So my kidney doctor doesnt believe i have lupus and wants me off all meds. Except my blood pressure and seziure meds. My PCP, gastroenterologist and Mayo clinic said i have lupus. I have been off the plaquinelle since October and have been going down 1mg. Of prednisone every month. I am now at 6mg. according to my docs. The body naturally makes about 5mg of the natural steroid so in a way id be off the steroids when i hit 5mg. The past 2 weeks have been tough!! hardly eating but toast and bananas, sleeping almost the entire day and my pain has just increased! Im worried not being on anything is going to cause a major flare again. It seems as im adjusting it gets thrown out the window. We are also wondering if i am not starting to get rayneuds as both feet turn purple on and off. I am also without a rheumy. As tge one closest to home said i didnt have it because my labs dont match her labs. She has lupus too. And if i wanted to be seen by her i have to do what she says or i can go somewhere else. They have also told me im a-typical and according to her theres no such thing. We went to her to save money from going back and forth to mayo. But haven't gone back to her, she would walk in say what she wanted us to hear or tell us what to do and leave. She also ran several tests after 6 months of high dose sterouds, plaquinelle and other treatments..... so lost and confused!
A difficult disease to live with- it forces many decisions on us It is a struggle to decide if you want to take medications or try to tough it out With your last rheumy I remember you refused her treatment recommendations and a doctor does have the right to not accept a patient for treatment. I don't have any answers for you and hope that you continue to not have another devastating flare. But many times this illness just lingers on without any life threatening consequences so may your summer bring you some relief and answers
Everyone's lupus is different and a doctor that judges only by lab test results shouldn't be treating lupus! I had one tell me it couldn't be lupus because I had had a total hysterectomy and lupus feeds off estrogen, boy was she wrong and the labs showed her just how wrong she was. You need a good rheumy, mayo is probably the best place to find one and remember mayo is a research facility as well and will have more treatment options available and are better at treating the unusual and puzzling diseases.
If Lupus fed off estrogen, then I must not be a man! Sheesh. That’s why it’s called “practicing medicine” and some doctors never really learn. I had the head of rheumatology say to me that I didn’t have Lupus (the first one I saw) because I had a normal ANA even though I have 9 out of 11 off the list and now have since had a positive ANA. I walked out of his office. I would tend to believe the Mayo Clinic. Do the math, you have how many docs saying you have it and how many saying you don’t and which ones are better qualified to be correct.?
Louters, you need to run (figure of speech) away from her soon. You have had too many things going wrong for way too long. You want to get out on your own for real, go to school, etc but she doesn't seem to have your best interests at heart. You are too young to not keep trying to find the right fit for you. Good luck, Sweetie! Even though I am not on here so much anymore, I think of you often and sending prayers. Gentle hugs, Reet
Drop that doctor fast! First she is clueless. She is not the standard for lupus. Labs and also symptoms get the diagnosis. Second with an attitude like hers, I feel very sorry for her patients. Seems she lacks common compassion for her patients. She likes to talk and be in control. Third, mayo clinic? What could be better than there. They are a great place to get yr treatment. Have an internist at home follow up after twice a yr appt there if you can -if there are no other rheumies. It is so hard to find a good dr. You have to kiss a lot of toads there too
I wanted to say one more thing. This really agitates me. She said do what she says or go somewhere else? Who the hell does she think she is? I think she forgot you are HER boss and pay her not the other way. I would have said, no lady, you listen to me since I PAY YOU, you’re fired and I am on a big lupus support group site, so I will be making sure they know who you are and also ya know what there is this cute little site called ratemds.com and you better believe I’m rating you. Oh man that doc makes me so mad for you!! I better stop lol!!
Thanks everyone for the love and support! I did choose to go off the plaquinelle as my kidney doc. wanted me off and 2nd we did not and still haven't seen a change on or off and i didnt want to take chance with my eyes. Kinda stubborn, but i have reacted negatively to so many drugs so quickly. I didnt want to take a chance on loosing my eye sight. My pcp thought maybe a good portion of what was going on was from the prednisone, but im actually feeling worse. The only thing that has changed is my muscle strength. My pcp also said ill probably never get off of it.and if im still struggling he'll probably send me back to mayo. And follow wuth him here. So its not unlikely to be sent back. Yeah we weren't impressed with her at all. My docs. Said they did not come to diagnosing me with lupus lightly it took 3wks. Of seeing every specislist at mayo and every test imaginable before diagnosing me. It wasnt a light diagnoses. Its summer and i just want to have some normal days with friends! School in the fall and i want to go back to campus so bad but i dont know if i can physically handle it yet. I csn hardly walk into church without feeling weak and out of breath not sure how i can make school. Im tired of my right side going weak and not able to move it when ive done to much. Having to go shopping in a wheelchair because i can't make it into the store without being exhausted. Id love to actually tell people i feel somewhat like a person. I know though even if they get it under control ill still have to be careful. Sorry for the rant its just been overwhelming and frustrating! Im also tired of people telling me im faking all this beacause i dont get enough attention. Or if you take this vitamin this essential oil ir you try zeal you'll be magically cured and all be gone. Or even you will get better and one day lupus will be gone. Im like serioudly, if this is for attention this is the worst way to get it!!!
I know! She assumed somethings that we said with my other doctor and came stroming in with and attitude and marched right out with one! I could tell i knew she wasnt happy with me. They were going to try methotrexate to get me off the steroids faster but we could only get it through her. So my pcp said play the games to get you off the prednisone because thats what we need to do. So i went to call her to tell her id do what she wanted she didn't call back for a week and didn't even hear one word i said! She only heard what she wanted to hear. So i told my pcp ill take the long way of getting off the prednisone and i am. She labled me with undifferentiated connective tissue disease. And dont you think 6 months of treatment would alter labs?
Cameron said:
I wanted to say one more thing. This really agitates me. She said do what she says or go somewhere else? Who the hell does she think she is? I think she forgot you are HER boss and pay her not the other way. I would have said, no lady, you listen to me since I PAY YOU, you're fired and I am on a big lupus support group site, so I will be making sure they know who you are and also ya know what there is this cute little site called ratemds.com and you better believe I'm rating you. Oh man that doc makes me so mad for you!! I better stop lol!!
Yea people say dumb things sometimes. Usually because they just want to fix it and make it go away. People don’t like dealing with scary things so they figure out a way where it doesn’t exist. Just ignore them which is hard but you know what’s going on with your body. The first year I was sick I was just like you. I was exhaustd going to the kitchen and everything was an effort. After a year it did get a lot better. A lot had to do it with me not fighting the fact I was sick with small kids. I learned to only use 80 percent of my energy. If i used more I’d pay the price for days or weeks. Using 80 made me more effective day after day. It takes years usually to get diagnosed with lupus so not surprising your kidney doctor is even more clueless than rude. You have a great team at mayo and just follow their lead. It will get better. There are ups and downs but as you gain knowledge you find ways to cope
Lupie said:
Yea people say dumb things sometimes. Usually because they just want to fix it and make it go away. People don't like dealing with scary things so they figure out a way where it doesn't exist. Just ignore them which is hard but you know what's going on with your body. The first year I was sick I was just like you. I was exhaustd going to the kitchen and everything was an effort. After a year it did get a lot better. A lot had to do it with me not fighting the fact I was sick with small kids. I learned to only use 80 percent of my energy. If i used more I'd pay the price for days or weeks. Using 80 made me more effective day after day. It takes years usually to get diagnosed with lupus so not surprising your kidney doctor is even more clueless than rude. You have a great team at mayo and just follow their lead. It will get better. There are ups and downs but as you gain knowledge you find ways to cope
Hi Getting better blessings coming your way. I started having symptoms in 1976 have been diagnosed with Lupus by some doctors and told I don't have it by others. It depends on their debt of knowledge.
have had Lupus most of my life...but never had positive labs...we are special and unique in our own way. Doctors
should not treat lab reports but the patient! I have been afraid to add more toxicity to my body and often refused meds. Never have taken plaquinell as afraid of kidney damage. I did take prednisone for this flare up and shortened process by a few weeks. It is always a choice of the lesser of two evils it seems.
My worst flare up about 5 years ago...I did not take any meds...I had success with meditation and asking the Holy Spirit for healing...like a bath in cool purple light flowed over me and I went to sleep..when I woke the fire was out.
This last flare started May 15 and I just past thru the firestorm...last bad flare was five years ago. I am 72.
Stress brought on the flare. 2 Margaritas set it on fire.
One of the things that has helped me is flax seed. It is necessary to build a new cell wall...therefore necessary to repair any bodily tissue. I like the seeds rather then oil...as if oil is not stored right it may not be as effective.
I grind the flax in coffee grinder, add about 1 Tbs to oatmeal and at least 1TBs of yogurt. Does thin blood a little
Thanks everyone! I haven't been back to her and have just been seeing my PCP. right now im trying to recover from a very very looong weekend. So im in bed sleeping on and off trying to keep my pain level down. Im now at 5mg of prednisone last time i went down a mg i felt so bad for almost the whole 3 wks. So just when im feeling a little better from going down its time to go down again.... :p
You don't know could medical care till you have had bad. A Rheumy is the most important doctor we have, when you have lupus. I had to let my first Rheumy go because of so many reasons. The one I have now is great, she listens to me and we discuss my options.
Good luck to you.
I’m on my 3rd!! He is such a great Rheumy. My pcp fired my last one and hand picked this one for me. It sure is true about not knowing good medical care until you’ve had bad.
zippy said:
You don’t know could medical care till you have had bad. A Rheumy is the most important doctor we have, when you have lupus. I had to let my first Rheumy go because of so many reasons. The one I have now is great, she listens to me and we discuss my options.
Good luck to you.