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Just back from Rhumey

557 Views 7 Replies 5 Participants Last post by  kjoyinri
Hello everyone, I just got back from my Rhumy dr. I was sent to her after my primary dr ran a bunch of tests and then wanted the rhumy dr to explain the results to me.. She said I have 3 of the criteria for lupus but did not want to diagnose until I have 4. The impression she gave me is that I do have lupus but not severly yet. She said when I get one more sign she will start me on plaquinil.. My blood work showed a high ANA and SED rate, The lupus profile showed Smith Antibodies high, Anti-histone ABS high and Anti-DNA high. I am not sure what all those mean, but she is running a urine test for protein, a CBC test and she ordered x-rays of my hands and feet. She also said I had fibromyalgia.. not to sure what that is all about... So do you think I have lupus? And if so, is there anything I can do on my own to slow the progress? She said my organs don't seem to be involved yet and I would rather it stayed that way! Any insight would be appreciated...

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Hi Kathy!

I'm a bit surprised the rheumy did not diagnose you with lupus at this appointment, as positive anti-Sm and anti-dsDNA results as very specific for lupus. Some doctors are conservative (mine included), but withholding treatment in light of your test results seems out of line to me.

Would it be possible for you to get a second opinion?

Welcome to the forum :)

Lupus is diagnosed by symptoms too, that is, what the patient reports as being wrong as well as by signs, which is what the doctor notices and tests like Xrays reveal. So the question is, what symptoms are you experiencing ?

As it is, the bloodwork has definite indications of lupus: the SED rate means there is inflammation, an abnormally high ANA is a criterion for a lupus diagnosis and the anti Sm and dsNA out of normal range are dead clinchers for a lupus diagnosis, assuming there are symptoms. The anti histone antibodies are often high in lupus but don't play a major role in diagnosis. You already have four important indicators.
It is curious that a CBC and a urine test haven't already been done but maybe she is checking up on them again as part of her own diagnostic testing.

Treatment depends on needs and shouldn't be delayed waiting for worse to happen. The Plaquenil is a disease modifying medicine helps stops disease spreading it is an invaluable medicine with virtually no serious side effects. If there are signs of kidney disease for example, other meds might be used initially.

I suggest you make a list of all your symptoms - what makes you think something is wrong and took you to the doctor's in the first place. Typically there are joint aches and pains, fatigue, hair loss and quite often skin problems. If you check out the Criteria lists pinned at the top of not yet diagnosed you will see a list of the sorts of complaints people have and in the " alternative criteria" list, features of health history that many people with lupus experience.

Fibromyalgia is suffered by about one third of those with lupus.
It is treated for the most part with antidepressant type drugs that help restore better sleep patterns which are a feature of fibro.
Sometimes it is hard to distinguish between what are fibro symptoms and what are lupus symptoms. The only test for fibro is applying pressure to 18 points on the body. If there is an abnormal pain reaction to 11 or more then a diagnosis might be made supported by the patient's account of symptoms.

When is your follow up appointment ?

I'll leave it to others to talk about what we can do for ourselves to make life better with lupus. Nothing can stop the disease progressing if that is what it is going to do, except timely medication, but there are lots of life stye changes that can make life easier and increase general good health as well as not making things harder to bear.

Lupus does not always progress - I get a bit worried when doctors talk about "waiting to see". Waiting what for I wonder. If it is sure it's lupus it should be treated at once. Perhaps she meant wait to see what the urine and CBC tests reveal

I think you will find the forum very useful so don't hesitate to ask any questions. There is lots of information and support here. :)

Let us know how you get on

Bye for now
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Certainly sounds like lupus to me!

I know some doctors and depending on the location have to go by certain rules before making a diagnoses. And yes most go by the 4 different criteria. Hope the doctor places you on the 4th criteria soon. I know I had other symptoms I had were all there and they just didn't say a word to me about it being lupus. And I had no idea what lupus was! I got really bad off before they would even give me a diagnoses. I suffered with mine! :mad: 5 years of suffering. But at first it was mild but then I got super sick and could not take it anymore!
I started getting combative with the doctors too begging them to give me something to relieve my suffering. The worst part is me being stubborn and not showing any positive labs. But I was waiting for myself to feel better half the time to get labs done so I could drive myself there and back. Never realizing that when I felt horrible the test were probably positive. They did eventually come positive. And they still didn't diagnose me until I got a skin biopsy for the rash I had on my arms. Yep! I'm photosensitive! After that test I was finally diagnosed! Wishing you the best
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I would also suggest a second opinion or a very frank discussion with this doctor as to why she at least hasn't started you on Plaquenil already. You meet several of the bloodwork indicators and I have to believe you have some of the other symptoms (such as low grade fevers, mouth sores, skin rashes, sun sensitivity, joint pain, fatigue, etc.!) because symptoms would have been what led your GP to run that initial bloodwork in the first place!

The best ways to prevent lupus from worsening is to start on appropriate medication - and learn to pace yourself and stay out of the sun. Good luck - let us know how it turns out.
Thanks for all your replies

All of you are very helpful and I appreciate it so much. This whole thing started 8 years ago when I went to an orthopedic surgeon because my fingers were always hurting and swollen. That is when the first ANA came up high, he sent me to a Rhumey who told me I had Osteo and gave me celebrex which didn't help much. Next dr I saw said I had RA and sent me to a Rhumy who said I had osteo and pretty much patted me on the head and made me feel like a hyperchondriac.. At that point my primary dx me with MCTD because he said something was happening he just didn't know what. He has been running blood work yearly and this last march decided to do the lupus panel then sent me to another Rhumy. I do have to say, this dr was really nice. She didn't make me feel like I was crying wolf like the others did. She actually did a full exam, which the others didn't and asked lots of questions. She also feels my fingers and toes are osteo because they involve only the top joints. But took x-rays. As to photosensitivity, I work third shift and seldom see the sun. So I don't know. She says if I get a rash, swollen joints other than the top ones, pain in my chest or sores in my mouth to contact her immediately and she also said if the CBC comes back low something about a compliment???? Then she will start treatment. I think she really took me seriously and wants me to call in two weeks for the lab results so will go from there. She said it usually takes 10 years from the first high ANA until lupus is actually dx'ed I think half the problem is that I don't know what symptoms are caused from lupus and what could be related to my diabetes, high blood pressure or GERD. But I think I am on the right track now with this dr. Sorry for the long post, I will try to make it shorter in the future lol... Thanks again.
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Seems like this doctor is watching you closely

Hello again! Seems like this doctor is watching you pretty closely and looking out for you especially to be with you a whole year and doing labs like this. That is good when a doctor a taking control this way. But I too think that doctor wants the one more criteria so he/she has enough proof and evidence for proper diagnoses. But hate to hear we have another Lupus patient lurking in our world. There are way to many of us and I wished they could figure out what causes it and have a cure for this nasty stuff. Hope you get treated soon and get that diagnoses without having to wait forever. :wink2:
Actually the dr who has been with me so long is my GP. And he is awesome. This was my first visit to this Rhumy but she seems pretty awesome as well. First Rhumy to take me seriously and not just brush me off. I feel pretty torn here, as I want to have a dx because I want to be treated, but I don't want to have a dx because I don't want lupus, does that make any sense? I was actually relieved with the blood work showing something going on because I feel like a hypochondriac with all my complaints. Just to get validated that I am not just imagining things ya know? Anyway, thanks so much for your response. It's nice to not feel alone in this.
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