Continued Discussion of Post-Tx problems, rib and spinal pain...etc. (Eisbein)

[DoubleDose]

I wanted to open a new thread on this topic, because the thread way below from a few days ago under 'relapse' is almost full.

The issue of ongoing problems after successful tx (and unsuccessful tx, for that matter) seems to be of interest to many on the forum, and ranges from problems with depression, joint pain, rib and mid-body pains, erectile dysfunction, thyroid issues,eye problems,and you name it, etc.

My current problem, which has really flared up in the last two months, is intense rib and spinal pain, ranging from the hips (mostly right side) to mid-back, shoulder blade and ribcage (again mostly right side).

Any forum members with comments or questions on these issues are welcome to enter the discussion.  There is no readily available body of knowledge out there as of yet, regarding post-tx longterm side effects.  The drug companies are not jumping up and down to do retrospective studies on these issues, and most of the doctors seem to downplay the prevalance or even existence of these interferon related after effects.

Many of us seem to be wondering how to address post-tx problems, and I would like to hear what our members are experiencing AND doing about their sx.  What have your doctors said in regard to these problems???  

Thanks for input, and further questions, problems, etc.

DoubleDose

[DoubleDose]

You are absolutely right!  Some people have little or no symptoms from HCV, others have joint pain, dry eye, gastro problems, fatigue, etc.   I had the gastro stuff for decades, from the HCV...and it cleared up a good bit after tx....only to be replaced by a myriad of other interferon induced, post tx symptoms!  Oh well, sometimes its all a trade off....

And in that same vein, some people that treat have little or no after effects from the interferon, while others at the far end of the spectrum can be almost entirely debilitated....with neuropathy, brain fog, bone pain, rashes, deep fatigue, raised BP, thyroid damage, etc., etc.   Its all very much an individual response thing.  For some people they may have immune systems that are completely turned into hyper driving, over stimulated, auto-immune inducing machines...that just keep going, long after the interferon is withdrawn.  Its all a crap shoot.  Your pains are also characteristic of auto-immunity, maybe provoked by your immune system response to the HCV.  It sounds a lot like costochondritis, and you can find LOTS of info on the internet about the condition.  There are even Costo forums, just like our HCV forum.  At least you could discuss this potential diagnosis with a good doc, and see if they can test for it.  I had the costochondritis from time to time before tx, but after tx it became worse, and more frequent.  I have to believe it is the immune system driving the response.

DoubleDose

[UKgirl55]

Glad you brought this up! I have RUQ pain, pain under the R rib...goes around and up the R rib cage and referred pain that goes through to my back a little to the left of my right shoulder blade. It's worse when I sit down (mainly when I'm driving). I was just dx'd as having neuropathy from removal of my gall bladder. I am NOT buying it! I of course have Hep C...my digestion is awful. Just because most people with Hep C don't have these symptoms, it doesn't mean they don't exist with others.

[DoubleDose]

I sure hear you!  Sorry about the many post-tx problems, but I think we have plenty of company.  I am amazed when I go back and look at many of the past threads on post-tx problems, at just how many of us have voiced these issues over the past five or more years.  Many of the past posters have been forgotten, and the threads have become old and unread.  It is a true eye opener to review the related threads, and see how many of the posters' symptoms fit the same profile, and the level of severity of the complaints.

That's when I just love the folks who say....very rare....probably due to aging,....its only because you did extended tx, ...its just in your mind....or it must be coincidental....etc., and on, and on.  Apparently there are a TON of these 'odd coincidence' cases out there...and imagine how many there are out there who aren't even familiar with this forum!!!  And my all time favorite.........drum roll........We should never bring up these issues on the forum...It might just discourage someone from treating!!!!!

Yeah, let's just pretend, and keep everyone in the dark, and act like there is no chance anyone might be seriously or adversely affected by the tx.  They might be too immature, or too weak to deal with such knowledge, and evaluate the issue in their decision making process.  Sometimes I think just MAYBE the biggest complainers about discussing long term sx, could just be those that most fear that it might happen to them after tx!  THEY just don't want to know or hear anything about it.  

I fully believe information should be open, and shared...and as long as it is just provided honestly as one person's personal experience...then it is exactly what we are all about on the forum.  If we can't share our experiences, both good and maybe sometimes, bad, then what are we discussing here????  

Best wishes to you on finding some relief.  It is a very difficult quandry to be in.  No real answers YET out there...and a general reluctance to study the problem.  

DoubleDose

[otterwatcher]

yes pain in right rib cage started about a year b4 tx,disappeared during tx,reappeared at completion of tx and is still there 5 yrs post tx.Also chronic fatigue,muscle and joint pain,numbness and tingling in hands and feet,sore dry eyes and mouth etc etc. and yes I blame the tx for 95% of my current health probs-they all started with the tx and have progressively worsened since then. painkillers don't work-won't take anti d's again either

[kat27]

i'm kinda clueless here.  i finished my tx about 2 years ago.  i guess i was so scared about the hep c, i rushed into tx.  i didn't even care or think about the side effects after tx.

i think i'm a different person now.  i'm depressed, i've gained weight, my heart feels funny, i have weird rashes on my legs, bone spurs, vision problems, i can never seem to get it together, used to have alot of energy. i don't even have the energy to capitalize, nor do i care.

[GoofyDad]

I have sometimes have had abdominal discomfort that I alternatingly attributed to liver pain, or just a mild IBS type condition. That went on for years. In the year before starting tx, I noticed that the compression caused by my kid whacking me in the belly really sent a schockwave through the abdominal cavity. This is probably about the time I was entering stage 4.

I cleared by week 4 of tx, and since then that abdominal stuff has been gone, gone, gone (and don't let the door hit you). I'm on week 25/26.

Next I'm hoping to do something about this sardine-like halitosis :( Until then I just take a spoon of mustard and olive oil sauce followed by crackers, a few times each day. It all blends together quite nicely, not unlike the perfumes wafting from a Sicilian deli.

[jmjm530]

My understanding is that there are no pain receptors in the liver and therefore costochondritis -- which is fairly common -- would be one of the first things a doctor would investigate when someone complains of liver pain.  I have read various theories (mostly here :) ) about the relationship between costochondritis and hep C and/or tx drugs, but never investigated it independently.

Overall, I fall somewhere in the middle of these discussions, firmly believing that there are real long-term risks from the treatment drugs, but at the same time -- as often said by kalio -- many of the complaints you hear are very common in certain age ranges, regardless of Hep C.

What may happen however, is that the physical stress of treatment, may age us a little -- it certainly runs us down -- and therefore bring out some of these aches and pains earlier.

What is safe to say is that there still is a lot we don't know about this disease, its treatment and the ramifications down the road.

Hopefully you're making best efforts to enjoy your SVR beyond the problems you're having. You did mention earlier going on a fitness/nutritional program and that made a lot of sense. Just keep in mind that athletes who really push their body can be the first to become arthritic. LOL. No free lunch here I'm afraid. Not even any food stamps :)

-- Jim

-- Jim

[DoubleDose]

Very interesting indeed!  The costochondritis problem might just be responsible for much of the rib and abdominal pain that many with HCV seem to experience, as well as those on tx.  

I wonder if it is really a typical extrahepatic symptom of HCV, and that very few people are realizing that their 'body pains' may be more rib generated than anything else.

Anyone else reading this thread, please feel free to comment on your particular experiences with rib, chest, or upper abdominal pain, liver pains, mid-back, and shoulder blade problems.
If anyone has active, current problems of this nature, you might want to press on the ribs in the rfront and in the back to see if this elicits more pain.  Also, twisting the upper torse in different directions can also produce pain, if it is a costochondritis type issue.

If it is indeed all related to the autoimmune aspects of HCV, and of Interferon therapy, then at least we are on a path to some sort of potential treatment.

DoubleDose

[Califia]

Alright, let's face it, we're all just groping in the dark, but as a group betcha  we have more than our fair share of hindsight.   [ouch]   As for seeing clearly into the future,  that's why we keep Forseegood around.   Give that woman a top hat and a white cane and let the tapping begin....

[bwave2u]

that is great news for you. thanks & keep on sharing.(pre & post tx sx:) the web sites i get reffered to, and trust me, i am very grateful for the sites! sites on clinical trials and such. I can't read a word of it. so i guess i'll literally be lead blindly into my next round of whatever they throw at me:) Peace, & take great care.

[Califia]

bwave:  If only we could change the font on these comment boxes.  It's like typing with the eyes closed.  Btw, just to share a little good news for a change, my lousy vision on tx cleared up within 3 months off the drugs.   Even the little retinal hemmorhages repaired themselves.

DD:  Curioser and curioser.  You may or may not remember that both I and Britgirl, was it, or Layla?  were diagnosed with costochondroitis during treatment.   Inflammation of the ribcage, upper left side for me, and no, we're not talking Manhattan--and what a blessed relief it was to discover that it wasn't cardiac related.   So here's a crazy idea.  What about a little self-treatment with medicinal mushrooms, reishi and cordyceps in particular, which are known to modulate the immune system?   Paul Stamets's site contains a wealth of information.   He's an internationally known mycologist, very generous with his time, and willing to respond to email questions about medicinal fungi.   I mean, maybe we gotta get a little off-road with this one, because waiting another three or five or ten years for a medical miracle could really try the soul.

[bwave2u]

dd,
I don't feel the liver feels pain, just pressure from inflamation. just my opinion. I do think mostly you are on the right track. If the liver isn't working properly it has slowed function, things aren't getting broken down as fast as they should, causing Gi problems which can cause terrible trunkal pain. Ribs, spine, abdomen, side pain, even making you feel you're having lung problems because every time you take a breath it hurts all the way to your shoulder blades. just my opinion.
sorry you have had such a rough time of it and still are. you sound like a trouper. we have very simular post tx sides. If i find out anything else i'll post it for you. if i can keep my brain working long enough:)
Cali & others that feel we should post our opinions & experiences pre & post tx i think you are completely right. this is what this fourm is for-to learn what we can from others & what they have been thru. Also, what a devastating thing to have to go thru! Dr's only tell you as much as you know to ask them. yes we all probably had several before dx sx that we just thought was life. chronic daily headaches, unexplained fevers &chills, increased joint pain. to find out from others that are post tx if these things happened to get better for THEM, thier experiences, can either give you hope or leave you more informed to bring these things up w/dr. you should feel welcomed to ask any question, discuse any troubles youre having figuring out stats on tx, fears, and any sx you might be having. Also tx causes eye sight problems as I have. blind as a bat! and frankly it's hard to read all the www sites about hcv & sx, very small text! So if you can find what you're looking for here that's great so keep posting! peace.

[DoubleDose]

See the attached link describing 'costochondritis', which is the closest condition I can find that describes my post-tx symptoms.  The real interesting thing is the comment that :
Costochondritis is associated with AUTOIMMUNE disease....AND...PBC, or Primary Biliary Cirrhosis, which I believe is autoimmune in etiology.

MAYBE this rib, RUQ, mid-back, liver pain syndrome that so many of us have described in the past (that doctors say does not exist, because the liver feels no pain)...Maybe this is the real cause of the pain.  In other words, an autoimmune reaction to the HCV, and/or to the treatment, that manifests as Costochondritis, and feels just like right-side, upper quadrant, liver pain!!!  But the doctors may be right....the liver may not feel pain....we may be feeling the pain all AROUND the liver, in the ribcage, and interconnective tissues and nerves.  Also, there are many nerves connected to the spinal rib junctions along the mid-back that REFER pain the the UPPER ABDOMINAL area, and to the chest.  

I think that THIS may be responsible for much of the much debated RUQ pain that many have experienced from their HCV, and also from interferon tx.  It may have nothing to do with the liver after all!!!!!  

Please read the article linked.  
I had never previously seen the link to autoimmune disease, or PBC!  By golly I think we may be onto something here! What do all of you think????  If you have RUQ pain currently, try pressing on the RIBS in front and back, and twisting the torso, to see if this causes the pain, or triggers more pain.

http://experts.about.com/q/General-Surgery-2076/abdominal-pain.htm


Comments Please!!!!

DoubleDose

[Dov Baer]

My advice for simplehue and everyone.

YOU are responsible for your health and treatment plan. NOT your health care providers.

When you go to the doctor present a written n up to date list of current medications. Have your doctor send you a copy of all lab reports. Keep a copy of the most critical medical chart entries on file at home. If your health care provider won't share this information with you change health care providers.

I am two years post liver xplant and my medical file at home is very large. I have copies of all my lab reports.

After my xplant I had the hospital send me a copy of me entire chart. That was probably a mistake since most of the entries were of no value to me and the hospital charged $.50 per page. Be selective.

[DoubleDose]

Mike,

Thanks for the kind sentiments, much appreciated.  I know you went through quite a lot yourself, and I am happy that you are pretty symprom-free after tx.  It really makes it all worthwhile.  I hope you are doing well and feeling better every day.
I try not to get into too much self-analysis on the post-tx symptoms because it can become a distraction and preoccupation.  I still lead a very active life, and much healthier life now, being HCV free, and will continue working at getting rid of the after-tx problems.  As always, I am optomistic.  Take care, and feel great!


Califia,

I really like your style and approach.  You are so right, we are here to merely objectively report what we experience.  Hopefully with enough individual insights and commentary, everyone on the forum will be able to compare notes, and better understand issues, as they relate to them.  It's really just a big medium in which to view the many and varied experiences of a large cross section of people who have had to deal with, or are dealing with, HCV and its treatment.  I value every commentary that provides open, honest, details about an individual's personal experience.
This forum also allows us to see interesting similarities with other people, learn more about what other doctors are doing and saying, see the results of tx across a large group, and in the last few years to see a huge segment of us achieve SVR, even the previously thought 'difficult to treat' type 1's.

I understand your thyroid issues, and have been adjusting Synthroid dosing for over two years since the tx knocked my thyroid out.  It seems to be a moving target!!  Every time we 'up' the dose of synthroid, the TSH responds and goes to a nice low-normal value, only to creep back up aver six months or so!  I wonder where it will stop?  

Thanks for your open-minded input, and intellectual curiosity about the issues discussed regularly on the forum.  I wish you the very best in overcoming your remaining post-tx problems.  I do believe that therapeutic medications will continue to be utilized in dealing with the array of possible post-tx side effects.  Already we see Synthroid, Anti-Depressants, Rituximab,
Restasis, and other medications being used to smooth out the after effects and lingering problems.  I am very sure that newer and more effective drugs will be used in the near future both to help out during tx, and for the lingering sx after tx.

DoubleDose

[cuteus]

since everytime an opinion is voiced as to what the person believes might also be at work, besides or in addition to  the tx meds, or when they ask for other factors that they would like included for consideration in the speculation, making some feel as if what they are experiencing is not validated, I am staying away from any post tx discussion. Everyone has heard it ad nauseaum anyway.

I hope those suffering so much discomfort find prompt relief, and the answers they seek.

[simplehue]

Hey Beam, ME TOO, I swear, if I could have your Doctors, I would hug them, bow down and even kiss there shiny black shoes. LOL Workin toward better medical staff:)

[MissMiss]

Although I may agree with you in theory, I do believe there are other things to consider.

Support drugs such as Procrit or Neup.  How many had to take these and after tx now have some of the symptons described?

How bad were side effects while on tx?

Is there a difference in the type of HCV?  1b vs 2b, etc?

One other thing I believe very important is how long we had the buggers crawling around in us.  In the thread below asking what symptons folks had before dx or tx, not many posted too much except fatigue and some liver pain.  I, for one, can go back to infection and very clearly note the changes in my life from that day forward.  My list is long and I seem to be in the minority.  Didn't post the symptons then not wanting to sound like a whiner.

I may be fooling myself thinking when I clear (again, I strong hope), that I will be well and fine and be able to catch up on life.  I need to think that to get through the next 24 weeks as it is becoming increasingly hard for me.

Just my thoughts.

missmiss

[Califia]

Funny, I've posted similar messages to DD myself lauding alterative medicine and the power of positive thinking and the importance of setting one's mindset to just getting on with it.  But you know what?  It's not that simple.   I do find it discouraging that everytime someone posts here about symptoms that began during treatment and then continued after tx ended, there's a loud chorus of disbelief  and resentment, as in:  shhh, you'll upset the newbies, oh come on, that didn't happen to me,  you're just getting old and your ancient Aunt Bertha probably had the same kneejerk syndromes, etc.

Truth is, we are all unique organisms  who react differently to treatment and experience a different adjustment period after treatment.   Many of us discover that our physical terrain is forever altered by it.   For example, I developed Hashimoto's during the fourth month of my first interferon treatment in 1990, and my thyroid--and general immunity--has never been the same since.  Naturally the autoimmune thyroiditis was exacerbated on treatment this time around, stabilizing it post-tx has been a slow and difficult process, and it has set off a cascade of other disturbing problems.    I still come here to read because my quality of life is not what it should be after tx, and every bit of information helps me to connect the dots so that I can assist my physician in constructing a treatment plan.

None of us should be expected to do anything more than objectively report the facts.  Immunology is a developing field, perhaps still in its infancy, and autoimmunity is a particularly gray area.   Yes, it's disturbing to raise questions for which there are no answers, but that's actually how science gets conducted.   ( And we are its grateful guinea pigs.)    So perhaps we can approach these posts in the spirit of "It's just information," and leave the disputation aside.   Living with chronic pain and diminished capability is challenge enough.

[mikesimon]

I just want to epress my admiration for your determination. I know you don't want or need me to say that but it's true and I had to tell you how I feel. I also feel for you having to deal with this @#$% after going through all the TX. I choose to believe that your troubles will diminish with time and I will be rooting for you to feel better and better. I hope you can get solace in the fact that your chances of HCC are drastically reduced and that's a big plus. I wish you the best my friend. Mike

[DoubleDose]

Mike,

I used regular Intron and Riba on my first tx, but did the Intron daily, for 8 months.  I was unable to get undetected, so switched to Infergen and Riba (1,200), and did 30 mcg of Infergen (2x per day!) for two weeks (got me fully undetected), and then 15 mcg for the final five months.  Had to cut the Riba in half, to 600 mg., and finished undetected.  Relapsed in one month.  

On my second, and successful tx, I did Peg-Intron at about 2.8 mcg./kg of body weight, or what would be just about double dose for standard tx.  I used 1,200 mg. riba, and plenty of Procrit (2x /wk.), and went for 18 months.  I had gotten undetected at week 19, so the extension was necessary, from a probability standpoint.  I had every sx in the book and then some, but managed to work, run a business, head a family, attend sporting events with the kids, etc.  It was an exercise in developing 'true grit', and I would not trade it for anything, as far as what I achieved medically, and what it did for me from a character standpoint. I have been SVR for 30 months since ending tx.

I do believe many of my sx either developed on tx, or intensified significantly.  The ED was tx induced, and has remained with me since ending tx.  The skeletal pains were mild and infrequent before tx, and during tx were ferocious.  They have come and gone at very intense levels after tx.  Sun sensitivity began on tx, and remains after tx.  I get rashes from the sun now, and begin to feel sick.  Before tx, my body LOVED the sun.  My digestive issues are the main issue that has gotten better after tx than before.  I had a myriad of bowel and digestive problems over the years before tx, but after tx all have resolved for the most part.  My skin is better in tone and color, more moist, body hair growing more normally after tx.

I do think my tx stirred up some sort of continuing autoimmune syndrome, which seems self-perpetuating.  My doctor says the body is still reacting to the antigens to HCV which remain for years after SVR.  That sounds autoimmune to me as well.

Thanks for your follow up.

FlGuy.   As above, some things changed dramatically during tx, and persist today.  I do not think that some of these issues just happened coincidentally during tx, because of aging, nor that they are similar to others in my age group as a whole.  These are more severe, more tx generated, and more auto-immune in nature.
Tx has been documented to cause some pretty significant medical problems in SOME tx'ers, for years after therapy...maybe for some, even permanently.  I do agree some things may be due only to aging, but not those issues that abruptly began right after starting tx, and continued after tx.  Seems tx induced to me.

DoubleDose

[Dale_Ray]

Amen!

[FlGuy]

I

[mikesimon]

I've answered this question before but I may as well again. I don't have any of that stuff you describe and I was on TX in one form or another for quite a while - 3.5 years. I did 1000 mg. Ribavirin only during my last TX which lasted 73 weeks. The rest of the time(104 weeks)the Ribavirin dose was only 800 mg. Also during the first year of TX I was on a reduced dose of regular interferon 3x per week. The second TX also for a year I was on a reduced dose Peg-Intron with the 800 mg. Ribavirin. The last TX and the TX that worked was for 73 weeks of Pegasys 180 mcg. which is the standard dose, and 1000 mg. Ribavirin. I haven't had the greatest luck (with the exception of SVR) so I am puzzled that I don't have any side effects. I am curious about the interferon type and if that might make a difference. What did you take DD? Peg- Intron or Pegasys? Just curious about that. Mike