Guest guest Posted December 18, 2003 Report Share Posted December 18, 2003 I know, I know, I know. I'll do the right thing when I have to. Believe me. If I didn't I wouldn't be around anymore. The pancreas pain, when it gets bad is really bad. I can only compare it to passing kidney stones, which I did a long time ago even before I had lupus. It is awful and doesn't leave you alone for a minute. My temp never went up, but my blood pressure was 185/120 when I went into the ER last year with an inflamed pancreas. Thanks for the support. I'm better now, but I definitely have to watch what I eat - that seems to make some difference this time. Last year I suffered from the pain July & August, with a break in September. Then one October day it came back with a vengeance and that's when I gave up and had my hubby take me to the ER. I hope I can control it better this time, although last year no diet made a difference. Mojo Hiding in my shell a little bit Hello All: Sorry, I haven't been too communicative lately, barely checking my messages. Last week I went for my visit and found out that they'll keep me on the Cytoxan for another year or so. I don't know why it got me down so much, I was expecting something like that. I kinda of expected that. My doc was just trying to spare me a little bit knowing how freaked out I was about chemo, and didn't tell me it would be an extended process. He pretty much told me it would be 6 or 9 months of monthly followed by two or so session every three months. It's every three months now, so I can pretty much handle it - still I was hoping...................... The other thing that is keeping me quiet is my pancreas. To give you a bit of history: it started to bother me for the first time in July 2002 (about the time my mega flare started), but I was on Zocor at the time. It bothered me, and bothered me, and I was in pain, but not to a point were I had to go to the ER. Around mid September I stopped taking Zocor and the pain magically went away. Although all my test were showing ok, the doctor just wanted to check if Zocor was causing this pain. So three weeks later we restarted Zocor in hopes that it was just a coincidence. Five days later my hubby took me to the ER and I spent 5 days on IVs for acute pancreatitis. Since that was the peak of my flare, my doctor was still hoping that it was all a coincidence and that the attack was caused by Lupus, not Zocor. But I wasn't willing to risk another attack like that for a while and told him I wouldn't consider taking Zocor for a while. So..... this past July we tried it again, and two weeks later I got another attack and told my doc I would never consider Zocor again. Thought that was over, it's now been months since I stopped taking it and have not been on any other similar medication. I've started feeling the pain around last Wednesday. It was subtle at first, but there constantly. Saturday night I couldn't sleep. My doc was right, it's not Zocor! I'm one of the last people (probably after Deanna ) to go to the ER, but I'm worried this will hit me hard again. That's how it started previously - subtle for a while until WHAM!!!! in the middle of the night. I have no clue what to do about this on my own. From what I understand there really is no medication for pancreatitis, all you get is the IV and diet for a few days. Is there any particular sort of diet that can help, or a certain group of foods that can aggravate the pancreas. I haven't been doing anything different. Any pain medication that can help - I'm kind of hoping for something over the counter. I really don't want to stress this out too much to my doc, or at least not until after the holidays. There is no way I am spending my Christmas locked up. I'm also worried a bit how the stress of this pain will affect my kidneys. I look forward to any suggestions you may have. I know there's a few people in group who have regular encounters with their pancreas. Maybe you have some golden rules on what helps, although I guess if you did you wouldn't have the problem. Also, please forgive me for not participating too much at this point. I am always checking my e-mails, but sitting down is the worse position for me. I don't know if it's typical, but it feels like there is something pressing down on my pancreas when I sit and the pain gets worse. So, I either stand or I lie down. Mojo "The LUPIES Store" Come check out our store...http://www.cafepress.com/thelupies"The LUPIES Web Page"http://www.itzarion.com/lupusgroup.html"The LUPIES online photo albums!" Check out what your fellow Lupies look like...http://www.picturetrail.com/gallery/view?username=lupies Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 18, 2003 Report Share Posted December 18, 2003 OK - But I can't help but worry over you. Don't you sometimes feel like you are just going around in circles? You may stop at a different spot in the circle, like pancreas one time and joint pain the next, but the thing is like perpetual motion - - round and round and round I go....... Hugs - a Hiding in my shell a little bit Hello All: Sorry, I haven't been too communicative lately, barely checking my messages. Last week I went for my visit and found out that they'll keep me on the Cytoxan for another year or so. I don't know why it got me down so much, I was expecting something like that. I kinda of expected that. My doc was just trying to spare me a little bit knowing how freaked out I was about chemo, and didn't tell me it would be an extended process. He pretty much told me it would be 6 or 9 months of monthly followed by two or so session every three months. It's every three months now, so I can pretty much handle it - still I was hoping...................... The other thing that is keeping me quiet is my pancreas. To give you a bit of history: it started to bother me for the first time in July 2002 (about the time my mega flare started), but I was on Zocor at the time. It bothered me, and bothered me, and I was in pain, but not to a point were I had to go to the ER. Around mid September I stopped taking Zocor and the pain magically went away. Although all my test were showing ok, the doctor just wanted to check if Zocor was causing this pain. So three weeks later we restarted Zocor in hopes that it was just a coincidence. Five days later my hubby took me to the ER and I spent 5 days on IVs for acute pancreatitis. Since that was the peak of my flare, my doctor was still hoping that it was all a coincidence and that the attack was caused by Lupus, not Zocor. But I wasn't willing to risk another attack like that for a while and told him I wouldn't consider taking Zocor for a while. So..... this past July we tried it again, and two weeks later I got another attack and told my doc I would never consider Zocor again. Thought that was over, it's now been months since I stopped taking it and have not been on any other similar medication. I've started feeling the pain around last Wednesday. It was subtle at first, but there constantly. Saturday night I couldn't sleep. My doc was right, it's not Zocor! I'm one of the last people (probably after Deanna ) to go to the ER, but I'm worried this will hit me hard again. That's how it started previously - subtle for a while until WHAM!!!! in the middle of the night. I have no clue what to do about this on my own. From what I understand there really is no medication for pancreatitis, all you get is the IV and diet for a few days. Is there any particular sort of diet that can help, or a certain group of foods that can aggravate the pancreas. I haven't been doing anything different. Any pain medication that can help - I'm kind of hoping for something over the counter. I really don't want to stress this out too much to my doc, or at least not until after the holidays. There is no way I am spending my Christmas locked up. I'm also worried a bit how the stress of this pain will affect my kidneys. I look forward to any suggestions you may have. I know there's a few people in group who have regular encounters with their pancreas. Maybe you have some golden rules on what helps, although I guess if you did you wouldn't have the problem. Also, please forgive me for not participating too much at this point. I am always checking my e-mails, but sitting down is the worse position for me. I don't know if it's typical, but it feels like there is something pressing down on my pancreas when I sit and the pain gets worse. So, I either stand or I lie down. Mojo "The LUPIES Store" Come check out our store...http://www.cafepress.com/thelupies"The LUPIES Web Page"http://www.itzarion.com/lupusgroup.html"The LUPIES online photo albums!" Check out what your fellow Lupies look like...http://www.picturetrail.com/gallery/view?username=lupies Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 19, 2003 Report Share Posted December 19, 2003 Yep, but I was under the impression that was what Lupus was all about. Mojo Hiding in my shell a little bit Hello All: Sorry, I haven't been too communicative lately, barely checking my messages. Last week I went for my visit and found out that they'll keep me on the Cytoxan for another year or so. I don't know why it got me down so much, I was expecting something like that. I kinda of expected that. My doc was just trying to spare me a little bit knowing how freaked out I was about chemo, and didn't tell me it would be an extended process. He pretty much told me it would be 6 or 9 months of monthly followed by two or so session every three months. It's every three months now, so I can pretty much handle it - still I was hoping...................... The other thing that is keeping me quiet is my pancreas. To give you a bit of history: it started to bother me for the first time in July 2002 (about the time my mega flare started), but I was on Zocor at the time. It bothered me, and bothered me, and I was in pain, but not to a point were I had to go to the ER. Around mid September I stopped taking Zocor and the pain magically went away. Although all my test were showing ok, the doctor just wanted to check if Zocor was causing this pain. So three weeks later we restarted Zocor in hopes that it was just a coincidence. Five days later my hubby took me to the ER and I spent 5 days on IVs for acute pancreatitis. Since that was the peak of my flare, my doctor was still hoping that it was all a coincidence and that the attack was caused by Lupus, not Zocor. But I wasn't willing to risk another attack like that for a while and told him I wouldn't consider taking Zocor for a while. So..... this past July we tried it again, and two weeks later I got another attack and told my doc I would never consider Zocor again. Thought that was over, it's now been months since I stopped taking it and have not been on any other similar medication. I've started feeling the pain around last Wednesday. It was subtle at first, but there constantly. Saturday night I couldn't sleep. My doc was right, it's not Zocor! I'm one of the last people (probably after Deanna ) to go to the ER, but I'm worried this will hit me hard again. That's how it started previously - subtle for a while until WHAM!!!! in the middle of the night. I have no clue what to do about this on my own. From what I understand there really is no medication for pancreatitis, all you get is the IV and diet for a few days. Is there any particular sort of diet that can help, or a certain group of foods that can aggravate the pancreas. I haven't been doing anything different. Any pain medication that can help - I'm kind of hoping for something over the counter. I really don't want to stress this out too much to my doc, or at least not until after the holidays. There is no way I am spending my Christmas locked up. I'm also worried a bit how the stress of this pain will affect my kidneys. I look forward to any suggestions you may have. I know there's a few people in group who have regular encounters with their pancreas. Maybe you have some golden rules on what helps, although I guess if you did you wouldn't have the problem. Also, please forgive me for not participating too much at this point. I am always checking my e-mails, but sitting down is the worse position for me. I don't know if it's typical, but it feels like there is something pressing down on my pancreas when I sit and the pain gets worse. So, I either stand or I lie down. Mojo "The LUPIES Store" Come check out our store...http://www.cafepress.com/thelupies"The LUPIES Web Page"http://www.itzarion.com/lupusgroup.html"The LUPIES online photo albums!" Check out what your fellow Lupies look like...http://www.picturetrail.com/gallery/view?username=lupies Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 19, 2003 Report Share Posted December 19, 2003 Probably so - Yep, Lupus means you go round and round in circles - but sure doesn't mean we have to like it, right? Hiding in my shell a little bit Hello All: Sorry, I haven't been too communicative lately, barely checking my messages. Last week I went for my visit and found out that they'll keep me on the Cytoxan for another year or so. I don't know why it got me down so much, I was expecting something like that. I kinda of expected that. My doc was just trying to spare me a little bit knowing how freaked out I was about chemo, and didn't tell me it would be an extended process. He pretty much told me it would be 6 or 9 months of monthly followed by two or so session every three months. It's every three months now, so I can pretty much handle it - still I was hoping...................... The other thing that is keeping me quiet is my pancreas. To give you a bit of history: it started to bother me for the first time in July 2002 (about the time my mega flare started), but I was on Zocor at the time. It bothered me, and bothered me, and I was in pain, but not to a point were I had to go to the ER. Around mid September I stopped taking Zocor and the pain magically went away. Although all my test were showing ok, the doctor just wanted to check if Zocor was causing this pain. So three weeks later we restarted Zocor in hopes that it was just a coincidence. Five days later my hubby took me to the ER and I spent 5 days on IVs for acute pancreatitis. Since that was the peak of my flare, my doctor was still hoping that it was all a coincidence and that the attack was caused by Lupus, not Zocor. But I wasn't willing to risk another attack like that for a while and told him I wouldn't consider taking Zocor for a while. So..... this past July we tried it again, and two weeks later I got another attack and told my doc I would never consider Zocor again. Thought that was over, it's now been months since I stopped taking it and have not been on any other similar medication. I've started feeling the pain around last Wednesday. It was subtle at first, but there constantly. Saturday night I couldn't sleep. My doc was right, it's not Zocor! I'm one of the last people (probably after Deanna ) to go to the ER, but I'm worried this will hit me hard again. That's how it started previously - subtle for a while until WHAM!!!! in the middle of the night. I have no clue what to do about this on my own. From what I understand there really is no medication for pancreatitis, all you get is the IV and diet for a few days. Is there any particular sort of diet that can help, or a certain group of foods that can aggravate the pancreas. I haven't been doing anything different. Any pain medication that can help - I'm kind of hoping for something over the counter. I really don't want to stress this out too much to my doc, or at least not until after the holidays. There is no way I am spending my Christmas locked up. I'm also worried a bit how the stress of this pain will affect my kidneys. I look forward to any suggestions you may have. I know there's a few people in group who have regular encounters with their pancreas. Maybe you have some golden rules on what helps, although I guess if you did you wouldn't have the problem. Also, please forgive me for not participating too much at this point. I am always checking my e-mails, but sitting down is the worse position for me. I don't know if it's typical, but it feels like there is something pressing down on my pancreas when I sit and the pain gets worse. So, I either stand or I lie down. Mojo "The LUPIES Store" Come check out our store...http://www.cafepress.com/thelupies"The LUPIES Web Page"http://www.itzarion.com/lupusgroup.html"The LUPIES online photo albums!" Check out what your fellow Lupies look like...http://www.picturetrail.com/gallery/view?username=lupies Quote Link to comment Share on other sites More sharing options...
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