Just curious if anyone has any info on how Systemic Lupus is usually rated during the IPEB? How long does it take to hear back what you have been rated? Any help is greatly appreciated. Thanks! AJJ
LUPUS
- Thread starter AJJ1974
- Start date
Hello,
My husband, Rob, has been diagnosed with Systemic Lupus. He's also been diagnosed with Rheumatoid Arthritis and Reynaud's Phenonmen. But they didn't code him until they diagnosed the Lupus. (even then it took a few months)
He's been coded and his rheumatologist is going to start writing his package after his next appt. (in a week) We've been told that it depends on how badly/often the lupus affects you, and how the package that the doc writes.
Have you been coded yet? If so, have they already written and submitted your package? Just trying to see how far along you are in the process. We'll be sure to come back and share our process with you.
We've only met two other ppl that have been discharged due to SLE.
Good Luck,
Carol
My husband, Rob, has been diagnosed with Systemic Lupus. He's also been diagnosed with Rheumatoid Arthritis and Reynaud's Phenonmen. But they didn't code him until they diagnosed the Lupus. (even then it took a few months)
He's been coded and his rheumatologist is going to start writing his package after his next appt. (in a week) We've been told that it depends on how badly/often the lupus affects you, and how the package that the doc writes.
Have you been coded yet? If so, have they already written and submitted your package? Just trying to see how far along you are in the process. We'll be sure to come back and share our process with you.
We've only met two other ppl that have been discharged due to SLE.
Good Luck,
Carol
Hi Carol,
I was diagnosed with SLE in February and started treatment. My package was completed and sent to the MEB and they referred my package to the IPEB. It was sent to IPEB two weeks ago. They told me that it takes anywhere from 8-13 weeks because they are so backed up. I havent known anyone with SLE so was just curious if anyone else has and how their situation turned out. I have almost 18 years total service and the last 12 have been active duty. I have flares all of the time and sometimes cant even walk. I am extemely symptomatic with fluorescent lighting. I've been on several medications for 6 months now and still do not have my disease under control. Hopefully soon they will come up with new treatment since there hasnt been any new medicine for over 50 years!! Please keep in touch!
AJJ
I was diagnosed with SLE in February and started treatment. My package was completed and sent to the MEB and they referred my package to the IPEB. It was sent to IPEB two weeks ago. They told me that it takes anywhere from 8-13 weeks because they are so backed up. I havent known anyone with SLE so was just curious if anyone else has and how their situation turned out. I have almost 18 years total service and the last 12 have been active duty. I have flares all of the time and sometimes cant even walk. I am extemely symptomatic with fluorescent lighting. I've been on several medications for 6 months now and still do not have my disease under control. Hopefully soon they will come up with new treatment since there hasnt been any new medicine for over 50 years!! Please keep in touch!
AJJ
Dear Friends:
1. The real battle with SLE in the PEB setting is documenting the number of actual flares. Many times, the IPEB or FPEB may misconstrue the frequency or severity of flares.
2. It is vital to ensure that the narrative summary in your case does not simply call an occurrence a "flare", but actually describes the symptoms in detail to show the incapacitating nature of the event.
v/r
Jack Gately
1. The real battle with SLE in the PEB setting is documenting the number of actual flares. Many times, the IPEB or FPEB may misconstrue the frequency or severity of flares.
2. It is vital to ensure that the narrative summary in your case does not simply call an occurrence a "flare", but actually describes the symptoms in detail to show the incapacitating nature of the event.
v/r
Jack Gately
Thank you for your input. My military doc did a great job on my narrative summary detailing how the fluorescent lights, fevers and the arthalgia affect my ability to perform my duties. My medical records have everything about my heart involvement and lab work. I hope that it is enough.... Lupus is tough to understand because it affects so many different organs/systems. I have it and am still learning something new everyday! Take care and thanks again.
Jason Perry
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A comment:
I have more often seen issues when members are placed on TDRL for Lupus (a fairly likely outcome with a new diagnosis).
Remember, you can do all the right things and end up with a great (or acceptable) finding. Don't blow it if you are placed on the TDRL by not following up with your medical care after you are retired. It is often very difficult if you show up at your TDRL re-evaluation and have no treatment notes since you left service and are left to describe your flares and their frequency. Your (presumably) new TDRL examiner will then write what he or she thinks. It may or may not be accurate and you greatly increase the odds of having to fight out the issue at a Formal PEB.
TDRL does not have to be a bad outcome. But, if you are on TDRL, you are not done with the PEB. Do your best to ensure you get a fair shake.
I have more often seen issues when members are placed on TDRL for Lupus (a fairly likely outcome with a new diagnosis).
Remember, you can do all the right things and end up with a great (or acceptable) finding. Don't blow it if you are placed on the TDRL by not following up with your medical care after you are retired. It is often very difficult if you show up at your TDRL re-evaluation and have no treatment notes since you left service and are left to describe your flares and their frequency. Your (presumably) new TDRL examiner will then write what he or she thinks. It may or may not be accurate and you greatly increase the odds of having to fight out the issue at a Formal PEB.
TDRL does not have to be a bad outcome. But, if you are on TDRL, you are not done with the PEB. Do your best to ensure you get a fair shake.
Great advice, Jason.
TDRL members do need to keep up with their medical care; otherwise, they may well find themselves removed from the TDRL with severance pay vice a PDRL rating.
v/r
Jack Gately
TDRL members do need to keep up with their medical care; otherwise, they may well find themselves removed from the TDRL with severance pay vice a PDRL rating.
v/r
Jack Gately
Great info and advice! Thanks so much for your input. I see several different doctors on a regular basis and will continue to see them regularly no matter what the outcome of this PEB. Lupus can be very scary and fatal if left untreated and unmonitored. Thanks again!