This morning was my regularly scheduled bimonthly session with Dr. Pokey Joints. These appointments follow a simple regime of check the joints, pressure points, review labs, films, and symptoms. They are done every two months to try to stay ahead of my ever moving disease. Today there was good news, there was great news, there was bad news, and there was ugly news.
The good news is I had a really great dialog with my doctor, and we covered everything on my list. The list was pretty extensive this morning covering all the good things in my life and the not so good ones. I tend to like my appointments first thing in the morning because I feel you get a little more time with Dr. Pokey Joints. One thing that really helps me in these exams is being prepared by bringing a list of answers to his questions and a list of my own questions or dialog about what is going on in my body.
Today I went in with a huge good list! I just started remicade two months ago. Remicade is a TnF inhibitor given by infusion (I will do a blog about this at a later date). I feel the best I have felt in 18-24 months not being on steroids! I had spent most of last year and the year prior on steroids to function since my treatments were not working their finest. This feeling pretty deccent is something to celebrate! I’m not saying I feel like a normal person but what I am saying is that my symptoms are manageable and I can and do feel pretty good most days. I am also not flaring and throwing fevers non stop and my energy levels are pretty good. In addition to that my eye issues, my morning stiffness, and my generalized pain/swelling have gone down tremendously thanks to this drug!
The great news is that we confirmed remicade is working! I also got the all clear that my fibromyalgia is in check! We pulled one of my anti-arthritic drugs an antimalarial called plaquenil because it is not needed on the new meds. It was also causing my psoriasis to act up on my feet after infusions. This is awesome news because all of these drugs are hard on the liver. More good news is we can drop my MTX from 7 to 6 and possibly to 5 for the summer! MTX as we spoke about in the last blog is a chemotherapy drug called methotrexate. It gives me horrible side effects and its not good for the liver. My doctor is confident with warmer more stable weather coming and the remicade building in my system I am going to feel even better after my next infusion!
Despite the good news there is bad news I was scheduled for another bone density scan since I haven’t had one in 18 months. The bone density is important because I have bad osteopenia. Osteopenia is low bone density, and mine is just a hair off of being full osteoporosis. The particularly bad news is I have been eating a lot of steroids which does a lot of damage to bone density. Mine was already low due to childhood malnutrition from undiagnosed celiac. Due to permanent malabsorbtion issues, and possible pancreatic damage my bone density is something of great worry to my doctors. So Saturday we get to see how far the rabbit hole has gone and we may need to make some difficult decisions if the situation has gotten worse.
Now for the ugly news, my hips have not responded on the level that the rest have to remicade . My hips have been a major issue for me since last July. I have a combination of bursitis, arthritis, and tendonitis here. Last August a set of shots was placed into both hips at the same appointment because they were so inflamed I shouldn’t have been able to walk, yet I’d run 7 miles crying on them the day before like an idiot. The shots helped but not enough so I was pulled down from running for over a month and missed out on the Marine Corps Marathon. I was basically told no impact during that time leaving me to swimming and pilates. Well I’ve been running again but the hips still aren’t right and recently they’ve started to regress again. Dr. Pokey Joints agreed my hips are of a big concern so we are running X-rays. If they still aren’t right and the bones are clean in 2 months we’ll run an MRI. For now I’m allowed to continue running as long as I continue taking care of them the way I have been with extra stretching, Epsom salt baths, volteran, and strength training. I did however need another steroid shot today in the right hip, and was told if the left continues to call and come in for that one in 2 weeks. Right now it is unknown what is damaged in my hips, and what will need to be done. There is a chance more remicade may solve it, or it may be just permanent damage from my disease. In May after my next remicade and x-rays, we will decide if I will run or run/walk my first marathon. This is something that makes me sad but I know my doctor will do everything in his power to keep me running and is trying to find out how hungry Arthur was in its angry phase last year and how much of my bones and soft tissues it has eaten. Fingers crossed we are just dealing with a lot of soft tissue residual damage which could take a while to heal, but my gut tells me its more than that since my right hip has been off just slightly for some time now in films and this issue has lasted me longer than any other in the past.
Today was more eventful than usual at my appointment. My bones got manipulated a lot and they hurt because of that. However I feel like we are making good decisions in my care, and we are making really great head way with my new treatment. I am happy to be running, and have the tools being handed to me to make smart decisions to protect that for my future. I am thankful for feeling pretty good these days, and I’m ready to face whatever is coming my way.
Captain Angry Bones
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