Hep C Discussion Forum

Canuck · Guru

RE: side effects

robertsamx · Guru

Wow Mike, That really looks BAD! And you say that doesn't hurt? Your one though guy!! I hope you can get some relief on the compression in your spine. That's a lot of hardware in that there X-RAY. You must be on the NO FLY LIST- Your not getting through TSA at the air-port with that! RC

Canuck · Guru

Hey Jed!

Glad to see ya again! (I love it when you send pictures of yourself!) You don't look as fetching in this one tho, as that last one you sent, when I asked if you really were Jed (I am fondly speaking of that nice one you shared of you smiling on some sunny street somewhere!). All your other pics were, well, rather dark!! This one certainly attests to you being one of those "million" dollar men! We've been missin' every "bit" of you round here (pun intended).

So sorry to hear about the L5 nerve root. Hope everything else is tolerable. Sure glad to hear from ya! smile C.

wmlj1960 · Moderator

Juliet17 wrote:
I have never liked the idea of having a bunch of hardware in my back that's the same stuff you get at Home Depot but marked up about 1,000,000%.

Lol. You are so right. I've been to Home Depot a million times in my life and I see no difference between the hardware I bought there and the hardware they put in my back (image attached). And all the money I spent at Home Depot all these years is a very tiny fraction of what they charged my insurance company for the 8 lag bolts and 2 rods that they put in my back. The good news is that it doesn't cause me any pain - just makes me move like a 'stick-man' Lol. The bad news is that I have an untreated L4-L5 disc extrusion that is compressing the L5 nerve root. I refuse to take pain medication in an attempt to preserve my cirrhotic liver but it's getting to the point that I'm considering letting my surgeon do an epidural or spinal block. This pain wasn't as bad when I was on treatment but I doubt that there is any relation. I did however have more arthritis pain in my joints and in some old traumatic injury sites when I was on treatment which did subside slowly after EOT.

Your outpatient removal of the broken pieces sounds like a very doable solution. Good luck with that. Have a merry Christmas with your family! smile

Tig · Admin

Hey Pablo,

You can't see the brace under the beard!! It helps hide the scars too. There are several. I used to wear my hair long to hide the posterior neck scars, but got tired of all the hair. The days of vanity are gone! biggrin

-- Edited by Tig56 on Wednesday 7th of December 2016 02:00:40 PM

Pablito · Senior Member

That's hard core Tig. Surprised you've enough strength in your neck to hold that beard up!

Tig · Admin

Hey Diana,

If you can resolve your back problems without a fusion and hardware, do it. I fractured my neck two different times and now have 7 vertebrae in my neck and thoracic spine rodded, screwed, fused and plated. I've got enough titanium and stainless in my neck to build a jumbo jet. So many operations, halo device, special braces, I lost count. I can relate and hope you get some relief. Good luck!

There are others that have experienced the arthralgia secondary to treatment in the past and the new DAA's seem to cause or aggravate it in some. So far I have heard from most that it improves. Don't live in misery though. Let your doctor know that these issues started after you started treatment. These are side effects they need to know about. It will help others, as well as providing useful data.

Let us know how things go. I'm very hopeful that this will provide the relief you deserve.

JimmyK · Guru

Greetings.

Take it from an Ole Steel-horse Cowboy.

It would be an honor to pass along that which throughout my life I have found to be true in all cases.

I needed no nor had any advice in the matter, it just came to me and kind of stuck.

"If ya have the need to pee, ya best be about it then."

NEVER failed me to this very evening.

Welcome to The Family.

JimmyK

Juliet17 · Member

Yep, I've had some bad kidney stones, back in the days when my doctor was telling me to take handfuls of calcium supplements all the time. While renal colic isn't fun, I never thought it was as excruciating as some describe it...until that ginormous one decided it would try to venture forth. That thing was over 1-1/2" in diameter! With weird octopus arms. My husband said when the doctor first looked at the scan, he was shaking his head and saying, "shiiiiiiiiiiiiit."

I haven't had one kidney stone since I stopped taking those danger calcium pills. These days I get my calcium from natural sources and make sure I get enough vitamin D.

I've found that my DAA treatment tends to attack my weak points. I have arthritis in one of my thumbs, and for the past few weeks it is gotten horribly swollen and is bent way to the side. It doesn't hurt, fortunately, but it sure looks funny.

The big thing that complicates life is that I have a broken vertebra in my lower back which presses on the nerves to my legs. Hep C reatment has definitely made that all more painful. It was really a bad injury (car accident). I saw an orthopedist who said I needed a fusion with various rods and screws for stabilization. I have never liked the idea of having a bunch of hardware in my back that's the same stuff you get at Home Depot but marked up about 1,000,000%. So I researched spine surgeons and made an appt with the guy who seems the best in the biz around here. And got a much better treatment plan. He said he would generally recommend fusion for 50ish females like me with a wrecked vertebra, but that my spine seems especially healthy and strong otherwise. He's just going to take out the broken piece pressing on nerves and thinks I'll do just fine without a fusion. It's a simple outpatient procedure as opposed to major surgery + a long recovery. Woohoo! I will try to have it done around Christmas when my oldest daughter and her husband are here; they volunteered to help out. I think life will be MUCH better when I can walk without my legs feeling like they have 500lb weights on them.

Sorry for all the rambling....

Canuck · Guru

Hi Juliet,

eeeew, poor you! I've seen pics of those gangley stones you speak of!! Those strange starfish monster concretion things we are capable of growing can sure play havoc in a kidney alright. Renal or ureter stone pain can make the worry, suspicion, or discomfort of a simple UTI or even a short bout of pyelonephritis, pale in comparison!! Renal/ureter pain can be exquisite, often unmistakable in folk who have owned or tried to pass stones and have experience the colic that can go with it. But, even just a good ole irritated bladder/simple UTI is bad enough!, and all is unwanted!! Lucky for some of us that kidneys are one of those organ that can take quite a beating and keep on ticking, and with good treatment and care, has good ability and potential in healing, regenerating/repairing itself, surprisingly really quite well even with pretty marked insults!

Always good to have routine urinalysis's done, especially when you wonder if something is up, even knowing what your ph is or whether you are dip-sticking positive for blood is telling, that something needs one's attention.

Man, you sure have had an unfair share of unfortunate things befall you - but, I firmly believe many health things will start improving for you after SVR.

I have noticed improvements, in various departments, now that I am 3-less! And I am looking forward to seeing how fast, more improvements come to me.

I read your other post tonight and was glad to hear some of these things are, at least, not worsening.

Like Hacker, with his new found bladder symptoms, and you with your kidney history, it's always a good idea to have routine urines done. Glad your discomfort is not quite as noticeable for you now. C.

Juliet17 · Member

Hi Canuck! I have good days and bad days, but for the past couple of days I have not had the sore kidney problem. Progress!
My problem is/was only in my right kidney. Now that I think about it, it could be because 4 years ago I had what's called a "staghorn" stone in that kidney. That's when a stone is so huge that it extends through the inner tubules of the organ. I had the stone broken up and removed; the whole experience was really nasty. Although I had no permanent loss of kidney function, I could understand it getting unhappy if it has to work especially hard!

Canuck · Guru

Hi Juliet,

How are you!! Glad to hear from you, hope all is going a bit better lately?

You are right, about sof (a NS5B), and so many regimes contain sof, and the kidneys do deal with a lions share of excreting metabolised sof. It is not a problem for the kidneys to deal with sof unless you have a marked, graded, diaganosed, known kidney insufficiency. Even if you have a known renal clearance problem, depending on the degree of compromised renal clearance, sof is often still used with no modifictaions. I only know of one fellow here (with his degree of marked diagnosed renal insufficiency) who still was prescribed sof as a drug of choice for him, but in an altered, modified dose regime. In some cases of renal failure, some docs may look to a NS3/4A and a NS5A (such as grazo/elba -"Zepatier") if they decide to avoid sof.

I think it is hard to say (with certainty) what we can attribute urinary tract symptoms to, when it comes to taking these differing regimes, especially if we have historically demonstrated adequate renal clearance/function prior to treatment, during treatment and after. There could be many variables, from person to person, to account for urinary tract symptoms (or many other symptoms we experience during treatment), where one might wonder if it is an effect of the drugs themselves.

It is good you brought your urinary tract symptoms up with your doc, and, that he checked your renal function to ascertain it was good, especially given your particular cryo concerns - but did you actually have a R&M and a C&S done as well?? Just curious - I assume that was done, just routinely. Hopefully, you did not have a UTI, so, I sure hope these urinary symptoms just lessen and stop for you.

I always look to the most common reasons for urinary tract symptoms first. UTI's and such. They should never be overlooked, and need to be ruled in or out, they can be easily fixed, and a UTI is something none of us need during treatment!

Most of us, pre-treatment are routinely assessed to uncover renal insufficiencies, in cases of severe renal disability, sof might be an issue, but generally the biggest side listed for sof is headache, not urinary tract symptoms.

With sof (and many other hep drugs), stands to reason the good advice to keep very well-hydrated. Irritated bladder symptoms/concentrated urine are reeeeal good reasons for upping the water intake.

I have had a life-time of knowing what urinary tract symptoms feel like, I also had my fair share of weird symptoms before AND during treatment, and they surveilled my kidney function before, during and after treatment - all was OK - but, from experience, had I suspected certain UTI signs, I would have immediately asked for a R&M/C&S.

Do let us know how things have been going for you! I hope some better. smile C.

Syd, You kill me, you can always make me laugh - what with your old bladder bag curled up in storage below the pelvic floor, and my ancient hidden kidney hanging out in the basement - between us, we are quite the saggy pair!! Hee hee

Juliet17 · Member

Hi, about four weeks into my treatment with Sovaldi/Daklinza I began to notice a feeling like I was developing a UTI or a minor kidney stone. I felt like I had to pee more often, and my middle back (kidney region) developed a dull ache. My blood work showed that my creatinine level was one point higher than normal. My doc retested a few days later and my creatinine was back to normal. But I still had the same symptoms.

I was told that certain DAA's, including Viekira and Sovaldi, are cleared through the kidneys and therefore require those organs to work harder than normal. Presumably that is the cause of my mild symptoms, which still come and go but don't get any worse. Perhaps that's what's happening to you as well.

Ruby Red · Senior Member

Hello Hacker

Welcome smile You will find this not only a friendly and caring group of folks but an informative bunch to boot!!

Ruby

Sydhanrahan · Guru

Hi Hacker,

i haven't heard of continence problems related to either of those drugs. If you are drinking more water, it is probably related to that.

Agree too that you need to have your pee tested. I get a lot of UTIs - I don't think my bladder has so much prolapsed after four children - it has more rolled over, decided far too much has been expected of one little bag, and coiled up somewhere around the pelvic floor I used to have. Anyway back to the UTI stuff, I don't get pain but I do get that sudden urge to go. Since Ribaviron subdues the immuno system it makes sense that that's what it is.

Let us know how you go.

Cheers,

Syd

Trudylookinglass · Member

Hacker!
So weird you say that because ever since my treatment- I have had the exact same thing!
I'm post treatment 11weeks but the problem remains.
I have always had a small bladder but this is Crayzeeeee!
My doc said it's probably a mildly prolapsed bladder but I had 2 consecutive pregnancies 15 yrs ago and am 48.9 yrs old.
It's all relative: age, history of carrying heavy objects etc
My doctor suggested working on core muscles. Yoga
Not helping
Keep posting if you find any answers

Cinnamon Girl · Guru

HI there, Hacker, just wanted to say hello and welcome to the forum, I`m glad you found us.

I agree with what Tig and Canuck have said, that what you`re experiencing isn`t necessarily a side effect as such from the treatment you`re taking, but of course if you`re drinking a lot of water that will make you need to pee a lot. Drinking lots of water is the right thing to do with these medications, so don`t stop!

On the other hand there could be something else going on, maybe an infection, so it would be a good idea to get it checked out. You really don`t need any additional problems going on while you`re on these medications. Your GP could test for an infection, or you could talk to your treatment nurse or doctor if you`re due for an appointment soon.

Some more information would be very helpful, for example are you getting any pain on urination or is it more a case of frequently needing to go? Also, how long have you been on treatment? Quite often people notice changes or side effects during the first 2 or 3 weeks which then settle down as your body adjusts.

Best of luck, do keep in touch! smile

(Ps - I noticed you`d made duplicate posts asking about your side effects, so I`ve joined 2 of your `threads` together so that we can keep all the replies to your question in the same place.)

Canuck · Guru

Hi Hacker,

Sorry to hear of your bladder symptoms.

How long have you been on the Viekira with riba?? And how long have you been having these bladder symptoms?? Are you drinking LOTS of water?? - I hope so.

Without knowing more ... I would say ... try to get to your hep doc (or his nurse) right away, or failing that, to ANY doc, for a quick visit, just to get your urine tested for bladder infection. Get a quick appointment to get a sterile urine sample bottle and provide a sample to them (or, to the lab they direct you to), ASAP. You should have a "routine microscopic" (R&M) exam of your urine, as well as a culture and sensitivity (C&S) - this will help to rule out a common but unfortunate urinary track infection (UTI), which can happen to anyone, but might also be a plausible reason for the urinary symptoms you are describing. (Urgency, feelings of bladder irritation, frequency and or burning can all be symptoms of a UTI).

If you have to get the requisition for the R&M and C&S urine sample from some other doc or clinic, then be sure to ask for copies of the the urine results to be sent to your hep c doc as well, (STAT) ASAP.

Get a common UTI ruled out, ASAP. If you do have a UTI, then, with the results being at your hep docs office right away, he can prescribe the specific antibiotics he chooses for you.

Until you get a UTI ruled in, or out - keep flushing your body and "water-works" by drinking lots of water.

That's all I can suggest at this point. But don't wait on it, call or present yourself, get it checked out, and tested as they direct. How are you doing otherwise?? C.

Tig · Admin

Hi Hacker,

Welcome to the forum. I missed your first post regarding the weak bladder. Can you tell us a little history? How long have you been on treatment? If you can add some info to your signature line, we can get a better understanding of your situation. There are instructions to help you set it up at the bottom of mine.

If you're hydrating properly, which is about a gallon per day if you're doing it right, you'll be urinating much more often. Staying hydrated while on treatment is vital. Anemia doesn't typically cause increased urination, so I'm not convinced that's why you're experiencing this. How much water are you drinking per day? How much before bedtime? Is it a problem during the night? Staying adequately hydrated will reduce the side effects significantly. If you are having urinary tract problems and concerned, don't hesitate to make a call to the doctor.

Since you're also on Ribavirin, you're probably having some additional side effects from it. It's effective, but it delivers it's own set of side effects. How are you feeling otherwise? We can offer some help if you'd like to share any issues you may have. Do you have any recent lab tests? Tell us what you're comfortable sharing. It helps us when replying.

Hope to hear back from you! Good luck...

Hacker · Newbie

anybody else experienced bladder problems - as in constantly feeling a need to pee - while taking Viekirax/Ribavirin? really driving me crazy!!!! I think it may be connected to anemia

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