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12773 tn?1328916786

issues post treatment.

I have not posted in a long time, as I did try to get on with my life after treatment.  I am 2. 5 years post treatment for 48 wks, geno type 1 a.      And am still Clear, but seem to have other health issues going on right now, and wondering how much of it is attributed to the drugs,  the riba pills.   I now have inflammation of my esophagus, stomach and colon, found 2 precancerous polyps, and bleeding ulcers.  Now just got a call from my female doctor, and and they found lumps on my mammagram. , can wait to see what the paps smear says  .   I just don't know what to do, is any of this from the drugs, do I have any recourse with the drug companies over this ?  

I have been out sick now for 4 wks, they have me on meds for my stomach, but everything makes it hurt.   I have lost 22 lbs of what I gained back after treatment.   but have been eating balanced meals, at least trying, but everything makes me sick.   I am just so worried..   I am on disability right now, and dr says she is putting me out for 6 months or more..  but I don't have a job when I go back,   so may stay on disability.  Our jobs got surplused, and all were laid off, as of June 4.. so I have time with pay, and disability up to a year.  but I am just really scared I guess and need some encouragement that others are going thru the same ?
24 Responses
Avatar universal
I remember you well and it's nice to see your name her again. I only wish you were not feeling so poorly.
I don't know anything that suggests that your complaints are treatment related but we have seen a lot of people complaining about not feeling well post treatment. Many attribute it to treatment. Some people complain of autoimmune disorders and I do think that is a risk associated with treatment for HCV. Esophageal inflammation and ulcers are something that I cannot recall seeing in this context but that doesn't exclude the possibility that they are treatment related. I had serious esophageal problems before treatment - varices and sclerosing treatments - but since I achieved SVR I have not had any issues. I wish I had something relevant to say but I frankly don't have a strong opinion whether your problems are a result of treatment.
I hope your problems resolve quickly dperry.
Good luck,
Mike
Avatar universal
Hello Dana, It seems you aren't alone by staying away and getting on with your life.  I've done the same but check in from time to time to see if I see news of an old friend.  I was delighted to see you but so unhappy you're feeling so ill.  After reading your current post, I checked your profile page to see if anything else had come up with you.  Last time we talked you were cooking up a Thanksgiving storm!

I read of the constant ammonia scent you've been smelling as well as the problems you've just now posted.  I really don't know if your problems are treatment related or not.  It just doesn't seem fair that some thrive after treatment and others do not.  You may remember I went through a rather grueling 73 weeks of daily infergen.  I'm one who thrived after treatment.  I'm so sorry for you Dana.  I did do some research.  Perhaps you've already come across this but try goggling H. pylori or Heilobacter.  Seems from what I've read every single symptom you've mentioned, esophagus, ulcers, polyps, weight loss and the scent of ammonia can be caused by this intestinal bacteria save the issue with the mammogram.  I was surprised to find so many people researching this issue and was shocked when I read in another of your posts that the doctor just poo pooed you away when you mentioned this.  

Here's one of the many links I found while researching for you.

http://www.drmirkin.com/archive/6187.html

Dana it was good to see you even though you bring some difficult news.

My very best,

Your, Lonestar
717272 tn?1277594380
Agree with the above.  Try not to worry about the mammogram, just follow it up.  A lot of us have mammograms that don't read 'right' as we get older.  Usually it's nothing and you just jump through a bunch of hoops until they finally tell you that it's nothing.  I've been through the process many times and it makes me mad every time.  You'd worry just as bad if you didn't follow them up as you do while you're jumping through the hoops.
12773 tn?1328916786
~Mike   yes its been a long time, and really don't know what to attribute all the issues I am having to.  But I know my thyroid issue is due to treatment, have to take meds for the rest of my life now.    But all the other things I just don't know.   I guess I got so used to having an upset stomach during treatment, that on and off bouts of upset stomach I just blew off.    But I have been off treatment for 2.5 years now, and in the last 6 months or so been feeling worse than I did when I was done.   Another thing is my brain is just not functioning properly either.  I cannot talk have the time, cuz I can't find the word.. its so frustrating to be in the middle of  sentence, and either say the wrong word ( doesnt even belong there ) or can't find the word I want.  Its terrible when my job is talking on the phone and I know what it is I have to say and can't get it out.  
Does anyone else have this problem ?

~Lonestar
I did pop in from time to time to read on some posts, and occasional "notes" from my HepC online friends.     But yes did try to get on with my life, and all the little things that came up for a while, I ignored, figured its just my body getting all the drugs out.. but I did feel wonderful most of the time.. full of energy,, etc.. and started building some muscle back and able to go for long walks without being winded.. it was wonderful.  
But guess I should not have ignored the issues I started having.

The ammonia smell went away after I had the colonoscopy.. haven't smelled it again.  but they did check me for that H. pylori or Heilobacter, but it was negative.  All they found was the inflammation of my stomach, esophagus, and colon, the bleeding ulcer and the precancerous polyps.     but no infection at all.   I just don't understand what is causing all this.  I am tired of being sick and in pain.   I have ignored the pain in my joints, figuring its just age catching up to me, and have been to the dr about it, but they just figured I pulled something or strained it somehow, but haven't been doing anything that would strain anything.  So just a bit perplexed.  am going today for blood work to rule out Rheumatoid arthritis, and dr thinks it maybe fibromyalsia, she put pressure on different spots of my body and was extremely painful.  

~Newleaf09  Yah I went thru this before in 07, when I was going thru treatment they found one, but they had me recheck in 6 months, by then had lost considerable amount of weight, and the lump was gone.    This time they are having me go back this week to redo the MG. But Mentally its just all to much to take in all at once.  I am praying everything is going to be ok.. Its just all too much..  
250084 tn?1303311035
Dana.......
So sorry to hear about all of this. I remember how much you were looking forward to getting back to 'life'. It sure sounds like you are going thru another h*ll and it has to take such a toll on your emotional health as well. As you may remember, I am also 2 yrs, 2 mths post tx. I just started feeling more 'normal' , tho a lot is just not. I do have the memory, concentration issues but no where near all the things you are going thru. A few weeks ago I was admitted to a hosp (finally going for follow up, all results today) and a Dr. with no bedside manner what so ever said "you have post interferon syndrome', yet explained nothing of it. That could mean 100 things IMO! And at our age we also have menopause sneaking in, so I attribute some of mine to that (?). I have changes in the breast they are watching and have had several mammograms and sonograms on them, but again ...menopause?? Be sure to get a sonogram also.
  I haven't heard of anyone with the issues you are having, which are many. Lonestars link sounds possible, hopefully you will get to the bottom of all this.

So sorry about your job too :( That's a hard blow these days. Please keep us posted, and hoping you get answers and relief ASAP.

LL
12773 tn?1328916786
Hi how are you doing ?  yah I have been in menopause since 2002.     and just celebrated my 50th bday.. LOL   seems like I am falling apart these days.   Emotionally I am a wreck.  but I think the job thing maybe a blessing.   As I will earn more in disability then I would paid on the books during the termination payout.   And things will get better.. They have to.  I cannot take anymore bad news.. It just has not been a good year so far.  I was expecting the job to end at some point,    it was just writing on the wall.. Its just hard after 8 years of hard work.   and great pay with paid insurance., but they have to continue to pay my insurance while I am on disability, and if it should go past Dec of this year , I will need to file for social security disability.  If they deny me, my company has to continue to pay me, but not sure what would happen to my healthcare.. but I guess none of us do, with the up and coming changes.   I just thank God that I was already out on leave when the D day came at my job.  I was supposed to be going back that next day.  but after hearing the news, I was a wreck and shaking and could not cope with the stress, so dr put me out.. and all this since then.. I am just.... out of hope.. But trying to keep positive.. will keep ya updated.
179856 tn?1333550962
2.5 years post how can that possibly be already! Wow!

I too don't know if any of it is actually treatment related.  I get those 'abnormal' results all the time on the mammo now and believe that it's much more common for our tissues to be fibrois as we get older so they need to confirm with ultrasound to be sure.  Try not to worry about it if you can help it and just move forward with the tests to prove you are OK.

I'm sorry you are feeling so badly.  A lot of us are on high dose Vitamin D now to help with bone pain and stuff.........I was pretty shocked with all the ice cream I ate and milk that I drink that even my levels were really really low too - I don't know that it will help but it's only a few dollars and is an easy enough thing to try. Plus it can't hurt. Have you  been taking glucosamine for the joints?  Gosh I sound like an old lady.  I guess I finally really am (darn!) but it's better than the option.

Just wanted to wish you good luck with all of this.  Continue to follow up because i"m not sure how much is HCV related (or tx related) and although we tend to assume everything is - it might not be.

Our thoughts and prayers will be with you....check in more often you are missed!

Deb
96938 tn?1189803458
Good luck with all this stuff.  I was always amazed by all the weight you lost in treatment, over 100 lbs I think. Seems like your body has been under assault from various things the past few years. Hang in there. At least you're svr.
Avatar universal
Hi Dana,

I know you were already tested for h. pylori but it may be worth testing again.  I think there's a high degree of inaccuracy in the testing, or so said a specialist my mom once had.

My mom complained to no avail to her other doctors (and family) about some of the issues you mentioned until she found one who was very familiar with h.pylori.  I remember her groaning about it, feeling scared and discouraged; and then bingo, the remedy really made a difference, even though she had other unrelated health issues at the time. It was hard for me to understand but I was surprised when she made such a turn-around with a simple antibiotic,or some routine med like that.

I think it's the most common infection in the world but we mostly live with it until it starts acting up.

I'm not saying this is what's bothering you but it may at least be worth ruling out via a second test.

Hopefully, you can get to the bottom of this while you're on disability  - usually the worst part for me is when these health puzzles turn up with the stressful combo of not knowing what's going on and feeling so crummy and worried. Having a diagnosis at least gives you something to work with, and beat.

I think weight gain post-tx is pretty common, even when eating moderately. So your weight LOSS of twenty-two pounds after-the-after of tx is something that caught my eye as being something I've not seen posted before. Are you within your BMI? Have you tried finding answers searching the gastro forum? Undesired and unexplained weight loss is a flag that docs pay attention to, so I wonder why your doc is not working harder to help you.

I'm sending you best wishes, as well as my hope that your doc gets to the bottom of this very soon. Make him get cracking on your case, instead of him letting you fall between the cracks.

Susan

Avatar universal
Hi, Dana.  As you know, I am post treatment, however, still not SVR.  For quite awhile after my last TX about a little over 20 mon. ago, I was going along doing great, working out and other and than the normal aches and pains and continuous insomnia (which I HAVE to take sleep meds for or I CAN'T sleep), I was actually 'living w/hep C' and really keeping my LFT's stable at around 60-80.  Then, I got injured walking down the stairs at the gym, I didn't fall down them, but when I grabbed the handrail and jerked my knees hard, I pulled some things all out of whack in my body.  Now, for the past several weeks, I've been nursing soreness...    My doctor thinks I tore a ligament or a tendon in my left knee.  It swelled up and he drew fluid off of it and injected it w/steroids.  Then, he said, no lower body cardio.  So, I was only allowed to do very light pedaling on the stationary bike..., no spinning classes, no pilates, no classes whatsoever, no elliptical.  Just in the past few weeks of this inability to do the cardio, it's effected how the rest of my body is feeling.  I hurt in my feet and in my other knee now.  I've been getting some more RUQ pain as well.  As far as the other things that you've listed, since my last treatment I did go through a bad mammo which was followed up by an ultrasound and an MRI..., turned out to be fibrous tissue/cyst.  No problems w/my esophagus though, thankful for that.  I hope everything straightens out for you!  I remember meeting you in Brandon.

Susan400
475300 tn?1312426726
Hi, so sorry to hear that things are not as any of would like but as someone said "at least the SVR is there".  I finished TX 26 months ago and am SVR also.  Since then I have been diagnosed with gastritis by endoscope, IBS and also had a colonoscopy, have been to a rheumotoligist, Had a wacked out EKG which led to a stress test, had a brain MRI, plus some stuff that I can't remember.

At least your colonoscopy caught and got rid of the polyps.  I haven't had an off mamogram but 2 of my girl friends did and they were never on TX and they turned out fine.

In my nonexpert opinion I would guess the weight loss is from being sick at your stomach.  I know that in my case I couldn't eat for days at a time and puked my guts out.  I did try to have a milkshake type drink made of carnation instant breakfast, milk and Deb's ever favorite ice cream.

All of this for me was post TX.  I was also diagnosed with fibromyalgia to explain the muscle & joint pain.  I also just got out of the hospital, had bacterial pneumonia.  I catch every cold, virus, bronchial cough & sinus infection that comes along.  I don't think I have an immune system anymore.

I hope you stop back in and let us know how you are doing

Denise
233616 tn?1312790796
I know it's great to get "on with our lives" but things have a way of cropping up even when we do SVR.

I'd be tempted to say make a huge issue out of the ammonia smell. Lots of things could be causing it, bacteria in stomach, sinuses, bacterium on the skin etc, but the common culprits are liver and kidney dysfunction and this is very serious.

You mentioned weight loss....again, any issue with you elimentary canal or your liver or diebetes/kidney can lead to rapid weight loss...you need to get to the root of this asap.

you should consider a complete workup by and endocrinologist not just a GI guy IMHO.

also, I vaguely remember you Dena,..HI....but can't recall what stage you were when you treated. Obviously if we are late stage treaters our livers will never be entirely normal again...and so they must be watched. We can't assume we are out of the woods entirely if our livers were already stage 3 or 4.

also, other things can lead to further organ damage. Many people with hcv have low endocrine functions. Not just the thyroid but often the entire endocrine system including pancreas, pituitary and more.  Getting tested for these could be a good idea.
For instance "sore all over" can be from build up of urea and acids from low kidney function, underfed cells from insulin resistance, or dead and unrepaired tissue from pituitary dsyfunction, just to mention a few.  A lot of research is being done on the connection between fibromylgia and HGH deficianty...something half of liver patients have. Though it's hard to get treatment for this it can be done. I have a thread on this topic if you are interested.
Hope you feel better.  PS...fibromyalgia can cause lumps in and around the breast, as can infections....there are many lymph nodes around the breasts.  So don't worry prematurely that you may have cancer...you may not have it.  Defintely follow up on this, but don't get worried yet.
also you mentioned the thyroid thing...how often are you getting worked up for that?
too much meds can cause rapid weight loss and also shut kidneys down...too little also causes big probs...thyroid disease is not a minor thing.
get checked regularly and take your meds same time each day, on an EMPTY stomach.

Have they tried you on any acid pump Blocker type drugs?  What did the upper endoscopy show?  
250084 tn?1303311035
Dam, your tugging at my heart strings here, you sound so low :(
I know it's far easier said than done, but try to get up every day and keep some hope for better days. They'll come. I know it's so disappointing to to finish this tx (especially you extended, 2nd and 3rd tx-ers) and then life get's worse, or at the least, not any better, in your health.
You know how much support you get here, no matter how long we may be gone at times. Please be sure to keep coming back to vent, talk, whine if you need. Just concerned for you, so don't go disappearing for now, k?

LL
12773 tn?1328916786
Thank you all for your continued support.   I will have the Gastro recheck for infection.  But that was tested twice, and not found.   I am going in just a bit for another mammogram, and possibly an ultrasound.   Will find out when I get there, as he faxed the request in to them.   The weight loss I cannot contribute to the sickness, maybe some but mostly I have been on a diet program since Feb.  Eating 3 balanced meals with snacks, but within the last few weeks have not really been able to eat all that, because of my stomach being so messed up.   I am either throwing up, or its coming out the other end, from one extreme to the next, and every thing makes my gut ache and cramps so bad I sit bent over ..   They did a Catscan on my abdomen, nothing wrong with pancreas or apendix, they did the scope and found the 2 precancerous polyps and removed them.  But since I have either had diarrhea, or I get so bound up, then when it does come out, its no bigger than my pinky, so my guts are definitely still inflamed.   Will call back today and make another appt with him.  I am on Prilosec 40 mg daily and Carafat, 4 times a day.   I cannot take anything for pain.   I am trying not to worry about the Lump.. I am sure its nothing.. like others have said, once in menapause, there seems to be quite a few that have had that, and turned out to be nothing.  So fingers are crossed.  Well I need to go get showered and ready to head out the door.   Will fill you in , when I know more.   Thanks again for the continued support.
12773 tn?1328916786
Well went for the other sonagrams and they said needs to be watched, re check in 6 months.  Mike is not satisfied with that, as we have been thru this before.. but I tried to reassure him it is not uncommon to find abnormalities in the mammogram when in menapause.      So thats off my worry list.    Have appt on Tuesday to see my primary care physican and she should have back the blood tests she has requested.    Have had just all over pain for quite sometime.  If its not my hip, or knee , its my shoulders and neck or elbows, plus she put pressure on 18 pts of my body to test of tenderness.  Very painful.  So trying to rule out Rheumatoid arthritis, as she thinks its fibromyalsia., which she says can also have stomach issues from as well.   So now just get approved by the healthcare nurse for my continued disability.   Hopefully will get that approval today.    Or DENIAL  hate to even hear that word.  means I have to go back to work, and work out the rest of my term time till June 4.    Then am unemployed.    So trying to get this approved and out for as long as possible to prolong the date.   Fingers crossed, but hard not to have this anxious feeling in my gut.    I feel nauseas just waiting,   as that has me stressed on top of everything I am going thru physically as well as my mental being..     Keep fingers crossed for me everyone.   Hopefully will get to the bottom of this soon.. Tired of being sick and in pain.
12773 tn?1328916786
Something I forgot , after my 2nd MG, I had a follow up with the Gyno doc, and he went over everything and has started me on testosterone treatment  ( separate issue, not getting into here..   LOL ) but also gave me a copy of my lab work to take to my Primary on Tuesday.   Besides all the issues,  Thyroid, Diabetes,   Stomach and general pain, they have me on Welchol for High Cholesterol.  , its one that works thru the stomach, rather then filtering thru the liver.     Well my gyno says he needs to take me off that one, that I need Niacin.      and since it goes thru my stomach ?? could this be the culprit ??? , well anyway.  Says that my Cholesterol total is 198 , which is the high end of in range.   It was high.. like 246.    but my HDL is 34 ( s/b 46 to < 150 ) and My LDL is 138, which is only a bit high.. s/b < 130   says I need to be on a different medicine.   But now that I think about the stomach issues, have been worse since I started on those meds.    and have been on them for just over 60 days now.   Wonder if those are attributing to the imflammation and the ulcers ?    
233616 tn?1312790796
glad I stopped bck in, and glad your mammo was fine!!

I think the meds you are on may be part of it.

One thing that can also occur is divetticulitis can cause some stomach issues...it's usually causing symptoms further down the alimentary canal, but not always.

you mentioned changing diet, so I bring that up. Everybody our age has some.

another possibility might be fatty liver..you mentioned high cholesterol so just to be clear, fatty liver can cause all kinds of issues even before one reaches ESLD.

I think lowering the cholesterol should be a priority, as it is hard on far more than your liver...kidneys heart brain are all effected by too much, however you need to be aware too much niacin is contraindicated for liver patients....I think some is ok...it's been given a bad rap because too much leads to more inflammation, but some would be ok...read up on it first though.   Docs don't like to give folks statins who have liver issues, because they are problematic then...but there are a lot of ways to help lower cholesterol besides that.  Cheifly, lowering your omega 6 intake and uping your omegas 3's will help.

have they checked your gall bladder?  You can get nausea and so forth from a bad GB.
not all GB stuff shows up on ultra sound though, a Hidascan is the definitive test there.
hope you'll be feeling better.  
Also, ask for an IGF-1 test to see if you are making any growth hormone.
You said, you need testosterone, thyroid and have diebetes....what are the chances that your pituitary is therefore not working right?? Pretty good actually.

mb
1225178 tn?1318984204
I'm sorry to hear that things are so bad for you. It does seem that once we reach menopause everything goes down the tubes.

I have a sister-in-law who had a lot of your digestive symptoms, and got tested for all kinds of things for over a year. Then one day she was reading the papers that came with her Ambian and saw that a lot of her symptoms were listed. She stopped the Ambian, and the symptoms went away.

I'd read ALL of those papers if I were you. It would be great if just stopping something cured you.

Hope things get better for you soon.
12773 tn?1328916786
Well the doctor does not want to take me off the Welchol, says I can reduce the dose, but that I still need to take it, she also told me to get some niacin, but only a small dose of it daily, and she will recheck it in 3 mos.  
She also said the tests for Rheumatoid arthritis came back negative, but that she feels its fibromyalsia, and she put that on the disability papers back to the nurse case worker at the companys Short term disability co.   So waiting on a call from her today, to see if she is going to continue to approve my time off.   Just waiting on that approval is stressful..     I was feeling better this morning, but by the time I left the drs office , my stomach was cramping up so bad.   I am sure nerves have alot to do with it right now.  
12773 tn?1328916786
I forgot to answer you about the Gall Bladder.     I had that removed in 93.  Thats when they also found the HepC.. and I went thru treatment the first time.    Besides the ulcers in my stomach, I am sure all the medication I am taking is not helping the stomach to heal,   I still have inflammation of the esophagus and stomach I am sure.  I hardly have a voice, due to the inflammation .  If I was to go back to work and have to be on the phone all day, my voice would be gone in just a few hours., not to mention the inablility to sit that long, and being able to get up to run to the bathroom, at anytime.  Hard to do when you work in a call center.  

Yes I did google Welchol and all the symptoms I was experiencing , were side effects of the medication.     And interacts with my thyroid medication as well., so been having to be sure to take those at least 4 hours apart.  so I am sure the meds have something to do with the continuation of symptoms, but the dr does not want to take me off of it. says just to reduce the dose to 1 pill twice a day instead of 2 twice a day.
Definitely tired of being sick and just over all pain daily.
Avatar universal
So very sorry to read all of the post issues Dana.
Keep in touch !
233616 tn?1312790796
have you considered trying a new doc...I know we get to feeling loyal...but you should not have this going on this long without resolution.
If they know you are in this constant of pain etc...and are telling you to just stay the course something is wrong.

WRONG....please consider getting a different set of eyes on this...you are doubled up in pain, can't speak, etc....and you doctor says just take the pills...that are not helping...

grrr.   You deserve better than that.
338734 tn?1377163768
Dana,

I am really glad to hear from you again. I remember when you got SVR. I was so happy and certainly wish you so much better than you are getting. I wish I could say or do something to help. All I can do is wish you my best. I have to believe things will get better for you. Hang in there!

Brent
12773 tn?1328916786
I am hanging in there.  I went away for the weekend.  Got together with some old classmates from middle school in a little town called Cedar Key .  We had alot of laughs, and alot of fun.  I will admit I did drink, which I have not done in  years now.  But its all good.   I drank on Friday when we got there, and only 2 lite beers on saturday..  but Friday.. I couldnt tell you, they went down so smooth.. and they were sooo cold..  But had a good time.  I think Laughter and relaxation really does good for the soul.  As I was not sick at all, other than swelling of my leg, but we were walking an awful lot, as there was an art festival going on, and walking was the only other way to get around, or rent a golf cart.   I felt great all weekend though, not sick to my stomach once.  Ate alot of seafood.  Fresh oysters, clams, shrimp.. mmm they were yummy for sure.  
Now I am home and my stomach is messed up again...   and my voice is almost gone again.. but was fine while on my trip.    I am puzzled.    I also had to go for my weigh in today at the diet center.  I was so afraid that I gained due to all the xtra carbs in the beer.. but actually lost an ounce.. LOL   so its all good.  getting ready to go for my 2nd walk today.  Gotta keep my strength up somehow.    I will keep in touch and let you guys know how its coming along..  
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