Opinions Please!

ok so I had my follow up with the new rheumy today, and lets say it was NOT a good day and I really wanted to say somethings!!! She came in with an attitude and left with one not to impressed!!! She is still saying I don't have lupus but undifferentiated connective tissue disorder. My main doctor still disagrees and says I have lupus. So I have now been off the plauqinille for 3 months. She told me again I should be on it. Even though I didn't feel any better on or off it but the same it helps keep the disease at bay. I do not want to be put back on it. She told me its my body and I get to choice but in the same breath told me if I dont take it she will stop my care. They do want to get me on methotrexate to be able to try and get me off the prednisone. And shes the only one who can prescribe the methotrexate.so i dont know what to do. take the long road of trying to get off the prednisone without methotrexate or go back on the plaqunille. my main doc said go ahead and amuse her get off the prednisone and then stop the plaquinlle again. but why go back on and off? im already off. there also checking to see if the prednisone is causing vascular necrosis in my hips. I have also been having realyl sore ears so brought it up today and found out im grinding my teeth because of all the stress! Sigh!!!!!

Also I have been reading or have seen on sights that there is not one test that says you have lupus. But that they go off of symptoms and certain lab levels. Is this true? Also this rheumy has lupus and she is basing everything off of how she was diagnosed. And Mayo and my primary are saying that my lupus is A typical and she is saying there is no such things. and with her little tude that if thats what there saying then you should go back to mayo.... just not impressed at all!!!

Good morning. I'm certainly no expert, but I would look for a new rheumatologist. First of all there is such a thing as a-typical lupus. My primary spoke of a case in which all the patient experienced was a persistent sore throat and after many tests to rule things out found out she has lupus. Second of all, it is so unprofessional of your doctor to use her personal experience with the disease to determine how you should be feeling or reacting to meds. If nothing else, find a new rheumatologist if at all possible. I really hope things get better for you.

There is a thin line between UCTD and lupus and treatment is still the same You have serious kidney disease and methotrexate is generally not the drug for that And it also is not a very safe drug either for long term use. Prednisone is not fun but it is saving your kidneys at this point Plaquenil is used to also minimize organ damage and future flares- no you don't necessarily feel a lot better with Plaquenil but you still have your kidneys don't you and you are not on dialysis. I have lupus but have been diagnosed with uctd at times when my disease is less active and the RX was the same regardless of whether I had UCTD or lupus- 6 of one 1/2 dozen of the other. I also had serious kidney disease among other things and without my drugs would have been dead a long time ago A very dangerous game to fool with your meds to try to prove your doctor wrong especially when you already have serious organ damage and at a young age

I do understand the frustration with a different rheumy, a different diagnosis. My first rheumy diagnosed me with lupus and was very confident. She put me on plaquenil. I have been on it for 1.5 years and it did help a little. But, health insurance changed so I had to find a different rheumy. The new one said that he feels I do not have lupus. All tests were normal. He also said that if it weren't for my previous test results from the old rheumy, he would not even consider it lupus. So, he said it's possible that the new lab results were due to the plaqenil working. So, he diagnosed me with inactive lupus. it's frustrating, but I do like how detailed he has been with my testing. He had me tested for carpel tunnel and found I have it in both hands. I wear wrist braces at night and my arm pain, finger pain and numbness are gone. I still feel like crap most days, but he knocked a few pains off my list. I hope you find someone you can work with. Hugs!

It is very smart to stay on plaquenil I know first hand. I was dx with lupus like symptoms years ago but they said I just had Hashimotos. They put me on plaquenil then and I took it for years and had no symptoms. About 8 years ago I had a doctor take me off of it. I had a lot more joint pain and skin problems in the last few years, not thinking about lupus! I went on a Medifast diet a couple of years ago, after 4 months I felt terrible. First my thyroid crashed and then I was in a lupus flare unlike any other I had ever had. It took about 9 months to come out of it, but I was put on plaquenil right away. My tests are all negative too, but all my doctors realize that I have lupus. If your Rhuemy has it and is that close minded I would get another one for sure. I would suggest you stay on Plaquenil it will prevent serious organ damage as artchick said.

You have to be your strongest advocate!


I’m so sorry your rheumy has an attitude. I would report her for saying she wouldn’t treat you anymore unless you take the plaquenil. That’s unethical. My father is a doc and he would never discharge a patient for not wanting to take the meds. That said is there a reason you don’t want to take it? I’ve been on it for 30 years, only stopped it for my pregnancies and breast feeding. It doesn’t do much to help the lupus symptoms but it definitely slows the progression of it. I know that from paying close attention to my body after I stopped and restarted. I hate predisone and do my best to avoid it. I had to take so much of it when I was a teenager and young adult that my bones are already showing signs of osteoporosis. This is just my experience so please don’t feel like I’m saying you’re crazy for not taking plaquenil or for being on prednisone.
As far as diagnosis, I was diagnosed based on symptoms. The new guidelines are that a patient has to present with a I think 5 out of 7 symptoms, could be different numbers as my memory is bad. One of the ones you have to have is the butterfly rash. If you don’t get that then it’s not considered lupus. My labs didn’t turn positive for lupus until several years after my dx. I was originally diagnosed with Sjogren’s at 9 then kept adding various diseases on top of that. My ANA is always positive. If you go to the lupus foundation’s website or Johns Hopkins Lupus center site they have the current way to diagnose lupus and positive labs are not necessary for dx. Older docs don’t always know that they changed the method of dx.
Sorry this is long but I wanted to address all of your concerns. Please do consider writing a letter to your state’s medical board about her threat. Not wanting to take a medication is not a reason for firing a patient. Gentle hugs, Annemarie

Actually a doctor can discharge a patient who refuses medical treatment- he has the right to not assume responsibility for your well being if you are not compliant. It has to be team work particularly in a serious illness like this and both have to participate - doctor and patient for the outcome to be good. If you don't like this rheumy then find another but this is not your 3rd or 4th rheumy in 6 months? Maybe you could just transfer your care to your primary since that is who you are most comfortable with.

I would absolutely agree with Nates mom and look for a new Rheumy if you are uncomfortable with the one that you have.

That said, I do understand a bit about why the doc is acting like that as mine did something of the same thing early on when I wasn't taking my disease as seriously as I should have been. Because our treatments are soooo limited, refusing to accept the treatment leaves the doctor with little to do but watch you get worse (not something a doctor ever wants to do) as her hands are now tied. I know that that is not what you would want to hear, but this is how it was explained to me.

As to atypical lupus, nearly every patient has different symptoms or degree of severity of symptoms. Now, I am not an expert, but my doctor specializes in lupus and is wonderful about answering any question I have. I am atypical in that I am ANA neg, which happens in only 1% lupus patients. Others are atypical in that their malar rash is very noticeable while others are not. There just simply is "no one sizes fits all".

You need to do what is best for yourself but remember that sometimes our options are limited and we have to make the best of a bad situation.

I guess what I am saying is you must trust your doctor and if not you need to find a new one. That said, do remember that unfortunately there are not that many treatment options for people with lupus. That is changing but it may not be changing as quickly as we would like.

I know that we were diagnosed at nearly the same time and I have gone through much the same things with different treatment options. I know that many times the cure is worse than the disease, but please take care of yourself and stay as positive as possible.

Big hugs,


Very well said DeAnne! Thanks!


Hi!!!! sorry that you are not getting the answers that you want -smile my heart goes out to you. But just stop and think for a moment which doctor do you feel most comfortable with ??? More chance that is the doctor you may need to stick with you know!!!! your comfort is a big part of this Lupus stuff for a piece of of mind it's your choice which one to trust in ...Beverly L.

Thank You all!! This rheumy is the only one that is close to home, so I am going to stick with her for now. Even thought I absolutely dread too. I just dont want to start all over as we are finally at the point of getting me off the prednisone which is devastating my body. I will have to go back on the plaqunille as I have no other option. Once I am off the prednisone they will then take me of the methotrexate as well. They are only using it to get me off the prednisone. Once we hit that spot I may try and find another one. I am just tired of being treated so horribly by all the doctors.

My PCP said its hard with rheumys as their like psychologists they all have there own opinions. He also said she stuck the Undifferentiated connective tissue disease on me because she cant figure it out. He said that if its not lupus than what is it. I have been tested for everything and Mayo took many weeks before diagnosing me with it he also said they did not come to the diagnoses lightly. The new rheumy asked why they told me I had lupus because its on my records now and I will be stuck with it forever. Sigh... So confused about her....

Your PCP is right. They don't come up with the diagnosis lightly, and it limits their treatment options. I always fall back to the letter that Scott posted some time ago about the frustration of docs treating patients with lupus. It made so much sense to me...if your job was to fix something and you know it's not fixable, it's going to be frustrating.

That said, lupus does give you a bit of a hand up in that there are studies that are taking place for new meds if you want to participate. It should also help you if you choose to file for disability.

I know that you are a strong woman and will look for all options to take control of your disease.

Biggest hugs,