Lupus treatments

I've spoken to a few girls on here with Lupus, just wanted to know what kind of treatment you guys receive? I had an appointment last week but it ended up being cancelled because my referring Dr. changed his IPN.

I was put on prednisone (sp?) a while back and it helped a little but it gave me the runs   I guess Im just trying to find someone who can relate. I dont talk about it much with anyone, but at times I feel very overwhelmed. Also if Lupus affects your kidneys how did they go about testing for that? I've been having health problems for years, and it seems like every time I've been hospitalized my potassium is low and I have ketones in my urine.

I have a friend with Lupus and every now and again, if it gets bad, she has to have a kidney biopsy done. She's on a smurf tonne of meds and will probably be on the waiting list for a new kidney soon. The doctors have told her to prepare for dialysis within the next few years, too.

Wow. Sorry I just want to watch this. I found out today I have Hughes syndrome which from what I can gather off google is similar to lupus and sometimes mistaken for lupus.

Quoting Elliot Reid:" I have a friend with Lupus and every now and again, if it gets bad, she has to have a kidney biopsy done. ... [snip!] ... be on the waiting list for a new kidney soon. The doctors have told her to prepare for dialysis within the next few years, too."

Yeah, seems like I have a pharmacy on hand. Sorry about your friend =/

Quoting Onalee's Mummy:" Wow. Sorry I just want to watch this. I found out today I have Hughes syndrome which from what I can gather off google is similar to lupus and sometimes mistaken for lupus."

I just googled what that was, yeah they have similar symptoms. I'd never heard of it.

<blockquote><b>Quoting .:Mary:.:</b>" I just googled what that was, yeah they have similar symptoms. I'd never heard of it."</blockquote>


Yeah well thy kept diagnosing me with different things. I forgt how to read and my age and where I lived and they said I was depressed because of the 4 miscarriages I had consecutively (one in my second trimester). This time around my dr tested for it straight up and bam. That's what caused my miscarriages and probably what caused my severe pre-e with my daughter.

I guess for the most part it's not bad. It's really bad for pregnancy but I only really need to take aspirin and it will hopefully control it.

I think you usually get it secondary to lupus. I have it as a primary though because I didn't test positive for lupus.

I'm going to ptank you. Hope you don't mind

I have RA. I know, not the same, but very similar. My nephrologist initially suspected Lupus as well as RA, but tests came back as just RA, not both. I suppose I got "lucky" with just one of the two, though I wouldn't wish either on anyone. Mine is a result of a vaccination, so I am very leery of meds. They will weaken my immune system for sure. They can also cause heart disease and a whole laundry list of horrid side effects I just don't feel like dealing with on top of my immune system slowly killing me. But, I do urge you to research ModuCare. It is what my nephrologist has me on now. It is a plant sterol, 100% natural and has MANY good outcomes with putting auto immune diseases essentially into "sleep" modes. I myself have hypokalemia as well, which I have had for YEARS and years, since I was a teen, which I think is the main reason my nephrologist suspected Lupus as well. Anyway, are you seeing a nephrologist or just a rheumatologist? To test your kidneys they will do ultrasounds, xrays, blood work and a 24 hour urine test. At least those are the things I went through. This is the site for moducare, I really hope you look into it. http://www.moducare.com/
http://www.moducare.com/pdfs/NH-Moducare.pdf

Quoting Onalee's Mummy:" <blockquote><b>Quoting .:Mary:.:</b>" I just googled what that was, yeah they have ... [snip!] ... to lupus. I have it as a primary though because I didn't test positive for lupus. I'm going to ptank you. Hope you don't mind"

Wait, what do they think caused your severe pre e? And with this Hughes disease, does it cause hypokalemia?

<blockquote><b>Quoting Moses.:</b>" Wait, what do they think caused your severe pre e? And with this Hughes disease, does it cause hypokalemia?"</blockquote>




I'm not sure what that is? If you google highes syndrome look at the second website.

It's only a bloodiest to diagnose (and they look at our medical history). It is apparently really under diagnosed

Quoting Onalee's Mummy:" <blockquote><b>Quoting Moses.:</b>" Wait, what do they think caused your severe pre ... [snip!] ... website. It's only a bloodiest to diagnose (and they look at our medical history). It is apparently really under diagnosed"

sorry, low potassium. I googled, the only thing I have the same symptoms with it is the memory and head and brain issues.

<blockquote><b>Quoting Onalee's Mummy:</b>" <blockquote><b>Quoting .:Mary:.:</b>" I just googled what that was, yeah they have ... [snip!] ... to lupus. I have it as a primary though because I didn't test positive for lupus. I'm going to ptank you. Hope you don't mind"</blockquote>



No don't mind the PT. Good thing is they diagnosed you so at least you know the reasoning behind that. I was about to give up on going to the Dr. I've been sick, in & out of hospital for years and was always just told to take pain meds. Thankfully the Dr I started seeing 3 years ago took me seriously. It took a year before he even tested for lupus but he did and now I don't feel so crazy.

<blockquote><b>Quoting Moses.:</b>" I have RA. I know, not the same, but very similar. My nephrologist initially suspected Lupus as well ... [snip!] ... is the site for moducare, I really hope you look into it. http://www.moducare.com/ http://www.moducare.com/pdfs/NH-Moducare.pdf"</blockquote>




For now I'm just seeing a rheumatologist. I think that's probably the worst part (when your bones hurt) it'll keep me up at night, or make small things such as sitting or filling out a form unbearable. I will check that out when I'm in my desktop thanks. As far as the kidneys I've only done the 24 hr, I'm still waiting on those results. Well they're at the drs I just have to postpone my appointment until my new referral comes in which can be weeks. As long as I don't have to do the stool test again I will be thankful lol, that was one of the grossest tests I've done followed by the endoscopy, yuck.

Quoting .:Mary:.:" <blockquote><b>Quoting Moses.:</b>" I have RA. I know, not the same, but very similar. ... [snip!] ... do the stool test again I will be thankful lol, that was one of the grossest tests I've done followed by the endoscopy, yuck."

Oh man, I'd have died lol. I am surprised they haven't sent you to a nephrologist already. I get the bones hurting. Right now I have a lump in my wrist from the inflammation. Makes pretty much everything unbearable and my house is suffering tremendously because of it. I don't even fold my laundry anymore because of how hard it is to bend my wrist. Mopping is hell. Cooking is fine as long as there isn't prep work going into it. My fingers are already deforming, as well as one of my feet. I have had some neurological issues I thin is just the RA. I don't have a day I live without pain. I don't have an hour or even a second. It's exhausting. I always heard rheumatoid arthritis and just thought meh, just arthritis. Which is very very misleading. It isn't JUST arthritis. I'd give anything to trade it for say, osteoarthritis. When I was first diagnosed I didn't have the entire grasp of what I was diagnosed with. What my life would be for eternity with this. I think it really hit home when my nephrologist was comparing it to Lupus and said "it's kind of like its twin, but not identical." If you ever need to talk, I am here. I know how hard it is going through this without someone to just vent to who understands the pain and suffering you go through day to day.

Quoting Moses.:" Oh man, I'd have died lol. I am surprised they haven't sent you to a nephrologist already. I get the ... [snip!] ... it is going through this without someone to just vent to who understands the pain and suffering you go through day to day. "

Agreed. Yeah I always thought that too, arthritis heh you rub some oily smelly lotion on and tadaa, yeah no. I was just recently sent to the RA specialist, so who knows if they'll refer me to other Dr's, for now I just see my regular Dr, a gastroenterologist, and the RA. It really took forever to be tested. It started because I kept having these bad pains on my hand and couldn't even wash dishes. I was working at the time and was having a hard time getting my work done, so I saw my Dr. Was told it was Ulnar Neuropathy and would go away, it never did, during that time I also told him about all the stomach issues I was having so he checked me on that... Fast forward I was pretty fed up and decided well I wont go back, but then ended up getting swollen eyes and rashes thats what brought me back in and thats when he tested.

Yeah most people dont understand, which is why I chose to not even talk about it with friends. Everyone's tired, everyone's body aches so I must be wanting attention. I was at a dinner in December and this girl was asking me if I had tried the meatballs, because I had only ate a little. I simply told her no, I didnt want to eat a lot and feel sick, plus I dont really eat red meat. I didnt go into detail about anything and she goes to saying it was mental. That really irritates me, I wish I could eat a full meal or a cheeseburger! Or even when I say "Oh Im tired" everyone wants to jump in and tell me about what time they went into work, what time they go in tomorrow, what they did all day.

Quoting .:Mary:.:" Agreed. Yeah I always thought that too, arthritis heh you rub some oily smelly lotion on and tadaa, ... [snip!] ... wants to jump in and tell me about what time they went into work, what time they go in tomorrow, what they did all day."

Finding a dr who would listen was my problem. I started having problems almost 2 months after my son was born, it hit me like a ton of bricks and I was practically bed ridden. My feet would stiffen so badly and swell to the point I couldn't walk on them at all. My hands would lock up and swell. I was so tired all of the time. My hips were ridiculous, my knees. Nobody understood, even I didn't. I saw a dozen or so doctors who said I was overweight, or I smoked. No smurf, those are things I have dealt with for over a decade, this isn't because I am an overweight smoker!!! I was virtually ignored by all doctors until my OBGYN sent me to a nephrologist. In our very first appointment he listened to me for a good 20 minutes, then took my hands, examined them, then felt them, then did the same with my feet and that's when he said you have Rheumatoid Arthritis. I am 99% sure but want a test to confirm. I also suspect Lupus. FINALLY. A doctor who listened and wanted to find the cause of this. Answers are better than nothing. For 2 years I spent being told I was a fat lazy ass essentially, and I began to believe it myself. Having validation helped comfort me. It wasn't all in my head. My often debilitating pain IS real. Having people understand is pointless 99% of the time as well. I am told things like "Oh I know your pain, I have arthritis in my toe too." No, you don't lol. Your arthritis in your toe isn't affecting your entire body, your immune system isn't running amuck destroying your healthy joints, bones and organs. I know they mean well most of the time, but still. Sometimes I can tell they don't mean well and are just trying to make you feel like smurf for complaining. I try really hard not to complain, but it's hard when your feet are so stiff and swollen you can't even walk to the bathroom.