[mini]

finally got in to see a new rheumie. and this one is far better then the other one I had. but now a new problem has come about. the new rheumie says I do not have lupus but fibro instead, and my doc says I have lupus, no doubt about it.

as a result I am not sure which I have now, and until I do I guess I will put both diagnosis on any paperwork that asks about it.

 

[Katharine]

Hi Mini,

That must be very confusing indeed Did the rheumy give you a reason why it is "not lupus"? Or does your doc (GP?) give you a reason why it is?

I wouldn't be too worried about exactly what he's calling it but I would want him to be treating you adequately for the symptoms that you have.

Has the rheumy done/said anything about treatment? Were you already on treatment before? What has he suggested in terms of follow up?

Katharine

 

[stewartc7]

dont panic been there mine said it was fibro then a few months later i was told i had lupus sle but in actual fact i hav both they can be linked just like iv got reynauds aswell things dnt just come by themselves they need company look at all the information how do u feel i also got asked who knows u better ur doctor or a rhumie dnt really have much faith in rheumies some r gr8 and some just get a big pay packet a the end of the month hope u get it sorted dont ever doubt urself x

 

[Maia]

This is a big deal - potentially. The treatment for these two conditions are VERY different. I would try to find out why the new rheumy does not believe you have lupus, and why your GP says you do (as well as the old rheumy?). You may need to become well versed in blood tests to help understand and learn why these doctors are disagreeing on the issue.

Before going off any SLE meds you may be on, I would discuss the matter with your doctors and possibly even get a third opinion! It is fairly common to actually have both conditions as already mentioned - but you would really want to be certain that it is *only* fibro before quitting treatment for SLE.

 

[Katharine]

Yep I'd agree with Maia on that. When I said I wouldn't be too worried what it's called I so long as correctly treated I did mean correctly treated for whatever it is and as Maia said the treatment is very different for Lupus and Fibro.

sorry if I was unclear - It was clear in my head :hehe: which probably explains why it was unclear!

 

[halfpintfl]

Hi there, yes, even if you have to go to a third Rheumy,
so it, as your body is worth it, isn't it? I had,and still do, fibro. The treatment they gave me then were mainly
muscle relaxants, and they didn't do much good. Then when I finally got to a different Rheumy, and after several yrs,of watching, he dx me with Lupus. I also have a lot of the other things that go with Lupus, I just call them add-on's. But the point I am trying to make is that until I was put on the right meds, that I had relief. So, yes, the right
dx counts, and the right meds count. Go for another Rheumy's opinion, or get these two dr.'s to explain their dx.:wink2: ​

 

[mini]

the only thing the new rheumie added to the medicine list was for chronic pain. she has left the other meds as they are.

the new rheumie says the symptoms while similar in both conditions seem to fit fibro more so since it mainly hits my legs first. my pcp says it is lupus due to the ana and has been watching the bloodwork.

right now I am in constant pain especially the legs which feels like they need to be chopped off or something. will need to see if we can find something else to take care of the pain. neither doctor wants me on narcotics if they can help it. such fun. NOT

 

[helloos]

I would come right out and say to the rhemo, my doc thinks I have Lupus and my ANA is positive. (assuming that is what you meant positive) If this is Lupus and I am not treating for it, aren't I going to continue to get worse? If it is Fibro, then pain meds are needed. May be needed either way. How did you come about seeing this new rhemo?

I know that sometimes you can fall between the diagnosis and they aren't sure which one you fit under, but if there are enough symptoms - they should be at least treating those symptoms and trying to get them under control.

What is your current treatment going to be by this new rhemo?

I would also get a copy of all bloodwork done. This way you can see what is what for yourself.

 

[mini]

now my ana is negative and it had been positive for at least 2 yrs. anyways, they now say I have a vitamin D defincy that they believe is causing some of my problems, so now I have to take 50,000 units a week. every appointment seem to add more meds to what I take and none is taken off. I would like to see a reduction if it is possible.

 

[Lily]

Hi mini,

If you are still on the Plaquenil then that can revert your ANA to negative, so I wouldnt be too concerned with that and the doc shouldnt take too much notice of it either.

You might feel a little better once your vitamin D levels are brought back to normal, or not. I had a deficiency prior to my diagnosis and they thought that a lot of my problems might have been caused by that (or hoping perhaps) , they were still very mindful of the blatant Lupus symptoms I was having . I took the Vitamin D for some months and don't have to take it now - my levels came back up and remain normal. It seemed to have little effect on how I was feeling anyway but it was important to get it back to normal level. Deficiencies can cause all sorts of problems, some major, some minor. If you do a bit of research both here and on google it will give you an idea of what symptoms it can present with.

Hang in there,

love
Lily