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Discussion Starter #1
Hi,

I'm not really sure what I'm supposed to be doing. Could be my fault (little ADD goes a long way :rotfl: ) Am I supposed to call my doctor every time I think I'm having a flare? I think I may have a sore (painless blister) in my mouth (can feel it with tongue). Or this summer when I had some sort of rash on my legs (upon further research I think it was vasculitis, but it's since gone away). Or how about when the fatigue hits? I usually just take care of myself, go to bed early, etc. Honestly, what good would calling the doctor do, other than having it noted in my charts? When I am sick - sinus infection, ear infection, etc) my rheumy tells me to go to the GP .... but shouldn't she be told too?

One other question - what are your appts with the Rheumy like? Mine listens to my heart, takes my bp, looks at my fingernails and legs .... asks how I am, but ignores signs of depression, and that's about it. Is that a normal appt?

Thanks all. Appreciate your help

Ann
 

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Hi Ann,

Knowing when to call the doctor can be tricky. In general if it is not due to Lupus, like an ear infection I call my GP. The rheumy does not need to know about it. My GP usually sends my rheumy a note anyway. On small things like blisters and rashes that go quickly or a flare that doesn't need meds I just make a note of for the next visit. A flare that doesn't go away after three or four days of rest I figure needs some attention. A new symptom such a breathing problems or chest pain I call in.

My appointments are usually uneventful. We actually spend more time talking about other things as the doctor gives me the once over. Naturally the doctor is watching my speech patterns and other neurological signs as we communicate. He does go over my meds, my recent bloodwork, takes my bp, listens to heart and lungs, checks reflexes, fingernails, mouth, eyes, glands, pulse at ankles and muscle strength. Unless I have something new that is it.

Have you brought up your depression? If your rheumy continues to ignore it see your GP.

Take care,
Lazylegs
 

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Discussion Starter #3
I'm slightly confused. I do have fatigue .... not too bad yet, but last year it really got to me around November. I'm on plaquenil ... why would I have to call the dr. and let her know I'm tired if I'm already on meds?

Why would the doctor watch for my speech patterns? My bloodwork is done after the appt, but she usually emails me with result. Mainly it's my platelet count; I also have ITP and it dips low sometimes. I see a hematologist for that. And a nephrologist for my kidneys, although he says everything is ok.

As for the depression - I usually just try to work through it. She knew I was depressed last year, but only mentioned it after it had lifted. I honestly don't know what can be done about it .... unless there's a magic pill to take away the lupus? Meds would just mask the problem (at least that's the way I think of it). I have had lupus fog and spoke to her about that; she said that she send me to a neruologist but there's really nothing to be done about it. I opted not to go. I'm seeing enough "ologists" at the moment.

Depression only hits when I'm tired. Knock on wood, so far so good.

Thank you for answering my questions

Ann
 

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I go to the doctor when I have something that needs to be treated. Smaller stuff (vasculitic rash on my toes for example) I would not contact the doctor but slurred speech I would as for me that always means I am likely to get very sick very fast.

Most rheumies don't want to know everytime you get treated for a sinus infection - they will want to hear from you if the sinus infection kicks of a flare that needs treating. Although, depending on how things work in your neck of the woods, your GP may be involved in treating some of your flares between rheumie appointments.

Over time you will figure out what you do and don't need to tell a doctor - honestly if I rang the doctor everytime a bout of fatigue hit I would definitely need to put him on speed dial.

cheers

Raglet
 

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Hi Ann,

When you are conversing with your doctors they are watching (or should be) for all sorts of little nuisances and you would never even notice. Since I have neurological problems they key in on speech patterns, movement, limb angles, etc. It is the sum of what you say, the lab tests and their observances that give them an idea of what is going on.

I wouldn't normally call in for fatigue either. Extreme fatigue along with certain other symptoms would trigger a call. In my case those symptoms would most likely be neurological in nature. Hopefully you won't need to call between appointments.

Take care,
Lazylegs
 
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