Hep C Discussion Forum

hi harry.

i was looking for your thread but did not see one. do you want to start a thread of your own? it's easier for us to answer questions and follow your journey.

go to this link and click on the "start new topic" and name it what ever you like

https://hepcfriends.activeboard.com/f388110/on-treatment/

 

i got sick after eot :( , but got well. my liver clinic wasn't very hands on, but my family dr helped me thru what ever i had going on.

i am feeling much better since treatment. it's a beautiful thing. 

i'm so happy to hear you are hanging in there and with only 26pills to go

-- Edited by 5-1-18 on Wednesday 17th of October 2018 01:44:36 AM

Hi 5-1-18 hope you are feeling better ,i am in Australia i have26 pills to go epclusa i think you said you had hearing ptoblems as well as swelling ?2nd week i had extreme ringing in ears ended up deaf in right ear my general dr prescribed predeston (steroid) for 10 days now i am ok,nausea at times plus depresion but not too bad,im65 with emphasemia so im hopeing i dont catch any colds or flu as i get short of breath already more so with epclusa ,itried to get my VL checked to see if medication is working but was told i have to wait till 12 week after tx ,i hope you are starting to feel bit better and swelling going down.Did you recieve much support or backup from your liver clinc ?i didnt thought they might prescibe anti anxiety or nausea meds no nothing.anyway good luck to you.its all such new medication hard to find out much.thanks

Hi,does anybody else suffer from constipation with epclusa ?also had hearing problems 2week seem ok now my dr gave me steroids for 10 days hearing ok now ,maybe becourse im older im 65 geno 3 still f2 fibroscan was ok lucky since probley got viris back in the 70s !!im starting 3rd mth today,i thought they wud check my blood but said i have to wait till after tx finished i feel so tired sometimes guess iv no choice but keep taking pills 28 to go ,just hope its working an not hurting mi immune system .thanks everyone good luck.

STL,   Is it Monday in Australia? Does that mean you go for your SVR12 blood draw on Tuesday, Oct 16?? (I hope!)  C.

Hoodietree wrote:

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5-1-18 wrote:

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i too hope that in time my feet stop hurting like they do. my hands and wrists don't seem as bad right now , but i am def careful with them and my feet.

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 Hey 5, I didnt realize you had these problems too. Im adding you to my daily prayers and sending you all my good vibes & luv. 

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 thank you hoodie ,  i too pray for you and our other forum friends

every day i feel better, so i know the prayers we pray are working

Welcome home Tig.

Ya, i just scrolled down to where Ob's wrote it - it WAS glycinate that Ob's was remarking on. The "th"  (threonate) was the one my mind switched to, and it too is also highly absorbable and touted as good for "neuro" issues. 

The one i happen to be taking of late just comes pre-combined with some other things, but it has multiple forms  of magnesium (hydroxide/carbonate/stearate/oxide/malate/glycerophosphate) in it - some potpourri smattering of magnesium types I guess to cover multiple bases? Regardless, overall/combined it is a fairly low dose of magnesium (both in mgs and what I likely end up absorbing).

There seems to be a TON of stuff on the internet to describe what they think each kind of magnesium might do fer ya. Here's one describing the highly absorbable threonate as being especially good for for neuro issues (ignore the sales pop-up stuff).

https://www.mamanatural.com/best-magnesium-supplement/ . Good grief, it seems the more you read the more stuff you have to buy and take!

Maybe reading this will help remind STL which were the types of mag she had tried for a while in the past, and see which she might opt to try again in future.

Some people on PPI's for instance may not easily absorb mag, thus citrate might be better for them?, I read. Then, there are those of us who may have loose stool issues, they too might need to take certain forms of mag (perhaps glycerophosphate) so as not to upset the cart, BUT, then ... you also have to be careful with people who may also have renal problems! Juggling, judging and reading is required. The more absorbable (in aprox order) are 1-citrate, 2-glycinate, 3-malate, 4 carbonate - but that list is not exhaustive of all the mag types!

I'm exhausted now, so I'll shut-up now.  C.

 

 

Hello,

Just checking in and unpacking from a day of fighting the airport hordes. Geez, what a mess those places are. They need traffic control inside the terminal as well as outside... eye roll 

Obs recommended form of magnesium was the magnesium glycinate formula, if my recall is correct.

STL (and 5),

Stay fast in the goal of gtting better in ALL ways - I am SURE some of these things WILL start to improve for you (both of you) these horrid things which may have been plaguing us prior to treatment.

We each all have dif stuff happening to us before, during and after treatment - our poor bodies have been long working under the extra constant unforgiving stress of carrying this virus, and if we feel it or not (having the virus or being freed of it) your body certainly knows you have been freed of this huge viral burden. But, for you two, it is STILL early days. Be patient, wait, hard to do when your body is still feeling in distress, it will just have to suffice (for now) to know that you have done every good thing possible for yourslef to be freed of this virus, and this cure is going to pay enormous dividends to you in future. I just know it. We are not built right to carry this virus, without it you will be improved, in what ways, we shall see.

I too did not feel "better" on treatment, nor did i note big improvements for quite a while after cure, but over time I surely have and I am so grateful for each one - whether big or small.

Now mind you, I did not have that kind of pedal neuropathy to have to deal with.

I feel strongly that you must get some attention to this part STL, ask to see a specialist of some sort for this - this much neuropathy/pain and disability is just TOO much. What were the tests they did on you again (for cryoglobulins, C-reactive protein, rheumy tests, autoimmuny tests, etc.??) What did the doc(s) come up with in regard to your pedal comlaints?, what did they say about it?? Had you already been assessed by a specialist or a rheumy guy or a neurologist guy for this pedal neuropathy? I can't recall if you had said before. If nothing else (in the interim), you just simply must give the magnesium Ob's mentioned another try, a modest daily dosing of this cannot possibly harm you and "may" over a period of days or weeks might help some (you never know), maybe you have already tried going back to trying to use some mag?, you mentioned trying it once in the past with lac-lustre results, i would try again, with the specific type Obs mentioned. I think it worth a try. I forget the name of Ob's one (starts with "th") there are formulas out there that hold "a blend of dif magnesiums" in them, to suit everyone's current beliefs on what each one might be able to do best for you, but I have heard that the "th" one may well be quite an important type of magneisium for neuropathic issues. 

I was kinda disappointed too after cure, especially in the area of energy/fatigue/weakness and other things, but the small things that happened first bouyed me, getting rid of a mysterious numb/dead, itchy painful spot on my back that I had hosted for-e-ver - just .... disappeared one day, much to my amazement! And a decades-long-standing intractable (I thought) back pain that just vanished - that one blew me away! I can tell you those two things alone were huge for me, the fatigue took a long time, i too was plagued with post-cure infections of dif sorts, abcesses and such but the face, ear, skin infection things DID stop!

I was glad to know more about the orthopedic stuff in your wrist, I had got part of it down, the "you're too old and not working" justification BS from your first posts about it!, but now that you explain it more fully, that has been quite the journey to get where you are with that! Soooo, you think it is going to work/suffice?? 

Gotta go, more later.

Certainly hope your feet have gven you a repreive of late. Fingers crossed. C.

See The Light, please hang in there. I will pray for you every day, please know that you are loved. 

i had a first ever migraine with aura, stomach flu, sinus infection , no energy, and i'm sure other things too , oh yea, canker sores on gums and sore gums...

Hi STL,

Goodness, you just sound exhausted, mentally and physically. I’m so sorry you’re feeling this way. Good to know you finally made some progress with your wrist, but geezus, what a nightmare you went through to get where you are. A victory, but I wish you had more comfort and were able to rest at night. I know you’re tough and will persevere, but... Keep your proverbial chin up and do your best to muscle through it.

I also have some severe trouble with my spine and have heard that same story about age and do I want to go through all of the surgery and recovery again. It gets tiring and of course with the opioid crisis everywhere, the people that could use some relief, can’t get it. 

I have heard similar complaints about joint pain post treatment with some of these DAA’s, but the good news is, it improves with time. I have to wonder if, like Interferon, these anti virals cause some inflammation around the joint surfaces and hurts like hell until that swelling reduces. Let’s hope.

FYI, Canuck had a death in the family and has been gone a day or two tending to that. I know she’ll be anxious to talk with you as soon as she’s back in touch. Stay well Sister!

Hi Canuck,

Sorry for the delay. It has been a full on week shall we say. I visited Hand Clinic Wednesday and have now been cleared. I don't know just how much I said about my hand situation at the time but it was a result of a Radius which healed crooked. It took weeks to get into the clinic. They were going to fix it going by the Xray provided at the time.... till they saw the new current Xrays that day. By then it had completely healed so it was then left three months to see how it went. In three months it was not good at all I was suffering terrible numbness/pins and needles etc as well as constant pain, so worse than it was last visit. The lovely Indian registrar was wanting to perform a big op on it which would involve bone grafts from my hip as with my chalky bones the length of the bone had shrunk as well as being crooked. He went off to talk to the head man and after some time he came back to tell me he feels that due to my age and no longer working (My translation - you are too old and useless) he did not want to do it and they would instead perform a carpal tunnel procedure -( treat the symptoms was the philosophy and the main thing I was complaining about was the numbness and pain, so performing this procedure and removing a little nerve would be a simple procedure which they felt would help me. I went along with that and although it did help a little it was still pretty bad, so again after three months physio and another visit ....more talk about really fixing it but again after a talk with the head man ....this time I met the man. I was still quite grumpy about the age and work thing but had to admit he was good. He explained that to fix this would involve and extremely major operation which given the state of my bones and joints ....all the arthritic finger joints etc he felt the outcome may not be good. In not being able to move it for months I will likely lose a lot of the movement I now have. My main symptom then was the knuckly thing on outside of wrist was now more under the hand and preventing movement to that side and down. This time the answer was to remove that knuckle. Apparently the procedure is used quite often in India to improve movement, but rarely used here. It would improve movement they both felt and be more likely to succeed than anything else. They did not feel the real fix was the right way to go in my case, and talked me round. I knew this was my last ditch effort and this failed I was doomed. The procedure was called Darrach's Release, - exercise of the distal joint from the Ulna. It was done in March just before I began my appointments for Hep C. It caused me problems something chronic, because the ulna was now floating slight movement caused extreme pain. I remember in the shower I went to use it to wash my armpit  and the pain nearly caused me to pass out vomit. You cannot get back into clinic easily. I had an appointment for three months so all I could do was go A & E. I felt something wasnt stable and they would have to go back in. After wasting all day there all I end up with was an Xray...(Gorr to see this bone connected to nothing was so weird) a script for panadene forte and a referral to fracture clinic within 2 weeks....Well I thought that was ridiculous ...I didn't have a fracture but their point was at least I was back in orthopedics before the three months my appointment was scheduled for. Well that appointment didn't come for 6 weeks and by then I was seeing my man again in 5 weeks so I cancelled that one...I knew it would be another wasted trip and actually by then my hand was well on the mend. My lovely registrar was very pleased and apologized for not telling me more about the initial instability while it was healing. Well now as of Wed I'm cleared and its the best its been since I broke it some 18 odd months ago so I guess alls good. LOL There are no further options so it has to be. It works I can perform my normal duties, as well as I can expect to. It gets stronger all the time but will seized joints in my fingers .....he....it wasn't good to start with.

This essay is going way to long so will post again re my post Epclusa month

Those are all excellent numbers, STL! The Lymphocytes are part of the white blood cell group. Overall, as is stated, your WBC’s are completely normal. So having the lymphocytes elevated only means, as your doctor said, they’re there to combat anything that might try and spoil your party. Your body is having none of that! It’s all good...

Thanks folks. Does seem a little concerning that my numbers went up rather than down 8 weeks later, but since my provider says they are fine I guess they are. I see a lot of people here posting much lower numbers. Hope it is just  as Tig said these results fluctuate.

Yes Canuck .......all my results were very normal cepting the same three as last time. When I have a particularly odd one it is only a one of....it doesn't usually resurface [touch wood}

RDW 11.9 Low (May 11.4) [range 12-15]

Mean Platelet Volume 8.8 Low (May 9.3) [range 9.5-13]

Lymphocytes 4.2 High (May 4.39) [range 1.5-3.5]

I saw a locum yesterday and he said he wouldnt even look at those as by bloods are fine ....he circled the ones at the top of the sheet and said these are the ones I take notice of and they are all good.

Haemoglobin 123 [115-155]

White Cell Count 7.58 [4-11]

Platelet Count 257 [150-450]

He said the Lymphocytes fight infection and disease and having a few extra was good in my case LOL

He was very nice and said All looks good. He has heard only good things re people being cured very quickly and easily with the new drugs, and how amazing they are.

 

 

Excellent numbers STL! They will fluctuate as things normalize and you adjust back to yourself again. As long as they don’t jump off the chart and continue to stay a lovely shade of normal, you have nuttin’ to worry about... 

October will be here before you know it!

Got the printout of my EOT Bloods. ALT 23 AST 30....... MMM I note up a bit from last time. After 4 weeks they were 16 and 23. They tell me that's fine so guess I shouldn't be concerned......Here's hoping Oct will bring good news!

Hey STL,

You said ... " The alarm wont be ringing...". EOT is a weird time/milestone, us, so geared up, getting psyched up and ready for treatment, slogging through/complying with treatment and then .... nothing. We finally kinda get used to the routine, the concepts that were formally new to us, believe and accept the fact that we ARE indeed getting cured and will now be bettter, when, all of a sudden the pills run out - now what! The pills became (for me anyway) a little savior I swallowed each day and was dependant on for great feelings of security and hope, when they were gone there was this weird little emptyness. At the same time I was as gleeful and excited as a child marvelling at the sound of those last few pills rattling around in my bottle, getting near to the end, then there were only 2, then one, until there were none. It was a relief just in itself to NOT have to take them, but I had fleeting thoughts of missing their security and company as well, in a way. I think for most folk having hepc undermines our basic security, we are at a distinct disadvanage to say the least, hepc is NOT a confidence builder disease, when they say it is a systemic disease, boy they mean it - it affects everypart of us, mind and body. The docs, our freinds here and supports along the way of our journey, help us get through it all, but the piils come to represent the epitomy of the very best help we have ever recieved. Thank you science and Gilead. No wonder I felt funny with no more pills left. I had called them my biggest-bestest-strongest-bro (or buddy) EV-ER in a bottle, my army, saviour. It's a journey alright. Keep on doing what you are doing, walking, treating yourslef good, restings as you need it. Revel in the good work you have just done. I loved your little symbol when you said aaaah, what shall I do tomorrow!     C. 

Congratulations See the Light!!! good news  indeed, What Will you do? The nasty little worry in the back of the mind can at last take it's leave. I'm really glad for you. I will be nice to hear how you feel over time, do check in and let us know eh?

Many blessings and bu-bye beans! they grew you some strong stalk.  Iris

WOW! Look who just reached EOTville! Time to disembark the Epclusa Train and get onboard the train to SVR. All aboarddddd....

Congrats

 

CONGRATS STL!!

Nite Nite......Sleep tight Canuck

 

11 1/2 hours but who's counting. ROFL

 

Yes 5 I will go down for the blood draw in the morning......will have some have some insight into my liver health by the end of the week. Then ill join you on the big 3 month wait to see if the treatment was successful

are you getting EOT labwork done this week? oh yea, the joy of not having to focus on "is it time for my pill?" .... it was like the baby that needed to be feed and bathed and changed.

-- Edited by 5-1-18 on Sunday 22nd of July 2018 05:47:38 AM

SeeTheLight wrote:

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Yes Iris it sure is. I have a new pic ready for Monday when I swallow my last lovely  little Magic Bean too

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 , i'm so excited for your upcoming EOT

Wooo Hooo!! the light at the end of the tunnel must be getting brighter