I'm not a candidate for DMARDS, TNF, Biologics. I contracted hepatitis B thirty four years ago from my husbands affair and was treated. Unfortunately, now I cannot have any of the medications that help because of the chance of reactivation and liver failure. I do have hope though that something else will be available one day. Right now I'm being treated with doxycycline on the Arthritis Breakthrough regimen for RA and also Colcrys, which usually treats gout, but is being used to control the inflammation and joint damage as much as possible. Just wondered if there was anyone else going through anything similar with not being a candidate for these treatments.
basset momma, has your rheumatologist mentioned Otezla. As far as I know, it's not immunosuppressant and it doesn't challenge the liver. I think the initial side effects can be unpleasant and it may only have a 40% chance of success, but I think in your situation it's definitely worth asking about.
Okay, I freely admit I don’t know much about this. But isn’t there a new treatment that cures hepatitis completely? It wouldn’t be able to reactivate? Or is the risk still present regardless of the viral load present?
This is truly a WTF moment. Obviously a lot has happened since last you were here and concerned your doc was taking toomuch time to reach a DX and start treatment. Not only does the Doxy regime have no effect on on PsA as this disease has nothing in common with RA, because of the close relationship PsA has with some forms of enteric disease, will make it worse.
Nothing strikes more fear into a long term PsA patient that has pretty good disease control than to have a flare with our eyes. While the uveitis is scary on its own, the real scary thing is if the oil glands become infected because the inflammation plugs them. should they become infected not only are we using antibiotic drops, (zithromax) steroid drops, we also have to take oral antibiotics for 30 - 60 days. Doxycycline is the antibiotic of choice. So why is that scary? Doxycycline is so liver toxic, we have stop any MTX we are taking, or if we are dependent on it to keep our Biologics working, or mobility, we cut back our NSAIDS and reduce the MTX dose. In any event we have metabollic panels run anywher from weekly to monthly as opposed to every 2 - 3 months.
So let me repeat that. Doxycycline is EXTREMLY liver toxic. It would not be in most docs top 100 for treating any form of arthritis.
Please please please tell me you are not seeing a board certified ACR rheumatologist. Ther are challenges involved with treating patients with a Hep B history, but this is the first time I have ever heard what you are saying. Obviously you msy have severe liver damage (in which case you should not be taking doxy, or some other factors you haven't mentioned but most patients with you history are not destined only for alternative treatment. There are many alternatives available than one of these quack arthrits centers.
The new hepatitis drug Sovaldi is for hepatitis C. And of course some people won't be able to tolerate it. (We need a Hep C vaccine, but that's not relevant to this thread).
Stoney said:
Okay, I freely admit I don't know much about this. But isn't there a new treatment that cures hepatitis completely? It wouldn't be able to reactivate? Or is the risk still present regardless of the viral load present?
Thanks Yitsa.
Yitsa said:
The new hepatitis drug Sovaldi is for hepatitis C. And of course some people won't be able to tolerate it. (We need a Hep C vaccine, but that's not relevant to this thread).
Hi Ali - I think he mentioned it once and then decided against it. Can't remember why. I see him again in a few weeks and I'll ask him about it. Thanks for the suggestion. I appreciate it. :-)
Ali said:
basset momma, has your rheumatologist mentioned Otezla. As far as I know, it's not immunosuppressant and it doesn't challenge the liver. I think the initial side effects can be unpleasant and it may only have a 40% chance of success, but I think in your situation it's definitely worth asking about.
Hi Stoney - There is treatment for hepatitis C to put it into remission and there are vaccines for hepatitis A and B if you've never had them to prevent getting them. But ultimately, my hepatitis B was treated back in the 80s and went into remission state and I haven't had any elevated levels at all. Unfortunately all of these drugs have the possibility of reactivating it and the doctors and tertiary hospitals won't chance it. Kind of a bummer. Even my medicine for my ulcerative colitis is harsh on my liver and can do the same thing. Maybe some day there will be something else.
Stoney said:
Okay, I freely admit I don't know much about this. But isn't there a new treatment that cures hepatitis completely? It wouldn't be able to reactivate? Or is the risk still present regardless of the viral load present?
Actually my doctor is board certified but at this point even though I have psoriasis he doesn't want to jump to PsA - he jumps more to RA, but it more comfortable with enteropathic inflammatory polyarthropathy because of my UC. So it is a tosh up. I didn't realize doxycycline was so toxic to the liver. I had read about the Arthritis Breakthrough protocol for RA and had asked if we could try the cycline to see if it would help. Haven't really noticed it helping with the pain or arthritis part, but it sure has helped to heal up my skin ulcers and sores. I see him again in a few weeks and I'll talk to him about this. My last rheumatologist wouldn't treat me with anything even though he saw the rashes, skin conditions, ulcers, etc. Just kind of wish I had a few more options than I do. Thanks for the help and info.
tntlamb said:
This is truly a WTF moment. Obviously a lot has happened since last you were here and concerned your doc was taking toomuch time to reach a DX and start treatment. Not only does the Doxy regime have no effect on on PsA as this disease has nothing in common with RA, because of the close relationship PsA has with some forms of enteric disease, will make it worse.
Nothing strikes more fear into a long term PsA patient that has pretty good disease control than to have a flare with our eyes. While the uveitis is scary on its own, the real scary thing is if the oil glands become infected because the inflammation plugs them. should they become infected not only are we using antibiotic drops, (zithromax) steroid drops, we also have to take oral antibiotics for 30 - 60 days. Doxycycline is the antibiotic of choice. So why is that scary? Doxycycline is so liver toxic, we have stop any MTX we are taking, or if we are dependent on it to keep our Biologics working, or mobility, we cut back our NSAIDS and reduce the MTX dose. In any event we have metabollic panels run anywher from weekly to monthly as opposed to every 2 - 3 months.
http://arthritis-research.com/content/12/1/103
So let me repeat that. Doxycycline is EXTREMLY liver toxic. It would not be in most docs top 100 for treating any form of arthritis.
Please please please tell me you are not seeing a board certified ACR rheumatologist. Ther are challenges involved with treating patients with a Hep B history, but this is the first time I have ever heard what you are saying. Obviously you msy have severe liver damage (in which case you should not be taking doxy, or some other factors you haven't mentioned but most patients with you history are not destined only for alternative treatment. There are many alternatives available than one of these quack arthrits centers.