Yes, it has been a little while since my last post. A month. I am sorry. Dealing with medical issues is overwhelming at times, I hope my fellow autoimmune warriors out there are having some peace.
My last post discussed the BARD Power Port. I am still terrified of it. I did find new information firsthand. This story is almost comical.
At the time I made my follow-up appointment with my surgeon, I was told that my port needed to be flushed. I arrived at the surgeon’s office and the nurse says, "okay dear where is your port?"
I show her. In shock she says "honey, we don’t flush those here, you will need to talk to the doctor."
The surgeon comes in and apologizes again for puncturing my lung (which still infuriates me because I have about $500 in copays because of it). He proceeds to tell me that the doctor that ordered the port should have already flushed it and it was extremely important that it be flushed right away.
I asked if I could go to LabCorp? He stated that I could not because most of their techs were not familiar with the BARD Power Port and the Huber needle and after a flush, I must have heparin injected. He tells me to contact my rheumatologist to make an appointment right away, end of the visit.
I leave the office, immediately contact my rheumatologist’s office and the receptionist was less than pleasant and transferred me to the nurse’s voicemail. I just broke down in tears. This was the very first time that Ed has seen me like this. Just done, fed up, helpless
Upon the nurse calling me back, she then stated that I can go up to 8 weeks without a flush and since we are waiting on my infusion medication approval, she did not want to set an appointment until we had the approval, therefore we could do everything at once.
After almost a week I hear absolutely nothing back. I recontact the nurse. She tells me they had to resubmit paperwork to the insurance company. Several more days go by, I call back and find out that the medication we were hoping to have approved was rejected. We then must try for another.
This now means that the same medication I was approved for in July with a co-pay of $389 per infusion is no longer approved! WOW! Just WOW! The next medication in line that is approved is $900 out of pocket monthly. The insurance company does recommend two other infusions. One is Inflectra, it is very similar to Remicade. Remicade worked before.
My rheumatologist placed me back on methotrexate weeks ago and now I have an infusion appointment scheduled for Monday, August 30th for the first Inflectra infusion, it cost $200 or a little more for each infusion. I go for another in 2 weeks, then 4 weeks. If I am responding well, my infusions will then be every 8 weeks.
This is semi-good news. I am trying to be hopeful, however, I am on a limited income and ZERO programs assist with my portion of the copays. I am grateful that I can budget well.
In addition to all of this, my port area near my vein is hurting, and my breathing hurts. My shoulder hurts also. The pain is a dull stabbing, and it begins with the vein in the area near my collar bone. I am praying that the port has not dislodged. I am keeping an eye on it.
So that is where we stand as of now.
What I know, it is a TNF inhibitor, much like Remicade. It was developed as a chemotherapy drug. It is used to also treat Crohn’s disease, IBD, Psoriatic Arthritis, Rheumatoid Arthritis, Ulcerative Colitis, Ankylosing Spondylitis, and, Plaque Psoriasis,
Yes, it is another immunosuppressant. It is a biosimilar versus a biologic or a DMARD.
I will keep everyone updated throughout this journey. Please say prayers for my anxiety.
If you know of any co-pay assistance programs, please let me know (I am on Medicare, and that generally knocks me out immediately, if you have any experience with Inflectra, please comment and let me know. There are many, many, many side effects. I try to overlook them because either way, it is quality of life over a crippling and debilitating disease.
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