Side Effects - Suggestions and Cures and Concerns

[NYgirl]

It seems there are a lot of people that are new to or deciding on treatment so I thought perhaps we could do a thread for them on some cures to the things they will be experiencing.

While we don't know what will happen to anyone we can advise from our own experiences.

I know I've had really ODDBALL things happen (to the fact that I gave away my brand new antipersperant yesterday because quite simply I do NOT sweat at ALL any longer LOL) and have come running in here for help. I thought maybe it would be easier this way.

So I'll start with some sides and things that have helped.

-----------------------------

The Infamous RIBA RASH

Compared to the side effect everyone is always worried about (shot night) this seems small however my body is completely scarred from the itching before I found a solution.

riba rash is little tiny bumps that start out very very small and then  begin to itch as if you have chickenpox. in fact that is what I think of them as. If you itch them alot they can get infected and then scar. Yuck that is what happened to me.

I found that using a GOOD moisturizer (such an Gold Bond Extra Strength Tiple Action Relief for Dry & Itchy Skin in the green bottle with a red top) has worked WONDERS. But you must realize the most important thing is to moisturize CONSTANTLY = when your body is covered constantly with moisturizer it seems to kill off the rash. Doing it once won't work.

As the treatment completely and totally dehydrates us drinking water constantly and moisturizing repeatedly is a NECESSARY thing to

Next.......

[jmjm530]

Riba can do a number not only drying out the skin, but our insides as well. A lot of us therefore have upper-respiratory issues on treatment. In my case, it got so bad that simple walk outside when the air is colder became painful.

Of course, you can wrap a scraf around your face -- a 3M mask works OK as well -- but the best solution I've found is a fleece ski mask   made that can be found at icanbreathe.com

It really delivers warm, moist air on the coldest of days and best of all it's silk-lined, so no face irritation. And supposedly, it won't fog your glasses -- well, no product is perfect. LOL. They also make some other face masks as well, for pollution, etc.

The bad news is that they have been known to scare little children and dogs. LOL.  The good news is that since they cover your face, no one will know it's you. :)

http://icanbreathe.com/shopsite_sc/store/html/page6.html

-- Jim

[Mister beagle bailey]

I have been looking for you, how are you feeling?

The way you just posted you sound down and I can surely understand that.  Try and cheer up a little, like you tell me the spirit really helps you keep on top of all that is happening.

There is still a good chance that it will leave you after you stop tx.  Did some research and it seem's there are many treating and about 2-3 months after finishing it left them.

Bob :)

[Chriskid]

A docudrama on the subject:

http://mm.dfilm.com/mm2s/mm_route.php?id=2844682

[NYgirl]

You're right I am a bit down - it's very bizarre on shot night to realize what I'm doing when now I've got the other situation - a bit down but NEVER out! :)  It just takes a bit of warm up time to put that smile face back on now. I must have eaten 100 fudgicles this weekend I kept going well if I ain't gonna gain any weight hahahahah.  Good silver lining!

I have to admit, figuring out for real this weekend that I have absolutely no pit perspiration at all any longer freaked me out. I was like wow I never thought of it but...so what is that about!  At least I know I smell like Channel #5 and not BO!  ;-)


Re: Mouth Bumps

I went out and got some Citrus Scope this weekend. The doctor advised using a baking soda/water mouth rinse for them and I thought Scope sounded better and it looked pretty. Well so far it appears to be helping with the mouth sores alot but man oh MAN that junk is so DISGUSTING!  Pretty color and name aside yuck it's still poison!

I won't give up until I figure out a way around each and every one of these sides.  They make treatment worse and we don't need them so now I'm on a warpath against not only the virus but them too!

[NYgirl]

Wow that is so important - why in the world would they drop it if it's works BETTER for 3s!  My God I've never read that in here once.

GREAT post - as always.

[jmjm530]

Thanks for asking. Like yourself, been sleeping and eating a lot the first couple of days post tx. I think my old self is starting to come back but it's a *weary* version. I imagine it will take some time until my body re-charges itself. Also the hemoglobin has a way to go.

How are your sides going? I posted somewhere yesterday that your xtra riba will take around 2-weeks to kick in. So be careful because functionally, you may only have half the dose you're taking in your system right now which can give you a false sense of well-being. Hopefully, you're having weekly CBC's until things your hgb curve flattens. Might also consider Procrit if you're upping the riba, or at least getting an rx through the insurance process.

-- Jim

[Mister beagle bailey]

Didn't know that, this is the first I'm hearing of this.  What else does Europe do that is different then what we do here?  I think also the 2's are common in Europe and Asia.
To bad your didn't tell you and give you a choice. Will you do 48 weeks now?

Beagle

[NYgirl]

You know if they think that the chance at SVR (not the Und) is better with the extra weeks to prevent against relapse it makes NO SENSE why they wouldn't make it protocol to me.

You know I'm on 1000 Riba even for my weight and on shot night and the next day I pop an extra one ... I call it ala Jimming
;-) well kidding about that but not the extra Riba. Since I started doing that is when I got the Un so I don't know if it mattered or NOT but I prefer to think it did.

I hope to God you are getting weekly CBCs with that high Riba consumption - God know that anemia argh uggh ahhh is just atrocious.

We worry about each other - that's why this place is so great.

The boss - well I have backed up EVERY single document I can find and typed out every thing I can think of inappropriate he's ever said getting ready. When he hears I am going to need time off for an operation holy COW the hammer will come down. The pig will probably try to put me on some stupid BS job again...- the last woman that had my job IS willing to go to court should I file anything on him because it all happened to her so I feel good about that but..I would be devastated to lose my job you know? I NEED the money NOW. But as with everything else we'll see how it goes.

I don't know if they are going to try medication or just cut it out and then medicate. I have to go to Nuclear medicine and have a test done. I found out my sister in law had hers out and she is fine so that is something to hold on to.

It's all such a cr*pshoot just like everybody says isn't it?

But you and me h3ll we are fighters and nobody can take THAT from us no WAY in the world.  :)

[FlGuy]

Funny you should metion that.  A year ago, within 2 weeks, I was dx'd with high BP, diabetes, HCV and had a colonoscopy.  Needless to say, my head and other parts were spinning.  I remember the GI saying that tx would be 48 weeks.  When I saw him next he said 24.  I'm a liitle ussure right now if the result of the geno-typing were available at that first dicsussion though.  Started, and committed to the 24. As i read more I never read that 3's were anything but 24 and really didn't look into pre-peglation tx protocols.  I was scared enough with the prospect of 24.

[GoofyDad]

I was aware that g3's used to treat longer - but that of course was then.

I'm surprised to hear that 48 weeks is SOC in Europe.

I think Cuteus posted a link to a study that compared 48 to 24 for 2's/3's, and I think it came from Europe. I believe that was likely the start of the movement to shorter txs for g2/3.

The 2 studies that compared 12 and 16 weeks, Mangia and von Wagner respectively, against 24 weeks for 2/3's were conducted in Europe.

NYgirl, Common sense suggests that SVR rates would likely be somewhat higher for 2/3's who treat for 48 weeks over 24, but is it really worth it? I mean g1's would probably have higher SVR rates on 96 weeks too. But at what cost?

[GoofyDad]

Believe me when I say I have 'boiled the ocean' over looking at tx durations.

Here's another perspective:

Assume 100 g3 pts and a 24 week SVR rate of 50%.

Alt 1: Treat 'em all for 6 mos, and you have 50 years of tx. Now treat the 50 failures for 1 year and that's another 50 years, for a total of 100 years.

Alt 2: Treat the whole lot for 1 year from the get go, yielding 100 years of tx.

Note that any SVR rate over 50% for the 6 mos tx, ends up with Alt 1 producing fewer total tx months than Alt 2.

Also note that even at a 50% SVR rate, Alt 1 would probably be overall a more effective aproach.

There are subtleties to this that I didn't go into, like drop outs, but IMO, treating a 'typical' G3 for longer than 24 weeks doesn't make sense.

Of course, the 4 week RVR deal adds a whole-nother dimension. Since the majoriy of g3's reach RVR, not acheiving that would be something to consider. Of course, these are just the musings and ramblings of a layman.

[Algernon]

OK, you guys are fueling the fire of a woman who takes sleep meds primarily because she's obsessing over the best length of treatment for a 3.

What I don't get is why some statistician doesn't just come up with a formula that takes into account every factor (genotype, RVR, VL, age, etc. etc) and generate a score for any individual and let that score guide how long we treat.

I don't know about what they do in Europe BUT all the studies I've seen (and I think I have copies of all of them...) suggest that 24 weeks is as effective as 48 for 3s (they mean, there's not a statistically significant difference--of course, when one of us falls within the margin of error and 24 isn't enough, statistics aren't very reassuring.

OK, here's a new one for you.  My genotype report says "3a f".  Anyone ever heard of that?  Probably means I need 162 weeks of treatment.

JIM:  It makes complete sense to me that after spending so many months attacking your body, that it would take a little while to recover.  I was talking with my doc about planning a big trip with my kids about a month after treatment stops and he told me that he would wait 3 months to be safe.  He thinks that generally healthy, well-functioning people can easily take that long to recover.  Hell, it took me months to recover from pregnancy and childbirth--and that was easy compared to this.  OK, it's off to week 13 for me....  Solidarity, Deb  

[lilmoma]

I am a 1b with a VL of 2.5 million and on week 5 of tx.
I have been drowning myself in water, and lotions and following every piece of advice I can. I pace myself b/c I have such a physical job, and I dont want to just drop (I am trying NOT to draw attention to myself while treating) I have had small dealings with the upper respiratory and the little bumps, and the insomnia, and all that, so far keeping things under control. My biggest whine is that I run out of breath sometimes. Just talking I will suddenly feel light headed, and a couple of times at work I just started spinning out while standing there doing really nothing, and I would hurry and lean against a counter so nobody would notice that I was starting to "tip over"
While my boss is aware that I am treating, I do not want to give him any amunition, so I must be tough, at least on the outside,.......they really dont have much heart, I am afraid I am only a number at work.
lilmoma

[Algernon]

Lil:  Sounds like you are getting anemic!  I was so breathless after tying my shoes, I'd have to sit down.  Get checked right away.

Oh Kalio, I think about you a lot.  You're such a trooper.  Last week was my worst week ever (thrush, bronchitis, car wreck).  But now I feel like a normal OK chemo (everything is relative...).  HOpe that Riba keeps its touch light for you!

[strator]

Jim -- I never got a chance to congratulate you on finishing your over the top tx. You certainly are one of my first memories of this forum - knowledge, humility, compassion, inspiration, and humor- honestly my first few days on this forum I felt safer seeing you posting. I liked your 'okay kid-this is hep c 101 posts.' I also always felt you handled yourself with grace when opinions differed. May you be twice blessed- with the view from the SVR cabin on Wellness Mountain, and the serenity and rest when you go to bed at night that you've done your best and made a difference for many of us here.
Live your days full and serene, look forward to all you have in front of you, and smile at the realization that free of the virus the choices are no longer clouded.

Goof- How are you doing goofy me lord? I believe my post tx sentiments for you were covered when I jumped the gun with your finish date. AND YES- I did see your little post... 'let's not tell strator, he can be a possive sort.' Dog.
keep us posted and  laughing.

lilmomma- My first 6 weeks or so because I was doing physical work, and a lot of bending and twisting, I kept a bottle of water by my side while I worked. When I got lightheaded I grabbed that first, then leaned.
be Well
Don

[kiltedguy]

For my skin I've been using "That Glow" for mothers-to-be, Belly Magic stretch mark cream. I like the feel of it and their right since using it "I have no stretch marks!"
;)

[FlGuy]

Several months ago Goof posed a scenario (I may have mis-remembered) relative to 3's and the risk/reward of 3's treating for 12 weeks. The rationale that I captured was that if you get out at 12, rather than 24, you could win the bet if you got svr with the 12.  If no svr at 12 then the risk is going another 24, total of 36 with the grand questions is the risk worth it?  I remember mulling it for a few seconds and then realizing that at the start I had my gauges set for 24 and I would do anything to be compliant to the 24.  The good news is that I met the committment to myself - no mean feat to me.  With the recent 24 vs 48 discussions I'm not rattled or second-guessing.  Still playing Scarlet O'Hara on this one. I'll see what happens at 6 months post, and worry when I need to.  Until then, I'm enjoying not ingesting that stuff and the iccky blood work each week. Also, until then I have hcv - until I don't.

[beamishboy]

"The Peace of Wild Things"
When despair for the world grows in me
and i wake in the night at the least sound
in fear of what my life and my children's lives may be,
i go and lie down where the wood drake
rests in his beauty on the water,and the great heron feeds.
i come into the peace of wild things
who do not tax their lives with forethought
of grief. i come into the presence of still water.
And i feel above me the day-blind stars
waiting with their light. For a time
i rest in the grace of the world,and i am free.

WENDELL BERRY

[virtualsuzyq]

That is truly beautiful.  Thank you.

[fishdoc]

B. thats my kind of sunday prayer..........thanks.

Lil momma- I hear you.  You guys, I must say I do not know how you do physical labor.  Even a little exertion just wipes me out.  I must admire your fortitude, I don't think I could get up knowing I had to keep moving... all day.  My hat is off to each and every one of you, happy monday  ;(
c.

[OnAPrettyPoison]

Beamish, you are sentimental!  I love it!  Nice place to dream about before the new week.

NY, glad to see you posting, I missed your happy presence on the board.  You are a fighter with a beautiful soul, don't let this thyroid slow you down (or speed you up? riba fog!).

I agree it would be bad if I had to do physical work every day.  However, I will say the mental in an office can be grueling.  I will admit it does make me feel somewhat better to work in the yard on Saturday even if I whine and grumble.

[strator]

Awesome.
Thanks again for asking about me recently. I've had to just take care of a few things, and had a full work week. Today I rested. Well let's say I had no goals today except rest. Had to wake up early for a Sunday cause I realized last night at 11pm I didn't have enough riba for the morning. Woke up hurting and said cr** but took care of the meds and decided the laundry was the only thing getting my attention today. No logos, no 1/2 way houses and meetings, no cooking, or starting my taxes....so I threw a load in the wash & dryer. OH screw it,..I took the dryer back apart and replaced the e ring to stop the incessant noise. It worked, a miracle. Then I got a call to do a PPT presenation, right away. Did that, while I oversaw the kid dye the front of his hair purple. (Choosing my battles). So other than light household stuff I didn't do doodly squat, but somehow didn't sit down til 9pm. I'm probably avoiding thinking about something. The funny thing, the bestpart of the day was when I finished a few things-and realized I hadn't thought about tx or my sx the whole time I was busy. Course Sundays being the day after shot I usually have more energy, go figure.
Only 1 of our computers has internet. The kid has been using the internet a lot to journal with friends so I've been giving him some extra time online. A little leary of what he's journaling, but at least he's writing which means he's getting practice at communicating.
Think I'll watch some tivo'd shows and hit it early.
Rest well,
Don

[lionesss]

Hi. I am a newbie, but discovered this site a couple of months ago when I was considering treatment.  Well, I made the plunge and I am up to shot 3.  I was so nervous about starting treatment but (so far) my fears were unfounded.  I got sick after the first shot, and I can't say I am 100%.  But I am generally okay.  my energy levels are fine, am a bit more itchy and thirsty and anorexic then usual, but it is all manageable.  So for all yous who were scared like me, remember that for some people it aint that bad (and I can be so precious, I thought it would knock me worse then most).
Maybe I am cheating though, as I went on antidepressants prophalatically and now my mood is more stable then its been in years (and I dont generally have a problem with depression either...or so I thought).  
ALso my bloods showed my WCC and neutrophils are already starting to slide down, so I am taking astragalus.  So it aint all roses, but there aint many thorns either.
I am not gloating, I just want to put the sides into perspective for the newbies.  Has anyone else not found Tx as bad as they thought?

[GoofyDad]

I rant once and a while myself about the lack of stats and  national/global database. I think it's an issue of collecting the data in controlled environments, as with studies. As soon as you let clinics and practices submit uncontrolled data, your database becomes tainted and scientifically speaking, invalidated.

Kalio, I have a feeling that treatments are cumulative. My doc likes to think of interferon therapy being a matter of 'training' the immune system. Thus after a relapse, one may be half way trained, making the second session more effective than the first. Note the link Cuteus posted on controlled interuptions. That strategy called for back to back treatments, withdrawing the drugs when un-D was reached. Older study though, and the technique didn't seem to get any traction.

Do you have a source on EU treating geno 3 for 48 weeks? Everything I'm finding points to 24.    

[PKCO]

You want to know why treatment was reduced from 48 to 24 weeks ?  Same exact reason testing went from 24 weeks to 12 for geno 1's. Follow the money.

3's have a very good SVR rate. 80 plus %.

It was the Europeans who did the big study first illustrating a small  difference in SVR rates by treating 2's and 3's for 24 instead of 48 weeks. Other studies have been done since that support this finding. That said, whenever you reduce tx time or set conditions and target dates for clearance you automatically exclude some people from being successful who otherwise would have been if allowed to continue their tx.

Best regards,
PK

[lat36]

Hi Lioness, there's a lot of useful info - and humor - on this forum, I hope you get as much out of it as I have. I'm on shot 45, and although there have been some rough patches, it hasn't been as bad as it could have been (or is for some). It affects different people different ways. You've still got a while to go though - not sure if you're on for 24 or 48. I started to notice my energy dropping fast a few weeks after starting from anemia. I started on AD's for the first time after 7 or 8 months of tx, never had prior problems with depression either, have to say it has been much more tolerable since then. I've had most of the side effects you hear about, but not badly. Hope tx continues to go well for you.

[lionesss]

Thanks for your reply.  Yes, I am hoping I cruise through the rest of it too. I am a genotype 3a so I am on the 6 month course.  My HB has dropped from 135 to 131 last check (values seem to be different here in Australia). So, so far so good.  It seems hemolytic anaemia is a real risk.  I am more worried about becoming neutropenic.  I was so worried about fatigue levels that I saved up some  money and quit my job! (I had a physically and mentally demanding job) So maybe not working and slowing my life down has helped too.  I am still at uni though.  It seems the majority of people on this site are still working, I think that would zap the energy somewhat.  I read on another thread that someone had right hip pain.  That is wild, 'cos for the first few days that is where I experienced pain, What is it with that site?!  It felt like a deep bone ache.  I thought that was where my crazy immune response was getting mobilised from.  I have just got online at home, so I am very excited about that.

[lionesss]

Hey, I heard a rumor that they were considering droppping the 24 week course for 3a down to 16 weeks, Studies are currently been done.  I was offered to have my PCR done at 4 weeks to assess if It was likely that I would respond by 16 weeks (out of interest sake, as not yet approved) I declined as I dont want to get a bad reading which could mean nothing but zap my spirit and motivation.

[strator]

Welcome- Sounds like your doing pretty well and thought tx out before you began. I'd hoped to save up to insure against not working through fatigue level but well... I'm still working construction type stuff at least a few days a week. I actualy feel better when I'm at work usually. It's great that your posting positive and doable reactions to tx. It was suggested to me my first week or so on here just what you said..that it provides a balanced look for those preparing for possible tx. Some are not as fortunate with lesser sx but the one consistent thing about this disease and tx seems to be it's inconsistency nto how people react. One note of  advice: I didn't start paying attention to sx like the rash or mood swings until I started experiencing them. Sometimes sx have a way of popping up even temporarily when you least expect it. Now I try to keep notes about tips on handling sx even if I haven't experienced them yet.
Best thoughts out your way and keep us posted on how your doing-even if it's just to let everyone know your your doing well.
Don

[Mister beagle bailey]

Good morning,

Does any one know why we always see in this country geno 2B but no 2A; 3A but no 3B;we see 1A or B?
Also does any one know if there is a connection between geno types and how we caught it?  EX:( this is made up) say geno 1's from dirty water and geno 2's tatoo guns.

Beagle

[dyce]

Good morning my friend, long time no see. Wow your almost done. I did shot 3 last friday and I'm holding up so far. Caught a flu bug about a week ago but it seems to have pssed. How bout you,
Dyce

[Dale_Ray]

Nice and easy on the mind Beamer thanks. DR

[Krisso]

Hi hippy - I'm also stage 3, 49 and mosy likely have had the virus over 30 years.  I also have the brain fog big time (I thought it was menopause!) headaches and joint ache.  DUring the orientation clinic the NP told me these were common sx's pre tx.  This is why for some, tx didn't seem that horrible.    Just more of the same.    But what do I know?  :)  I'm a real newbie.  Best of luck on your new tx...

[beamishboy]

Side effects: pre tx i had bad shoulder,elbow,hand and sciatica pain&limited motion-25 yrs as wildly enthusiastic stone mason& builder-go figure... at first,durin trx my aches abated considerable,now they r back w/ a vengence;shoulderpain is drivin me to distraction and i have such an incredible 'stiff neck' w/ considerable pain.....lots of fatigue,sweats,insomnia mixed w/ marathon sleepin sessions;did i mention DEPRESSION ? i am fighting back w/ all the pills&pot, strectching,exercise,good food (yes ROCKER!!!!) and positive mindset& humour i can muster!!! Did i mention depression & alienation & gen'l irritability???Week 19 starts today;my skin has errupted acrossed my back & on shins;hair & scalp sux & each time i gobble these nasty lil pills i choke back  my v sensible anti-reaction too them;shot-day after,day after,day after finds me blasted onto the couch;unable to read or watch t.v. radio has proven a godsend esp. BBc world service thru the nite-calms me to hear 'sane' voices from around the world conversing about terrible state of affairs-did i mention Depression??
Ya 'know, it could All be much worse-i am being  bit of a Drama queen here-i am surviving if not thrivin on the trx meds-but i am regularly ingesting toxic chems and my body don't like 'em...All that matters:one day at a time i am approaching SVR....did i mention upper respiratory infection??.....The One great GOOD thing- once we finish and CLEAR-All these sx's will abate & hopefully disappear and everyone will once again Enjoy Great Good Health-I will personally Dance on the Devils grave w/ any and all-ahhh see the pain med is kickin in,now for sum riba.......YEEEHAa!!!!!!!!!!!! KIcking virus butt & slappin Dragons acrossed their ugly mugs in the Adirondaks,tom

[MissMiss]

I too had most of what you describe.  1b for about 37 years.  Also stopped tanning and started burning, brain fog-cognitive skills plumited, went from a-b grades to c-d in short while (was 13 at contraction), eye problems, exagerated pain, and a few others.  Got so tired of always being told nothing was wrong.  Even saw myself turn yellow a few times.  

TX does seem like a lot of the same, now that you mention it.  But on a larger scale.

missmiss