Hep C Discussion Forum

Hi K8,

So glad you wrote in. Big congrats on your (wow) 1 1/2 years SVR's! How time fly's. I am coming up on my 2 year mark (approx) pretty soon too!.

I remember you well. Back then I poured over your posts, feeling for you, and your months of riba (realizing this was your second riba round experience, AND, not to mention the interferon insult of prior!) - all that you had to go through since 2008 to get cured. You were very brave. What a strong soul you must be - you got yourself through those spritual and emotional dificulties (as you put it). You should be feeling very proud of yourself.

You and I were kinda going through treatment (about) the same time period (me on the soft easy drugs) - Mar to May 2016 , and you, doing the cruel hard riba-time ride (Mar to Jul 2016). I admired your courage very much during that trying time, especially so, knowing you had been there before in 2008. Had I not been successful in landing myself a very lucky seat in a cushy 8 week trial of the soft drugs, and instead, had ended up doing the 24 weeks of sof/riba first indicated for me, I would have only wished that i would have been as strong and brave as you were.

I don't recall whatever happened about your anemia - how low did your hgb go, and how long did it take to rebuild with your NP?

Respect and only good wishes to you. C.

Hi,

I haven't posted in quite a while, site was a godsend when I was so distraught while in treatment.  I, too, had Solvadi & Riba (second time with the Riba) and she was as nasty as I remembered the first time 8 years ago.  Treatment was 3 months, last couple of weeks was emotionally & spiritually difficult.

All of this is to say Thank you, for your encouragement to keep going,  virus undetectable 18 mon EOT.  Although I do give full credit for abundance of wrinkles on my beautiful face to RIBA, She did her job & I am grateful.  
Blessings,
Kathleen

Gee, I dunno Lamont ... I think you have a kinda cute head ... going by your picture here! heehee 

My mainstays are to always avoid using a bright light in the bathroom, then there's less mirror shock. As I age my vision gets worse, especially night vision, night driving, reading, on and on, have had irritating double vision for eons, and intractable tinnitus for just as long, and NONE of it has anything to do with Harvoni, heehee (that's my weak attempt to stay on topic). For decades I have been lamenting for bigger, better, brighter lights all throughout the house. I'm a frequent-flyer buyer of magnifying glasses, reading glasses, but never, ever, will I increase the candles of my bathroom mirror light! Actually, I got my partner to put the lights in there on a dimmer switch! Sometimes, late at night, when I pass that bathroom mirror, I can soothe myself and say, well in this light, I don't look THAT bad! . This is the one time that "fog" does come in handy, on the bathroom mirror, when you are naked. I never clean the bathtub drain either (my partners duty) so I don't have to gauge how much of my hair is stored in there. I wear hats a lot. Keep the sun at your back, face in the shadow, when chatting with folks outdoors. Hair and skin, who gave it so much thought, when you were 20 eh? I had to borrow my girlfriends car one day, she has one of those super-dooper makeup light thingies built right onto her sun visor, never ever look in those to inspect your face and eye skin. It ruined my day. I've been having a bad hair day for quite some time now.  C.

fourlocos wrote:

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....  I look like hell.  Most concerning for me is how my eyes are still puffy and wrinkled up which happened during treatment and never went away.  I seriously look like I aged 10 years in those two months!  I think that bothers me the most!!!

---

 Yeah...I got out of the shower the other day, and one look in the mirror had me turning off the lights. "That can't be me."

But seriously, I do look a little worse for wear, but fortunately I do feel better. I hope you recover your better self soon!

I had major digestive problems, and felt like I was slowly dying for about 2.5 years, I was finally DX's with HepC, but it was largely gone after about 6 weeks of Epclusa, ; slowly but surely things got better as far as stamina and overall "feeling" good.

Wonderful.....Until I got a Vicious, stubborn Herpes simplex outbreak in my right eye, that took nearly 6 months to subside. It messed up my vision, and well, what can I say? I have no idea if the Epclusa was a factor, but it sure is weird.

I have had maybe 3 cold sores, in my Entire Life, and those were all minor events, hardly even worth bothering with. Then Ocular Keratitis. Who knew?

 

Oh, and I don't know if it's my imagination, but my hair has thinned out somewhat, seems like more than just my normal slow hair death.

-- Edited by LamontCranston on Tuesday 16th of January 2018 12:55:03 AM

It's the cookies that make us smile that way.  C.

Wen, So sorry to hear about your friend, a terrible blow.  C.

 

Wendy, Im sorry the hear about your sponsor praying it can be removed.   When I had HCC I really never thought I had cancer, it was my liver that had cancer and it could be replaced. I got SOOOOO lucky!!   RC

 Thought I’d share a recent ”selfie”

Yay Wen!, 

So glad you got tartar versus a hole in your tooth. Whew, good, I would take tartar anyday! One less tooth to be worrying you. Dang tartar! 

I HAVE to go every 3 months for periodontal disease cleanings, ya, gets expensive! mm, reminds me, I better go off and floss now! 

Had I known how much work all this maintaining/keeping/improving health was, say ... when I was 20, maybe I might have tried harder earlier?

Hey I paid for one of those bruxism plate things too one time, unfortunately it didn't take long before it was too tight! I wasted my money, as I somehow outgrew it, my teeth became more bucky I guess. If I tried to force it in now, i'd probably snap sumpin off! I still do a lot of grinding, I try to catch myself and prevent myself from doing so, but those plates are good for that. I envy you with a naturally nice lookin set of teeth. Wish I had been able to get braces when I was a kid! Like Tig I have some bone loss, but so far the teeth themselves do not self-destruct/crumble as poor Tig has had happen. 

Always sumpin, as JK would have said.  C.

Hey Wendy,

I missed your post earlier about your teeth. Trust me, I feel your frustration. I’m having an awful time with mine. I wasn’t part of the Harvoni experience, so I can’t attribute my problems to that. I can however, attribute a large part of my troubles to Interferon. I have had increasing bone and tooth loss, as well as multiple fractures in teeth previously healthy. I lost two molars with existing crowns. The teeth just fell apart under the crowns :( I have taken such good care of my teeth, flossing, brushing, cleanings, blah, blah, blah. The dentist just scratches his head and is willing to do whatever he can, but the cost of dental care and cosmetics is prohibitive and prevents me from going forward. I think I’m going to be that old fart with 3 teeth and a piece of straw sticking out of my mouth! The soundtrack from Deliverance is emanating from somewhere, that concerns me.... 

Yes I am up early!  since starting Rexulti I do get up early. 

I am no longer taking gabapentin. toe has healed nicely and Im walking some but last week was so cold!

rexulti was first used I think, for schizophrenia. Then they found it works for major depressive disorder.

i also take .25 mg of clonozapam if needed. 

We r supposed to have another freeze next week!  Cold was easier when I was younger!  As many things were!  

P.

Hey hiya!

Well, you're up early (or late), me too! Oh so glad to hear this. Rexulti doesn't ring a bell with me, but I will look it up now. Good stuff to know about. So glad the combo is working well.  Agree, dark places can be so, so hard to take.  hm, puts me to mind of the "L'oreal" syndrome (if you know that commercial) - expensive products, but "we are so, so worth it"! Congrats on bloods AND feeling better and better. 

Is the toe OK now, and you're not on gaba anymore? Are you still taking your walks? C.

Hey Phyllis,

Ya! So good to hear from you! Been wondering how you were doing. Glad to hear you sound like you are doing really well. If you don't mind sharing maybe you would tell us what your drug combo is now that is working better for you? Are you still on the gaba? How's the toe for walking now? Fill us in on anything you care to. Happy you checked in, it gives others out there (who have also traveled long journeys and been through the wringer) feel better to see others do well. In my neck of the woods, we had a brief reprieve from the deep freeze, made my near daily walks a tad easier, but  ... unfortunately, back in the bone chillin cold again now! sigh - hampers these outdoor ventures alright. Glad you checked in!  C.

Hello Phyllis,

So good to hear from you! I’m very happy to hear you found some relief from the depression. It’s a very common side effect of Ribavirin. As a matter of fact, there are way too many ugly side effects related to that drug. It’s a pharmaceutical nuclear weapon! It took me a full year to get over that. I’m glad you’re feeling better.

Congratulations on your continued SVR! You did it! It’s a nice feeling, isn’t it? Take care and stay in touch. It’s going to be a great year ahead!

Hey family,

spent some time reading old Mallani posts last night about interferon and tooth issues as I have yet another tooth that a piece has fallen off of. I have very nice teeth, never wore braces and yet had 2 crowns in the past few months (one was replacing an old one) and had to get an implant a few years ago. Of course I want to know is this normal aging or result of HCV. Not that it matters at this point but I am getting sick of going to the dentist as well as the expense. Glad to be HCV free but just needed to vent and put this out there. 

Anna,

You're fortunate to have gone 20 years without the dreadful symptoms and conditions so common with long term (chronic) Hep C infection. Have you considered that since you didn't experience any real problems beforehand, you may be one of those that won't notice any significant differences? That doesn't diminish your successful journey to SVR at all. You're much healthier now, regardless of the lack of noticeable differences. Trust me on this, when you start to feel badly from this disease, the damage is mounting. Celebrate the fact you have stopped the progressive damage caused by HCV before it had a chance to further affect your life. 

Your liver

Hi Michaele,

I know I have said this before.  As bizarre as it sounds, I was really doing well while I had HCV for close to 20 years.  No symptoms.  Took Harvoni for 8 weeks.  Was easy peasy.  No Side effects.  SVR 12 In September.  But I can't say I feel better than before.  I'm OK.  Just not a miracle healthy body revelation.  I'm still so thankful to be rid of the dragon, but I do find the journey weird.

 

Hi Michaele,

Sorry you feel so poorly. I have no personal experience with Harvoni, so I can't relate to it, but there have been other complaints from treatment. There isn't as much attention being paid to these complaints as should be, so it's good to share the experiences. The depression is real troubling. I have continued to deal with it myself and it's no fun... Good ol AD's have worked for the most part, realizing it has been this way, only worse, pre treatment and on for ages. It's better and I'm good with that, for now... 

That's great news regarding the pancreatic mass! That had been an issue for quite awhile. That's huge! Your new doctor could be a bit less frightening in her approach. I'd point that out. The statins are useful, but have their own set of side effects. Hopefully you will figure out another option, good luck.

If coffee affects calcium absorption in the bone, I'm going to have problems. I live on the stuff!

I hope you keep in touch so we can follow things with you. It's good to talk about and it helps others looking for help. 

Michaele wrote:

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Hope everyone is doing well, but sounds like the Hep C is gone and everything else is questional. Sometimes I think I miss it.

 XOXO Michaele

 

 

 

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Greetings,

The..".. sometimes I think I miss it..." comment is worthy of note.

I understand what you are saying. Prior to becoming UND, I always had a "reason" to feel less than great. Less than young, strong as I remember, fast as I can recall and the feeling of being invincible.

I always was able to point to Hep C and say, well.. "I have Hep C. Of course I feel the way I do."

Once it was gone. Dragon slain. The Fire in the belly of the serpent doused and arrested, I had only my pre-Hep C days to look back on and long for, questioning why not?

Fact is I am now 63 and have no idea what a "normal" 63 year old man is supposed to feel like. But in all honesty I look around at those around me, in the same age group, and am quite thankful believing I must feel abnormally good because they all look fat and miserable and I am not.

I am committed to realizing I am 63 and a century ago would have been an oddball having lived so long yet here I am today, not knowing what an older man should feel like but at the same time recognizing, I probably still don't.

The not knowing what I should feel like, given my age, and no longer having Hep C to be able to blame for how I feel, sometimes leaves me thinking, ".. sometimes I think I miss it..."

For about a minute, and then I thank God for the Cure, and the Sun that came up today, on me and mine.

 

JimmyK

 

Thank you!

Seems like my energy level is lower since treatment. Is like to read an in depth study about Ribavirin. I probably wouldn't understand it! But it has done so many things to me mentally and physically. I will be very grateful to get back to normal. 

Phyllis

 

 

Hi Phyllis,

Glad you found some helpful information here and really hope you stay active on the forum. It does help to talk with people that have been where you are. Riba is a difficult drug and most people have issues with it. The long term effects took a year to go away when I was on it. The depression I had during treatment improved considerably post treatment. It will take on average 6 months for all of the Riba to clear your system. It soaks in and hangs out for awhile! It will get better. Watch the sun, the sensitivity lasted longest. Continue hydrating well, that helps flush the system.

Stay in touch!  

I am SVR EOT +12.  Actually at 21 weeks now and my doc still is requesting an SVR +24, but I'm waiting until after the New Year. No real Harvoni side effects post treatment other than have less get up and go than I used to have.  I used to hit the ground running at crack of dawn.  Now I lay around watching TV until about 8AM.  Then go for my 3 mile walk  Then it's about 50/50 if I feel like getting down to my computer work (I am self employed) or just sitting in my recliner and watching more TV - or going to movies with friends.  I did come back from 17 days in Europe last month - so obviously I managed to keep my energy level up there - catching train and planes.  So it's just here at home.  I feel like I'm operating at about 75% rather than my previous (with HCV) 100%.  Hoping time will improve my energy level.

-- Edited by singsong on Monday 7th of November 2016 03:51:13 PM

Thanks everyone. Your input is very helpful. However as for the herbs for insomnia, I'm going to try it after 3 mos EOT just in case I don't get SVR, at least I'll know it wasn't anything I did against doctor's orders. But I did have a brainstorm that seems to be helping - this forum has discussed how 2 symptoms seems to have cropped up post-Harvoni: allergies & skin conditions. Well I just realized my allergies have gotten worse now too. MY main allergy symptoms are BAD headaches & fatigue. So this wknd I took Benadryl to sleep (it causes drowsiness) & bought Claritan for daytime ( before Harvoni my allergies weren't this bad.) MY sleep & headaches & fatigue improved to a much more tolerable level! So we'll see if it continues to help. So far, so gd. AND I'll call doc mon to confirm it's ok to take allergy meds. Without this forum I don't think it would've dawned on me to try this because I don't get the typical runny nose & itchy eyes of allergy sufferers.