ScreaminMeanie
01-19-2011, 03:47 PM
Saw my Rheumy today, and my blood work from yesterday was all good. Liver and kidneys perfect, inflammatory markers back down. She doesn't use ANCA as a guide for progress, so she doesn't have that checked every time. The best news is, I get to try reducing the steroids again - this time from 5 mg to 4 mg, then continue stepping down 1 mg per month. Blood work again after the first month to see if everything still looks okay.
This was the first time I'd seen her since my blood work came back not-so-good in December. Since then, I've learned a lot on this forum, and we talked about a number of things today. I am even more impressed with her now. She definitely knows what she's doing. I feel very lucky to live in such a small town and have such an experienced doc wrt WG.
One of the things we talked about is the messed up nerves in my feet and the results of the nerve study I had a couple weeks ago. She agrees that more pain, less numbness is a good sign that the nerves may be regenerating. Since my feet are no longer just numb, and I sometimes have a very "active nerve night" especially after a day I've spent a lot of time on my feet, she gave me a scrip for Neurontin. Not to use every day, just when I'm having one of those "active nerve nights." Last night I hardly slept at all because of the twitchy, painful, tingling, numb stuff going on all at the same time. We Weggies need our sleep!
I'm trying to get off the Prilosec, but it's rough. At first I stopped all together, and by the third day off it, I was eating Tums every couple of hours. So now I'm taking it only every other day, and after a week or so will try it every third day, and so on. Also backing off on the Flonase, which is something I've taken regularly for years. I have a lot of allergies (including dust and cats, both of which I have in abundance!), and I'm pretty sure it's the Flonase that has kept me from having as many sinus infections in the last few years. I do realize now (thanks, Sangye!) that it's not good to take it every day, so I'm trying to reduce my dependence on it and save it as a last resort drug instead.
Meanwhile, the Bactrim and MTX are not killing my liver, and my energy level does seem to be a bit higher than it has been the last couple of months, so I'm feeling pretty good about things at the moment. Fingers crossed it all continues to go well!
This was the first time I'd seen her since my blood work came back not-so-good in December. Since then, I've learned a lot on this forum, and we talked about a number of things today. I am even more impressed with her now. She definitely knows what she's doing. I feel very lucky to live in such a small town and have such an experienced doc wrt WG.
One of the things we talked about is the messed up nerves in my feet and the results of the nerve study I had a couple weeks ago. She agrees that more pain, less numbness is a good sign that the nerves may be regenerating. Since my feet are no longer just numb, and I sometimes have a very "active nerve night" especially after a day I've spent a lot of time on my feet, she gave me a scrip for Neurontin. Not to use every day, just when I'm having one of those "active nerve nights." Last night I hardly slept at all because of the twitchy, painful, tingling, numb stuff going on all at the same time. We Weggies need our sleep!
I'm trying to get off the Prilosec, but it's rough. At first I stopped all together, and by the third day off it, I was eating Tums every couple of hours. So now I'm taking it only every other day, and after a week or so will try it every third day, and so on. Also backing off on the Flonase, which is something I've taken regularly for years. I have a lot of allergies (including dust and cats, both of which I have in abundance!), and I'm pretty sure it's the Flonase that has kept me from having as many sinus infections in the last few years. I do realize now (thanks, Sangye!) that it's not good to take it every day, so I'm trying to reduce my dependence on it and save it as a last resort drug instead.
Meanwhile, the Bactrim and MTX are not killing my liver, and my energy level does seem to be a bit higher than it has been the last couple of months, so I'm feeling pretty good about things at the moment. Fingers crossed it all continues to go well!