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Hey everybody! Boy do I need some advice on this one.I went to my rhuemie referal and after my second visit he told me I had "mild lupus". this was in this past december.On January 15 I had a whole new slew of bloodwork done by my gp and the office called today to say that he does not think I have lupus but a ctd and to make an appt. to come in so he can go over the results with me.What the heck is going on! Once again it seems that I am back to square one.The nurse said that my test did not come back bad at all.Now what should I do? I am glad that it came back ok but it feels as if I have lost my "culprit".Is the rhuemie not the specialist?He put me on plaquinel in dec. for lupus.Can anyone give me some advice on this? Thanks,Patti
 

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Hello Patti

It isn't at all clear what your GP has in mind. A lupus diagnosis is rarely given lightly especially by a rheumatologist. Lupus is a connective tissue disease of course but there are many that are not autoimmune. Maybe he's thinking for some reason that you have another very similar autoimmune connective tissue disease. It could be just a difference of what exactly to call it. Different doctors have different ideas and it may not make any difference in practice.

I suggest you get copies of all your test results and learn to understand them so you get a better idea of what the doctors are thinking. We can help you with that..

Let us know how you get on please and good luck

:)

Clare
 

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I would be more inclinced to believe a rheumy's diagnosis over a GP when it comes to an autoimmune disease. You will have to learn as much as you can about the blood tests the rheumy used to diagnose, versus the ones your GP just ran. Just because some of the very lupus specific tests (like ds-DNA or anti-Smity) come back negative, it does not rule out lupus. It sounds like this might be what the GP has done and is referring to at this time...

There are definitely differences among different doctors in terms of the terms they use to diagnose, and whether you are given a label of UCTD (undifferntiated connective tissue disease) or SLE (lupus) the treatment is often about the same. I would discuss any concerns you have with your rheumy regarding what your GP is saying, or what they GP recommends you do in terms of any medication changes.
 

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Dear Patti

I really identified with you when I read your email. I can just imagine your confusion and frustration.

I too had a Rheumy treating me for Lupus, but had been without a GP for a long while, finding one fast and in desperation when I started to flare and couldn’t get my next Rheumy app’t moved sooner. Pretty much his first words were to blame my symptoms on the Plaquenil and say he would take me off of that and didn’t think I had Lupus at all. But the Rheumy is the specialist and I think would likely not be treating you with Plaquenil unless there is good reason. A Rheumy can look at labs and symptoms in a way that a GP cannot. I would follow your Rheumy’s advice, and maybe ask him/her some of your questions about the labs. Just because some labs are normal now, doesn’t mean you don’t have Lupus and so the Rheumy would be the best advisor.

What tests did your GP do? I would also get a printed copy of all your lab results from now on…….I have had GPs tell me things were normal for years, and when I finally requested copies, I see things that were not, and now I find out they were significant. You think you can trust the GP when he says everything is fine, but I’d get the printouts anyway, then you are more able to ask questions. Sometimes you may have tests that are slightly out of the normal range, so a GP doesn’t think it is significant, but if this same thing is abnormal time and time again, that should alert them to question further. I have found that you can’t rely on a doctor to look back and make those comparisons, I learned the hard way about this.

If there is possibility that you might have a something other than Lupus, you could ask your GP what he suggests as far as differential diagnosis, but I sure wouldn’t make treatment changes without your Rheumy’s approval. Also, it’s important to remember that having normal labs doesn’t mean you don’t have Lupus.

I guess my big advice is to get clarification from your GP whether there were abnormalities, and if so, ask what follow-up is he doing on that. Also make sure the results are communicated to your Rheumy. Get copies of all results and keep them in a file at home. If you GP thinks it is not Lupus, ask what he thinks is the problem and what he is doing about that (more tests?). Talk to your Rheumy about what your GP is telling you.

I hope this helps.
 

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Since being diagnosed my rheumy has become my primary carer. I only go to my GP for anything unconnected to lupus.

Of course, he is aware of everything that it going on but he himself doesn't even attempt to treat me for lupus. When he has to do something, for example a more urgent situation, he actually phones my rheumy to know what she prefers he do.

I'm lucky in that Belgian docs are pretty accessible and I can also call my rheumy if needed. She knows I won't call every 5 minutes and that if I call I really need to talk to her.

I would certainly go with what the rheumy is saying, and, as someone else suggested, I would talk to the rheumy about this situation.

Katharine
 

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Hi

I would also go with what the rheumy says and advises. I don't see my GP for anything rheumatologically related and if I have any rheumatological problems I ring my rheumy rather than seeing the GP.
 

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:) Hi Patti, yep, confusion comes first I guess. Oh well. I would suggest that you get a copy of your blood tests from your GP, just tell him that you would like to study them or something. Then I would take those to the Rheumy and
give them to him to keep in your chart. Remember that there is no one blood test that can say that you do or that you don't have lupus. But, if the question of lupus is on the plate, the Your Rheumy is the last word and he is the
only one that can dx you, after all, it is his speciality, and
he is the expert. Let us know what happens.:wink2:
 

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Hi Pattie,

Oh the battle of the docs. Mine is between my rhummy and my neuro. I do think that the DX came very quickly.

MY GP would have nothing to do at all with my lupus. If I were you I would make the appt to see what GP has to say. I would get all tests results and contact your rhummy. You can always even get a second opinion from another rhummy.

I would not go off the plaq if I were you with out consulting a rhummy. Did rhummy but you on any other meds?

Elaine
 

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Discussion Starter #9
reply to gp vs. rhuemie

Hi Elaine, Yes my rhuemie put me on plaq. for my lupus but I also have fibromyalgia as well so he also put me on lyrica along with vitamin d for deficiency.I will not stop my meds until I see what my rhuemie has to say about it in march.Thanks to everyone for the advice!:bigsmile:
 

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i no how u feel

oh boy it seems doctors and rheumies dont seem to be listening to us iv actually got a great doctor now but iv been there when theyve said my results have said this when they have come back with somthing on them i would be straight with them ask to see your results and ask them to explain them to you if your still not happy ask for another oppinion x
 

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Thank god i'm not the only one having this problem...

My doc says i have Lupus and my Rheumie says maybe...he doesnt want to give me a proper diagnosis incase he is wrong obviously. Tho a friend's mother has the same Rheumie as me and she says that he dabbled for years saying yes and no but she is now in a wheelchair and definately has lupus. I dont have any severe symptoms but enough for my GP obviously to say i have lupus.

Mostly my symptoms include Fatigue, headaches and migrane...weight gain at the moment, a general and never ending feeling of malaise, anaemia, bouts of depression, dizziness lately and general weakness.

So confused...is the Rheumie just being cautious??
 
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