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