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Avatar universal

14weeks post tx and having problems

Hello to all. i am now 14 weeks post tx. i did 48 weeks of the pegylated interferon/riba. started with vl 500,00. bx showed grade2 stage 2 before tx. i am feeling very sick now. i just got home from being at ER for 5 hrs. I have so much pain. my mind is trying to recover from tx but my body is having so much difficulty. i have bad pain in me. my heart hurts but had a ecg that showed small murmor but no major problems. my left side under my lower rib hurts and throbs. my right side where my liver is also hurts and the pain shoots to the back. ER doc said my liver counts were very good and i am no longer anemic. i do take protonix for stomach problems cause i have h-pylori and did the 10 day treatment of antibiotics. pain is still there and doc says he cannot give me antibiotics again cause i will always have h-pylori antibodies and i just need to keep taking the protonix. i feel like i am running into a brickwall. i have never had so much pain in my life. the pain on my right side brings me to my knees crying. it is a dull aching pain. i have no gallbladder or appendix so that has been ruled out as being the culprit. i am going to get another gastro doc and will be calling tomorrow to see if i can be seen. i don't know what else to do. the docs say that they cannot find anything wrong and even when i take pain meds it still hurts me. i had a procedure done where they go through the mouth and check the stomach. doc said nothing bad just some inflammation. please give me some advice and maybe some ideas to mention to new gastro doc.
24 Responses
Avatar universal
Real sorry what you're going through.

Maybe all the pain's related to your stomach/intenstines from the GERD (reflux) and ulcers? I assume they scoped you when you say they looked into your stomach. Did they snip a piece out and biopsy it? Something to ask your new gastro.

14 weeks isn't that much time off treatment and hopefully things will slowly get better as more time gets between you and the treatment drugs. If the pain wasn't so severe, I'd just say bide your time cause most of these doctors are jerks and don't acknowledge the link between treatment and post treatment symptons. However, with the kind of pain you describe, you're obviously doing the right thing by seeing doctors and ruling things out.

How about your diet? Do you smoke? Drink? Coffee? Citrus? All can agravate your stomach or intestines. What drugs, vitamins, supplements are you taking? Read the labels and see if any of them can cause gastro upset. You might also ask your doctor about switching PPI's -- from Protonix to Nexium. Sometimes one works better than the other.

Hope you feel better soon.

-- Jim
Avatar universal
Have you tried something as simple as Pepto Bismol to see if it stops the pain? You can't use it on a chronic basis, but if it works, it may give the doctors some clues to your problems. Pepto helped me a couple of weeks ago when I had some gastro pains/bloating no doubt due to a diet adjustment post treatment. I'm also trying to supplement with probiotics and having yogurt daily although I'm not so sure how good that would be for your stomach right now. Lastly, ask your doctor if a sedative might help relax both you and your whole system. Treatment can really shock the system and the body may need time to rest and heal.

Avatar universal
Hi.  I stopped my last treatment on the 3rd week of June. So, I guess that I am at about the same point as you are.  I'm sorry that you're having such horrific pain.  I have pain as well, but it seems to be more of an all over type pain as in muscle type pain mostly.  Arms, legs, lower back, jaw.  I have the itching and the heat problem and the sleep problem, all from coming off of treatment.  It's weird because I sleep better on treatment, than off.  My LFT's are up though, as well as my viral load.  This is because I did not clear.  Refresh my memory, did you clear on treatment?  I am not sure if this matters in regards to post treatment symptoms though.  I think that even SVR people still have some post treatment issues.  Anyhow, I hope you can find some answers soon.

Susan
Avatar universal
I had severe stomach pain around two months post tx or so.  Went to ER thinking it was heart attack.  It was the worst pain ever. They gave me a gastric coctail or something - had lidocaine in it and a couple of other things including metamucil I think.  It fixed it up in minutes - weird feeling though but better than pain.  My digestive system was pretty burned out from tx.  It has gotten better each week, now about 17 weeks out - but it still bothers me.  Just downed three tums before reading this thread. If you have what I had I really feel your pain.  I have to be careful about eating before sleep or the pain gets worse the next day.
Avatar universal
thanks everyone. i am totally not feeling good this morning. i thought maybe a good rest would help but the pain is so strong. my pcp doc squeezed me in for this morning at 9. please pray for me. i'm so scared and have so much pain. i did clear at week 20. the pain, this morning, is most severe in my upper right area of my back then it moves to the front right area. i also feel sick. i have this clamy chill that kinda runs through my body. i have had alot of different issues since tx but this by far is the worse. i know we are all not doctors so i am sorry for bringing this whole mess to you all cause i know we all are not feeling at our best. please just pray for me cause i hurt so bad.

ps. the cocktail they gave me did not even touch the pain area. the pain shot that they gave me in Er did help for about 1 hr then the pain was there even though i was feeling relaxed.
Avatar universal
Having lots of pain after finishing tx is not uncommon for many of us.  My post-tx pains were often focused on the ribcage area, with the worst of the pains being in my mid-back, and upper back.  The pain often radiated into my front ribcage, and felt as if my internal organs were going to explode.  It sometimes felt like liver pain, sometimes like a heart attack, other times like stomach pain.

What I have discovered in the three years since I finished tx, is that most or maybe even all of my pains were and are due to 'costochondritis' related issues.  That is, pain that relates to connective tissues in the ribcage.  It can be rib junctions at the spine, or connective tissues between the ribs.  It can also be in the connective tissues in the front of the ribs, at the breastplate.  Costochondritis is fairly common in autoimmune illness, and I believe that we experience a form of 'autoimmune' disease, in many cases, after all the interferon, and upon its withdrawal.  The pain from Costochondritis can be severe, frightening, and mimic heart attack, ulcer, liver pain, etc.  

You might be able to determine if your pain is Costo related by pushing or manipulating your ribs in various locations to see if you can reproduce any of the pain, or if you find extremely tender spots along the ribs, or junctions.  Costo can shoot right through your midsection, and feel like a 'spear through the body'.  This is the sensation that I experienced during the worst bouts of Costo that I had.  Much of my problems have either faded, or decreased in severity, and frequency.  I still have problems from time to time, but they are not as horrible as the first full year to 18 months after finishing tx.

By the way, did I mention that I have been SVR for three years!  Isn't it nice to find out how curing the virus makes us just feel so much better??????  (Sarcasm intended!)
I thought I had relapsed every month for a year after ending tx, because of all the pain and problems.  I had lots of MRI's done, scans, blood tests, consultations, etc.  What I discovered came from my own research and 'detective work'.  The medical explorations just expended lots of insurance and copay dollars, with almost NO answers.  The medical community has basically no clue as to what is happening with us after tx ends.  

If you do some research on Costochondritis (and autoimmunity), you may find some answers that relate to your problems.  A number of people on the forum also have apparently suffered from Costo during or after tx, and some were actually diagnosed by their doctors!  Miracles do exist!

Also, the autoimmune nature of many post-tx problems may cause severe internal inflammations (like Lupus does) that could also add pain throughout the gastric system, and bowels.  The 'autoimmunity'sometimes caused by treatment is a subject that deserves much more attention and research than it is currently receiving.

I hope this information is helpful.  Best Wishes, and hang in there, it will get better!

DoubleDose
Avatar universal
may i suggest the use of aloe vera? it is a great anti inflammatory and analgesic.  it was called the "miracle plant" by ancient egyptians.

to me it seems like aloe vera, some cumin seeds, and vitamin B complex could do wonders for your case.  B complex vitamins are very good for muscular pain.
86075 tn?1238115091
I'm soooo sorry that youre suffering so much, I hope that as time passes and the inflammation, etc goes down, you'll begin to feel much better, fact, I know you will...best to you...

oh, and I agree about the aloe vera juice, I take it everyday and it does wonders for any tummy probs, etc...at least for me...maybe worth a try? just 2 to 4 oz a day mixed with a little fruit juice for taste and water to make an 8oz drink...course, get the drinkable aloe vera juice and some are stronger then others, which means you take less...give it a few weeks everyday and see if youre tummy feels better...
Avatar universal
forseegood, is aloe vera recommended for those on tx?

i have a huge bunch of aloe vera plants growing in my front yard.  i do make drinks from them sometimes, but its not easy work! they taste yucky, and u have to be careful to put in lots of fruit juice in the blender to mask the taste of the aloe vera gel.

sometimes i challenge my buddies to gulp down raw aloe vera. one friend takes raw aloe vera gel, right off the plant, and eats it sprinkled with a little salt.  in the area where i live, aloe vera is used primarly for gastric problems such as gas and bloating and constipation.  but of course, muscular pain and inflammation are also indicated conditions.
Avatar universal
fresno - I am so sorry you have been having all these problems.  As I recall, you had considerable health problems during tx as well, including a hysterectomy.  How was your overall health prior to tx?  Were you in top shape - no problems?  I wonder if these are all post tx problems, or other issues that have become aggrevated by tx.

I don't understand why some of us have such severe problems post tx.  I do want those starting to know we all don't.  I am post tx by almost 9 weeks (56 weeks of tx) and my worst post tx side effect has been that I have gained the 10# I lost during tx back plus some, I fear. I am still not up to 100%, I admit, but am feeling much better and energy is returning.  Before tx I was healthy, rarely taking a day off, no stomach problems, and a really halthy immune system.  I have to think that must have something to do with what happens after tx --- how fast a system can rebound.

Return to sender - how the heck are you?  Is your system back to normal yet?  Your 3 month SVR was clear, was it not?  Congrats on your SVR on your second attempt
frijole
Avatar universal
Said: By the way, did I mention that I have been SVR for three years!


Thanks...that should put to rest the speculation that there is no "cure" and that the virus is just being "masked" once and for ALL!

WOWOWOWOWOW!  :)
Avatar universal
doubledose...i think i may have that "castro" pain u mentioned in the ribcage.  it is on t he right side, on my back, and twisting my upper body to the left causes it to move to the front.

im 25, infected less than 4 yrs, geno 3, looking to start tx soon.
Avatar universal
Interferon is a toxic garbage,that is what I know.
131817 tn?1209529311
You are absolutely correct Rev. I think it is disrespectful in a way to tell all of us that are txing or have txed that interferon is garbage. For me this is my only hope for SVR at this point and I will take interferon no matter what. We all know it is toxic poison, but to say it's garbage is putting down what most of us think of as a lifesaver.
Avatar universal
revenire... what r ur symptoms of AIH? is it worse than HCV?
Avatar universal
Toxic garbage?

It's certainly BETTER than death by liver damage or liver cancer...or haven't you seen anyone in End Stage before?

I'll take my toxic garbage ANY DAY.  You take the Flintstone chewables then.
Avatar universal
HAHAHA...this is the same guy that I allowed the other day to get "a rise outta me"...LOL...I usually ignore them, but I fell into it..te hee. He is just posting the same thing that got a rise outta me the other day for attention.(calling it garbage) I got upset because he says he has acheived SVR through the same stuff he calls garbage, and there are so many that haven't or are waiting patiently to achieve what he has. So sad it is.
Avatar universal
I'm about 14 wks post myself. I went through severe joint, muscle, bone pain after I was done as well as big skin problems but those are starting to lighten up. My problem is constant upset stomach, had that before I treated so now freaking again.
Avatar universal
There are a LOT of them that pop up for "fun".  Instead of cursing them out when they say this stupid stuff I'm going to TRY to tell them to take the Flinstones.  Something for some reason just cracks me up about an "adult" taking those little chewy vitamins...but then you have to wonder if it is an adult.
Avatar universal
I always say:

Garbage in (Peg)
Garbage out (HCV!!!)

Thank you very much!  lol

miss
Avatar universal
Ok ok...nicely put.
Avatar universal
hahaha..I love the taste of them things! I sneak one of my kids every once in awhile...heeheehee. shhh!!!
Avatar universal
Ina had a pain like what you are describing for months after tx. If it doesn't turn out to be what doubledose suggested, all I can tell you is that Ina's finally subsided after three months, but she had a full body scan that found some "mass" (benign it appears) in her left lung, which might account for some of the pain.  Connective tissue problems might be the reason for the pain. I know that my CTS (carpal tunnel) got so painful after tx (worse than during tx) that it sent me to surgery for one of the hands. On the 4th or 5th month things seem to stabilize, though.
I hope you get some answers, maybe a rheumatologist is needed.
Avatar universal
Wow, thanks for asking, thats so nice.  I guess I talk so much in my posts nobody ever has reason to ask me anything cause I say too much - like I'm doing now.  Yes I was clear on Heptimax at 3 months.  Things are returning to normal - am now about 4 1/2 months out.  Problem is that the further away from tx you get, the further your reference point is to that misery.  Like we used to say, still do, in AA - you can get a lot of sobriety on the novelty of not throwing up every morning.  At some point you are off the tx long enough to look around and make an independent evaluation and say - this is not good, this is not normal, I expected better than this!  Thats where I am, sick of being sick and wanting to be all better.  Was nice reading the great Double D post - fantastic insight and explanation - thats where I would like to be three years post tx.
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