Hep C Discussion Forum

hepcat60 · Senior Member

RE: I'm on my way!

mallani · Guru

Hi Zlikster,

I think the sun sensitivity was mostly due to Riba. which takes some time to be eliminated. I waited until week 12 post Rx before I gave myself a full blast. Try it and see how you go. A swim in the Adriatic will make you feel good! Recover quickly!

Zlikster · Guru

Hey Malcolm, when do you think it's ok to expose to direct sunlight (with UV protection of course) at what week EOT? i am now almost one week EOT and i want to see some sun finally when did you went to your trip? 4th week after EOT?

cheers

mallani · Guru

Hi Tig,

The intolerance of heat is common. I live in Brisbane which has a similar climate. I basicly stayed indoors and turned the A/C on. I could not stand sunlight as it caused a red, blotchy rash. Happily I've got my tan back after 5 days in Spain.

Florida is a lovely State. I'v e been to Disneyworld twice, down to Key West, and saw a Space Shuttle launch. There are some great golf courses around Orlando. I've got a good friend who has retired to Clearwater, and we'll see him next year. Cheers.

Tig · Admin

Thank you for sharing your experiences! I've got most of those same issues going on, except for the hair loss. I did have a minor problem with that when I took the mono therapy in 96. I've also noticed a terrible problem with dizziness upon standing. I fell as a result of that last week but am well aware of that now so I get up slowly. One other problem I'm having is an extreme intolerance to heat! Do any of you have this going on? I live on the southwest Florida coast and the heat is terrible. It's probably one of the hottest, high humidity areas in the US and this is our rainy/hurricane season. It's not a nice place for those of us going through treatment, but when treatment is over I'm sure you would all love the tropical environment! Disney World is just a half day drive north, come say hi to Mickey Mouse!

mallani · Guru

Hi guys,

Sorry about my lack of knowledge about the Pro-Click. We don't have that in Australia.

Tig, what do you want to know about Victrelis Sx? I did 44 weeks of it, and I'll list my Sx in the order they appeared.

. Dysgeusia (metallic taste in mouth) started from week 1 and lasted all through Rx. Just a nuisance really.

. Appetite change. The taste buds become weird, and I couldn't eat my favorite foods. This lasted all through the 44 weeks.

. Dry eyes, mouth, skin were pretty annoying for the whole period.

. Hair loss started at week 16, and continued throughout. It started to grow back 3 weeks post Rx.

. Riba rash. For me this was pretty mild, and didn't start until week 36. Just an itchy rash around the trunk and upper legs, and easily controlled by steroid ointment.

. Riba rage and mood changes. This comes on gradually are you are often not aware of it. Once I was aware of it, I kept my mouth shut, and tried to avoid any potential conflict. I didn't have any trouble sleeping and didn't take any sedatives or antidepressants. At times, the difficult pill regime of Victrelis and Riba made me very angry, but i didn't miss a dose.

. Fatigue. This was really bad and started when my Hb dropped from 17 to 9 at week 10. Most of the time the Hb was between 8 and 9. At EOT I had dropped to 7, which had me virtually unable to walk or stand. This is unusual as my doc did not believe in Riba reductions, which is an extreme view. I'm not sure he was correct. My platelets and WBC dropped to very low levels, but these were not a problem.

The Incivek Members have similar symptoms of differing degrees, but also have to deal with the Incivek rash and ano-rectal problems. Also, as I have said, I was grateful to be on Victrelis as I believe it is a bit more effective for cirrhotics.

Kellie · Senior Member

Thanks mallani, you are correct. Not in the fat but the sub derma layer. I was mistaken in my explaining it correctly. I'm doing it correctly though. Interestingly enough though, my sx from the Pegasus 180 mcg, is getting worse with each successive week. The first 10 weeks were like I wasn't even feeling it at all. My hair sure is falling out really good now. I stand over the loo each a.m. and brush through my hair. yikes. It's a bit scary. Not as scary as when I was 40 in 2003 and a bit more self conscious about my looks. Now? Oh well....I just figure it was grown with cells and blood that was infected with hcv, so fall out as it may.

Hi tig, I'm really nauseated today with migraine today - 4 days after my shot. I might still be clearing the incivik too. Best bro, Kel

tonib · Senior Member

yes I have that self injector thing a ma jing...it was easy....so far on day 3 of the ribo, seems ok...but don't know for sure cause I'm still feeling the effects from peg on Friday night...I am glad I have this forum to turn to ...its been such a God send to me.

The thought of spending my weekends like this is pretty scary...and I am afraid to make any commitments or plans of any kind...OH YEAH I FORGOT ONE DAY AT A TIME! ONE DAY AT A TIME!!

Biggyb · Guru

Yea the Pro Click goes straight in, can't be on a angle, i had both types.

ucbgal · Senior Member

tonib,

i agree w/everyone that the first shot is the worst. think positively and the sx will only ease up. now i find i don't even dread the shot,it's the pills that are kicking me. also i found that getting the self-injecting pen decreased all my anxiety. good luck.

sandy,ucbgal

Tig · Admin

Thanks Bob! I do appreciate knowing that I'm not imagining these symptoms, lol! I knew better, but it seems there are more folks saying by now I shouldn't be getting worse SX but less. I hope for that day, but right now am grateful to know that others have gone through it too.

Tig · Admin

Hey Malcolm, I've been looking around for additional information here and it's not as plentiful as the Incivek. I would like to have a larger Vic group, but there isn't right now. I don't think saying "hopefully soon" would be appropriate either! Im using a similar rotation pattern for injection sites. I'm using the Pegasys Pro Click auto injector and there is no indicator on the unit that mentions the bevel position. I did speak with the dispensing pharmacy and they don't recommend trying to use any type of injection angle with this injector, it wasn't designed for it (90 deg only). Their nurse came to my house and did the pre treatment education here and said that too. I used the old style needle and syringe the first time in treatment and did the 45 degree method then. That was when we took 3 shots per week. That as it turned out wasn't successful for many 1's at all. I had several SX with Interferon then, and apparently am now as well. Of course now I've added the RIBA and Vic to the mix. I can hope that things will improve like some have said, but so far that isn't the case. The more I hear about this being the exception instead of the rule gives me hope. At the same time, for some of us (that would be me), its proving to be more difficult and have to accept being the exception. So any of you experiencing more problems than I guess is usual, I would like to hear from you. You're not alone hmm

Biggyb · Guru

Tig56 wrote:
I wish it got easier after the 3rd or 4th shot! The SX are increasingly worse with each shot. I can almost guarantee that days 1-3 post injection are most unpleasant.

I know how you feel Tig, i kept thinking that towards the end, my SX from peg would get better, that was a pipe dream. Had to plan my weeks on being sick for 2-3 days for 48 long weeks..Just keep hanging in there were cheering for you..~Bob

Dillo · Senior Member

Hey Tig,

I thought I'd be doing my shots in my leg but my NP told me I'd do better in my stomach. (lots more fat there back then)

I measure about two inches from my belly button and let er rip at a 45 deg angle. When I was on the Incivek I used to have bad red marks around the injection site for a couple of weeks. Now it's hard to remember just where I did it last unless it's a little sore.

Mena,

Heres a link to a thread here about people favorite fatty foods

Favorite Fatty Helper

Nurschick's

Yummy Smoothies with more than 20gms of fat

and one on

20 grams of fat foods without sugar

I found no matter what I ate I couldn't stand to look at it after a while......except those little peanut butter saltines in the package like Keebler or Austin's 10 gms of fat per package to go.

tonib · Senior Member

I am not on the victrellis yet, but I will be. I already have lots of rash problems and I have this mouth thrush thing for almost a year with big red swollen sores with a white center...it hurts like hell, and I have sensitive skin so I break out with all kinds of rashes,

I do have borderline low platelets already, and that is why my doc wants me to get a blood test 1x week for the first few weeks/month or so to make sure I'm ok.

Day 2 after the shot and I am starting to feel normal.....thank God....I had fever, chills, a headache from hell and deep tissue body aches.

I hear the 2nd shot is not as bad with the symptoms....I am hoping and praying for that.

mallani · Guru

Hi Tig56,

A year ago, 75% of the Forum triples were on Incivek. Now it is about 50%. Victrelis does not cause much in the way of direct Sx. It doesn't cause a rash and there are usually no ano-rectal issues. However it combines with Peg and Riba to produce a more severe anaemia (in most cases). The anaemia builds gradually and you can tell by your Hb and MCV. This is what causes the fatigue. Your doctor will keep an eye on it and if the Hb drops below 10, you will get a Riba dose reduction (in the USA).

You need to vary the site of injection of the Peg. I had about 6 places around my belly-button that I rotated around. An angle of 45 degrees to the skin is good, bevel of needle up, and don't pull back on the plunger. After injecting the full contents of the syringe, wait a few seconds before pulling it out. Remember it is a subcutaneous injection, so it shouldn't be going into fat. Remember to take the Peg out of the fridge 5 minutes before, so the solution is at room temperature. If you're going to take a panadol or tylenol, take it at least 1 hour before the injection. Most people soon get used to the Peg, and the Sx (if any) decrease after a few weeks.

There have been several Forum discussions on the differences between Incivek and Victrelis. Have a search around. Cheers.

Tig · Admin

Thanks Kel! I'm using my stomach and thighs on a rotating basis. It doesnt really matter where I inject, the result is the same. I'm taking the highest dose of this stuff, so I guess it's to be anticipated, if not expected. I've been looking around the forum and haven't seen a section that deals with the differences of the two triple therapy programs. (Or is there?) I have concluded that there are obvious differences between those on Incivek and Victrelis. It seems that most of the people here are taking Incivek, so I'm very limited when looking for people to talk to about the Victrelis SX. I find myself posting on some of the study threads just to take part, but the differences are night and day. Oh well, tie another knot in the rope and hang on...

Kellie · Senior Member

I give the shot in the fattest part of my belly at a 45 degree.

I make sure it's nowhere near any muscle. Are you doing the same, B? I think the fat slows the dispersion of the medication into the body system. I'm just wondering.

When I did the treatment the first time in 03' I used my quads, which at that time had less fat then my belly (I had some weird fear of shots in my belly back then).

I had more sx back then (mainly lots of migraines and joint pain), then now (knock on wood). More fat on my belly now lol... biggrin I'm no doc, though, so I'm only following my intuition on this. Just wondering.

I'm sorry it's getting worse for you. Sending good thoughts and energy to you for a comfortable day, Bro.

Tig · Admin

I wish it got easier after the 3rd or 4th shot! The SX are increasingly worse with each shot. I can almost guarantee that days 1-3 post injection are most unpleasant. The nausea from the Interferon is getting more prevalent as well. The tips help some but it is what it is. I keep waiting for the day it gets easier, but it just isn't going to be today. The only easy day was yesterday... confuse

hepCFREEwanab · Veteran Member

Hello tonib, for my husband the first shot brought chills, fever and extreme tiredness for about 4 days. The second shot no fever at all!

What time do you shoot yourself? LOL ! For my husband the first time was at the Dr. office at around 12:30 pm and by 5:30 all the above SX came on.

The second shot we changed the time to 7:30 pm and it worked out much better. I figured if the samething were to happen at least he would be in bed already!

I hope things get better....remember the light at the end of the rainbow! (((())))

Mena

hepcat60 · Senior Member

The first cut is the deepest........

Zlikster · Guru

1st one is the worst, don't worry. You will get used to it round 3rd or 4th shot. Try sleepover side fx from it!

tonib · Senior Member

1st shot done, and I suffered with fever and body aches and a headache from hell! Worst part was the maximum 500 mg of tylenol the doc said I could take no more than that.....really?????? I was a good girl and followed the doc's orders and day 2 is better...the fever is gone, just have the body aches...but that could be from laying in bed for 14 hours.????

I am extremely tired...but I have been tired from the HCV before. My poor dog, she was used to getting these long walks in the morning and at night.....

Tomorrow is the real challenge...work. I have really good hours for the summer ( I drive a school bus for a camp) I work 7 to 9:30 then 11-12:30 then 2 to 4:30....so I have plenty of nap time.....This won't be the case in September...but I am taking 1 day at a time over here....

I am hoping that the 1st shot was the worst.....not looking forward to my next shot....

2willy · Senior Member

This forum is a life savor and way to go and start, I am near the end and going having a real emotional turmoile from the side effects, doing it alone now with me and the dogs. Ended up in hospital today because of stress, side effects of treatment etc. Again I say it will be worth it. my goal is to get healthy know and out live the rest or die fighting.

Bill and Dogs

Biggyb · Guru

tonib wrote:
but I guess its better to start this alone, and do this alone....of course I have you guys, thank GOD!

Good Luck, I also went through this alone. Probably the best way cause i had terrible moods. But like you i had this forum which was a blessing when i stumbled on it.

nurschic · Senior Member

yeah! Treatment started! you got this!

tonib · Senior Member

Thanks everyone for all your kind words and the boost to my faltering ego....I was hoping my daughter would be home for my 1st shot, but I guess its better to start this alone, and do this alone....of course I have you guys, thank GOD!

If I didn't have this forum I would be totally alone, and I just want to say how much I appreciate a place like this that I can go and get information and vent.

I guess we come into this world alone and thats how we leave it. While we are here we have friends/family/spouses/ but we are alone in our thoughts.

Thanks again guys, I just took my 500 mg of tylenol...and in 20 mins my 1st shot with my 400 mg ****tail of riba....yikes!

TN99 · Member

Good on you for stepping up to the fight.
I'm about to take my 2 shot this evening.
Tighten your laces and keep marching forward. Its absolutely doable.

Kellie · Senior Member

Good for you, Tonib. Just think - you're starting on the road to recovery. How exciting. biggrin Stay excited about the wonderful healing that will be taking place and all the energy you will have when this is over. Post often. We're here for you - we walk in your shoes Kel

JIme · Guru

Congrats on starting Toni. You can do this!!!!!!

AngieV123 · Senior Member

I'll be right behind you in a few weeks! Good luck :)

nurschic · Senior Member

WooHoo Toni!! Congrats on getting started! Youll do great....just remember to take one day at a time and to listen to your body :)

Sending loving thoughts your way!

Zlikster · Guru

good luck toni, it's nada that scary, it's more annoying than painfull soon youl find your own weekly habbit in avoiding sx.

re timing of the shot, it took me 3 shots to realise best timing (i had to go to hospital round noon to get it! ugh! big mistake). Take the shot cca 3 hrs before sleep. In my case sx started to kick in 3-6hrs after shot and lasted for another 6h (well the heaviest ones). Day after i try to oversleep as much as i can sx residue (headache). That worked for me pretty good for 4months

a bath helped me few times to ease interferon sx.

i didn;t find Riba problematic (well only rashes and some depression) compared to interferon.

anyways, you will see how your body responds and adjust your schedule according it ;)

good luck!

JoAnneh · Guru

It's scary getting started!
Just remember we are fighting
To save our liver, can't live without it!
I just finished 48 weeks 2 1/2 months ago.
It requires a lot of waiting so settle in
The forum is a huge help in coping
With tx.
I took 2 Tylenol with my first few shots.
Keep us posted

Dillo · Senior Member

Toni,

Good luck with your treatment. Hold on tight and I believe you'll make it. In the total scheme of things your just doing some time...time that should make the rest of your stay a lot better. ;)

hrsetrdr · Guru

Best of luck with your treatment, tonib. This is worth doing, and will certainly be an unforgettable experience, just hang on tight and keep your seat belt buckled until the sign goes out.

ucbgal · Senior Member

tonib,

get an excellent nite's sleep! i wish you the courage and faith to be strong. also i hope you have someone to run out and get all those intersting otc meds needed. do keep all receipts for next year's taxes! be well. oh, i just noticed you're from nj as well.

sandy,ucbgal

tonib · Senior Member

Remind yourself, "This is not working against me. This is working for me. It's getting me in position for the amazing future God has in store."

Biggyb · Guru

Good luck tonib, just take it 1 day at a time. ~Cheers biggrin

tonib · Senior Member

Tomorrow morning I will take my 1st dosage of 600 mg Ribavarin, and then tomorrow night I will have another dose of 400 mg and my 1st shot...I am really on my way......funny I used to have a drink to drown my sorrows or to try to cope with a difficult situation.....a whole new day a whole new me...

Hep C Discussion Forum

~Bob~

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