HI. Thanks for reading this. I have been sick for 3 years with a diagnosis of UCTD, Peripheral neuropathy, IC, joint pain. I responded terrible to prednisone and plaquenil didn't do anything. My rheumetologist AND neurologist agree that the best treatment for me is IVIG (because I did so poorly on the prednisone). I have been batteling with the insurance to get approved. I am on my 3rd appeal. My rheumetologist told me that unless I have a Lupus diagnosis (which is highly suspected anyway) they won't approve it. BUT he doesn't ever mention giving me a Lupus diagnosis. He just ran my blood work again and they look worse each time...I feel worse over the years so I could imagine. My ANA is super high, my complement levels are low, I now have anemia low vit. D plus some other stuff, yet I can't get any help because I don't have a good diagnosis. I really need some advise. Thanks! Stacy
Advise....PLEASE!
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Hi Stacey,
I'm sorry I don't understand how the USA insurance system works, but it does seem rather unfair to deny you on the base of a technicality. UCTD and lupus are blood brothers, and one rheumatologist may call it UCTD and another SLE. Also if your rheumy is really behind getting you the IVIG, can't he just say it is lupus? Have you actually asked him to do this? Sometimes we need to be our own advocate and quite firmly and clearly state what we need and expect.
Maybe I'm being rediculously naive here:worried:.
Has your rheumy discussed other medications with you? Methotrexate, Azathioprine, Cellcept etc...? All these meds may help you and avoid the need for IVIG, plus they are cheaper and have a beter list of research backing their effectiveness up.
How long were you on plaquenil? Less than 6 months is too short a time to make a decision about whether it is having an efffect or not. Did you have severe adverse effects from it, or was it just that it didn't seem to be doing anything? If it was the latter, it is definately worth reconsidering it in combination with one of the other DMARDS (listed above). Of course if you are allergic to it, you cant have it
.
Are you being treated for the vitamin D deficiency. If not, then you need to be, as this will just compound your feeling of unwellness. Ditto for the anaemia.
I think you need to have a serious discussion with the rheumatologist, preferably taking someone with you to help you fight your corner and get some action happening.
All the best,
X C X
I'm sorry I don't understand how the USA insurance system works, but it does seem rather unfair to deny you on the base of a technicality. UCTD and lupus are blood brothers, and one rheumatologist may call it UCTD and another SLE. Also if your rheumy is really behind getting you the IVIG, can't he just say it is lupus? Have you actually asked him to do this? Sometimes we need to be our own advocate and quite firmly and clearly state what we need and expect.
Maybe I'm being rediculously naive here:worried:.
Has your rheumy discussed other medications with you? Methotrexate, Azathioprine, Cellcept etc...? All these meds may help you and avoid the need for IVIG, plus they are cheaper and have a beter list of research backing their effectiveness up.
How long were you on plaquenil? Less than 6 months is too short a time to make a decision about whether it is having an efffect or not. Did you have severe adverse effects from it, or was it just that it didn't seem to be doing anything? If it was the latter, it is definately worth reconsidering it in combination with one of the other DMARDS (listed above). Of course if you are allergic to it, you cant have it
.Are you being treated for the vitamin D deficiency. If not, then you need to be, as this will just compound your feeling of unwellness. Ditto for the anaemia.
I think you need to have a serious discussion with the rheumatologist, preferably taking someone with you to help you fight your corner and get some action happening.
All the best,
X C X
Re Think your doctors
I am sorry to hear that you are getting the run around with your doctors. (((hugs))) :grouphug2:to you. It seems to be a common thing between us loopies. Not that we don't have enough in common already
I would go back to both of your doctors and ask them why they haven't giving you a lupus diagnosis? Or another diagnosis for that matter. If your blood levels and other health history points in that direction, why not diagnosis it than. Plus I would ask what they plan on doing for you if your health insurance doesn't approve the treatment they want for you. If they won't answer these simple questions than I would think about going to a different set of doctors for a second or even third opinion. It could only help you in the long run, even though it is a pain to do.
Please remember your the only one that knows how your body feels and to keep fighting for your health. If you don't nobody else will.
I am sorry to hear that you are getting the run around with your doctors. (((hugs))) :grouphug2:to you. It seems to be a common thing between us loopies. Not that we don't have enough in common already
I would go back to both of your doctors and ask them why they haven't giving you a lupus diagnosis? Or another diagnosis for that matter. If your blood levels and other health history points in that direction, why not diagnosis it than. Plus I would ask what they plan on doing for you if your health insurance doesn't approve the treatment they want for you. If they won't answer these simple questions than I would think about going to a different set of doctors for a second or even third opinion. It could only help you in the long run, even though it is a pain to do.
Please remember your the only one that knows how your body feels and to keep fighting for your health.
If you don't nobody else will.
Joined
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4,583 Posts
Hi Stacey, Sorry that you are in the typical run-around-the-bend, but Lupus is so very hard to diagnose. It took nine months for the Plaquinel to begin to work on me, and then it really helped a lot. Lupus can not be diagnosed by blood tests alone, and that may be where your problem lies. It
also includes your history, your symptoms, and the things that the dr. is observing while you both are talking. So,
absoutly do not give up, and let us know how things go.
:wink2:
also includes your history, your symptoms, and the things that the dr. is observing while you both are talking. So,
absoutly do not give up, and let us know how things go.
:wink2:
I hear Cellcept works wonders for Lupus.
I am so sorry your having such a tough go of it.
UCTD and Lupus are so closely related I do not understand why the insurance company is giving you such a hard time. Then again, living in the US and knowing how our health care system works it does not surprise me.
Talk to you doctor about other drugs in the meantime that may help you and fight the fight with that insurance company............do not give up!:wink2:
I am so sorry your having such a tough go of it.
UCTD and Lupus are so closely related I do not understand why the insurance company is giving you such a hard time. Then again, living in the US and knowing how our health care system works it does not surprise me.
Talk to you doctor about other drugs in the meantime that may help you and fight the fight with that insurance company............do not give up!:wink2:
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