Hep C Discussion Forum

Thanks for the positive feedback; this place has been a Godsend.

Will update once results back; takes 5-6 days since they send it to Mayo in Rochester.

Hi Cathy.

Jimbob's Law: One cannot drag a garden hose or extention cord across the lawn without it snagging on something.

Sorry you're having a rough patch. Good news is you only have 2 more weeks. I'm glad your NP has decided to the VL test now. Hopefully is will give you some piece of mind.

Good luck, best wishes.

Hi Cathy,

Don't worry about that being a sign of new viral action. Same thing happened to me and after EOT +9 the joint discomfort is back in force. I was lucky to go through 2 courses of Interferon tx and I'm convinced that it has had a negative effect on my joints. It's not uncommon for people to experience arthritic conditions secondary to HCV and some of the medications used to fight it, can aggravate an already aggravated condition. Some people experience a correction of these issues, but it seems apparent to me that it requires time for it to happen. In the meantime, do what you can to keep things in control. The use of anti inflammatory medications with your doctors approval, heating pads, warming gels, etc.,  as well as proper hydration are some of the things we can do to find relief. From your description, it sounds like you're following the course of treatment and you're to be commended on that!! It's a struggle to the end, but it's a worthy battle. One you will be quite happy you completed! Hang in there, you really are doing great. Only a few more weeks and this will be behind you. It's going to be a wonderful day, good luck!!

Tig

Cara, I'm so sorry your hubby is having such mood swings. My late husband was bipolar and I can't imagine having to deal with that while on tx. Did you ever find a psychiatrist to see about getting him back on meds, and would he agree?  Perhaps you've experienced that bipolar people often don't stay on their meds; my husband refused, which did not turn out well. A long time ago I read some books by Kay Jamison Redfield who herself is very bipolar and a psychiatrist at John Hopkins, and even she has to be monitored by others to stay on her meds. 

I'm depressed a lot and sad, too...I think that's pretty "normal" for people on Ribavirin but YOUR emotions are probably also exacerbated by the stress of dealing with your husband's emotions. Hang in there.  It's temporary!  To remember this, I actually use a Sharpie pen to write numbers on my Ribapak and the Sovaldi bottle so I can see the progress every time I take the pills and I think that helps.

I hear ya about nothing (healthy) sounding good--but it's more than just not sounding good, it actually nauseates me. Perhaps I crave carbs and sugar because of the lethargy? Instead of pasta, today I made some quinoa with chicken broth and added artichoke hearts, grape tomatoes and a tiny bit of olive oil and feta cheese over the top and it was yummy (and super easy) so I'll probably just keep eating that for weeks until I'm sick of it!

Ambien works for me for sleep...

We are 1/6 of our way through, and I feel your pain Mila!  

Our 2 week labs came back undetected, with all other levels normal, however I feel like something is starting to kick in with both of us...and it's not in a good way.  We are a little late going in for the 4 week, but will find all that out next week.  In the mean time...

I've lost about 6-7 pounds already and am down to weighing 107 @5'5" , absolutely nothing sounds good to eat, ever, and I've just recently started to experience some pretty significant lethargy, as well as waves of sadness and bouts of unexplained tears.  

My husband on the other hand has been having some pretty intense rage, as well as uncontrolled emotions on extreme levels.  It has gotten to the point where he just can't be around me at times for fear of exploding and doing some kind of irreversible damage to our relationship, or around anyone and any relationship for that matter.

What I am wondering is if anyone on the forum has ever gone through treatment at the same time as their spouse, or anyone close in their lives?  Where could I post or start a topic to look for anyone who has?

Wow! That was quick! Very happy for both of you, Cara. ;)

Miss Cara,

I have to agree with Mila! My dad is bipolar, so is my mother-in-law and I know something about this disorder and I know something about ribavirin and hep c and my unprofessional opinion is that the side effects of ribavirin could trigger an episode.

Riba can make you extremely anxious, irritable, itchy, and depressed and unable to sleep without sleeping pills and I felt like I was becoming manic having no personal history at all. I have been off treatment for 7 days and still can't sleep except to pass out from exhaustion although it is definitely getting better every day.

From my experience with my Dad, I know that illness and lifestyle changes can trigger a manic episode that would have him bouncing off the walls 24/7 for days on end like someone really wired on amphetamine. This usually happened when his meds got out of balance from not taking as prescribed and he would get so out of whack that it would take several days of treatment to get him to chill out. It was always a nightmare experience for the family when this happened. It would always take a long time for him to get 'out of balance' so to speak and would take several long miserable days and nights to get him 'back in balance" and nobody got any sleep for days on end.

My 2 cents worth....I would want a very good psych doctor available to monitor through this treatment even if it has been a long time since he has had an episode. There were usually long intervals (3-4 years) between my Dad's episodes but believe me when I say we stay on top of it now as we don't ever want to experience another one if we can help it. My mother-in-law has same disorder but she becomes depressed and suicidal so it manifests differently with different people but my experience has always been very unpleasant regardless which way it swings. I am sure some people probably don't have the same level of severity as my family but seems like to me it could be a catastrophe if it all turned south without someone monitoring him during treatment.

Larry

Miss Cara wrote:

---

Thank you for all the good advice!  Now in other questions, we are new(er) to Nashville, and he hasn't been on any bi-polar meds since his last Dr. In San Diego.  He has no bi-polar history here or Psychiatrist, but we do have a GI and a Primary Care.  As of this far, both of those doctors seem hesitant to prescribe anything at the risk of overstepping the other ones boundaries, as well as doing anything that might interfere with treatment.  

Do you think this is something that the GI would be able to handle, or rather the PC Internist?  Psychiatry is vet hard to get into around here, and it seems to be somewhat of an urgent matter, as neither one of us want him to experience it again!

---

 Hi Cara, that`s a difficult question and i don`t think I can really give you an answer, especially as I`m not familiar with the American medical system.  But I would have thought the first person to contact would be your GI who is in charge of your hubby`s treatment and see what he recommends you to do.  Make a point of stressing the urgency of it and how worried you are that it will happen again.

Great that you`ve got something to help you sleep now, when on treatment we have to do whatever`s necessary! 

Just wanted to let everyone know that I was finally able to get something form my GI for sleep, and so far, so good!  Although it's something I had never heard of (and trust me, there isn't much I haven't come across!)

He prescribed me 30mg capsules of Dalmane (Flurazepam).  Wipes me out no problem, but I've been having a hard time walking up!!!

Hi Cara, how is your hubby now?  If you haven`t already done so I should get in touch with his doctor immediately for professional advice. 

Ribavirin can cause temporary behaviour changes and many of us here have experienced that to some degree or other, and taking into account your husband`s bi-polar condition it must have been very scary indeed for you both.  The package leaflet for ribavirin does tell people to seek urgent medical help in the case of depression, suicidal thoughts or aggressive behaviour, and even though that doesn`t entirely fit the description of what happened with your husband it was still a very drastic episode.   It could be that he needs to go back on his medication, as Mila suggested, but your doctor is the best person to advise you. 

Wishing you both the best of luck!  Do let us know how it goes, we`re here for you. 

Hi Cara - i personally have not however my recommendation would be to contact your doctor first thing this morning! Best of luck!

Hi Miss Cara, good to hear the antibiotics have kicked in so quickly and you`re feeling much better, great!

Brain fog is quite a common side effect while on treatment with ribavirin, it`s something a lot of people experience so try not to worry about it.  I know it can be frustrating, although I think I prefer your description of "interesting"!  All you can really do is live with it and take a little more care about being organised.  You`re only 2 weeks into treatment so your body`s probably still adjusting to the meds so just go with it and relax when you can.

Thanks for the update...how`s hubby doing?   

Hi Miss Cara and Mila,

Matt is right, that is the published ribavirin dosing protocol for Sovaldi treatment.  (<75 Kg = 1000 mg riba, > 75 Kg = 1200 mg riba).  Looks like your doctors have adjusted the dose to take into account your individual weight.  You`ll find the full prescribing details for Sovaldi treatment in the Knowledge Base section if you want to check, and if you`re concerned then I would speak to your doctors about it.

Sorry you`ve gone down with an infection, Miss Cara.  Anemia can also cause shortness of breath, coughing, and dizziness, which could be adding to your symptoms, although this early into your treatment it seems unlikely that your Hb levels would have dropped by much yet.  Hope you feel better soon! 

Hello Miss Cara

The symptoms of anemia are being easily tired, no real lasting energy, Its more of a physical condition than a mental attitude.

The typical Riba dosage is if you weigh less than 165 Lbs you take 1000 mg if over 165 lbs you take 1200 mg but your Doctor may have adjusted your dosage based on your weight of 115 lbs

The meds will tire you out faster but not give you the other issues you talked about.

Have a great day and enjoy reading your mags

matt 

Thank you so much, everyone! Just hearing the encouraging words urges me on. I feel guilty for whining about Riba side effects for 12 weeks, knowing so well how lucky we are who don't have to do IFN for 24 or more weeks!

Had to laugh at Larry's comment about trying to avoid situations that are irritating. I'm single parenting a teenage girl. 'Nuff said!

--Dee

Female, age 59, genotype 2b, contracted in 1974 or 1975, diagnosed 1993. Treatment naive, fibrospect 0-1, persistently normal enzymes, started Sovaldi + ribavirin February 1, 2014

Everyone,

I am almost finished with my 12 week treatment of Sovaldi and Ribavirin. I started mid December and have enough Sovaldi left to last 7 more days.

Anyway, I will be glad when it is over and it can't come soon enough. I have been undetectable for awhile and looks like I may accomplish my initial goal to attain SVR.

The advice to take one day at a time is the best that I can pass onto others on the 12 week treatment program. I have had mostly good days than bad but I have been very irritable lately and the meds are beginning to take their toll on me and have been increasingly irritable these last 4 weeks. Ambien has helped me tremendously to sleep and that has been the biggest problem next to the anxiety and irritability symptoms.

For those starting out on the treatment,  I had few symptoms the first month except sleeplessness, occasional crawling and prickly feeling skin sensations and the benign morphine itch that really never became much of a problem except for some tiny bumps on my chest at times. The second month I started taking sleeping pills and slept better than the first month with no new symptoms. The past 4 weeks have been the worst for me by far and have noticed increased irritability, trouble focusing and concentrating, and more depressed. The past 2 days I have had some minor dizziness too for the first time and a slight headache. Certainly this must be due to all the drugs and my dropping red blood cell count and hemoglobin not to mention the fatigue of treatment.

My recommendation is to try not to worry too much at the beginning of treatment and prepare for the long haul. It has been something of a 12 week marathon and best to just take one day at a time and try to keep yourself happy and steer clear of those things that could possibly annoy and irritate you which for me is a full time job.

If I could do over again, I am not sure I would do during winter as the winter time blues made me more depressed than had I taken during the spring or fall when I could have enjoyed the outdoors instead of snow and ice and cabin fever. On the flip side, I should be able to enjoy the spring, summer, and fall with no medical distractions hopefully.

Larry2384

Thanks, Mallani & Tig! I don't know how to interpret the results, and the doctor hasn't mentioned anything except the hb. Mallani, he already DID want to reduce the dose...remember, it was YOU who convinced me to question that! So he's now doing weekly blood tests instead and I don't think he'll start any shots or consider transfusions unless it gets closer to 9.

Tig is right...I'm not on Interferon. I was on 3 M units/day for 48 weeks in the past, though, so this Ribavirin/Sovaldi is a breeze and I'm ever-so-thankful because I had horrific sx with interferon and am not sure that I ever completely recovered. (I've heard that the new pegylated is easier, though.)

Mallani, glad that my lab results are confirming what you knew to be rubbish!  I like getting all your feedback on them, but I'm also providing them for those of you who can learn from them.

Tig, I was given the option of masks and don't think I could wear the full Darth Vadar mask, either!  Did they try a chin strap on you with the nasal masks? Fortunately, I don't breathe through my mouth so I'm going to do the nasal "pillows" and have an additional nose mask so I can rotate.  Yes, I understand about the REM sleep. However, it also causes significant oxygen deprivation to your brain that apparently can create a lot of serious problems, too.  Of course I still hate the idea of having to wear it, but I'm still looking forward to the possibility that it will help.

Hi Mila,

Good numbers. You will notice your Hb is getting close to the magic 10, when most US doctors seem to have a brain melt-down. Be prepared for the Riba dose reduction talk.

Unless you've got lousy coronary arteries, a Hb of 9 or 10 will not give an increased risk of heart attack. Sorry about the sleep apnea.

Tig, Mila is not on Interferon, and that is why the WBC and platelets have in fact gone up! I've been told in the past that Riba also caused some bone marrow suppression, but this is living proof that's rubbish.

6 weeks & 4 days into tx -- 17 wks 3 days to go!  (New labs with comparisons to previous attached for those interested.)

Dee, you can get through it! You are right that it this treatment is a breeze compared to IFN which I've also done...and you only have 12 weeks AND close to 100% odds in your favor. So, no matter how difficult it seems, just take it a day at a time. It will be worth it!!! 

I have also wondered a bit about the increased risk of heart attack or stroke while being anemic, though, having read something about that. My pulse rate is ALWAYS very high (95-110) and, on occasion, my blood pressure goes from low to suddenly high. Doctors have been very apathetic about this (especially the pulse) in the past but my hepatologist is referring me to a cardiologist...although, they are so booked up that it is going to take at least a month to get in.

I've also just recently been found to have sleep apnea and will be starting on CPAP in a couple of days. Since oxygen is already impaired with anemia, perhaps this is why I feel so absolutely horrific in the mornings?

Cara, ask your doctor about Ambien. I've taken it for years and it works like a charm for me. I don't know how much this concerns most people, but the sleep apnea doctor much prefers Ambien over the benzodiazapams (Xanax, Restoril, etc.) as she told me such drugs can be problematic for other reasons, and also mentioned that they affect anesthesiology. 

The shortness of breath that Wayne mentioned is something I'm experiencing, too, and it feels a bit scary so I'm not walking much and taking it reeeeally slow these days.  I also sometimes feel faint. As mentioned above, mornings are the absolute worst and I've had to literally lie down on the floor after suddenly having a bizarre pins and needles sensation on top of my head and feeling a sort of nausea as if I'm about to pass out. (Perhaps a combo of anemia and sleep apnea issues?)

Enavigo mentioned WATER. Yes! And I find it difficult to drink enough but try because it seems that staying really hydrated helps with all side effects. Like Enavigo, I also get the horrible headaches and "funky eyes" that become blurry and so sensitive to light that I have to turn e turn everything off; there is no way I can be on the computer when feeling like that. 

Itching has only been bad a few times... The skin on my knuckles is a bit "thick" and itchy and my hands and feet seem dry. My nose sometimes itches like crazy, and it feels dry underneath. I have a general sense of numbness, too, though...and occasionally really cold hands and feet despite it being 78 degrees.

I was really hyper the first couple of weeks, and then hyper-irritable! My irritability seems to now be combined with some depression, but then I'm just soooooo tired of not feeling well and it's a bit scary and depressing to live alone with no support to speak of; and, in addition, I have some serious ongoing long-term crazy-family stuff that is very stressful, so it probably wouldn't be normal if I wasn't depressed. However, I'm still managing to keep everything in perspective knowing that the sx are temporary, and remain positive and grateful for the meds!

I really appreciate the sage advice and encouragement from the old timers here. I am so aware that the Riba problems are nothing compared to what some of you went (and are going) through with the IFN. I think I can tolerate the anxiety, headaches, diarrhea,  irritability, and shortness of breath. I worry about having a heart attack or heart failure. I work in health care so I see people with all sorts of conditions--worst cases, really.

I know I'll be monitored by the doctor but as I start to feel worse each day, my worry mounts that I'll suddenly drop dead. I know that's not what typically happens (and I don't have a heart condition), but that's where my mind goes.

Is there a "peak" to the symptoms? Tig, I think you said it probably "won't get any worse than this," but does it tend to stay about the same for the full course of treatment for most people? I was feeling good the first couple weeks, but now that I'm finishing out my 4th week, things are deteriorating...

Dee

Female, age 59, genotype 2b, contracted in 1974 or 1975, diagnosed 1993. Treatment naive, fibrospect 0-1, persistently normal enzymes, started Sovaldi + ribavirin February 1, 2014

For insomnia, I recommend temazepam ("Restoril"). It's a benzodiazapine, so it's a sleep med but also an anti-anxiolytic. It's an older drug and more predictable than Ambien (and not known for the issues with sleep driving, etc.

Thanks to you all for the good input and information!  It really helps to know that we're not going through this alone, and that we have a good support outlet available when we need it. 

Question about the Ambien that was mentioned-- Is this likely something that my GI would be willing to prescribe, since he is aware of the side effects of the Sovaldi & Ribavirin?  My Husband has some pretty bad insomnia issues as is, and I hate to think it may get worse!  Also wondering if anyone has sought a benzo prescription for the anxiety/rage, like Xanax or such?  

As per my usual, I'm already getting ahead of things, but I figure it's better to be prepared!  Im sure you've all heard the saying, "fail to plan, plan to fail?"   

Thanks again everyone!

I'm starting to experience some of the RIBA side effects and trying not to worry. Slightly short of breath, mild headache, a bit anxious. I worry about the anemia, although I only had a drop of 1 from baseline of 13 (12) at 2.5 weeks. Due for my next blood draw end of next week. A part of me is thinking, "I should have waited until the drug combo was out" (no RIBA, just Sovaldi + another protease inhibitor), but I've waited 20 years. I just hope the side effects don't get the better of me. I had steadfastly refused to do IFN all these years (and I could afford to wait, since no evident disease--I'm one of the lucky ones) due to hearing about all the horrific side effects. Hope I can make it through!

Dee

Female, age 59, genotype 2b, contracted in 1974 or 1975, diagnosed 1993. Treatment naive, fibrospect 0-1, persistently normal enzymes, started Sovaldi + ribavirin February 1, 2014

Hi Miss Cara,

I am on day 14 of the same treatment. Unlike RC i'm having no issues getting to sleep. Also as he said the Riba can cause temper/anger issues but it takes a while to accumulate in your body enough to do that (usually). Same with the hemoglobin - as the riba builds up, your HG numbers will likely drop, be sure you're getting your blood work ontime/regularly so the doc can monitor. I have experienced "the itch" which some of us here have compared to an opiate itch (Vicodin, methadone, etc) - where there's nothing on your skin, it just itches. If it gets out of hand ask your doc if you can take benedryl.  My number 1 suggestion while you're on treatment is this: DRINK PLENTY OF WATER!!  I have gotten a few of the headaches that riba can cause and I think I've determined those headaches arrived on days I hadn't drank enough water (I was warned) and for me, they are the worst headaches ever; the head starts, then your eyes get a little funky and real sensitive to light. On those days I just wanted to curl up in a dark and quiet room. You might actually be able to stave them off if you feel one coming on, start chugging that water. It helps for me.

Overall, keep positive - remember there's other people out there like you going through the same things - keep posting and best of luck to you both!

oh and PS - one of the side effects on the insert for the riba is what you explained - similar to a head cold. It will take your body some time to get used to the meds so you may experience something in the first few days you wont the rest of treatment, and vice versa.