Jimmy jimmy jimmy.....XO

I had to check in before I went to bed. Keeping you and Carolyn in my prayers. (and Sonny and Clyde)

wendyo wrote:

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Hi Polo - I did not lose or gain, stayed about the same. 

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 Perpetual Hotness.

I've lost about 15 pounds on Harvoni treatment. Didn't have it to lose either so not a happy camper bout that.

Sounds like I'm on track, I did stop drinking like LM a short while before SOT.

Hey Tig - 55 pounds is significant, wow! I'll take the 5 less for now, no complaints here.

Hey that's not bad at all. I lost 55 pounds on treatment... Of course that was the old drugs, Interferon days. That was a rough ride, but I had it to lose. Now it's slowly creeping back up on me. Take advantage of the momentary weight loss. These meds can affect the metabolism, kind of kicks it into high gear. That's one reason we push the water intake here. It can dehydrate you, causing some of that weight loss. As long as you're eating properly and hydrating, you shouldn't have anything to be concerned with. How about this, you have my weight gain and I'll take your weight loss? Sound good? Woohoo, I wish, lol!  

Polosilver,

I lost about 5 pounds after I gave up my vino!  

Hi Polo - I did not lose or gain, stayed about the same. 

Hi all --

Is is normal to lose weight while in treatment? I weighed myself this morning and I've lost 5 pounds since SOT on Harvoni. Today's pill will be Day 21. Is this normal? My appetite has been the same as before. I suppose its not big deal, yet thought I'd check.

Thanks for the humor here...I had a lonnngggg day at this conference and then had to be a slippery sam to extricate myself from several colleagues intent on having hangovers tomorrow. I drank my club soda and lime and then gave 'em the slip. whew!

I'm grateful for this forum,,,I was a bit nervy once I made it back to my hotel room and it helped to read posts here and make some myself. Thanks everyone, gn.

Hi Jenny1-also, there were a few days in the second week I was struggling with a touch of migraine. I added drinking a glass of gatorade each day along with the water and it passed. That is my experience thus far and I just swallowed Day 19 treatment pill.

Hi Jenny1 - I understand, I thought something big would happen when I swallowed the first orange pill,,,yet I was still me, for better or worse is right...it didn't even turn my tongue orange I just swallowed it.

Hope so. Concerned about any side effects but have felt like "me" (for better or worse) today.  

Hi Jen 1,

How nice! Day one. Off and running now!

We know the "jittering" before you start, the unknown. But all will be well, and you will trounce this virus in short order.

I felt a special kind of relief with that first pill past my lips.

The little train that could.  C.

So kind of you to write. Thank you!  Drinking lots of water...

Thank you:) Had some anxiety anticipating the start so glad I've actually begun.

Congrats. Jenny and here you GO! One ticket to success on the Harvoni Train!! 

Welcome Aboard the Harvoni Train Jenny1! I think TIG will give you a punched ticket in the Club Car.

Just took my first pill!

Polo,

Oh nice, soon to be home again, home again (at least for a good while), I think that is good! And our excitement will build until we find out what your Sept 4 tests reveal. No fretting! (I know, it's easier said than done) - but the results WILL show some, if not dramatic improvement (I bet my bottom dollar on that)! Ya, the no alcohol thing does have it's benefits. Is the sleep thing still improving (I hope)? I do like the sound of your calmness now. Only good things are in store for you!

Oh ya, skin! I've been waiting about a year to get a derm consult, going in Sept for whatever that's worth! My skin is weird/dif, not like what we were discussing before, but must be lizard skin or spotty aging creature syndrome or something - we'll see what the dermo has to guess.

Don't push too hard at this conference if you can get away with it. Just remember you are always #1 (first)!  C. 

Hi Canuck - good to see your post. The pruitis must be what I've had,,I have had little bumps, lesions come and go for last 5-6 years in addition to the itches. (I've had the itching for so many years, I don't remember when I didn't itch) My bumps, lesions are usually small scabby things, (I've had about 6 of them overall) in fact I have one now and I found putting vitamin e oil on them helped them to dry up. My feet itch so much that I often drive with my shoe off on long trips. Its probably looks odd, when in meetings I've had to take off a shoe and itch my foot.

As for the work/travel/life balance, its been somewhat challenging, but I'm not as shaky as that first week. I was an emotional wreck, traveling, working and no alcohol. I was a moderate drinker, and enjoyed a glass of wine or a beer in the evenings to chill. The first week traveling and no alcohol was a stretch, but I got through it. Last week I was home, this week, I'm at an intense technical conference all week and its a bit crazy and I find its easier to let go of all the nuttiness when I'm not drinking and just focusing on healing. I went for a walk and returned to my hotel room  right after dinner this evening to relax and will take my Harvoni soon. Overall I'm doing fine, yet do look forward to being home the next few weeks after this trip. I get my first labs week of Sept 4th and see the doc Sept 25th, however my provider typically posts results online automatically within 3 days. I hope to get good results!

Hey saluda.

Oh thank goodness you are alright. Thanks for letting us know, the details, and how it came to be and went down. Heal up quickly (and uneventfully, I hope and trust). C.

I bet you're feeling like a new man tonight! You were feeling worse than you were letting on. When you started vomiting, it was apparent things were worsening. I'm glad you went in. Did you decide to go in early or did you wait til you couldn't stand it anymore? I'm glad it didn't rupture, that's never a good outcome and always involves a laparotomy. I had mine removed by laparoscope, too and healed fairly quickly. The post op gas they used to inflate the belly was the most uncomfortable to get rid of. It was less painful than that infected gallbladder though!

I know you'll take it easy now and keep your hiking between the chair and bathroom. At least for a few days! Thanks for the update and we'll look forward to hearing from you once you're recovering at home. Get well soon!

Hey polo,

How does the work/travel/treatment balance go? You had mentioned you have (recently) noticed a slight lessening of some of the pruritis that you had been experiencing off and on for some time prior to treatment. That's a nice bonus. I am glad you have had "some" good nights of sleep, I hope both those things keep improving for you.

I too had some decades-long bouts of mysterious pruritis issues, that would fluctuate, just to confuse one. They heightened in weird ways the closer I approached treatment. I did not know I had HCV of course, but (I think) it was the same year I finally got diagnosed, when earlier that year the pruritis on my scalp was so intense for a while I was convinced I better go get checked for lice!! Of course, I could find none, and of course the public health nurse who looked for me could find none. Felt silly and confused, but the weird years of off and on again excalating pruritis soon thereafter made so much sense (once I got diagnosed with HCV)! I had been making other possible excuses for it, contact dermatitis/allergies/seborrhea, but of course none of those things added up very well either. I also had of deep intensely pruritic spots on my back in a few spots that would chnage around a bit, mostly over the RUQ, no matter how much you rubbed or scratched it was intense and intractable and would not resolve by any means! I had mentioned this before and after HCV treatment and not one doc has agreed with me that it was (for a fact) caused by HCV. Generalized pruritis they lukewarmly accepted, but not these deep isolated spots! But, hey guess what - these deep intractable spots in my back have almost (dare I say, fingers crossed) disappeared for good now, occasional hint but they have vacated now! Scalp itchiness has improved too. So never say never, remain hopeful for these small victories. They are big to me! As was loosing that intractable back pain I also had in my LRQ. That I am positive, is absolutely gone, gone, gone - I keep my radar on for any trace of it and now all i feel is my real skeletal age!

Harvoni may be tough love, but just dream about how you will turn out! C.

wendyo wrote:

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It was the eclipse! Sorry, the old timers here know I have a messed up sense of humor. Just glad you are on the road to recovery salud. Relief will be yours soon. 

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 Wait a minute. You mean it wasn't the eclipse?

It was the eclipse! Sorry, the old timers here know I have a messed up sense of humor. Just glad you are on the road to recovery salud. Relief will be yours soon. 

Saludahiker --- Glad you got to the ER, wow, that is a tough experience to have on Harvoni for sure. Sending healing vibes your direction.  Take it easy.

OH dear! Poor saluda!!!!! Really feel for you. Dreadful event! Hope you recover very quickly AND feel better! Did they give you a report on exactly what they saw/what they found when they removed your gall bladder? So glad the offending object is no longer in the equation. When you feel up to it, keep us posted. So sorry that had to happen to you right now. Just concentrate on getting better/feeling better. C

Not a fun start to your treatment!  Hope you recover quickly!

Hi S-hiker.      That was quick!   Going from the stomach flu to emergency gall bladder surgery !  N.C. Has some pretty good ER's.       Getting over that surgery is a cake walk.  You may not experience any sides.   The only thing i had was loos stools for about 3 months post operation. Then thing get tightened up if you know what i mean.   I had 16 stones that i lived with for many many years.  Our liver disease speeds up the gall stone problems.    RC

I'm glad your problem was quickly diagnosed and addressed. Feel better soon :)

Well! I'm guessing that could be the reason you were having some RUQ pain! Did you ever have problem with that before? That sure hit you fast. Most people have nagging bouts of inflammation and evidence of gallstone formation. Did you have an ultrasound pre Harvoni treatment?

I had to have mine removed, too. But I had more time to prepare. Emergency surgery is always worrisome and stressful. Our own RC can relate. I'm glad you went in to the ER and got checked out. I was only in a day or two and went back to work fairly quickly. I hope you recover quickly and start feeling better soon. Now you need to watch the fatty foods or you'll know what they mean when they say "loose as a goose"! Sorry, don't want to make you laugh right now!

Get well soon, Brother!  

Sometimes those stomach bugs begin with fatigue, abdominal discomfort, vomiting and then progress to the general symptom of feeling like garbage. You may have overdone it when you scaled Everest. Your body demands your energy to fighting the Dragon. When you tax or demand too much from one system, another must give in to that demand. I know it sounds odd, but I've been seeing this with our members since I can remember. You HAVE to slow down and concentrate on treating your body like a Temple. Good food, good rest and lots of water.

Kudos to your wife! I'm glad you've got some help there and she's going to get you some Gatorade to keep your electrolytes up. You don't want an imbalance from the vomiting and the increased water intake. If we can offer up any advice, you know where to find us. Rest easy Brother....

Oh, one more thing. Just because you're not constipated, doesn't mean you're not suffering from bloat! Treatment can cause the bloat... 

 No I don't think it's a bug. My wife is going to go out and get a thermometer and some Gatorade.  I did have a bowel movement this morning. So I don't think I'm blocked up.

Is there a chance you picked up a bug? Take your temperature.

No problem with the Harvoni, but I'm concerned about the vomiting. When did you last have a BM? If you've been plugged up for several days, you need to get that cleaned out!

 I threw up eight hours after taking my Harvoni. I assume the Harvoni was already in my system. And I just threw up again after taking Gas-X an hour ago. I did have a bowl movement this morning.

Saluda,

My opinion is you've got discomfort from our previous discussion, bloating and intestinal distress. You over exerted yourself while you weren't hydrating properly, so add a little dehydration to the mix. If you've been constipated, there's another factor on top of the bloat. If you can't pass enough gas around the blockage and you keep eating, however slight, it has nowhere to go. 

If you speak to your doctor or nurse tomorrow, get approval to take a laxative. I would say to just go ahead and try some 5mg Dulcolax, but I can't advise you to take medication, we're not doctors. Others here have used that approach when the couldn't clear the log jam and a mild laxative, glycerin suppository or dynamite has worked quite well. Wait on the dynamite, it's messy...   Now if you do decide to use a laxative, you should avoid the magnesium based products without permission, they require a special administration schedule with Harvoni. If push comes to shove and you can't get anything to work, an enema works wonders. These laxatives increase intestinal motility and draw water from your system to loosen things up. That means you must add more fluids to your daily intake. When we push the water issue, this is why. You may not feel like you need to be drinking that much, but your body is consuming it at a high rate because of these drugs. Stick to a gallon a day and you'll meet your goal. Hang in there bud...

Thanks polosilver.

Hi Canuck,

Now that I got past the anxiety of the first week, life is better. I anticipated the Harvoni to a point where I thought treatment would be like an instant fix for some reason. Now I am smoothing out a bit and the things I noticed this week is that I am not itching as much. For years, the bottom of my feet itched, my chest has itched and my body in general itched off and on. The other day I noticed that I am not itching as much and that is a relief. I do itch some, but not as intense as used to be even a few weeks ago before starting Harvoni. Hopefully this trend will continue. I battled a migraine during Day 9-12 and got through it with massage, ice and warm soaks. I have been sleeping better I'm usually up and down throughout the night and the last several nights the insomnia is much less. I welcome that trend to continue.

Saludahiker - Sorry to read about your pain and challenges right now. I'm on day 16 of Harvoni and agree with Tig to call your doctor/nurse and let them know. I hope you can rest and be more comfortable as the day progresses. I've been eating a prune at night and in the morning and that is working for me so far. Best wishes to you.

Thanks Tig. I did have a lot of gas yesterday evening and was constipated. I still feel pretty bad. I have to force myself to eat. This morning I had a bowl of oatmeal and for lunch I had a yogurt and some watermelon. I took an Advil after lunch, but the pain is still there and at times very intense. I will definitely take your advice and slow down. No more strenuous hikes. I really appreciate your response. It makes a lot of sense.

Of course you should call your doctor with any concerns, but there are many instances of this same liver area pain or discomfort. Harvoni or any Sofosbuvir treatment is known to cause some abdominal complaints. One thing I know that is caused by it, is bloating with or without gas. There is a loop of the ascending colon that passes right under the liver in that area. When this kind of bloating occurs, it shifts things around. Another thing, many people automatically think RUQ pain is caused by the liver, which is possible, but most don't realize the liver extends clear across the abdomen to the heart. Much of that RUQ discomfort can be attributed to the colon, not the liver.

Your liver doesn't have pain receptors, but the sac and supporting tissues do. If your liver is shifting around from an extended colon, you're going to have pain, sometimes severe. Start by moderating your diet and reducing gas causing food.

Keep up with the hydration and do yourself a favor, cut back on the rigorous exercise routine. A nice walk is one thing, climbing Mt. Everest should be avoided. Save your strength for fighting this disease. Treatment isn't that long, you should take it easy right now and make up for it after you're finished.

It's day 20 and I'm not doing well. I didn't sleep well last night and I finally got out of bed at 4 AM. I have pain around my liver. I have been getting enough water, a gallon a day, but yesterday I went on a strenuous hike and may have gotten dehydrated. Today I have already drank a little less than a half gallon. During my Harvoni consultation they warned me that it looked like I had been infected by hepatitis B at some point, but it was not active. When I was initially diagnosed with hepatitis C I did get vaccinated against hepatitis B, but now they seem to think it didn't take and want me to be revaccinated after treatmen.  I hope that the hepatitis B hasn't reappeared. If I'm not feeling better by tomorrow I will call my nurse and let her know what's going on.

Hi Canuck,

I do have an appointment for my lab work.  I travel my fourth week, but made the appointment for Friday, as I'm always home on Friday. Thanks!

Hey pmcgrew!

Happy Sat! Your last day? Wow! Congrats on getting through, I'm glad you posted again with all your news (6 week und!). I too cannot wait for you to be done, done, done with HCV - after all you have been through. No more hepc on your back now! I hope you get to feeling back to 110% quickly. Please do post some more. Let us know how all your labs are.  C.

Hi saluda,

So glad your work week and travel went OK! Day 12! Where does the time go! Glad to hear how you are packing that water in (and around) and that all is well in the sleeping dept. I assume you will be back home again during your week 4 for a blood draw? Do you have the dates already planned out for labwork? Rest and eat well (and of course drink lots of water) on your time home (uh, ALL the time, actually!). I'm glad you wrote "I got this", I think you have too!  C.

Polo, 

A lot of us do "reflecting", (as hard as it is sometimes) personally, I think it is a good thing! I did MUCH reflecting, before, during, after treatment and still now! My best learning never occurs at the time of events, only after it seems (I'm always late for things! hee hee) - without using all our available windows and mirrors, how can we tell how good we are driving the bus! Reflection and perspective can only help. I am glad you put yourself to a quiet beddy-by with your big strong Harvoni buddy tucked in with you the other night. Keep rollin'. I thank my lucky stars, every day, that my longstanding hepc was only discovered recently - we get to be cured with todays drugs.  C.  

Hey Saluda,

Good update! Traveling while on treatment can be stressful, but you were prepared and thankfully these new treatments are easier on the mind and body. That's a blessing, trust me! Keep up the good work and remember to keep that water bottle handy. It's the ticket to a comfortable ride on this Train!!

As I have suffered from insomnia on and off for years, I did not want to chance the Harvoni making it worse so I did it in the morn. I did not notice a difference in my insomnia while on treatment, it was the same. Drank plenty of water, and after my body adjusted to the Rx it was not bad at all!

Thank you for your quick response. Early morning probably makes sense for me too. Glad you're doing well on the drug. Nice to hear.