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Treatment for persons in DENIAL of taking medication.

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I recently met a 45 year old lady; she lives downstairs from me in the same apartment building. She states that she has been suffering from lupus, rheumatoid arthritis, and chronic pancreatitis for around 15 years. I am a nurse so I figured I could help her out here and there, take her to dr's appointments, and, help her with shopping and house cleaning, etc. She is extremely edematous, mostly hands, legs and feet. She told me she was taking Plaquil, lasix, and pain medication for her pretty much all over the body pain.
I worried a lot about how the narcotic pain medication affected her, often she will be sitting up, but leaning forward almost to the point of falling. She states it is because of her "cataplexia" that she appears so "out of it" at times.
Her diet is terrible, she hardly drinks any fluids at all, her urine is dark amber, and she urinates very little, about once a day.
A couple of weeks ago she ended up in ED with kidneystones. She was instructed to strain her urine, and follow up with a nephrologist and a rheumatologist, the ED doc. even made appointments for her.
She was also told to pick up her prescription for Plaquil and Lasix.
Long story short; I found out that she had not been taking her Plaquil, her Lasix, her Prednisone, and NSAIDS for almost a year, according to her, I assume it's been much longer after finding out how non-compliant she was. Her creatinine level was 4.
She had however, been taking, and still is taking; massive amounts of pain and anxiety medications prescribed by her "Pain Management Doctor" the only dr's appt. that she keeps!

Her daily medication regime is as follows:

Oxycodone IR, 30 mg PO q4hours Around The Clock
Methadone 10 mg PO q$hours Around The Clock
Valium 10 mg PO q8hours Around The Clock
Zanaflex 4 mg PO q8hours Around The Clock
Phenergan 25 mg PO q12hours Around The Clock

She is 5'4, and about 165#.

I don't know what to do.I have NEVER met a person in that much denial. I am pretty sure she knows that what she is doing is going to kill her, but she has no idea how soon. I guess the family has given up on her too,because she is doing 'SOOOO much better". I found out that the pain medication abuse was present before the lupus and rheumatoid arthritis diagnoses. Is it possible that all those medications caused the lupus?
She was a "shut-in" for many years, but has 3 supportive children, who I just don't think gets the whole picture.
In your opinion, Dr, if she keeps masking her pain with all these narcotics; and meanwhile not taking the medications she is prescribed for her lupus; how much time would you estimate she has left before she needs regular dialyses. And, who should I talk to in order to stop this madness???

Sincerely; Ulrika, RN

Category: Nephrologist

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Category: Pediatric Nephrologist
Dr. Sree Bhushan Raju is online now

Expert:  Dr. Sree Bhushan Raju replied 4 Days.

Hello Ms. Ulrika.
Thank you for your query at DoctorSpring.com
Honestly I am amazed at your concern for your neighbor and truly admire it!
Your consult has been assigned to the Nephrologist as your query can be best answered by a Nephrologist.
Unfortunately he is busy at the moment and his response may take some more time. You will be intimated as soon as he replies.
Meanwhile if you can add in some history about her having any concurrent Diabetes or Hypertension, it would be very helpful.
Also, please mention her recent serum electrolyte values, if available.
I am really sorry for the delay and inconvenience.
Again, I really appreciate your efforts for your neighbbor.
In-house physician, The DoctorSpring Team.

Hello. The nephrologist just answered. This is his reply. Kindly go through it :
Rheumatoid arthritis and SLE can cause joint pains and the former disease can cause debilitating / destructive deformities of the joints. Mostly the pain is tolerable and self limiting and a more advanced disease in RA indeed has no painful joints.Still the number of pain killers which she has been taking is high though none of them can affect the kidneys. She appears to be having kidney disease related to either of the diseases. SLE can cause lupus nephritis and which responds to a good amount of immunosuppressive therapy. RA also can cause several types of renal diseases which includes a. Induction called amyloidosis. Some of her features or suggestive of such a condition. She also requires renal biopsy to know which variety of disease exists in her kidneys do that ns appropriate therapy can be planned. Initially you need to take her to a psychitrist and give her counselling. I really appreciate your concern for her and its good that she would listen you for your good advices
Feel free to discuss further.

Patient replied :

Dr Raju; Thank you for your insightful consultation, much appreciated.
I am relieved to find out that the pain medications will not damage her kidneys any further.
She does not have any joint deformity from her RA. She does have generalized edema wich appears to be non pitting. It is severe in hands and feet. (As mentioned before, she is selectively non compliant; does not take her Lasix and Paquil (or other medications ordered, except for pain management). Of course this aggravates her condition further. Her SLE has never been in remission. In addition; she states that she has suffered from chronic Pancreatitis for the last 20 years. About 10 years ago she had endoscopic surgery with stent placement. She is not on any drug therapy to alleviate her symptoms; she has frequent nausea with bile colored emesis. Her appetite is very poor. She does not drink alcohol. She does not have hypertension, nor diabetes.
Dr Raja; I understand that much more information is needed for you to address and give advice in this case. I agree with you that Counseling is absolutely one of the priorities.
I have been unsuccesful in my efforts to educate her and family members. In your opinion; if she continues to ignore her health issues and not take any of the medications ordered; is it feasable to predict that she will need dialyses in the near future? Her last creatinine was 4. She is pretty much housebound, she tolerates walking to the mail box only. On top of all this she does not sleep, only a couple of hours here and there.
This woman is 46 years old, and her quality of life could be so much better. I am trying to help her, but I am unsuccesful. I am hoping that by educating her family members, and make them understand the importance of managing her health conditions, and, slow the progress of organ damage and ultimately, an untimely death. Wish me luck, and Thank You very much for your input!

Ulrika, RN

Expert:  Dr. Sree Bhushan Raju replied 3 Days.

Hello. Thank you for writing to us again.
I truly, sincerely from the bottom of my heart applaud your efforts to help a life.
You're an inspiration.
She does have a lot of problems. Chronic pancreatitis is another condition which can lead to severe pain. Infact all the three conditions- RA, SLE nd Pancreatitis , are troublesome and require a methodical therapeutic care. It involves immunosuppression, which can be dangerous if its un-monitored. Family members' support is an essential component in the management of these patients.
She can continue with the pain killers but she needs immunosuppression as you stated that she was never in remission as far as SLE is concerned. Engage her with some physical activity as well as physio therapy. Give her good and nutritious diet and encourage her to be good in her activity of interest.
One good thing is that she does not have either diabetes or hypertension which could worsen her kidney function. If she starts taking Lasix, then her generalized edema will definitely come down.
She needs a counselling session, a good counselor who can motivate her to start taking her medications. As I mentioned before she can possibly have amyloidosis. However, with immunosuppressants available, we can continue fighting for her. The very fact, that you being her neighbor, you're trying to do so much for her should give her the motivation to try getting better. It is difficult with the kind of problems she's facing. However I strongly feel counselling is definitely going to help her.
She might need dialysis in the future, if her kidney keeps worsening(increasing Creatinine) as you know her creatinine is already high and it is around 4. Renal biopsy will be able to guide us further about her amyloidosis status.
I appreciate everything you're doing for her once again,

Dr. Sree Bhushan Raju
Category: Pediatric Nephrologist
FISN : Fellowship of Indian Society of Nephrology(ISN), 2012
FIACM : Fellowship of Indian Association of Clinical Medicin(IACM), 2012
FICP: Indian College of Physicians Association of Physicians of India, 2012
Fellowship: DM, DNB, All India Institute of Medical Sciences, New Delhi, 2002
Residency: MD, General Medicine, Nizam's Institute of Medical Sciences, 1998
Medical School: MBBS, Gandhi Medical College, 1994
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