Guest guest Posted July 10, 2002 Report Share Posted July 10, 2002 I was diagnosed with RA about 18 months ago. It is very active, but most of the time I can function pretty well, even though it is painful to do so at times. We all learn to adjust and stay within our new limits... Anyway, my question is " When do you call the doctor? " I have rarely called between visits even when in a flare, because I know he will just tell me to increase the Predisone for a short time. (The only time I called is when my big toe got so inflamed it required a shot to get it calmed down.) Usually, I just put up with flares, increase the pred, get more rest and adjust my activities. I wonder, though, if this is the right approach. Do the doctors judge the severity of our disease by how much we complain between visits - like the squeeky wheel? I would be interested to know your experiences... Right now I am on MTX (17.5mg), Arava(20mg) and Predisone (5mg daily - can increase up to 20mg during a bad flare, then taper back down to 5mg). I also take Skelaxin occasionally for that killer neck pain, lots of vitamins to help my immune system, and I couldn't sleep at all without my Elavil. I had to buy a weekly pill sorter to keep them all straight! However, after 8 months of haggling with my insurance company, I'm finally going on Remicade next week. The meds I'm on just aren't cutting it. I still have lots of pain and fatigue. I'm looking forward to being " normal " again. Although I don't post very often, I'm VERY appreciative of the knowledge and support this group gives. Your courage in the face of adversity is inspiring and helps me not to whine too much! Thank you SOOOO much! Vikki Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 10, 2002 Report Share Posted July 10, 2002 << Anyway, my question is " When do you call the doctor? " I have rarely called between visits even when in a flare, because I know he will just tell me to increase the Predisone for a short time. >> Hi Vickki, My Rheumatologist's office is really kind when I do call, but he's told me I can increase the prednisone during a flare and that's what I do now as well. If I got really bad and couldn't control it with prednisone and the pain meds I have I would certainly call. I was thinking of writing a list about the problems I've had during the month (very brief, of course) so I remember to tell the doctor. Also, I am going to start making a list of refills I need because they ask me what I need refilled and I forget then have to have them call it in. Hopefully the Remicade will make a big difference and you won't need to worry about flares! :-) Hugs, Carol [ ] When to call I was diagnosed with RA about 18 months ago. It is very active, but most of the time I can function pretty well, even though it is painful to do so at times. We all learn to adjust and stay within our new limits... Anyway, my question is " When do you call the doctor? " I have rarely called between visits even when in a flare, because I know he will just tell me to increase the Predisone for a short time. (The only time I called is when my big toe got so inflamed it required a shot to get it calmed down.) Usually, I just put up with flares, increase the pred, get more rest and adjust my activities. I wonder, though, if this is the right approach. Do the doctors judge the severity of our disease by how much we complain between visits - like the squeeky wheel? I would be interested to know your experiences... Right now I am on MTX (17.5mg), Arava(20mg) and Predisone (5mg daily - can increase up to 20mg during a bad flare, then taper back down to 5mg). I also take Skelaxin occasionally for that killer neck pain, lots of vitamins to help my immune system, and I couldn't sleep at all without my Elavil. I had to buy a weekly pill sorter to keep them all straight! However, after 8 months of haggling with my insurance company, I'm finally going on Remicade next week. The meds I'm on just aren't cutting it. I still have lots of pain and fatigue. I'm looking forward to being " normal " again. Although I don't post very often, I'm VERY appreciative of the knowledge and support this group gives. Your courage in the face of adversity is inspiring and helps me not to whine too much! Thank you SOOOO much! Vikki Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 10, 2002 Report Share Posted July 10, 2002 Hi from my point of view i think that bone scans and blood tests are done twice a year..unless something forutitous happens as you mentioned... i manage it ...the only reason i am seeing a new doctor is because the last doctor screwed up so much and this doctor is in charge of putting me on other meds if necessary...it is a hierarchy thing here in canada.. otherwsie my family doctor simply gives me my Rx every three months..i think it is all indivudualized sam [ ] When to call > I was diagnosed with RA about 18 months ago. It is very active, but most of > the time I can function pretty well, even though it is painful to do so at > times. We all learn to adjust and stay within our new limits... > > Anyway, my question is " When do you call the doctor? " I have rarely called > between visits even when in a flare, because I know he will just tell me to > increase the Predisone for a short time. (The only time I called is when my > big toe got so inflamed it required a shot to get it calmed down.) Usually, > I just put up with flares, increase the pred, get more rest and adjust my > activities. I wonder, though, if this is the right approach. Do the > doctors judge the severity of our disease by how much we complain between > visits - like the squeeky wheel? I would be interested to know your > experiences... > > Right now I am on MTX (17.5mg), Arava(20mg) and Predisone (5mg daily - can > increase up to 20mg during a bad flare, then taper back down to 5mg). I > also take Skelaxin occasionally for that killer neck pain, lots of vitamins > to help my immune system, and I couldn't sleep at all without my Elavil. I > had to buy a weekly pill sorter to keep them all straight! However, after > 8 months of haggling with my insurance company, I'm finally going on > Remicade next week. The meds I'm on just aren't cutting it. I still have > lots of pain and fatigue. I'm looking forward to being " normal " again. > > Although I don't post very often, I'm VERY appreciative of the knowledge and > support this group gives. Your courage in the face of adversity is > inspiring and helps me not to whine too much! Thank you SOOOO much! > > Vikki > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 10, 2002 Report Share Posted July 10, 2002 Vikki, this would be a good question to ask your doctor directly. In some ways, I think you have already answered this yourself. If you know that if you call you will be advised to take more prednisone and so you don't call and take more and that does the trick, then possibly the call wasn't really necessary. On the other hand, if something more distressing happens and can't be remedied by what you normally do, for example, the instance you describe about your big toe, then you should definitely call. It's really a matter of what you want your physician to do when you call. Do you not want to rely on the prednisone? Or is the prednisone really not completely effective? Do you want to decrease the frequency of the flares? How do you want the physician to respond when you call? If you believe the physician could or should be doing something different for you, please convey that to him. I believe that you should voice any concerns to your physician. The doctor cannot read your mind or feel your pain. If you do not reveal what is troubling you, you may be suffering needlessly. Sometimes it is not that your physician doesn't care, it can be that he truly does not realize how much you are enduring. Describe in detail how you are feeling, how many times you have flared and for how long since the last visit, what sort of pain you experience, and how your daily activities are affected. Try to give your physician a very accurate picture of how you are functioning. In general, if you still have " lots of pain and fatigue " and you believe your current meds " just aren't cutting it, " or if you are finding yourself flaring more and more often, then you should discuss your treatment plan with your physician and, perhaps, revise it. Sounds like you have already done that if you are about to try Remicade. Good luck with it! And by all means, if your doctor isn't open to discussion or dismisses your concerns, please find someone else. [ ] When to call > I was diagnosed with RA about 18 months ago. It is very active, but most of > the time I can function pretty well, even though it is painful to do so at > times. We all learn to adjust and stay within our new limits... > > Anyway, my question is " When do you call the doctor? " I have rarely called > between visits even when in a flare, because I know he will just tell me to > increase the Predisone for a short time. (The only time I called is when my > big toe got so inflamed it required a shot to get it calmed down.) Usually, > I just put up with flares, increase the pred, get more rest and adjust my > activities. I wonder, though, if this is the right approach. Do the > doctors judge the severity of our disease by how much we complain between > visits - like the squeeky wheel? I would be interested to know your > experiences... > > Right now I am on MTX (17.5mg), Arava(20mg) and Predisone (5mg daily - can > increase up to 20mg during a bad flare, then taper back down to 5mg). I > also take Skelaxin occasionally for that killer neck pain, lots of vitamins > to help my immune system, and I couldn't sleep at all without my Elavil. I > had to buy a weekly pill sorter to keep them all straight! However, after > 8 months of haggling with my insurance company, I'm finally going on > Remicade next week. The meds I'm on just aren't cutting it. I still have > lots of pain and fatigue. I'm looking forward to being " normal " again. > > Although I don't post very often, I'm VERY appreciative of the knowledge and > support this group gives. Your courage in the face of adversity is > inspiring and helps me not to whine too much! Thank you SOOOO much! > > Vikki Quote Link to comment Share on other sites More sharing options...
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