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

[Bill1954]

LOL, hard as chinese algebra! Thanks, Rev--I may want to plagiarize ?


Bill

[Bill1954]

Ahem-that's plagiarize the phrase, Rev, not the condition!

[bwave2u]

have you cleared? are you speaking of post tx sx as your current problem? do these areas you speak of throb and spasm where you can literally see your shirt move w/the spasm?

[Califia]

Nice little conversation about degeneration, all right.   Or is that degeneracy?


Rev, come on, bro', you never were a straight arrow, and thank de lord for that.

DD, Eisbein has described similar right hip, shoulder and spine pain.   What the heck is going on around here?  Hope she checks in to compare notes.


I could mention the latest diagnostic discoveries re my own neuropathy, but it's sadly anti-climactic after the rousing talk above .  Oh, okay then: looks like Ms. Supplementation has turned up with a B12 deficiency and has been prescribed a year's worth of shots.  What has caused me to block assimilation of  B12 is still unknown....but it definitely started on tx w/ constant tingling of the feet and balance probems.   Pain in hands and elbows got pretty intolerable last week so I started a course of Nortriptyline, which has at least blunted the nasty sensation.  Great drug, this: I manage to have cotton mouth and drool uncontrollably at the same time.

[sunspot]

I

[DoubleDose]

In answer to your questions:  yes, I have eradicated the virus, after an 18 month high dose Peg-Intron/Riba tx.  I have been clear or SVR for almost 30 months (post-tx).  The issues that I mention started within a month of ending interferon therapy and have waxed and waned, come and gone over the past 30 months.  Lately they are back in full force, which is discouraging.

As far as your question about 'throbbing and spasming', I can say this:  The areas that now 'throb and spasm' are the areas that I don't want to throb and spasm. (back, ribs, shoulder, hips, etc.)
The areas that now do NOT 'throb and spasm' are precisely the areas that I would LOVE to frequently have 'throb and spasm'. (I'll leave that to your imagination).  I don't see my shirt move from either situation, though I would prefer to see my pants move.

I do believe we will be hearing more about the long term problems caused by interferon as more people complete extended and high dose tx'es with the newer Pegylated interferons.  My rheumatologist claims to see many patients who are post-tx and present with a 'Lupus-like' set of symptoms and bloodwork.
He said that it was not 'exactly' Lupus, or RA, or Sjogren's, but similar in ways to each, and with a unique blood chemistry profile that places it in the 'autoimmune' disease category.

I am going to try to begin a renewed workout program at a gym, to see if it either helps the joint related sx, or if it puts me in a wheelchair.  Something has to work.

Eisbein has mentioned the use of Cymbalta for Fibromyalgia, and maybe this post-tx syndrome is similar.  I will discuss this with my doctor soon, but am very leery of AD's because the several times in the past that I tried them, I have had immediate and very unpleasant side effects.  The longest I stayed on one, after my first tx, (which also produced post-tx depression)
was about two months...and I had a very hard time withdrawing from the medication.  I had to taper off very slowly...when I tried to go 'cold turkey' I thought I was going to have siezures.  Horrible feelings getting off.

Again, comments from all members are encouraged.  Any post-tx'ers hanging around can help us all by providing some of your post-tx experiences, and how they have been changing/ improving / getting worse / disappearing, etc.

Any changes in pain, FM, or physical symptoms from using a particular antidepressant medication???  Anyone using Cymbalta???

DoubleDose

[simplehue]

I have also had some lower spinal pain, right hip pain, nose bleeds, gums bleeding and weak knees, dizzy spells, the list goes on and some is different day to day for me.
I use the gold bond which is good for the rash, I use tylenol or advil for joint pain and the headaches, I recently started getting the bumps on my tongue so thanks all for the input on that. I bought a new pillow for the neck pain which has helped some, Lexapro for the depression with an increase recently, I drink lots of water and gatorade, I take vitimans and I see a therapist about every 2-3 weeks for the support. I stay away from spicy foods, it causes to much pain and nausa, most foods don't have a good taste anymore. When I am dizzy, I hold on to rails, sit down, or if shopping for gro. I hang on, cause I have fell twice and broke a toe once.

My doctor and his nurse seem as though its all normal for the medication I am on. I am trying to find another doctor at this time. My last visit I took the time to write down what physical and emotional changes had taken place. He told me I didn't have to do that again. The Hep C nurse, by my 7th shot just gave me a bag with a vidio in it of how to do my shots, a book about what to expect on this medication, a container for my used syringes, pamplets and other information about the medication, side effects and what to expect. For every week of blood work, I go to the lab to find I have to go back to the Dr. office to get the paper work because they again didn't send the running order then go back to get my blood work. When they told me to go to another doctor for the sinus infection and I did. When I saw the nurse again and ask if it was important for her to chart what meds the other doc put me on, she said" Oh, No, that is ok. Then I said well I am on prednasone shouldn't you put that on there, as to the affects of my blood work. OH YES I didn't know you were on that! Not to mention that in the beginning after the doctor took me off work, she continued to tell me how I should work and that women are just stronger than men, repeatedly. Then talked about another patient,with hep c where she worked and it happened to be my nephews wife's, co- worker. I was not given a biopsy either, only a ultra sound and blood work. Which now I realize is a bit of a problem. So to answer what my doc and his staff has said in regards? Not much that has helped me at all. None supportive and caring to say the least.

What have your doctors said in regard to these problems???  

I feel at this point, my doctor, just gives me my prescription for my meds and thats about it.

sorry I babbled so much, but I do hope some of the things I said might help you doubledose. Best to you.

[beamishboy]

Hue-sorry 'bout your experiences;wish i could share my docs& med team w/ you-they are GREAT:supportive,patient,concerned,happy,flirty(don't hurt nothing) and most important they listen to Me....

[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

[FlGuy]

I

[Dale_Ray]

Amen!

[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

[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

[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.

[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

[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:)

[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.

[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

[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]

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

[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.

[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]

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]

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....