Aa
Did anyone out there have RA before they started HCV Treatment?
It seems a lot of folks develop Arthritis during or after treatment but I can't seem to find anyone who had chronic Rheumatoid Arthritis before HCV treatment. I am going to start tx soon and have heard many different opinions from the doctors but it would be great to hear from someone who actually was on RA meds i.e. Biogenetics (Enbrel, Remicade etc) as well as prednisone and anti-inflammatories during treatment and what their out come was.
Thanks,
Mikki
Thanks,
Mikki
Hey gal, how is the Alinia doing for you - any sides at all. I'm still wondering if I might add that into my mix. I've got the paperwork on it and will bring to my UCI visit on the 27th. I'm hoping to get the OK to go then.
I just have one more thing to do first - An Eclast I.V. infusion (you'd hate that). It's a bone hardening thing for the ostio. It's pretty cool - lasts a whole year. Guess the HCV really tx is really hard on the bones as well.
My sis and mom just arrived from Santa Rosa. We have a big garage sale this week end (fri-sat). Have to empty her big storage shed (she had 2 strokes). You So. Cal gals (4c, deb, wassup) should come on over! Lots of fun cheep/free stuff. So I won't be on line as much.
Hugs
I just have one more thing to do first - An Eclast I.V. infusion (you'd hate that). It's a bone hardening thing for the ostio. It's pretty cool - lasts a whole year. Guess the HCV really tx is really hard on the bones as well.
My sis and mom just arrived from Santa Rosa. We have a big garage sale this week end (fri-sat). Have to empty her big storage shed (she had 2 strokes). You So. Cal gals (4c, deb, wassup) should come on over! Lots of fun cheep/free stuff. So I won't be on line as much.
Hugs
Interesting comment about the nodules, is there any literature on this?
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No, it's something I've heard, where? -- I don't remember.
I've been RA+ for many years and have no nodules. I've also been HCV+
for many years as well. So wherever I heard it,--- it kinda hit home.
Is it true? I don't really know, I've never looked for any literature on it.
It is interesting though...
enigma
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No, it's something I've heard, where? -- I don't remember.
I've been RA+ for many years and have no nodules. I've also been HCV+
for many years as well. So wherever I heard it,--- it kinda hit home.
Is it true? I don't really know, I've never looked for any literature on it.
It is interesting though...
enigma
wow, you didn't tell me about all that? wow...you've lead an interesting life, to say the least...! here's hoping that this stuff only does you some good, seen it happen!!!!
Great stuff thanks!
Very interesting on the genetic RA - I don't have typical nodules but do have lumps in my arches that are quit painful. I don't think anyone in my family had it but - CHECK THIS OUT - mine may have been chemically induced. I worked on the space shuttle for 9 years (taught how to bond the tiles etc) I was exposed to silica and lots of harmfull substances and chemicals dailey. Everyone was sick all the time. Years later after I had moved to Texas and returned to CA I found out I had missed out on a huge law suit - that 25 of my team members had died and most that were left were very sick. Many had RA, Cancer, Lymphomia etc. The statue of limitations had expired so I persued my own case but my medical expert was recalled on an apeal from Dow chemical and I lost the case. (would of been 2.5 million).
But on a good note I went on to create a global university for Warner Bros. And got to travel the world - so glad I had to keep working.
Funny how everything seems to happen for a reason.
Very interesting on the genetic RA - I don't have typical nodules but do have lumps in my arches that are quit painful. I don't think anyone in my family had it but - CHECK THIS OUT - mine may have been chemically induced. I worked on the space shuttle for 9 years (taught how to bond the tiles etc) I was exposed to silica and lots of harmfull substances and chemicals dailey. Everyone was sick all the time. Years later after I had moved to Texas and returned to CA I found out I had missed out on a huge law suit - that 25 of my team members had died and most that were left were very sick. Many had RA, Cancer, Lymphomia etc. The statue of limitations had expired so I persued my own case but my medical expert was recalled on an apeal from Dow chemical and I lost the case. (would of been 2.5 million).
But on a good note I went on to create a global university for Warner Bros. And got to travel the world - so glad I had to keep working.
Funny how everything seems to happen for a reason.
They would be me on 20mg of prednisone a day when I would flare and I would have to go through the weening down process by 1/2 a pill each 10 days.
X -
My RA is DEFINATELY genetic. Interferon just hastened the problem for me. My Mom had it so bad she was in a wheelchair and was very deformed. Interesting comment about the nodules, is there any literature on this? I have nodules on my elbows. Matter of fact I have one on my left elbow that keeps getting infected since i've been on this 2nd round of tx.
Mouse
X -
My RA is DEFINATELY genetic. Interferon just hastened the problem for me. My Mom had it so bad she was in a wheelchair and was very deformed. Interesting comment about the nodules, is there any literature on this? I have nodules on my elbows. Matter of fact I have one on my left elbow that keeps getting infected since i've been on this 2nd round of tx.
Mouse
Yes, my RA is seropositive.
One thing I did hear is that if you get the nodules on your joints and you are RA+, it is genetic.
If you are RA+ and you don't get the nodules and are HCV+, it is from the HCV.
Whether this is true or not, I dunno, just something I've heard.
I won't use any steroid while tx'ing and did very seldom pre-tx.
I believe that your RA pain will also lessen with tx.
I also believe you will be able to handle the sides better than most...Why?...
Because you know pain, you know flares, you know that flu type feeling. It's not new to you.
Those with no sides pre-tx have a harder time with sx's on tx.
(That's just my opinion from what i've read on this board over the last 4-5 years and from my personal sx's from my tx)
IMO- I believe tx may help you feel better, get rid of the virus so your body isn't in overdrive fighting all the time.
You don't have a high vl which shows me your body (Genes-immune system) is keeping the virus in check, & you feel it.
enigma
One thing I did hear is that if you get the nodules on your joints and you are RA+, it is genetic.
If you are RA+ and you don't get the nodules and are HCV+, it is from the HCV.
Whether this is true or not, I dunno, just something I've heard.
I won't use any steroid while tx'ing and did very seldom pre-tx.
I believe that your RA pain will also lessen with tx.
I also believe you will be able to handle the sides better than most...Why?...
Because you know pain, you know flares, you know that flu type feeling. It's not new to you.
Those with no sides pre-tx have a harder time with sx's on tx.
(That's just my opinion from what i've read on this board over the last 4-5 years and from my personal sx's from my tx)
IMO- I believe tx may help you feel better, get rid of the virus so your body isn't in overdrive fighting all the time.
You don't have a high vl which shows me your body (Genes-immune system) is keeping the virus in check, & you feel it.
enigma
so glad you got some responses here...I knew you would, they are a helpful bunch...I really feel for your RA...my mom has it so bad she can only use two fingers on either hand...she saw my dog kind of limping from *her* arthritis, and my mom said, oh, sweetie, if she has this that bad...you should put her to sleep! WHAT??? My mom never complains about it, but for her to suggest that, she must really be in pain...my doggie seems to be better when I give her the expensive glucosamine, chondritin whateverthinga magingie.....and once she exercises...both of them, my doggie and my mom...I was going to talk to her about Embrel, the stuff you told me about....all my best to you!!!!!!
Glad to see you found some support finally! it is all so confusing!
I just found someone who svr on infergen as well, it was so good to talk to someone to talk to about. Good some one went svr on it. Do not think I have met anyone on here who is on infergen.
hugs
Deb
I just found someone who svr on infergen as well, it was so good to talk to someone to talk to about. Good some one went svr on it. Do not think I have met anyone on here who is on infergen.
hugs
Deb
Are you seriopositive (Do you have the crippling type of RA)?
I'm beginning to think this may be the difference in whether it get's better or worse with tx. Only a theory again - but it seems that the bad kind get's better and the seronegative may get worse. You will know if you have it because your joints deform rapidly like mine and you have to get on the biogenetics to stop it. I had to get double foot surgery 5 years into it - took all the balls of my feet out (I'm now a size 5 instead of 7) so that I could walk. but I get around OK now. I do great when I'm on my horses.
Mouse - how much prednisone were you on? was it daily or just when you had a flare? They seem to think I may be able to continue my 5-7 mg p/d on tx. it seems to be the only thig that helps with the pain and inflamation. I also take darvacette once in a while and Soma at night if it's unbearable. I have not tried the Tramadol...how is it on your tummy - (I take prilosec and multidopholos etc. due to IBS)
I'm beginning to think this may be the difference in whether it get's better or worse with tx. Only a theory again - but it seems that the bad kind get's better and the seronegative may get worse. You will know if you have it because your joints deform rapidly like mine and you have to get on the biogenetics to stop it. I had to get double foot surgery 5 years into it - took all the balls of my feet out (I'm now a size 5 instead of 7) so that I could walk. but I get around OK now. I do great when I'm on my horses.
Mouse - how much prednisone were you on? was it daily or just when you had a flare? They seem to think I may be able to continue my 5-7 mg p/d on tx. it seems to be the only thig that helps with the pain and inflamation. I also take darvacette once in a while and Soma at night if it's unbearable. I have not tried the Tramadol...how is it on your tummy - (I take prilosec and multidopholos etc. due to IBS)
Thanks for all your input - I think I'm starting to get my hands around this. Saw my Rumatologist today - she too believes there's a chance that my RA will lessen with tx - because it is fighting so hard now. I have had 15 surgeries in 14 years, she said even if I don't have cryo's that my RA is still made worse by the HCV and that it should get better. If only I would of known sooner - like 36 years ago - UGH. I think if you have mild RA going into it that it can get worse - ony a theory from info I've heard.
I also got my Hep B shot today - they were out of the Hep A again (2 months now). What amazes me is that these virises are practically an epidemic but if the public were to be told that - there is no way they could vacinate everyone.
I also got my Hep B shot today - they were out of the Hep A again (2 months now). What amazes me is that these virises are practically an epidemic but if the public were to be told that - there is no way they could vacinate everyone.
I actually started the RA meds (Humira, Methotrexate and Prednisone) about 6 months before I went on my 2nd round of treatment.
I take Tramadol for pain. I don't want to move into the narcotics for pain control since this is going to be a long term issue. Tramadol really does seem to take the edge off for me.
Once I'm off this round of treatment I will be able to stop the Celebrex (and Rx Prilosec they have me on to protect my tummy) and will be able to go back to the Prednisone as needed.
Good luck to all.
Mouse
I take Tramadol for pain. I don't want to move into the narcotics for pain control since this is going to be a long term issue. Tramadol really does seem to take the edge off for me.
Once I'm off this round of treatment I will be able to stop the Celebrex (and Rx Prilosec they have me on to protect my tummy) and will be able to go back to the Prednisone as needed.
Good luck to all.
Mouse
Not quite RA, but I had a bout of Reactive Arthritis before treatment, and some early signs of AS (essentially an arthritis of the spine). I have HLAB27, a tissue type assoicated with immune / arthritis issues.
I had no reccurencies on treatment of peg-intron and Riba. If anything, my weight loss over the course of the treatment seemed to help me, it has taken weight of my knees (which have some lasting nerve damage from the arthrities), and my back.
I had no reccurencies on treatment of peg-intron and Riba. If anything, my weight loss over the course of the treatment seemed to help me, it has taken weight of my knees (which have some lasting nerve damage from the arthrities), and my back.
I also want to mention that vl's fluctuate all the time--daily as a matter of fact.
You testing 3 weeks apart really means nothing. I saw over the course of 4 years
that it kept going up, which in my mind meant my body was having a difficult time fighting the virus. I jumped from 1.2 million to 5 million and it stayed there for awhile.
I decided then to tx.
You testing 3 weeks apart really means nothing. I saw over the course of 4 years
that it kept going up, which in my mind meant my body was having a difficult time fighting the virus. I jumped from 1.2 million to 5 million and it stayed there for awhile.
I decided then to tx.
My cryo's always come back negative, I have that test yearly even though my rheumy says I have symptoms (which I have had for years)
My vl's were over 4 years time, but the latest 5 million ones were a few months apart before tx'ing. My flares got real bad, and the extra hepatic manisfistations were worse (Sjogrens, raynauds etc) I could barely walk, and get out of bed to go to work. My body was fighting hard and I felt it--- It was then that I chose to take a chance and tx.
I have never been on RA meds like methotrexate, Remicade, Enbral etc...
I take pain meds and have for years. Each year the doc switches me
from one to another. (Darvon to Tramadol to Anexia, Celebrex, etc)
Since being on tx I am on Norco.
It's hydrocodone with 325mg of tylenol per pill.
I can take up to 2 a day if needed. Sometimes I just take a half pill and one tylenol with it. I do want to mention that Tramadol/Ultram is very difficult to stop (Harder than Vicodin/Lortab) It works like a narcotic pain reliever but isn't one. Withdrawel (for me) was horrible from it.
I have been clear of the virus since wk 12, (18 weeka to go) if I attain SVR and still have RA pain, I will then consider the strong meds. But until then, I just take the edge off the pain with the Norco.
It works for me and helps me get through my work day.
My vl's were over 4 years time, but the latest 5 million ones were a few months apart before tx'ing. My flares got real bad, and the extra hepatic manisfistations were worse (Sjogrens, raynauds etc) I could barely walk, and get out of bed to go to work. My body was fighting hard and I felt it--- It was then that I chose to take a chance and tx.
I have never been on RA meds like methotrexate, Remicade, Enbral etc...
I take pain meds and have for years. Each year the doc switches me
from one to another. (Darvon to Tramadol to Anexia, Celebrex, etc)
Since being on tx I am on Norco.
It's hydrocodone with 325mg of tylenol per pill.
I can take up to 2 a day if needed. Sometimes I just take a half pill and one tylenol with it. I do want to mention that Tramadol/Ultram is very difficult to stop (Harder than Vicodin/Lortab) It works like a narcotic pain reliever but isn't one. Withdrawel (for me) was horrible from it.
I have been clear of the virus since wk 12, (18 weeka to go) if I attain SVR and still have RA pain, I will then consider the strong meds. But until then, I just take the edge off the pain with the Norco.
It works for me and helps me get through my work day.
Thanks for your comments
Mouse -
Sorry you have to tx soo long, were you on any of the RA drugs when you relapsed the first time? I have had RA for almost 14 years but have always had my energy until I became chronic with HCV. In the last 9 monthsnthat my ALT and AST have been elevated my energy has been 1/2 what it was. So hopefully when you beat this thing you will get yours back too. We'll keep the hope going...
Xenigma -
sounds encouraging...I too have very weird VL - the three I have had taken are all 3 weeks apart from each other. The first was onky 43,000, the second was 3,750,000 and the last one was 680,000. Do you have cryoglobiums in your bloodwork? They say that causes arthralgia - that can go away after tx. I don't have them.
I feel the same way as you did - it sure doesn't seem like it can get worse. Where you on RA meds? Which ones? thanks
sldb -
Lucky you - SVR and you probably had the arthrailgia I mentioned above. I was so hoping mine would come back positive...what geno were you?
Mouse -
Sorry you have to tx soo long, were you on any of the RA drugs when you relapsed the first time? I have had RA for almost 14 years but have always had my energy until I became chronic with HCV. In the last 9 monthsnthat my ALT and AST have been elevated my energy has been 1/2 what it was. So hopefully when you beat this thing you will get yours back too. We'll keep the hope going...
Xenigma -
sounds encouraging...I too have very weird VL - the three I have had taken are all 3 weeks apart from each other. The first was onky 43,000, the second was 3,750,000 and the last one was 680,000. Do you have cryoglobiums in your bloodwork? They say that causes arthralgia - that can go away after tx. I don't have them.
I feel the same way as you did - it sure doesn't seem like it can get worse. Where you on RA meds? Which ones? thanks
sldb -
Lucky you - SVR and you probably had the arthrailgia I mentioned above. I was so hoping mine would come back positive...what geno were you?
I've been RA+ for many, many years before tx'ing. My pain is better on tx.
We will always be ra+ even if we get rif of the virus but hopefully it won't be as bad (Pain and flares) My body was fighting hard before I starting tx, I was in bad pain daily, my vl went from 760,00-1.2 million then to 5 million for awhile which showed my body was fighting hard and I felt it. Everyone is different and you gotta give it a try to see how you will react. I hope you have an easy time of it and that you do feel better...
enigma
We will always be ra+ even if we get rif of the virus but hopefully it won't be as bad (Pain and flares) My body was fighting hard before I starting tx, I was in bad pain daily, my vl went from 760,00-1.2 million then to 5 million for awhile which showed my body was fighting hard and I felt it. Everyone is different and you gotta give it a try to see how you will react. I hope you have an easy time of it and that you do feel better...
enigma
Thought i ha RA prior to tx b/c all finger joints were painful and swollen. Rheumatoid factor neg. Hep said its just a symptom of hepc, Once i started tx joint pain and swelling went away that was in Dec 2004. 18mths post tx (svr) hasnt returned. I did extended tx.
I'm actually going to be doing 72 weeks. Shortened treatment is out of the questions for me since I'm a relapser.
Don't put too much stock in getting your energy back. RA screws that up big time which I'm sure you know. I am like you. Had I not treated I would have always wondered "what if" and the anxiety would have drove me nuts. I would have made the same decisions as you. .
Good luck and I'm here for ya.
Mouse
Don't put too much stock in getting your energy back. RA screws that up big time which I'm sure you know. I am like you. Had I not treated I would have always wondered "what if" and the anxiety would have drove me nuts. I would have made the same decisions as you. .
Good luck and I'm here for ya.
Mouse
Thanks for the updates - I recall a few threads in the past about this but had forgotten who it was. That is good that you are doing OK - My RA is so bad now that I can't imagine it worse.
Are you going to do the full 24 weeks? Did they mention a shorter time if you were UND at 2 weeks? They are talking about that with me - 16 weeks. I have to stay on at least 5 mg of prednisone - It's controlling my adrenal gland now after 13 years. But one of my docs says I should be OK at that low dose. One doc wanted me to wait because I am only stage 1 but because of all of the following I want to start now.
Ten good reasons to get this over with now!
1.) People who treat earlier have a better response rate
2.) I am healthy as I will ever be today (I have RA and get worse everyday)
3.) New Drugs that are promising are at least 3 years out.
4.) Insurance is good now – it get’s worse every year
5.) My anxiety will increase with every day that I wait
6.) I want my energy back!
7.) I do not want to end up with more hepta manifistations
8.) I don't want this negative stigma (as others see it) hanging around my head and my families for years to come
9.) I want to show my horses again
10.) I want to be normal again which includes fine wine with fine food at fine restaurants
Are you going to do the full 24 weeks? Did they mention a shorter time if you were UND at 2 weeks? They are talking about that with me - 16 weeks. I have to stay on at least 5 mg of prednisone - It's controlling my adrenal gland now after 13 years. But one of my docs says I should be OK at that low dose. One doc wanted me to wait because I am only stage 1 but because of all of the following I want to start now.
Ten good reasons to get this over with now!
1.) People who treat earlier have a better response rate
2.) I am healthy as I will ever be today (I have RA and get worse everyday)
3.) New Drugs that are promising are at least 3 years out.
4.) Insurance is good now – it get’s worse every year
5.) My anxiety will increase with every day that I wait
6.) I want my energy back!
7.) I do not want to end up with more hepta manifistations
8.) I don't want this negative stigma (as others see it) hanging around my head and my families for years to come
9.) I want to show my horses again
10.) I want to be normal again which includes fine wine with fine food at fine restaurants
MO is right...
I do have RA. I had tested positive for RA about 5 years before I ever did my first round of treatment and did not even know it. About 2 months before I finished my first round of treatment (I did 48 weeks) I began to show severe symptoms with the RA.
I started my second round of treatment on December 11, 2007 and am now 14 weeks in. I was already on a biologic (Humira) when I started as well as low dose methotrexate and as needed Prednisone. I had to get evaluated at Shands at the Universirty of Florida in order to get the go ahead to try treatment again as Interferon is contraindicated in people with RA.
I learned and lot and I'm glad I went to Shands. They taught me the following:
1. I have advanced liver damage (Stage 3/4, Grade 3) and since there are no treatments coming down the pipline in the next 10 years that are without interferon, persons with advanced liver damage really have no choice but to attempt the treatment (in my case to attempt it again).
2 There are reports starting to come out that indicate that the biologics (such as Humira, Enbrel, Orencia,Remicade, etc.) may actually enhance the effects of Interferon.
3. They will not let me use Prednisone or any other steroid during the first half of my treatment should I have a severe flare. Apparently steroids can really mess with the treatment. They started me on Celebrex the same day the started my second round of treatment and so far with the Humira, Celebrex and Methotrexate I've been able to keep my flares to a minimum. I won't lie to you.... it is a painful process but it can be done.
Hope this helps some.
Mouse
I do have RA. I had tested positive for RA about 5 years before I ever did my first round of treatment and did not even know it. About 2 months before I finished my first round of treatment (I did 48 weeks) I began to show severe symptoms with the RA.
I started my second round of treatment on December 11, 2007 and am now 14 weeks in. I was already on a biologic (Humira) when I started as well as low dose methotrexate and as needed Prednisone. I had to get evaluated at Shands at the Universirty of Florida in order to get the go ahead to try treatment again as Interferon is contraindicated in people with RA.
I learned and lot and I'm glad I went to Shands. They taught me the following:
1. I have advanced liver damage (Stage 3/4, Grade 3) and since there are no treatments coming down the pipline in the next 10 years that are without interferon, persons with advanced liver damage really have no choice but to attempt the treatment (in my case to attempt it again).
2 There are reports starting to come out that indicate that the biologics (such as Humira, Enbrel, Orencia,Remicade, etc.) may actually enhance the effects of Interferon.
3. They will not let me use Prednisone or any other steroid during the first half of my treatment should I have a severe flare. Apparently steroids can really mess with the treatment. They started me on Celebrex the same day the started my second round of treatment and so far with the Humira, Celebrex and Methotrexate I've been able to keep my flares to a minimum. I won't lie to you.... it is a painful process but it can be done.
Hope this helps some.
Mouse
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