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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.
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