to a strict schedule and not mess up.
Anyway, as I've said before, it was ugly, but I'd do it again tomorrow if that's what it took.
Life without hep c is a blessing.

I can't say the Ribavirin ever caused me pain while taking it, but it sure caused or made worse other nasty stuff. You're right about the Ibuprofen though...it is much more effective in treating pain and fever than Tylenol...at least for many people, especially kids. I'm not saying Tylenol doesn't have its place though and for many, it works well.
Like I said, I'd never recommend you going against your doc, but it might be worthwhile to ask why not Ibuprofen?
Ibuprofen has gotten some bad press over the last few years re: a higher risk for vascular events such as heart attacks and strokes. Some of it is deserved, some not.
But one thing for sure, there is no such thing as a free lunch...not with drugs anyway.
Nothing is as safe as we once thought. If you think about it, we're messing with an incredibly complex organism and when we change or modify our bodies there are always unintended consequences plus there's stuff we haven't even begun to understand.
We just have to be careful, keep trying and hope that the good will out weigh the bad.

Hey! you're rounding the corner and soon will be looking at just 4 more weeks...sweet!
Hang tough...I know that you will. And don't let those 70 little "angels" get to you...hahaha.


woofer5

______________________________________

2013 / Diagnosed and successfully treated for hep c geno 1b with Telaprevir, Interferon and Ribavirin...treatment duration 24 weeks.
Retired CRNA (aka nurse anesthetist)...approx 35 years experience in the ER and anesthesia.
Exposure was likely a bloody needle stick from a known hep b patient in 1977. Hep B never progressed to the chronic phase...my own, healthy immune system crushed it.

tblount
Regular Member


Date Joined Oct 2015
Total Posts : 82
   Posted 2/1/2016 11:11 AM (GMT -6)   

To Allison,

I've taken bp meds for hypertension for 20 years. What happened with the Ribavirin is that it "jacks up" the nervous system ... but I'm sure you have realized this by now... if not, drink a cup of coffee , don't eat, and take 3 pills and hang on for the ride!

 

NO...don't actually do this because you'll be climbing the walls in about an hour and if you don't eat you will be hyped for several hours. These side effects of the riba started peaking when I past 8 or 9 weeks --- and my body had become so saturated that it stared causing a heart valve to FAIL to RELAX -- a known side effect. You can know this is happening because you systolic bp will go up...maybe way up and the diastolic pressure will not change a lot... so it's NOT easy to fix with just bp meds because when you take more the diastolic  pressure will go toooooo low and you won't have energy and will easily faint. The solution is to reduce the riba, and until it leaves your body after treatment you'll need a vascular dilator to relax the arteries. Hopefully you won't have a heart attack or stroke before you can get the systolic pressure back down.

 

FORTUNATELY this hasn't been a problem for most people... or they don't write about it in the Hep C forums.

 

As for eating chocolate... it seems the human body can't really distinguish chocolate from coffee once the chocolate breaks down. Several religions are aware of this and for example Catholic missionaries to South America that had coffee on their "do not consume" list, ALSO added Chocolate. I think the Mormons also avoid coffee and chocolate.

 

BUT.... I have read several sources that say research has concluded that coffee INCREASES the success rate of Hep C treatment when 3 or more cups were consumed a day.... so I would eat dark chocolate ...because it has benefits and not the sugar that is in milk chocolate.

 

As for the brain fog, lethargy, confusion, forgetting etc... I'm totally convinced that's mostly coming from elevated ammonia levels. Ammonia is TOXIC to the brain (see OSHA studies if you want more evidence). When the liver can't break down ammonia to uric acid and pass it through the kidneys, it builds up and causes all these brain problems and fatigue and can even put a person in a coma. about the only solution is to take lacunose - a laxative (requires RX - if you don't order from Australia) AND to AVOID foods high in ammonia like cheese, wheat, soy, oatmeal, etc.  You can easily google to get a list.

 

There is no at-home test for ammonia but the aquarium ammonia stick test sold in pet stores for $10 can give you a pretty good idea of how elevated the ammonia is in your urine. A healthy person will be about 3 parts per million but I had at least 4 times that much... off the charts. I would have had to drive 2 hours and pay $33 for every ammonia test at a lab... which was impractical. When I avoided foods high in ammonia and took lactulose it came down to no more than double...about 6 parts per million (60 ul/dc) (took about a week) and let me tell you... my brain fog and dizziness and confusion cleared considerably. (PLEASE NOTE... this is ONLY my personal experience... not professional advice.)

 

As for headache meds etc.... I was fortunate that they weren't severe but they were there and I tried to avoid medicine because it seemed that nearly all headache meds are pretty tough for the liver to process. I took Naproxen twice the whole time. I even stopped taking herbs that cleanse toxins ….that I had been taking for years… because they can react with Hep C treatment.

 

I did have an ear infection and took an antibiotic called Cipro and that made me so sick I really thought I was about to die one night. The sickest I have ever been.  So be careful about taking anything that is not totally necesary during treatment.... especially St. John's Wort.

 

Also, someone mentioned cheetos .... I tried to avoid salt... I've read several messages from people undergoing treatment that said they felt bad every time they had too much salt.  I doubt there is actually cheese in cheetos.... probably only artifical flavoring but cheese is probably the food HIGHEST in ammonia.


M 64, detected after taking a 10 panel STD blood test
Started 12 week treatment with Solvaldi and Ribavirin 9-28-15
Genotype 2b -- Load Count 17,000,000
NOT DETECTED 12-22-15
Thank You Gilead

Allison K
Regular Member


Date Joined Dec 2015
Total Posts : 58
   Posted 2/2/2016 1:36 AM (GMT -6)   
Woofer5,
I'd be whining too if I had to take all of what you did. Don't know if I could have kept all that straight, even with all those alarms. I've got a cakewalk in comparison. Good for you for getting through all that.

As far as the leg pain goes, I've cut back my chiropractor manipulation of this area for the time being. I will ask my doctor what the issue with ibuprofen is. I don't have previous heart or kidney issues. I have begun having tumeric and cinnamon with honey in warm coconut milk the last couple of days. Also have decided chocolate should not be near bedtime and perhaps a little more rarely in my diet for now. I think I should also make sure I have a bit more time after my last dose of ribavirin before bed for moving around and drinking more water. Maybe compression socks would help. Haven't tried that yet, but then I haven't had the level of pain for the last few days.

Thank you for sharing the complexity of your treatment. It helps keep mine in perspective.

Allison

Post Edited (Allison K) : 2/2/2016 12:04:24 PM (GMT-7)

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