I cant believe that we just left NIH and that Bruce is starting a flare again. Its been 15 days since his last Remicade infusion. He has been in good shape except for his left ankle. He has been falling lately and or his left ankle has been rolling out from underneath him. He had a full body MRI on the 2nd and he had fallen down some stairs that morning. He also fell a couple more times after that and a few more times before that... The MRI showed no inflammation. He does have swelling around the Achilles, you can tell by the lines in the back of the heel. I gave Bruce Katie's air-cast and he said it felt so good to have it on. We see the PT today at 3 pm. Anthony said he will assess the ankle and we will go from there. I got a sneaky suspicion that this isn't all about rolling of his foot. But at this point my head is spinning because I cant get my child ahead in the feeling good department. Well that's not true. OK he has felt better for a few weeks. but that's it. I really thought that the MTX injections were going to be the save all. I think at this point you hope anything will work. I thought that going from the oral to the MTX injections would be the reason why the Remicade wasn't working as well. I even gave the go ahead despite the brain fog. Did I really think this was going to help? Well NO but I was hoping. At this point in the game anything could help or not. Obviously the latter.
Bruce woke up this morning and put the air-cast on. He tried to apply pressure to his left foot and nope. Yes I know a sprain takes awhile to heal but this has been going on for awhile now. The PT saw that the left leg is extremely weak. So it would make sense that the ankle as well would be weak. I just don't think its due to rolling but its mostly the arthritis. The rolling just made it worse. I think arthritis kids have so many aches and pains that new joints or new aches take over and they don't feel the dull or constant aches that they have due to there tolerance to pain. Did that make sense?
Bruce got up very early and decided to do his schoolwork. He has really been on his own and I'm proud of him. I had noticed this morning that he was getting up and down from his chair. Constantly!.He was excited to tell me about something in history when he cracked his back without realizing it. I didn't say anything because, he will tell me when something is wrong. About an hour later he says..."Mom, I cant sit down. I'm uncomfortable. My back isn't stiff but I feel like I cant sit." I could tell he was upset so I asked him if he wanted to go for a walk and he said yes. He asked if he could hold my hand and I knew he was upset. He said his ankle felt good in the boot. He then asked about him making antibodies towards his medication. If he doesn't make antibodies then why doesn't the medication keep working. I told him I didn't really know but that the body can build up a tolerance to medication and after a time you need more. I asked if his back felt better and he said that it was better while he walked. When we got back home he said he would try his anti gravity chair (the outdoor lounge chair that distributes his body weight). He said his back felt better and he told me he was cracking his back without even realizing it. Its now his whole back not just the lower part. This started with the last flare. His knuckles too again feel better when cracked! I had watched him do it but really thought it was nothing until today when he has done it so many times.
I called Dr. N and sent NIH an email. I cant believe we were just there. He was fine. So is the Remicade not working? If NIH saw Bruce would they of been able to see a difference in him? Probably not yet. Can we catch this in time instead of watching the downhill progression Bruce has to go through. I honestly think that we have increased his dosage of any of the meds hes been on because they stopped working... not because he was flaring. This is scary. Giving prednisone only band-aids it and we have to give more medication 2 weeks after the ending of the prednisone taper.
This is his usual pattern. Back starts to feel uncomfortable and cant sit for long periods, then for short periods. will crack back to get relief. then he cant stand or sit and the back is so tight it no longer pops. Then his hips and girdle become weak and inflamed. Back becomes inflamed. His knees hurt and he starts to shuffle out of bed and around the house. Then hes unable to stand and hes back in his wheelchair. By this time his body is so weak and stiff. Nothing helps the stiffness. We tried it all. I feel like I'm doing everything possible for my son but my foot is nailed to the floor and I'm just going around in circles. So its either upping the Remicade which both Drs are not comfortable with or Humira. If Humira follows the path of Bruces previous medications, we are in big trouble. I have the Ulcerative Colitis to worry about.
I'm at a loss of what we do next... I let my guard down so I'm mentally not prepared.