Wow, its been almost a year since I last posted. Amazing how time flies. My pre New Year's Resolution Resolution is to update this blog once a week.
SO, my last post ended with me getting off the Methotrexate and getting PredniSONE down to 2.5mg every other day, then talking about the tics.
Ah, the tics. The summer of 2008. They came on slowly, so slowly that I didn't really notice them or pay attention to them as much as maybe I should have. They were shudders. They would come in from the right or left side of my head. I could feel them coming on, but I couldn't do anything to stop them. They would hit, I would shudder or spasm pretty bad real quick, let out a shudder sound like I was cold and that was it. I never really thought anything about them.
But my wife did. She started noticing them more and more. To me they were a benign nuisance, just something that happened. They didn't hurt, they didn't keep me from doing anything, they just came on from time to time and felt funny. My wife asked me to ask the RA doc about them and he was instantly concerned. Apparently a side effect of Enbrel is brain lesions. GREAT... My first thought was that my RA was turning to MS. This is not good.
I was referred to a Neurologist. This was a very strange visit. All of the RA docs I had been to have very modern offices with modern equipment. This neurologist was Old School. His office looked like a dusty library and all he had was one of those eye things they use at the Optometrist and one of those knee hammers they use for reflexes. He checked my reflexes and did some touch-feely stuff with my neck and then checked my eyes. I did have a shudder at his office, which was nice, but he didn't really do anything about it. He took some notes, didn't say much and told me he would send his findings to my RA doc. That was a very strange visit. Apparently he didn't see anything glaring and sent me on my way.
My RA doc calls me a couple weeks later and says he wants to see me. Apparently the notes he got from the neurologist concerned him. Doc recommends that I go off the Enbrel and back on the Metho, I blatantly refuse. No way I'm going back to the Metho...My wife and I were trying for number 2! I stop the Enbrel and go in for the tests he recommends. I believe it was called an Arthogram MRI, where they put dye in my bloodstream via IV and then take MRIs of my brain. I had to have 2 on 2 seperate days.
Now, I'm not claustrophobic, but man...being put in a head cage like Hannibal Lector and stuck in a tube for 45 minutes at a time while being asked to not move was a challenge. Keeping from freaking out in that tube was an accomplishment in itself.
I waited around for 2 weeks for the test results, and good news, no lesions. But no answer on the shudders.
Next Post: Figuring out the shudders.
Thursday, November 3, 2011
Tuesday, January 4, 2011
Intro, Part IV
.....And we're back.
So when I last posted, I was rehashing my journey from finding out that I had RA and then going on to messing with my own meds to see how things worked.
After I became disenchanted with my RA doc at that time, I started doing some of my own research and found a guy here in Omaha named Dr. James O'Dell who is a big RA research doctor. He is the Section Chief of the Rheumatiod Arthritis Investigational Network (RAIN), which is a national research network for RA. I decided to switch docs.
O'Dell is a great guy, and he's a good doc, however, I was not happy when I went there and he took a look at me and said, "Well, everything is looking good, let's keep going with that you're doing." Grrrrr. Not exactly the answer I was looking for. I was looking for the golden bullet and didn't get it. No big deal. I'll just keep messing with my meds on my own again.
This turned out to be a bad idea. I decided to start alternating my Methotrexate and Enbrel doses to every other week. This did not work. I flared up and it wasn't good. I went back to my original stack and stayed on it until I felt better. That lasted until my next visit 2 months later. I told him what I had done and he basically said I'm on the meds for a reason.
In the meantime, my wife and I decided we were going to try to have another baby. In my research, I had found that Methotrexate is used for abortions and can cause birth defects, so I consulted with the RA doc and he agreed, saying that I'd want to be off of the Methotrexate for 3 months if we decided to try, and that we could try some other meds while I was going off of it. His recommendation seemed a little nonchalant and I had read in some published materials that it is estimated that Methotrexate can stay in your system for around 6-9 months. I decided since I wasn't the one carrying the baby, I wasn't going to screw around with some people's recommendations and I was going to go off of it for 1 year prior to trying. It was a bolstering reason to get off the Metho for good. If I could go without it for a year and be OK, why couldn't I be off it for good? I blamed the Metho and PredniSONE for my weight gain and that was pissing me off too.
I dropped the Metho (and Folic Acid) in January of 2008 and added Hydroxychloriquine (Plaquenil). At the behest of the RA doc, I paid close attention to how things were going.
This turned out to be a great idea. The summer of 2008 was a great summer for me. 2007 had been such a frustrating year. I was still not convinced I actually had full blown RA, I thought I had something else, as in I didn't really have all the classic symptoms. Symmetry, swollen knuckles, all that stuff. After going off of the Metho I went into O'Dell for my first checkup in March. Everything looked, good. I had a lot of energy, I wasn't stiff, and I seemed to feel generally happier. I asked about dropping the PredniSONE. He agreed to go from 5mg down to 2.5 daily. I went 2 more months and had my May checkup and everything was great. Enbrel once a week, Diclofenac Sodium, Hydroxychloriquine and the little tiny dose of PredniSONE. I felt great. I started getting back into the groove, I was playing golf again, although I could only get through 9 holes before my wrist hurt too bad from the iron shots. I got back on the bike and started riding to work (5 mi each way) about once a week and going for recreational rides on the weekends. I also got back in the pool and started swimming again. This was huge. I had been running on the treadmill and riding the elliptical, but both seemed to hurt my knees, probably because of the RA AND the extra weight. Swimming gave me the best of all worlds...it helped the range of motion in my shoulder immensely, and was a great cardio workout without beating my joints up too bad. I had found my bliss. Bike rides when I felt good and swimming when I didn't. I could do it all and I felt better than ever. I ended up losing 53 lbs in 2008, I went from 240 down to 187 and I felt great. At that point I was invincible.
I went to the RA doc and showed him my progress at my October checkup. He was impressed and pleased with my progress. He agreed that swimming was probably the best thing for me and to keep it up. I asked about getting off the PredniSONE completely and he was hesitant, but we settled on 2.5mg every other day for 3 months and after that if I hadn't had any flares I could stop it. I was totally pumped.
But...that's when the tics started happening.
Again, to be continued....
So when I last posted, I was rehashing my journey from finding out that I had RA and then going on to messing with my own meds to see how things worked.
After I became disenchanted with my RA doc at that time, I started doing some of my own research and found a guy here in Omaha named Dr. James O'Dell who is a big RA research doctor. He is the Section Chief of the Rheumatiod Arthritis Investigational Network (RAIN), which is a national research network for RA. I decided to switch docs.
O'Dell is a great guy, and he's a good doc, however, I was not happy when I went there and he took a look at me and said, "Well, everything is looking good, let's keep going with that you're doing." Grrrrr. Not exactly the answer I was looking for. I was looking for the golden bullet and didn't get it. No big deal. I'll just keep messing with my meds on my own again.
This turned out to be a bad idea. I decided to start alternating my Methotrexate and Enbrel doses to every other week. This did not work. I flared up and it wasn't good. I went back to my original stack and stayed on it until I felt better. That lasted until my next visit 2 months later. I told him what I had done and he basically said I'm on the meds for a reason.
In the meantime, my wife and I decided we were going to try to have another baby. In my research, I had found that Methotrexate is used for abortions and can cause birth defects, so I consulted with the RA doc and he agreed, saying that I'd want to be off of the Methotrexate for 3 months if we decided to try, and that we could try some other meds while I was going off of it. His recommendation seemed a little nonchalant and I had read in some published materials that it is estimated that Methotrexate can stay in your system for around 6-9 months. I decided since I wasn't the one carrying the baby, I wasn't going to screw around with some people's recommendations and I was going to go off of it for 1 year prior to trying. It was a bolstering reason to get off the Metho for good. If I could go without it for a year and be OK, why couldn't I be off it for good? I blamed the Metho and PredniSONE for my weight gain and that was pissing me off too.
I dropped the Metho (and Folic Acid) in January of 2008 and added Hydroxychloriquine (Plaquenil). At the behest of the RA doc, I paid close attention to how things were going.
This turned out to be a great idea. The summer of 2008 was a great summer for me. 2007 had been such a frustrating year. I was still not convinced I actually had full blown RA, I thought I had something else, as in I didn't really have all the classic symptoms. Symmetry, swollen knuckles, all that stuff. After going off of the Metho I went into O'Dell for my first checkup in March. Everything looked, good. I had a lot of energy, I wasn't stiff, and I seemed to feel generally happier. I asked about dropping the PredniSONE. He agreed to go from 5mg down to 2.5 daily. I went 2 more months and had my May checkup and everything was great. Enbrel once a week, Diclofenac Sodium, Hydroxychloriquine and the little tiny dose of PredniSONE. I felt great. I started getting back into the groove, I was playing golf again, although I could only get through 9 holes before my wrist hurt too bad from the iron shots. I got back on the bike and started riding to work (5 mi each way) about once a week and going for recreational rides on the weekends. I also got back in the pool and started swimming again. This was huge. I had been running on the treadmill and riding the elliptical, but both seemed to hurt my knees, probably because of the RA AND the extra weight. Swimming gave me the best of all worlds...it helped the range of motion in my shoulder immensely, and was a great cardio workout without beating my joints up too bad. I had found my bliss. Bike rides when I felt good and swimming when I didn't. I could do it all and I felt better than ever. I ended up losing 53 lbs in 2008, I went from 240 down to 187 and I felt great. At that point I was invincible.
I went to the RA doc and showed him my progress at my October checkup. He was impressed and pleased with my progress. He agreed that swimming was probably the best thing for me and to keep it up. I asked about getting off the PredniSONE completely and he was hesitant, but we settled on 2.5mg every other day for 3 months and after that if I hadn't had any flares I could stop it. I was totally pumped.
But...that's when the tics started happening.
Again, to be continued....
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