Well...we finally had some normalcy this summer. Bruce got to go to golf camp, we went on a small vacation to the beach and Katie got to be on stage at the King Center as Gertie in OKLAHOMA! The kids didn't mind going back to school on the 13th. Homeschooling is the best. My gut told me to make the decision a few years ago... and I'm glad I didn't ignore it.
Bruce was tested for Sjorgrens about 4 weeks ago and the lab tests all came back normal. The problem is....hes young and you can be seronegative. Since hes seronegative for his arthritis we will continue to monitor him. His eye appt. is in a couple of weeks. We will see if his bottom lids are still cemented and go from there.
Its been 20 days today since he stopped the prednisone...again. He started another arthritis flare on Tuesday the 14th. This time it came on a bit weird and Mom Dad and Doc are all a bit concerned. Bruce went to bed Tuesday night and told me that his legs couldn't calm down. He said they felt like he had a shot of Benedryl from the infusion room. He gets very agitated and he feels tired but his legs get very restless, antsy...it sounded like restless leg syndrome...about a half hour later Bruce got up from bed and told dad and I that his legs felt funny from the waist down. He said that he felt like something was crawling on both legs all the way up to his waist or maybe like a pelting of hard rain hitting both legs. Bruce said it was bothersome and got worried. Well we have done this with Bruce enough times to not make light of it...but we told him that there isn't much we can do and we would see how he feels in the morning. We put him back to bed and he was wobbly on his legs and he said they feel like they are very weak.
On Wednesday morning he got up and he said the feeling in his legs had dropped from the knees to his feet and if he laid on the couch his legs would get that jittery feeling again. For the last couple of days I've noticed that he had been walking on tiptoes not wanting to put his heel down (this happens sometimes due to enthesitis). He was tight in the back and when he put his heel down he said it was very uncomfortable and both the front and back of each thigh hurt if he went to sit, squat or bend. He also had a rash that was lacy on both legs. No fever. The wobbliness and the sensation in his legs were still there along with tightness in back. Very tired. By that night he was hurting in his lower back and legs.
Now this child has been not feeling well since Feb with Ulcerative Colitis which lasted until the end of May. Couple of weeks prior to, he finished his taper with prednisone. Started a flare the last week in May and went right into an arthritis flare and started on prednisone again only to be tapered 20 days ago and now has started another flare with very odd feelings in his legs. Is remicade DOING ANYTHING? ANYTHING?
He is on 400mg of Remicade every 3 weeks, Celebex, Asacol and MTX. with the possibility of going back on prednisone which causes him glaucoma and pressure on optic nerve. He has been on every drug except for Humira. I don't know if he can take Cymzia(sorry for SP) so we really are running out of options. Dad thinks the Remicade is doing nothing. The flare in Feb which almost cost him his colon should not of happened and its very likely it will happen again. UC patients go every 6 to 8 weeks. He goes every 3 weeks on remicade. So in 6 weeks getting 800mg of Remicade is a bit too much. Doctors were surprised that he had a UC flare. Thought meds were failing him...which in a way they were.. because it took IV steroids to finally fix the flare. Needed steroids to fix arthritis flare in June and an increase to 400mg on Remicade and 20 days after taper he is in a flare again. Remicade is really the drug of choice for UC patients...so is the remicade helping the UC? I don't know...it sure as hell isn't helping his arthritis and am not sure if its causing any central nervous system problems. Remicade can cause MS and Neuropathy...numbness and tingling of legs and arms it can also eat at the sheath over the bundle of nerves that run from head to feet...What to do? I don't know because Bruce really needs to have a drug working for both UC and Arthritis. I'm afraid if i get off Remicade and go to Humira we wont be able to get back on remicade if and when Humira fails. Bruce builds antibodies against all the drugs...they just don't work after awhile.
I would like to think that Humira would be perfect for him... Unless there's something new out there I don't know about yet. Bruce has felt crappy over the last 7 months..as I'm typing this I'm thinking...wait a minute. Bruce didn't feel good in Dec. and we upt his Remicade then. So I guess its pretty simple...either we use Remicade or we don't...and that's the decision we have to make. My hubby (dad) thinks we could just give him prednisone when he flares and not put all this crap in him that doesn't seem to do the job...were giving him the prednisone anyway...hes still having flares. Dec Flare, Feb Flare, (March, April and part of May on Prednisone)May and June Flare, (June and July Prednisone) August Flare...Its not just a couple of days per flare they last a month or two..So decisions need to be made. But giving just prednisone is not the answer.
Bruce had his infusion today. Hes very quiet. He had no relief from the infusion. Hes worried about the leg sensations (they are gone) and his lower back is quite tight. Not much I can do for him right now except to wait and see if the remicade will pull him through. Pain medications don't work for tightness. There are so many possibilities regarding the odd leg sensations. He already has had a muscle biopsy to rule out Muscular Dystrophy and Myopathies. It could be from a pinched nerve, to medication, and then we could get into some ugly things...or maybe its just a onetime happening and he wont get it again. I hope its the latter.
So...over the next few weeks we have to watch, wait and see.... and make a decision.