Hep C Discussion Forum

nathanW · Member

RE: Finished mavyret 5 weeks ago, having issues

Tig · Admin

Hi Nathan,

Actually the half life of both Sofosbuvir and Velpatasvir is more like a few days, tops. In a single week, you’ll be free and clear of the medication(s). Sofosbuvir is first to go, it’s lost through the kidneys quite fast, and the Velpa is plasma bound and is removed by the liver and kidney to some degree. Still, they are both cleared rather quickly. For those poor folks that had to suffer through Ribavirin, that stuff took 6 months!

nathanW · Member

hi mate yes i'm going threw the EPCLUSA medication and get rashy also my doc prescribed me with a steroid cream and that has helped with the rash like 100% . its called cortival 1/2 cream . (betamethasone valerate 500 microgram/g.

it generally flares up 5 hours after i take my med's but it decreasing a lot , i first came up with a welty rash but that has now gone .

I remember the nurse telling me something about the medications half life once finishing my med's , one portion of EPCLUSA has a half life of like 30 odd days , so i am guessing a few more weeks after that it'd be totally out of my system .

not saying this is your sollution but something you can think about .

hope that helps .

Canuck · Guru

Good for you James, to keep on it, glad you got a doc to order you a scan (what KIND of scan is it supposed to be exactly) other than it might have a look at your GB ? - a general abdominal U/S?, or was the test to be a more specifc GB related imaging, or what? I am assuming it would probably be an abdominal ultrasound, as i think you said you did not even get a basic abd. U/S done pre-treatment. (I wish they would just do U/S's on everyone pre-treatment, then we all have a nice "before", to compare back to in future, to look for any obvious changes).

Good you went ahead and decided to get your own VL done earlier than was planned - that will only help reassure you that you do NOT have a virus problem, but likely have some other things that have been plaguing you, along with your poor old body and soul recovering from the aftermath of a hepc infection and the ardours of going through treatment. hm, that's too bad, if they make you pay extra for that one.

Too bad you had to have all these irksome, concerning symptoms happen right now, right after your cure, it would certainly bother anyone, what with with all you have had - the funny colored stools/urine, pruritis, etc. But you are doing a good job about getting down to the bottom of it, and if nothing out of the ordinary is found in your "imaging" (whatever specific imaging that is), i am still hoping that just over some more time all these symptoms you unfortunately experienced, are just going to simply fade away. That is what I am holding out for, and hoping and wish for. I hope they don;t find anything wrong with your GB. Maybe you just had a spell of a grumbling GB, which will grow good and quiet now? Who knows? but between your good efforts and over time, we shall see what the cause(s) were of this worry and strife for you.

I am glad the itching is only periodic now. At least that is something in the right directon, same for the funny colored urines and stools, they had lessened too, right?

5 was asking (previously) what you were using for your itchy skin. But, fast forward to now, I too am wondering if you are still sometimes taking antihistamines if and when required?, and, which were the antihistamines the doc said to take?. Had he prescribed any kind of skin ointment as well?

Please do keep us posted. smile C.

Tig · Admin

Hey James,

Good to hear from you Brother! Been wondering how you're coming along. It sounds like you're making slow, but steady progress and that's good in my opinion. We sometimes have overnight successes, and more often than not, we have slow, but continued progress and we have to be happy with every step forward. I know you're sounding more upbeat and that makes me smile, bro! You keep trying and I'll keep smiling, that's how we roll around here!

Do keep us updated on your bloodwork coming up. I know how that can bring anxiety to the forefront, but with your EOT undetected VL and those great LFT's, I don't think you have anything to worry about. Just keep working for the things you desire and they will happen. I've seen it and want you to believe it! It's time to exude confidence, let it roll from you. When you have total belief in your success, success follows, trust me!

We'll be waiting....

SeeTheLight · Senior Member

So pleased you are getting somewhere James. Here's hoping the bloods at rest and the other testing puts your mind at rest. Try not to worry!!!!

5-1-18 · Guru

this is good news today james, thankyou

james_mc85 · Member

Thanks for the concern Iris i am no longer homless, sorry if my message wasnt clear, that was years ago now thankfully.

Update

Thought i would pop in and let everyone know how i am getting on since i havent posted in a few weeks. The itchy skin problem seems to have cleared up, have an odd day when it comes back a little but i think its finally starting to settle down. I went to the doctors again as im convinced something is going on inside and finally i am being sent for a scan to check my gallbladder etc as the urine still seems dark and stool colour comes and goes also, so thats a relief that i will find out if anything is going on with that.

I have also booked a private Hep C RNA test and will go to get my bloods took this week, just need to book an appointment then post my sample back to the lab and i should hear sometime next week. Really anxious about this and im hoping that i am still undetected and will be overjoyed if so, the not knowing is really causing me a lot of anxiety, i couldnt wait until half way through September when i would get my results from the NHS bloods that will be took on the 3rd September. At least i will be able to rule in or out if its the virus causing the symptoms

5-1-18 · Guru

james are you trying various anti-itch lotions? some with cortisone for the worst spots, and some without for the rest of you.

i hope everything feels better soon.... i'm so glad you did the treatment.

hey, i just talked to someone who quit smoking and it was already a 3 week withdrawal , so it's going on with others in various ways too.

5

5-1-18 · Guru

i never have bad friday the 13th's. but last nite after midnite i had a migraine..... with the full on visual's.

scared the crap out of me! i never had one before. i had the aura first and thot i was losing my sight- i did deep breathing and relaxation then realized it might just be that infamous migraine i've heard about from others.

within 20 min. my vision was coming back to normal and i statred getting a small headache at the top of my head and in the sinus area.

of course my boss sent me home , i took advil and the pain slowly went away. today i called in due to feeling woozy and so very tired blankstare , along with sinus pressure.

i'm off my meds 2weeks and 5 days. ...

it could well be sinus cos that is what is bothering me the most; so will check with doc this week if it doesn't get better; or the 25th.

seriously tho, i hope that never happens again

it has been stressful at work the last week, and of course last nite i read that migraine can be related to gallbladder/liver as well as other things confuse

maybe some of what we are feeling after the drugs is somehow related to healing everything all up , or the residue of the strong meds. hopefull in time we'll be shouting "i'm free and i feel good!"

-- Edited by 5-1-18 on Saturday 14th of July 2018 08:19:13 PM

Iris Dragonfly · Guru

I can relate. Perhaps it was in the stars, yesterday was bad for several people I know, myself included. Crazy drug/alcohol families do suck us in and down. I hope you find a place to call home very soon.
Blessings, Iris

james_mc85 · Member

Hi Canuck, no problems romp away. Thanks for the advice, I'm feeling better today mentally, yesterday was a dark day for me. Its nice to know you can come somewhere like this and have people know where you are coming from

Canuck · Guru

Hey willbb!!

Well! Hello again! Glad you dropped in once more.

(Sorry James) I have to tromp over your thread just to greet our returning willbb, as he has no thread of his own (it would seem) - I am glad you are writing again willbb, as I am hoping you will read this, because, as i mentioned before (repeatedly), I can find NO history on you, no threads of your own, nor have you responded to our repeated prompts to properly, formally or even informally introduce yourself to everyone and perhaps be generous enough to share some pertinent info about yourself with all of us who generally wear our colors on our sleeves for all to see. You seem to like to drop in and offer advice, which seems a kind thing to do, and as good or bad, helpful or not helpful as your advice or opinons may be, I still do think it kind of curious (almost weird now as time goes on) that you STILL cannot share anything personal about yourself, your history, your health, your experience with hepc, what treatment or treatments you may have had, actually ANY tidbit of personal info about you which has not been forthcoming. Why are you being so mysterious? - you sound like you are a interesting and perhaps learned person, why not share something of yourself, aside from an opinion? We are generally a friendly bunch here. Technically you are a newbie, newcomer, new member with no hx, signature line or bio, so, i don't want to scare you or any newbie like you away, but it would be so much more rewarding to feel like we know you a bit while reading your scoop in and out, now and again, opinion posts. Let try some conversation, on any topic - were are an open and willing bunch around here. Hope you take the time and effort to create a hx, bio and signature line, share a bit about yourself and join us! confuse C. PS - I am surprized you did NOT read through James's thread before you offered an opinion - jes sayin. wink

Back to you James - hey, good job on your signature line BTW - meant to mention that to you earlier. smile C.

willbb · Member

Hello James,

It seems you have been given good advice here in regards to keeping at the doctor in regards to the itching.

Pruritits(fancy name for itching) can be so very annoying and be caused by a wide variety of things.

Some as simple as high Blood pressure and also a underactive thyroid.(hypothyroid)

Not having read your thread here, you may have had these checked ,however if not these are simple tests that can be done.

Just a thought.

Stay at your health care providers on this.

Good luck

Canuck · Guru

Hi James,

I hear your frustration.

Even if your nurse had not interfered and let you have another blood draw, the results may not have resolved anything for you - some of your curiosities (that have befallen you since your HCV cure) may have still been experienced, and your bood results may have still appeared to be fairly normal, offering no real tangible clues as to what is causing these symptoms in you.

I think unfortunately, that time is going to be the telling, in this one - too bad the antihistamines do not seem to be holding you - pruritis, and lack of sleep from same, most defininitly is an unwanted thing right now, when you are under worry and stress.

I STILL DO NOT believe you are having ANY kind of relapse issue - I hope you are able to put that one partly to bed by now (your fear of relapse), in seeing your consistantly good LFT's. Soon enough you will be having your VL drawn for SVR12, where it will be proven to you again, that you are UND.

You may have some blood/bodily/liver issues going on, but they may be a passing thing, are going to resolve on their own given a bit more time.

Had I been your nurse i would have wasted the time and money on doing the bloodtests the doc had origianlly ordered for you, even if she and (another) thought it too early, too expensive, redundant or futile in effort - it might have at least comforted you to know your missing AST was also in the normal range as well as your other LFT's.

I do wonder what bloods the doc DID order for you (before the nurse) kiboshed them, just the missing AST?

Go again to the doc if you are itching and distressed, and express your dissappointment about the blood tests the prior doc ordered being halted at the last minute - express your worry/ frustrations and dissapointment that you have no further possible explanations for why you are feeling what you are feeling. Ask again for some further blood tests to be done and for an ultrasound to make sure your gall bladder and other abdominal organs do not display something obvious as a possible explanation.

There can be reasons for high hgb and hct., but, just remember a high count on those can be caused by something as simple as being dehydrated at that blood draw!

Hang in there, go see the doc again with your pruritis and stress if you need to - keep drinking the lots of water, are you still getting any dark urine or funny stools despite a consistant 3-4 litlres of water per day? C.

james_mc85 · Member

Hello everyone. Really unhappy at the minute. Coming from a violent, drug, alcohol family and then being homeless to then having hep c all this is really starting to wear on me now, thinking that one day I would get treated with new drugs kept me sane but now I'm feeling worse than before. The constant itching keeps coming back which goes away with antihistamines but what's actually causing it no one in my doctors seems to want to know or care.

I went for bloods yesterday because the doctor called and said I had to get them checked again, the nurse said there's no point doing them again as it's only a little bit over and would still likely be over so would be best to check in a months time since the last blood draw, she went and asked the doctor (different doc) from phone call and she agreed so I went for nothing. While i agree the haemoglobin etc arent over too much i just want to know what it causing the constant itching which has been for over a month now. Sorry for the rant everyone :(

Got results for last blood test:

ALT 17 up 4

Bilirubin 16 up 4

Alkaline phosphate 94 down 3

Albumin 53 up 3 range 50 - abnormal

Haemoglobin - 174 range - 150 - 170

Red Cell count - 5.55 range - 4.50 - 5.50

Haematocrit - 0.520 range - 0.400 - 0.500

-- Edited by james_mc85 on Friday 13th of July 2018 05:14:26 PM

-- Edited by james_mc85 on Friday 13th of July 2018 07:07:09 PM

Tig · Admin

Hi James,

A high hemoglobin level isn’t typically something we see with HCV. Quite the opposite most often, secondary to some of the older treatments in particular. I wouldn’t get ahead of yourself until they repeat the tests. Sounds to me like somebody goofed up the sample. The AST enzyme is released by muscle/organ groups, the ALT is liver specific. When it’s elevated, they look at liver causation. With that stellar number, theres no inflammation going on.

How is the itching following the antihistamines? I itch all the time, sometimes it happens for a number of reasons. Heat, environmental factors, too many to count. I wouldn’t count one of them as relapse though. I believe that should be the last on your list. I want you to consider stress and anxiety among the highest. I can attest to worry being among the biggest culprits in things like that. It happens to me when I get worried. It’s a clear indicator for me to examine what’s happening to me and those around me. Very often I find something that has been really worrying me, often times not even realizing it. Whatever the reason, James, you’re on top of it and whatever is happening, will be resolved by your dogged investigation. It’ll work itself out, I’m sure of it!

5-1-18 · Guru

hi james, before tx my iron was somewhat high and the doc said it wasn't a worry. also my b12 was low. and they don't test all that on me till oct.

soon i'll get my afp and ultrasound....i'm hoping the virus took the galstones with it

i guess this might be just part of the liver trying to work well under such strained conditions.

i hope it is the same for you....... cured but still healing is where we are at now. and our liver has gone thru so much and now is pulling itself together as our immune system is working over time to make things well again.

faith and trust that this is our path to wellness is our main focus now.

hope you can relax a bit for now. 5

james_mc85 · Member

Hi Tig, Canuck and 5-1-18, thanks for the replies and support.

He didnt say what the normal range for the hemoglobin was and i didnt ask as my head was thinking what is this new problem, then i went on to ask about the AST and ALT.

Has anyone else suffered from high hemoglobin after treatment. I read that too much iron can cause itching and other nasty problems and its also pretty common with hep c.

tried to add you sig Canuck but it was too long so took of the last bit so i could fit it in :)

-- Edited by james_mc85 on Tuesday 10th of July 2018 06:14:14 PM

Canuck · Guru

Don't worry about the missing AST, it will be re-done - that has happened to me before too, (and other folk) - a sample that is not in good enough condition to derive a viable result from - it will be re-done, sooner than later if it is a pertinent one - and in your case they likely will make you re-draw the AST - BUT (regardless) the ALT looks REALLY good, likely your AST may be good as well, but we will wait and see what the AST ends up being, in all likelihood both your ALT and AST may still be within normal limits (such as theyhave been since your UND at EOT)! Your bili (if you are relaying a "total" bili) looks to be within normal limits at 16, but you need to confirm it is a "total" bili and what your lab consider normal - at my lab a normal "total" bili can range up to 21 umol/L. You will have to wait for the bloods to be re-drawn and ask again what your docs opinion is of all this, (your symptoms) and you labs - I still say it is NOT relapse, you have had some symptoms (worrisome and bothersome to you) but it is something else, other than relapse IMO. How high is a high hgb?, maybe some of your "additional" tests will be for (?) ... who knows what! - They may be doing just the missing AST or, they could be doing anything - iron, ferritin, iron saturation levels on you - you just never know what your doc may have ordered for tests. You can't be guessing based on all this extremely limited info - wait until your further lab results are back and your doc expresses an opinion. In the meanwhile, good the funny colored stools are letting up, or are on and off again, good you responded to antihistamines and the pruritis is less, good the color of your urine is/has been lighter.

This whole thing may have been a passing worry, but ... it's good to be cautious and careful and on it. Taking care of yourself is a good thing.

You need a sig line, I have added a bit to the suggested one I drafted up for you earlier. When you have time you could make a sig. line, it would help make discussions easier, to be able to refer to your labs without having to search for them. : )

... Try to do up a signature line - it will make conversing easier all around (something like this) ...

Male, Age 32, GT3 (a or b?) since possibly/aprox. 10 years ago, Pre-treatment ALT 62, AST 30, ALP 60, Bili 13, Fibroscan 5.4 kPa's, VL 10,800 IU/mL. Rx Mavyret 8 weeks, SOT April ? to EOT May ? , 2018. EOT VL = UND ... EOT+2 week ALT 13, AST 20, ALP 97, Bili 12. EOT+6 weeks? ALT 17, Bili 16, no AST avaialbale, all LFT's appear normal?

But if you do have other labs, tests or info you could add, you certainly could put in whatever you want to this example sig. line.

Did you ask your doc for an abdominal ultrasound? I can't remember right now, off hand (without searching through the whole of your thread again whether you said you ever did, or did not have an U/S before, an ultrasound (now) in any case would not be unreasonable, given your complaints, just as a "rule out anything obvious" tactic. C.

5-1-18 · Guru

james i'm so glad that you stuck with this and are getting the medical attention you deserve.

james_mc85 · Member

I got a call from the doctors reception today saying the doctor would call me to speak about my blood results. I was anxious to say the least. The doctor called me and said that my hemoglobin is high and I need to go back in for more bloods on Thursday. He said my other liver results looked fine. He didn't have my AST as they couldn't determine it because the cells had broke down? ALT was 17 Bilirubin was 16

Tig · Admin

Good to know she prescribed the antihistamines. Hopefully they will provide some relief. I doubt you have relapsed, that’s extremely rare after SVR. Less than .5% of people achieving SVR relapse and that’s still uncommon. Let us know what your next LFT’s are. Don’t overthink this!

james_mc85 · Member

Thought i would let everyone know how i got on at the docs on Friday. I got my urine tested and doctor said there was no bile salts found in my urine. Told her about the extreme itching and she prescribed me some antihistamines which have helped with the itch. My urine has been a bit better recently and not as dark and i had ?normal coloured poops the past 2 days (which i was ecstatic about)

She took some more bloods and did another LFT, i will find out the results to this tomorrow or Wednesday. I am hoping beyond hope that these comes back as good as before.

If my ALT, AST etc is raised does this mean the virus is back?

Hope everyone is good and enjoying life

-- Edited by james_mc85 on Monday 9th of July 2018 06:30:07 PM

Canuck · Guru

Yep, that's what I said previously too Tig. "Have samples, will travel"! - give the doc your urine and stool samples and ask for an abdominal ultrasound. An U/S might shine more light on your GB or bowels. Ask for more lab testing to be done to determine reasons for your symptoms. Keep asking for full copies of all your past records, so you can verify all test results done and what tests they did do for hep A/B.

I still highly doubt you have failed Mav. That is not the likely explanation in my book. C.

Tig · Admin

James,

Have you been tested for Hepatitis A? That can cause some of your symptoms as well. With the Alk Phos elevation and your symptoms, I would order an abdominal ultrasound and get a look at your gall bladder and biliary ducts. Cholecystitis (GB inflammation) can come and go, when it is acute and non stop, surgery is often required to remove it. That happened to me. I didn’t have stones, but did have a GB that would fill and not drain when necessary. I had terrible and intermittent pain up until it was no longer intermittent! I had laparoscopic removal to resolve it. You have to grab your doctor tomorrow and demand some further testing. Don’t let him/her out of the room until you get some help. Take a brown urine sample in a clear container with you and show them! If they want some pale poo, give them a baggie full of it, too. Go after it man!

james_mc85 · Member

Hi canuck. No I don't have any rash or hives, although it's odd, now and again I get this white bump on my forearm that gets really itchy then disappears after a while and I dont see it again for ages, although I had this before treatment.

I didn't have the itching when I went to the docs on the 13th of June i was there for my dark urine and stools. The itching has only started the last few weeks and the first week it was only for a few days then went away, came back for a few days, but this week I've had it all week.

Regarding feeling better because I've my lft results, that little voice in my head is now saying the virus hadnt really got started yet and that's why my lft was still low and now the itching is here it's a sign that its getting back to strength ( I hate that voice) I'm a worrier but how can you not be knowing what we've had.

Sometimes my stools are loose and sometimes they are normal shaped, i usually go once or twice a day and always within half an hour of waking up. The colour of the stools has been the same since I started mavyret, very light, I try tell myself that maybe it's not the virus if it was happening during the mavyret and still happening during my undetected result. No pain during BM's, the only pain i get which was more frequent on the mav is in at my ribs on the right hand side, sometimes dull ache sometimes quite stabbing pain.I find myself being envious when I go into a public bathroom and see people's nice clear urine in the pan, it's totally pathetic :(

I was thinking gallstones but if that was the case would my bilirubin be increased

-- Edited by james_mc85 on Thursday 5th of July 2018 03:09:41 PM

-- Edited by james_mc85 on Thursday 5th of July 2018 03:11:40 PM

-- Edited by james_mc85 on Thursday 5th of July 2018 03:12:31 PM

-- Edited by james_mc85 on Thursday 5th of July 2018 03:23:02 PM

Canuck · Guru

Feel for ya James.

Are you exhibiting skin redness, hives or a rash? Or, have you already scratched yourself raw so you don;t know what may be rash or is now just self-excoriation?

Agree Tig, self-defense time for the skin/pruritis. If your skin is intact ... an occasional cool oatmeal bath, judicial cool oatmeal poultices on select (the worst) skin itching areas, use of calomine lotion (alternately OTC hydrocortisone ointment) to the worst itching areas (whatever relieves the itching best), no soaps/hot water on skin, infrequent bathing except for necessity and comfort, cool cotton clothing, experimental use of OTC antihistamines - a pharmacist should be able to advise on anything OTC, double/triple rinsing of laundry so as to minimize any contact with possible detergent/laundry product sensitivities.

I thought I had it bad at my busy hep clinic, the NHS system sounds .... well, not good. I think I had more continuity and help than what you are experiencing! I cringe at the thought though, if I had not been successful in chasing down my seat in a trial, and been forced to go through a standard public treatment, versus the preemo trial drugs and lab protocols I got instead!

Are you now feeling less like you have relapsed, and are now feeling more like you are suffering with these symptoms instead? Did seeing your EOT+2 week lovely ALT/LFT's reassure you, at all, about your continued good labs 2 weeks after your EOT UND?

It would be good to have consistancy, continuity, same docs to follow you through (from pre-treatment to post and on, and through this current bit too), but "in a pinch" when dire need arises, any doc will do - if you have to deal with some "immediate need" and you cannot get to your own doc(s) in a timely fashion, or get their full attention, then you could avail yourself on any doc (doc shop) if need be - here (if you are in a big city) people can usually find an alternate doc for advice, in a pinch, at a free walk-in clinic.

How loose/frequent are your BM's - is it persistantly yellowy-orange all the time, or does it come and go? Are you suffering lower abdominal pains/cramps with these BM's? Do you feel like you have a flu or fever, have nausea? Are you eating OK, do you have extreme weakness?

Keep on trying to figure out how best to get some good ongoing medical advice/assistance and access to your full records. Ask for an ultrasound next time you are in front of a doc, and, you should be presenting yourself again with this stool/urine color thing, and the pruritis thing in seeking resolution for it. C.

Tig · Admin

Hi James,

Sorry you aren’t able to find a doctor to spend more than a few minutes with you and the same one for that matter. Do you have a GP you can count on? Certainly a few tests are in order, just to rule out various things. As was mentioned, you may be experiencing the end game of the damage and various Hep C manifestations. Perhaps with proper diet, hydration and some attention to your lifestyle choices (clothing, detergent, spices, OTC medications, etc.) you may find out the culprit and witness improvements. It’s hard to nail down. All we can do is provide some thoughts and opinions. I’m sure this is more than aggravating for you.

Have you tried an antihistamine? If you are able to take one, something like Benadryl or Zyrtec may provide some relief from the itching. Benadryl can make you drowsy, Zyrtec doesn’t have that effect. Both are worth investigating. Ask during your next appointment.

Also, I would change your laundry detergent to something without dyes and is recommended for people with sensitivities. Then wash all of your clothes and linens, again. It’s worth a shot.

I think the way your GFR was written, showed they recognized anything >60 was normal and yours was. I think yours is okay, not to worry. Since all of your tests look good, you should start looking for other causes. jmo...

james_mc85 · Member

Hi canuck, I imagine my pre treatment labs would have been more extensive but that was all the nurse wrote down for me, I didn't receive a printed out copy and she was just wanting to get rid of me so probably only wrote down a few things I don't know if they tested for hep a/b. I have been immunised for hep b but this wasn't at the hospital.

I've never had an ultrasound, they only test like that I have had is the fibroscan.

My diet is pretty good, I don't eat any processed sugar and eat a lot of fruit and vegetables.

My GP didn't say much really, just said he would order the liver tests and that was it, in and out. They have such a high workload they really only see you for a few minutes. There is constantly new doctors at the surgery and I have seen five different doctors in my time there and you never know who you will get so it's hard to build a relationship and have a doctor who knows your history. They certainly don't have the time to sit and go through all your notes.

I have a new appointment for Friday as the itching is driving me up the wall and stopping me from sleeping.

-- Edited by james_mc85 on Wednesday 4th of July 2018 07:59:06 AM

Canuck · Guru

hahahah, see what happens when I write when I am tired?! I read your first post, and noted your fibroscan result of 5.4 kPa's, i even go on to include it in a mock-up sig. line for you, then ... I turn around (asleep) and ask you later if you haven't had a fibroscan and ultrasound! heehee. Oh dear.

Regardless, I was still wondering about the ultrasound or any imaging you may have had done, just to rule out any obvious notes regarding your GB.

And if that is all they did on you for labs/tests for your pre-treatment work-up, well I would be surprised, or a bit dissappointed! The Hep A/B assessment should have been done, U/S is a wise thing to have done, and there are many other bloods aside from what you posted here that could have been done during your assessment period - from CBC's, fibrosis tests, GGT to AFP. There may be more pre-treatment tests they did do, than shown here.

So, that is good, to see what lab results you do have (as limited as they are, they are still telling) - the EOT+2 week labs (LFT's) do not support your original query/thought/worry that you were "relapsing" - your ALT is normal (lovely) - be glad that your 2 week post labs/LFT's all appear to be within normal limits. (These are the labs the receptionist said the doc would not be requiring any follow-up with you on, right?) This still does not mean you cannot go in and see the doc again to discuss these labs and your ongoing symptoms.

What did the doc say to you (about your symptoms), at the time you went to that appointment with him, and he ordered those EOT+2 weeks LFT's and labs?

I hope you are not (now) so much worried about "relapse", now that you see the good LFT's 2 weeks after your good UND at EOT. smile

Even if your GFR results appear to be written in a confusing way, (I can only assume the result is 60) 60 is not bad, nor are any of the labs bad, the change in albumin is minor and still within limit.

You are still worried and perplexed by your unexplained dark urine, light stools, pruritis and fatigue tho. So, as Tig suggested you can experiment with testing out what a full 4 litres of water per day does to dilute your urine color. The fatigue may be just part and parcel of what we could all experience, with having, doing war with, and beating HCV. Additionally and perhaps just simply seperately, there may well be some allergic type or a reaction/response thing going on with you to explain your fluctuating pruritis. Like i said before, I (and others) have experienced ongoing pruritis issues after cure for various reasons, it would not be a completely unusual event to occur to a person (but perhaps, in you, it is just a not-yet-explained event). Do have a gander at what you are taking into your body to see if anything is adding up that could be causing these symptoms in you, like 5 suggested ... something you may be reacting to with pruritis, and what dharmabum suggested ... diet/carotene overload showing in your stools? Possible culprits to rule out.

Good guessing (those possible culprits were), as was wondering about what your bili's were, (high AST, with hi bili and hi Alk. Phos, all spiking at the same time) would have had us wondering more about your GB. But, even with your small increase in alk. phos, your alk phos is very much within normal limits. A large increase (over normal limits) in one's alk phos could be an indicator of something gone awry with an organ (usually, in genral a major organ), but your alk. phos is good and well within normal limts. So your labs do not really shine any obvious light on your questions (except that your labs DO support that you have NOT relapsed). Be glad your labs appear so good! smile

Bowel problems (of many sorts) are also common in people with HCV, everything from chronic constipation to various forms of colitis. Your yellowy/orangey stool reminded me of a sick baby I tried to help take care of once - poor little thing was quite weak and wasted and working hard to get better, she had a "sprue"/celiac/malabsorbtion thing going on in her bowels, she had loose yellowy-orange foul stools. She got better eventually, but I remember her Mom had to be so careful with feeding her so frequently with tiny amounts of formula at a time and the fats were not well tolerated.

We can only guess at why your stools are yellowy orange, and why you have these other itching and fatigue symptoms as well, all at the same time. Why not make a docs appointment, collect up a fresh urine and a stool sample, and take them with you, to show the doc and to discuss all of these symptoms again? confuse C.

Observer · Guru

HeyJames,

I still suffer from random rashes..and I have been HCV free/cured for 2.5 years...

I was very sick with HCV for the full 32 years that I had it, and I had developed many severe allergies and ongoing issues with my immune system...skin rashes (hives) being one of the most annoying ones...

the skin is a detoxing organ so you are probably detoxing something...make sure you are avoiding chemicals, perfumed body products, laundry soaps etc.

I hope you and your Dr get to the root of the dark urine and light stool.

A

-- Edited by Observer on Wednesday 4th of July 2018 04:47:19 AM

5-1-18 · Guru

james, are you taking any other meds, otc or prescribed?

sometimes claritin gives me a leg rash

good luck with your investigation, and yea ,def see the doc.

i'm so glad you had the nice easy guy to see this time, maybe check his hours to be sure that is when you go

5

dharmabum · Senior Member

Hi James,

I went through Harvoni treatment a few years ago when it was a new treatment, and I remember how stressful it all was. I feel your pain...

It is very possible that medication or eating certain foods can affect your poop color, ugh. For me, it was carrot juice, and lots of it. Try this link - it may put your mind at ease.

https://www.medicalnewstoday.com/articles/319464.php

I've been there, don that,

Take care,

Joann

james_mc85 · Member

Hi Tig i dont understand it myself, my pee is like an amber colour and often very foamy and my stools are usually an orange - golden colour (sorry :) with that and the itching i dont know why i would have this if my bilirubin was normal. Does my estimated GFR >60 mean its greater than 60 and could be any number. I was worrying it was only 60 and my Kidneys were going down

Tig wrote:
Hey James,
Interesting. Im a bit baffled by your symptoms and these lab results. I thought youd show signs of an elevated bilirubin. I would discuss your symptoms with the doctor that is most considerate of your situation. The issues you describe sound associated with the issue I described, but Im not your doctor or nurse and cant make that call. If you continue to experience these problems, you need to stay on your healthcare provider.

james_mc85 · Member

Hi Tig i dont understand it myself, my pee is like an amber colour and often very foamy and my stools are usually an orange - golden colour (sorry :) with that and the itching i dont know why i would have this if my bilirubin was normal.

Does my estomated GFR >60 mean its greater than 60 and could be any number. I was worrying it was only 60 and my Kidneys were going down

Tig · Admin

Hey James,

Interesting. I‘m a bit baffled by your symptoms and these lab results. I thought you’d show signs of an elevated bilirubin. I would discuss your symptoms with the doctor that is most considerate of your situation. The issues you describe sound associated with the issue I described, but I’m not your doctor or nurse and can’t make that call. If you continue to experience these problems, you need to stay on your healthcare provider.

Canuck · Guru

Ah, James, I see our posts crossed in the mail ... good for you ... to go back and get the results! I am about to dive into them now. smile C.

Canuck · Guru

Here, try this one as well ... https://www.nhs.uk/NHSEngland/thenhs/records/healthrecords/Pages/what_to_do.aspx (or, perhaps contact an association, like the HepC Trust for assistance/trouble shooting access - http://www.hepctrust.org.uk/ ) if you continue having trouble getting copies of your own labs and records of tests and such. It may be as simple as submitting a well-filled out form that asks very specifically and explicitly "what tests", drawn "on what day" you are requesting.

This was WHY I was asking you if you have had any other labs done, period, so we could get an idea WHAT specifically your bili's, ALP, AST's/ etc were doing, before/during/after treatment. Of course we are all guessing/thinking things like GB, but, we are not docs to diagnose or suggest this - you DO need the guidance of a doc on these issues on these symptoms that are of concern. Good your GP did do an LFT (and perhaps some other bloods) in response to your worry, if it DOES take another visit to the doc to gain access to all your records then do so, obviously he and the receptionst do not see an overt problem with the lab results or he would have brought this to your attention - but still, another visit with him could pave the way for you to have access to all your labs, and, you could have further opportunity to chat with him about the LFT (or other most recent labs he took) and what he thinks/says about you currently.

Aside from labs done pre-treatment (or anytime), do you have any other test results: such a Fibroscan result/Fscore, did you have a abdominal ultrasound done?, and of course they must have assessed you for your Hep A&B immunity during your pre-treatment work-up?

It's shouldn't be so hard, but it IS work sometimes, getting what you need! C.

james_mc85 · Member

So today i went to the doctors to make another appointment, it was the young boy who works by himself and not the older woman who said i would need to see the doc so i asked him for my last LFT and he gave me it without batting an eyelid. First i will post my pre treatment results that i have which arent much

Pre treatment 26/2/18

Total Bilirubin - 13

ALT - 62

AST - 30

Alkaline phosphatese - 60

Albumin - 45

2 Weeks After Treatment - 13/06/18

Range

Total Bilirubin - 12 umol/L <20

ALT - 13 u/l <50

AST - 20 u/l <40

Alkaline Phosphatase - 97 u/l < 30 - 130

Albumin - 50 g/l <50

Sodium - 142 mmol/ L 133 - 146

Potassium - 5.0 3.5 - 5.3

Chloride - 106 95 - 108

Urea - 5.9 2.5 - 7.8

Creatinine - 80 40 - 130

Estimated GFR - >60 >60

My albumin has went up by 5 and right at the max of what it should be. My Alkaline Phosphatase has went up by 37 after treatment is this anything to worry about. Everything else seems good. Im not as clued up on this as everyone on here so im sure you guys/gals will help me make sense of it all

-- Edited by james_mc85 on Tuesday 3rd of July 2018 05:27:18 PM

-- Edited by james_mc85 on Tuesday 3rd of July 2018 05:50:13 PM

Iris Dragonfly · Guru

Hi, just wanted to wish you the best.

I believe you have rights to your records, I found this link.

https://www.nhsinform.scot/care-support-and-rights/health-rights/access/health-records#accessing-your-health-records

I wondered if your issues have to do with the gall bladder?

Blessings, Iris

james_mc85 · Member

-- Edited by james_mc85 on Tuesday 3rd of July 2018 04:41:35 PM

james_mc85 · Member

Thanks for the replies and encouragement. I drink about 3 litres of water a day, my urine usually clears but get darker again by the end of the night usually and it's also foamy like a pint of beer. Regarding my liver test, I asked for these when I was getting my eot blood test and the nurse asked me why I wanted them, I said to keep track of my health, she said we need to go to another part of the building to print them off and I asked her to write them down, she sighed and wrote down a few things on a paper towel (serious) , like biliburin etc, I will post when I get home.This is when I asked for my pre treatment viral load and she said 10,800 iu/ml and I asked her is that not quite low looking to give myself a boost, she said to me do you want it to be higher, that made me feel quite crappy. Sometimes it seems like the NHS feels they can treat you anyway they want because we aren't paying.

They did not take any blood while I was on treatment. I went to my GP doc and told him about my urine etc and he took some blood and did a LFT. When I called for the results the receptionist said no further action was needed, when I asked if I could have the result printed she said I would need to see the doctor again to get him to do it as she isn't allowed I don't have any jaundice of the skin or eyes. I honestly don't know why it's such a big deal for me to have a record of My health

-- Edited by james_mc85 on Tuesday 3rd of July 2018 04:41:07 PM

Tig · Admin

Hi James,

I agree, it doesn’t sound like relapse. That’s rare with the new treatments. They can easily test you at any time to determine it anyway. Your nurse is uninformed about retreatment. There most certainly are additional options available and as Canuck mentioned, Vosevi is one of them. However, I don’t see that being something to consider at this point.

Do you notice any jaundice (yellowing of the skin or the whites of your eyes)? You perfectly describe what is called cholestasis (bile disorder) Have you had a recent test for Bilirubin? If you’re experiencing a cholestatic disorder, the things you're describing start to occur. The pale colored stool and itchy skin are ringers for it. I’m not a doctor, but your description fits this condition and your nurse and doctor could easily test you and determine if you’re having a problem. Call them and find out what’s going on.

While you’re feeling this fatigue, I would pass on the heavy exercise. Give your body the energy you have for functioning, not working out. Start pushing the water and electrolytes hard. You should be drinking 3-4 liters of water every day, without fail! Keep those kidneys flowing and see if that urine lightens up. If you’re dehydrated, it should lighten up quick. If the stools remain light and the urine stays dark, they need to investigate the cause.

Just my opinion, James. When I had trouble with my gallbladder, similar things occurred. Got that little sucker removed and no more trouble!

5-1-18 · Guru

congrats james!!!

yea, more water and rest becos your body is still working hard. your immune system is taking over alllllllllllllllllllllllll the work now that the mavyret is done.

so give it a break and take it easy.

i had und at 4 weeks and test in oct but i'm convinced it's gone no matter how bad i feel now and then.

i have mornings of darker urine, not every day cos i do drink lots of water. i think it's also the immune sys. cleaning things out

all we can do is imagine we are cured and there sure are other options. shame on that nurse for telling you that furious .

so glad you are here for support , there are a few of waiting for our final scores.

Canuck · Guru

Hi James,

Welcome here.

Congrats on finishing your 8 weeks of Mavyret and being undetected at EOT!!

We can see you are worried about the Mav not working for you - but please know that this is a very unlikely scenario and it would be a very uncommon thing to happen to you, or to anyone on Mav.

You do not mention any other VL's that may have been taken through treatment (you've just mentioned the pre-treatment VL and the EOT UND), nor is there any ALT/AST type lab results mentioned, so, do us a favour and IF you have any of that info, include it, it may help for further deducing and discussion purposes.

Try not to fret about the dark urine, stool color, itchy skin - these things can have other causes (other than failing an HCV treatment) - but the evidence you have shown thus far is that you have NOT failed your Mav treatment, contrary to failure, you have shown you achieved an undetected status by your EOT! It would be rare indeed, nowadays, for someone who is UND at EOT not to remain UND forever more (especially with the likes of Mav and these extremely effective new-era DAA's)! Failures are getting to be as rare as hens teeth nowadays!

You DO need to disuss the dark urine, stool color and itchiness (and your fear that you are not undetected) with your doc! Perhaps you have already? - what do they say to you?? Of course we can understand why these things you have noted may have unnerved you, taken a swipe at your confidence, but you need to talk about them with your doc, so he can objectively show you all is under control in the VL department - even if your EOT+12 week VL is not due for another 7 weeks (aprox) - asking for another (extra) ALT or LFT's (now) might show you that your inflammation level has not increased - just a thought, something that your doc might do for you to help reassure you.

If you have further labs please do share what you have, as it may help in us all thinking things through and figuring it out.

Dark colored urine can be as simple as not enough water intake, being poorly hydrated, concentrated urine, dehydration, kidneys working too hard, I cetainly hope you were advised to and were drinking LOTS of water while on Mav? Stool color also can be affected by many things, diet, fat amounts you eat, how well your gallbladder is functioning, and many other reasons - any basic labs such as bilirubins and ALP would be helpful info as well. Having been packing chronic HCV around (alone) and going through taking a powerful drug treatment, phhht, the ardour and stress of it all, it would be hard to judge anything based on such a "variable" variable like fatigue. (Not everyone looses fatigue on treatment, some folk do not feel a whole lot different after treatment to what they may have been felt before tretament, some people do not feel "better" right away, everyone is different!, but you definitely cannot judge a virological success or failure by how one feels). I wish the fatigue and the other things which have caused you worry just fade away, and the sooner the better i say. In the meanwhile, talk to your doc about your worries and ask for (at least) an ALT (maybe LFT's including bili, so as to compare against prior ones) for reasurance purposes. I went through bouts of various skin issues and itchiness after cure as well. Labs count more than symptoms.

Knowing your "through treatment" VL and ALT/AST's (and other labs) would be helpful here.

I doubt very much that you have failed, just based on the evidence of your EOT VL and Mav's extremely strong track record of cure. I am in disagreement with the person who told you there is no other treatment for you after Mav (NOT that you will need another treatment!) - but, just for argument sake, I am of the opinon that Vosevi is the option for people who (if they EVER) fail Mav.

Try to do up a signature line - it will make conversing easier all around (something like this) ...

Male, Age 32, GT3 since possibly/aprox. 10 years ago, Pre-treatment Fibroscan 5.4 kPa's, VL 10,800 mL/IU. Rx Mavyret 8 weeks. SOT April ? , 2018 to EOT May ? , 2018. EOT VL = UNDETECTED ...

But if you do have other labs, tests or info you could add, you certainly could put in whatever you want to this example sig. line.

Talk to your doc, concentrate on the irrefutable fact that you were found UND at EOT, and try not to give in to the "fear of" failure.

From a fellow-X3 ... biggrin C.

james_mc85 · Member

Hi everyone I have just recently joined up as I needed some support and decided I should speak to people who share my burden. Im from Scotland and I reckon I have had hep c since I was 21, I am now 32, I am genotype 3. I finished 8 weeks of treatment with mavyret 5 weeks ago today. My Fiboscan score before treatment was 5.4 and v/L was 10,800 ml/iu. I was undetected when I was tested the day I finished treatment and won't be tested again until September. During treatment I had dark urine and light stools and this has continued 5 weeks after stopping. I have now developed severely itchy skin that comes for a few days then goes away for a week, this has been going on for a couple of weeks now and is very irritating and affects my sleep. My energy is OK not as good as when I was on treatment and when I go for a run it feels more of a chore than on mavyret. On mavyret I felt great and would bounce out of bed, now I'm more tired but usually fine once I'm up and about for a bit. The dark urine/light stools and itchy skin have me convinced that its back and its making me extremely down and very anxious, these are all symptoms of hcv so it seems very likely I have relapsed. When I was getting my blood draw at the end of treatment the NHS nurse told me there is no other treatment available is this fails. Has anyone else had itchy skin after treatment of dark urine light stools P. S sorry for the novel :p

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