Rheumatoid Arthritis Support Group
Rheumatoid arthritis is a chronic, inflammatory, multisystem, autoimmune disorder. It is a disabling and painful condition which can lead to substantial loss of mobility due to pain and joint destruction. The disease is also systemic in that it often also affects many extra-articular tissues throughout the body including the skin, blood vessels, heart, lungs, and...
It has been going from bad to worse lately for me. I'll try and summarize before my main question/concern.
diagnosed w/RA in 2011
because of HepC , been only on Plaquenil, Prednisone and various NSAIDS plus oxycodone at times
Now, my liver enzymes have stayed up for many many months ; to me, this could seriously mean my HepC is active (have other embarrassing symptoms as well)
but my pain has increased significantly
more joints involved
trouble walking (forget exercise !)
and b/c of my worsening pain and joints he wants to put me on Rituxan, and sent me home with a info packet.
Good grief ! Not only does everything I read about it for RA, say it's used WITH methotrexate (something I can't have) but it says if you ever had Hepatitis B, or are a carrier ( I did , and I am) it can reawaken that, and that is a death sentence to me with the 30 year long Hepatitis C virus already has made my liver bad, plus all the NSAIDS, etc .etc.
BUT on the other hand , I can't live like this. My Rheumie is aware of my different liver disease history and current.
--I might point out, I aquired the Hep C virus before anyone ever knew what it was, and like I said, it was maybe 30 years ago. Because my gastroenterologists always took a wait and see approach, (they don't seem to think it is a big deal UNLESS the liver enzymes go up and stay up...then they consider it to be active)
I am literally feeling like between a rock and a hard place.
I have now gained so much weight my abdomen seriously looks like I swallowed several watermelons making me more miserable.
my BP is up even on 2 meds for it.
I used to always walk alot at least........but my right foot and ankle have gotten so bad in the past few years and now, my left foot toes , the middle ones are swollen and disfigured and painful and I feel like death warmed over.
I don't know what I am asking of you nice people but any thoughts or experiences you can share, I'd appreciate.
thanks.
diagnosed w/RA in 2011
because of HepC , been only on Plaquenil, Prednisone and various NSAIDS plus oxycodone at times
Now, my liver enzymes have stayed up for many many months ; to me, this could seriously mean my HepC is active (have other embarrassing symptoms as well)
but my pain has increased significantly
more joints involved
trouble walking (forget exercise !)
and b/c of my worsening pain and joints he wants to put me on Rituxan, and sent me home with a info packet.
Good grief ! Not only does everything I read about it for RA, say it's used WITH methotrexate (something I can't have) but it says if you ever had Hepatitis B, or are a carrier ( I did , and I am) it can reawaken that, and that is a death sentence to me with the 30 year long Hepatitis C virus already has made my liver bad, plus all the NSAIDS, etc .etc.
BUT on the other hand , I can't live like this. My Rheumie is aware of my different liver disease history and current.
--I might point out, I aquired the Hep C virus before anyone ever knew what it was, and like I said, it was maybe 30 years ago. Because my gastroenterologists always took a wait and see approach, (they don't seem to think it is a big deal UNLESS the liver enzymes go up and stay up...then they consider it to be active)
I am literally feeling like between a rock and a hard place.
I have now gained so much weight my abdomen seriously looks like I swallowed several watermelons making me more miserable.
my BP is up even on 2 meds for it.
I used to always walk alot at least........but my right foot and ankle have gotten so bad in the past few years and now, my left foot toes , the middle ones are swollen and disfigured and painful and I feel like death warmed over.
I don't know what I am asking of you nice people but any thoughts or experiences you can share, I'd appreciate.
thanks.
Have you looked into the treatments for the Hep C? I know there are a couple of options out there. Like anything else, they're a crap shoot- some people do really well, others not. Add in Hep B too, and I'm sure that complicates things even more.
Do you have access to Mayo Clinic, Cleveland Clinic, or another facility that works with people with multiple diagnoses? I know Hep C is a hot topic right now- do you have any idea who is doing the research? Could they help guide you?
Other than that, I'm just sending you support and good wishes.
Have Faith
Bluedogs2
Have you tried any of the conservative therapies (diet, Minocin, etc)? With your multiple health conditions they might be worth a try as they shouldn't mess with the hep C stuff. Message me or Nonightshades if you want more information.
Whatever you decide - sending prayers that it will work for you!
It does sound like you're in a rough place. Plaquenil and prednisone on their own are not likely to be able to protect you from RA damage, so now that your RA is a significant problem, it makes sense that your rheumy wants to get you on something stronger. One thing you mentioned was feeling freaked out because the literature mentions it being used with methotrexate. That's true for almost all of the biologics, but it certainly doesn't mean Rituxan can't work on it's own. Most of the studies that got these drugs past the FDA included methotrexate, but providers are free to prescribe as they see fit to meet the needs of an individual patient. I have tried most of the biologics with Arava or Imuran in place of methotrexate.
Do you currently have a GI doc or hepatologist? If not, it's probably time to establish that relationship. They can give you an opinion and consult with your rheumie, and then you already know someone to go to if you do end up needing help with the hep C. Good luck to you- I'm sorry you have these crap diseases stacked up on each other. One would be more than enough to deal with!
Caren