Wes1212

Hi, I am thinking about giving this to the doctor in charge of a clinic i have been going to. My question is, do you see any reason here a doctor might use to reduce or discontinue treatment? It would only be an inconvenience to drive farther for a friend to finish treat me, but i would like to avoid that.


The Clinic accepted me as their patient to oversee my prescribed PegIntron and Rebetol therapy. I am now five months into the treatment.

PegIntron (Peginterferon alfa – 2b (powder for injection)) and Rebetol (Ribavirin UBS) is a very serious treatment for a very serious illness (hepatitis C), which has the potential for very serious life threatening/altering side effects. Patients receiving this therapy should be monitored closely and receive treatment for side effects and secondary conditions resulting from its use.

There has not been any regularly scheduled appointment for monitoring my progress in therapy at the Clinic. The two appointments I have had at the Clinic since beginning therapy were made by me and received with reluctance.

Doctor P* is the name used by the Clinic as treating physician. I attempted to call Dr. P* to discuss the lack of attention and care dispensed to me by the Clinic. I was told that I would receive a call back about my concerns. Sue from the Clinic left a voicemail message saying that Dr. P* had called her and instructed to call me about my concerns. I have already discussed my concerns with Sue several times via telephone and the entire two office visits I have had since beginning therapy.

When I contact the Clinic with my complaints, the response is always, “You will have to live with it”, or, “We will have to ask Doctor W* (my gastroenterologist) what to do.” Then the issues appear to be dismissed because I never hear any more about it.

After over two years of complaining, and recently stating that I wanted to see the physician in charge, x-rays of my spine were ordered. (Along with the complaints listed in the attachment, I also asked for a bone density scan and was refused).

I have made my concerns known to my gastroenterologist and neurologist and was informed by them that they are not my primary care physicians and that is whom I should be addressing. When I forwarded their responses to the Clinic, I was told, “You will have to live with it”, or, “We will have to ask Dr. W* what to do.” (Dr. W* told me that he has written a letter to the clinic in my behalf concerning this. Sue at the clinic has told me that no such letter exists. Other notes made by doctors seen by me at the Clinic prior to the PegIntron and Rebetol therapy no longer exist in my file.)

Sue at the Clinic and I have developed a relationship that I feel is irresolvable and not beneficial to my health care. She also has warned me that if I seek help from anyone else, I will be dismissed as a patient from the Clinic.

I have seen doctors at Bromenn, and Prompt Care, Hematology and Oncology Associates seeking relief from symptoms and secondary illnesses of the therapy. All the doctors tell me that instead of relying on emergency rooms and prompt care facilities and specialists, I need a primary care physician to monitor and treat me during this therapy.

Doctor P*’s name is the one the clinic uses as physician, so I decided to call and discuss my concerns with him. The result of my call was a returned call from Sue at the clinic.

I have made an appointment at Dr. P*’s office to present this letter in hopes that it will be presented to him, and that I may begin to receive appropriate monitoring and treatment for side effects and secondary illnesses of the PegIntron therapy and anything else that normally applies to a patient from their primary care physician.


Sincerely,

Wes*


ATTACHMENTS:

1. PRE-EXISTING CONDITIONS; SYMPTOMS DURING THERAPY; DOCUMENTED ILLNESSES DURING THERAPY

PRE-EXISTING CONDITIONS; SYMPTOMS DURING THERAPY; DOCUMENTED ILLNESSES DURING THERAPY

Pre-existing conditions to the therapy (that I presently remember) include: Fatigue, arthritis, myalgia, peripheral neuropathy, seizure disorder, attention deficit hyperactivity disorder, nearsightedness, astigmatism, depression.

Examples of side effects I have experienced from therapy (that I am aware of) are: Fatigue, severe acute headaches, chronic headache, severe acute muscle pain, chronic muscle pain, sever acute joint pain, chronic joint pain, severe acute back pain, chronic back pain, severe acute nerve pain, chronic nerve pain, severe acute abdominal pain, chronic abdominal pain, bone marrow suppression (low absolute neutrophil counts (ANC = 1000), ANC shift >75% of baseline, low white blood counts (WBC = 2.7), white blood count shift of >75% of baseline), fevers, low blood electrolyte levels, change in eyesight, severe acute chest congestion, chronic chest congestion, severe acute nasal congestion, chronic nasal congestion, severe acute sore throat, chronic sore throat, water retention, chronic dry skin and itching, and depression, all of which I have notified to the Clinic.

The documented illnesses I have experienced are: bronchitis, hyponatremia, hypokalemia, pharyngitis (strep), all of which are incidents for which I attempted to be seen at the Clinic and was refused or scheduled an appointment for more than two weeks later.

These symptoms and illnesses have been discussed during the visits I have been able to schedule and keep at the Clinic. One appointment had to be cancelled because I had already been seen by the hospital emergency room and was too ill to be able to drive.

[This message has been edited by Wes1212 (edited 01-08-2003).]