As some of you may remember, I started AP about a little over a month ago. My RD agreed to prescribe Minocycline, but he did not want me going off the biologics for a while, or at the very least, until we gain better control of the disease. Against his advice (or rather, without telling him) I took myself off of Methotrexate, Medrol, and cancelled my appointment to start Orencia...I just wanted to try going the AP route by itself.
Friday I had an appointment with my RD, and needless to say, he wasn't very happy. I've been herxing really bad for the past few weeks, and he was upset that I presented with so much joint swelling and pain. He then proceded to tell me that AP has never been proven, and the only way he will continue to prescribe it for me is if I stay on the biologics....indefinitely. Which is NOT what he told me originally. Grrrrrrrrr!
Anyway, after a very long discussion, he has agreed to do more research into AP. I gave him my book 'The New Arthritis Breakthrough' and asked him to please read it. I, in turn, agreed to go back on the Methotrexate and Medrol, and per his recommendation, I had my first Orencia infusion that same day. Since I already have quite a bit of joint damage, (particularly in the knees and feet) and recent x-rays of my hands show further erosion progression, he is adament about doing AP in conjunction with traditional, buy only until the progression slows down. To me, that sounds A LOT better than 'indefinitely'.
Although this may not be the treatment regimen of choice (at least for me), I do like my RD, and I'm pretty happy that he's willing to meet me half way. I truly believe in the infection theory, and have no doubt that somewhere down the road, AP will kick in, and I will be able to discontinue the other meds. For the time being though, it is what it is.
Hi, we get to make choices. This is our body we are talking about. We have a sense about what's good for us....I believe. You are wise to 'meet him half way', a lot of the negatives about methotrexate come because people don't understand that we take a very small amount that cancer patients take, so the result on us isn't severe. Good luck sorting this all out, it is very complicated. I've taken it for 15 years without a problem.LyndaHi Gale, I've been wondering how you're doing. It sounds like a good compromise due to the damage that you've experienced. It may not be exactly what you wanted, but down the road you may be able to stop the other meds. Don't leave us, keep us posted on your progress. Lindyplease let us know if you are improving with both kinds of meds ...as i was wondering if this can be done
Hi, Gale. I'm glad your doctor sounds pretty open-minded. Let us know what he thinks of the book. Many people start out on immune suppressants, and are able to wean off. But it may take a little longer this way (according to my rheumy). I thought you said you were near Riverside... Have you thought of changing doctors? Good luck and best wishes!
Take care, Karin
I am sorry, Gale. Like you said "It is, what it is". Maybe after your RA gets undercontrol you can slowly get off all these meds and just give AP a try, as it will already be built up in your system?
I hope the Orencia, helps you. I know a person who says it has took his RA pain about, but he still have pain from joint damage and other problems they are trying to treat.
Good Luck and please keep us posted.
Just this past week I lost an online friend to melanoma. She was diagnosed with melanoma 5 years ago and also had RA. I had melanoma back in 2001, and we spoke many times of our shared concerns about suppressing our immune system with these potent RA drugs.
Melanoma can rear it's ugly head at any given moment, and I truly believe immunosuppression is not for someone with a cancer history. The fact is, I live in fear every day that I continue to take these drugs.
Dear Gale, I'm sorry about your friend. I didn't think about melanoma, when my skin doctor said, "yes we watch our patients who take methotrexate". Hummm. Being able to 'get off of' any of these meds is everyone's goal , but most of us can't. I will remember when in Carson City, to take lots of hats, and sunscreen. High altitude, and intense sun! Hard to avoid but I'll remember now, thanks,Lynda