Guest guest Posted March 30, 2006 Report Share Posted March 30, 2006 I am 39 years old and have been diagnosed with RA since 2001. I believe I have had it since I was a teen, but it was never diagnosed and I had long remissions. My RA just keeps getting worse and worse and I am at my wits end! I was on Enbrel for 1.5 years, along with MTX, Bextra, Skelaxin and Prednisone. I had flares but things were basically under control and I was working. Last year, the efficacy of the Enbrel ended for me. At about the same time, Bextra was taken off the market and I was suddenly in horrendous shape. The Rheumy tried all sorts of things with no sucess. I couldn't sleep, and spent most of the time rocking myself because I didn't know how to stop the pain. On July 1, I stopped working because I couldn't even bend my arms to get them up to the keyboard, let alone type. I am the sole bread winner for my family and we have 6 children. The Rheumy gave me the option of joining one of the drug studies he was doing and I decided to go with it. I started on Abatacept infusions and began to get some relief. Suddenly, my back pain was much worse and I couldn't sit, stand or lay down without pain. Turns out that the facet joints in my back had deteriorated so badly that one of them cracked and opened and then it collapsed down on the next few levels of my spine. In Dec, I had back surgery where they did a laminectomy and used rods and screws to put things back together. Well...the surgery made my RA pain flair even worse than it was before. I ended up with pulmonary effusions (fluid on my lungs) that they said was likely from the RA. The Dr. started me on Oxycontin for the pain and I finally felt that I was getting some relief, at least to the point that I could tolerate the pain. I have healed from the surgery, but the Abatacept infusions are not giving me any pain relief at all. When they feel my joints for swelling at each appointment, they are all swollen. It is as if I am not on any meds at all. The Dr. added Lodine XL to my list of meds. I started going to a pain management center and they changed the oxycontin to Avinza and also added Lyrica for the pain. I also noticed than since surgery, I was having these tremors and jerking movements and at times would have difficulty with my speech. I was sent to a neurologist and am now diagnosed with multi focal myoclonic seizures which could be from the surgery but can also be caused by the immune system. This Dr. now added Trileptal to my meds. Of course I am still on MTX and Skelaxin plus meds to try and help me sleep. The Rheumy did a bone scan and found that I had considerable bone loss for someone my age and started me on Fosamax. I had xrays of my hands and wrists and it shows a build up of crystals that they believe are hydroxyapaptite crystals and said follow up would be needed. I just had an mri of my hand and wrists but no results yet. Meanwhile, my RA is still flaring and my husband and I have decided that the Abatacept is no longer providing me any relief at all, and its time to try something else. My options are Humira or Remicaid and I don't know which to try. What I would like to know is this: Based on all this history I provided, which of these might work better? Does anyone have thougts they could provide. Anyone tried both and had sucess with one but not the other? Just as additional info...in case you are still reading, I have a wheelchair and an electric scooter that was purchased by my ins. co. I wear braces on my arms to help with pain. I have done aquatic therapy 3x a week for months now. I am extremely depressed and see a psychiatrist for that and he has me on other meds. I am still mourning for the life I knew and realizing all the things that I will never be able to do again. I am only 39, I just can't take much more of this. My hubby is extremely supportive and he and the kids do everything around the house, I can't do anything to pitch in and that just makes me feel useless and more depressed. ok...all for now, I will stop my sob story. Thanks for listening. Miriam Quote Link to comment Share on other sites More sharing options...
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