I think I can almost say my doctors and I have got everything figured out and plans in place for all my treatments. I only have a gynecologist to see for a possible fibroid coming back , my primary care doctor today for a follow-up and his opinions, and the pain management clinic to get a pain plan in place.
My posts will still include any medical issues I am going through, but be more about every day life, medication success (or failure), and my weight loss journey.
Here’s a rundown of my medical wrap up:
Dermatology: I have Hidradenitis and Folliculitis After antibiotics and surgery has failed, I am now on Humira shots once a week for HS and Clindamycin cream twice a day for both conditions. I see the Dr again in 3 months for check how well Humira is working and change plan if needed.
A note on dermatology clinic. I had to make a formal complaint against the Medication liaison today. Here’s a copy (names have been removed):
I love my dermatology doctor, but have had the worst time getting help from my designated Specialty Pharmacy Patient Medication Liaison. It states that this person:
- works directly with the doctors, nurses, and healthcare teem to: expedite prescription prior authorizations, expedite prescription refill requests, troubleshoot rejections from insurance, and provide pharmacist counseling when necessary.
- Helps save money: Qualifying patients may be eligible to receive: copay cards, discount cards, patient assistant referrals, and free trials or samples.
- Helps you save time: Easy and quick refills, can pick up refills at local pharmacy or delivery, or have medications shipped at no cost.
- It states she offers personalized patient care.
Aside from her faxing my patient assistance applications to Abbvie for my Humira and Lilly for Cymbalta and making ONE phone call to each company on my behalf, I have had to advocate for myself and also get Humira samples from my primary care medication liaison (different clinics).
A few weeks ago, I was told by Lilly that I was denied medication assistance (free medication) because I have medicaid. When I explained that I have a spend down of $983 a month that I can’t meet to be covered for medication, they told me that my liaison failed to state that on the application and it was her fault. I was in tears because I also thought I would be denied Humira too (my most expensive drug). Humira is on the list of the last few treatment’s I can try for my 13 years of suffering from hidradenitis suppurativa. I Called the liaison crying bad (I should have calmed down first) and told her that they said she had filled it out wrong. She accused me of yelling at her and calling her incompetent. I wasn’t yelling, I was crying while trying to talk and explaining what was told to me. I never used the word incompetent. She called Lilly and they told her (while I was on the other line) that it didn’t matter if I had a spend down, if I had medicaid, I am not eligible for help. They didn’t tell me that! I must have gotten an uniformed person. I am no longer on Cymbalta so I am OK with this outcome. Humira was better to work with. They said they would take into account my high spend down and any other issues before denying me my medication. I felt better and ended the call with the liaison. I will have to say, she seemed more concerned with her performance and covering her own butt than me. That’s just my opinion. It seemed to be all about her and she was very defensive.
About a week later, I called Abbvie to check on things and they said they got my proof of income the liaison faxed over, but couldn’t read it. I faxed them the information again with proof of my high spend down from my medicaid disability spend down award letter. I have made all the follow up calls to check on things myself.
Almost another week goes by and I find out I can get my Humira this one time with Medicaid because I had met my spend down before the end of the month with hospital bills (which is rare and won’t happen again most likely). I asked the doctor if I should go ahead and start before waiting for approval and she said yes and that not to worry, the liaison will work with Abbvie to get my medication so I do not miss a dose later. I called the liaison to ask if she could speak to Abbvie about my situation and try to get this expedited so I do not miss a dose of Humira. She stated, “I have nothing to do with that part of things. I just fill out paperwork. The rest is out of my hands.” The definition of liaison is: 1. A link of communication between two entities usually in a corporate setting. 2. Individual responsible for relaying all communications between groups. “Charlie is the liaison for the accounts payable and sales departments.” Apparently, she missed that memo. I didn’t argue or cry or anything, I just sucked it up and called Abbvie myself and they put a note in my account to try to get the situation expedited to a Humira patient assistance counselor faster. Not too hard to do at all.
Moving on to the last two days: The recommended and proven treatment doses for Humira for Hidradenitis in clinical trials is weekly dosing with 4 loading shots the first day, 2 more in 15 days, 1 shot in 2 more weeks, and one weekly after that. My dermatologist wanted to try me on every other week doses and, if that did not work in 3 months, we would try weekly. After talking with my friends and praying about things, I felt that, since my hidradenitis is so aggressive, I want to be just as aggressive. I called my dermatologist office and spoke with her nurse about the request for weekly shots. The nurse emailed the doctor and, after getting no response, ended up speaking to her (either in person or on the phone). I had to know that day if I could change because I was on the deadline to take the last 2 of the 4 loading doses that day. You can break the 4 doses into two days, but no more, and I was on day 2. The nurse called me back at the end of the day to let me know that the Dr said I could change the dose to weekly and she would let my liaison know the next morning (yesterday) to call Abbie and Medicaid to report the prescription change. This is so Abbvie sends out the right amount of medication for my treatment each month. It is literally the liaison’s job to do this. However, no email or call was made to the liaison.
Yesterday, I had to have blood work done in the building my dermatologist and liaison is in. I went up to the second floor where the clinic is after getting blood drawn to find out if the change was made and if I could get help with more Humira so I do not miss a dose while waiting on Abbvie patient assistant to be approved. The liaison all but called me a liar stating she never got a call and that the Dr never approved my change. She didn’t even bother to listen to me when I told her that the nurse talked to the Dr NOT via email and that she gave the verbal approval for the medication to be changed to weekly shots. I tried to explain to her that the nurse stated she would contact the her for the change request that next day. She even accused me of trying to get her HER to write a prescription for me! I did no such thing! I told her the Dr changed the prescription and the nurse was supposed to call her and give her the new prescription info to send to Abbvie and apparently they forgot to do that. At that point I told her that, since this is not the first time I have had such major issues with her, I wanted to make a formal complaint. That’s when she tried to be nice in front of everyone. She stated, “Christina, I am trying to help you let me advocate for you and help you.” Yeah right, you say that only AFTER I stated I was making a formal complaint! I ignored that and got on the elevator to head to my primary care doctor appointment I had in an hour.
All she would have had to do, since she was RIGHT THERE IN THE CLINIC, was walk to find the nurse I spoke to and clear the miscommunication up. She didn’t do that. Instead, she wrote my doctor a CYA note to state I was basically refusing to work with her. How can I work with someone who won’t work with me? I have more important things to deal with and enough stress from 9 different medical issues than to deal with this nightmare. I will advocate for myself as I have been doing anyway from here on out and let Dr Martin’s office deal with changing things with the liaison and/or Abbvie.
My Primary Care Doctor was understanding of my situation and his clinic liaison (who wasn’t happy with how I was being treated) got me 4 sample pens to help me while I wait for Abbvie to approve me and send my medications. I have called Abbvie today and was just told they are verifying my insurance spend down being high and I should have a decision soon. Apparently, the Medicaid Spend Down Proof letter I had faxed with my husband’s proof of Veteran Disability pension award letter got lost and I have to resend the medicaid letter today. That’s going to hold it up 5-7 more business days. Thanks to my regular doctor, I should have enough medication to last me until I can get approved. I also called Dr Martin’s office to get this cleared up and they are more than happy to help me. Honestly, I deal with 6 doctors for my medical issues and my husband, with a brain injury, dementia, and epilepsy has many VA doctors as well. I am his caregiver and deal with all his appointments too. He can’t even drive, I drive him. I have never had anyone be this hard to work with until now out of all the people I deal with for both our disabilities.
The Dermatology clinic called me this morning to let me know a new dose was sent over to Walmart pharmacy and that they requested the liaison to work with Medicaid to get this new dosing covered for this month. She was also instructed to change this with Abbvie as well. Let’s see if this happens. Just to make sure I can get the medication, the pharmacy is also calling Medicaid for me to advocate as well.
At this point, I am going to relax and let God take the wheel. I am going to focus on my treatment’s and finishing up the Abbvie approval and RELAX! This is just all too much to deal with!
Digestive Clinic: I have Diverticulosis, Hiatal Hernia, GERD, Irritable Bowel Syndrome, and Peptic Ulcer Disease that is cleared as long as I don’t take any more NDAIDS like Advil for long periods like I was. I take a proton pump inhibitor for GERD and preventing ulcers, a daily stool softener to keep from getting constipated and worsening the diverticulosis. I also eat more fiber and no to little dairy. I do fine with small amounts of dairy, but not anything like a full glass of milk or anything. Pizza and coffee creamer doesn’t bother me, but regular milk or ice cream made with dairy does. I see the clinic every 3 months now unless my symptoms ever come back again.
Rheumatology Specialty Clinic: I have been tested for all forms arthritis or autoimmune that can be though of based on symptoms. My ANA Test showed a positive FANA result, but nothing to worry about now since the rest of the test was negative. I just have to be retested every so often to make sure nothing pops up later. I am seeing my primary care doctor today for a second opinion. My diagnosis is Fibromyalgia, Osteoarthritis, Trochanteric Bursitis (inflammation in the hips), and Scoliosis of the lower back with Degenerative disk disease with sciatica pain. The Dr is testing my Compliment C4 and C5, But I have Hidradenitis so, the C5 would probably be abnormal and may just mean I have HS if I understand this correctly. You can read more about C5 and Hidradenitis here: C5 and HS. As for treatment’s, I can get Cortisone shots like I had July 24th for my hip inflammation and am on Gabapentin for nerve pain and fybromyalgia. I see this doctor every 2-3 months now or as needed for cortisone shots.
Primary Care Doctor (PCP): I saw my doctor yesterday and he’s treatment my depression and anxiety with Prozac 20MG a day and wants me to take Amitriptylin 10mg for sleep and pain. I am not ready to try the Amitriptylin yet until I see how the Gabapentin is working for me. Gabapentin has a sleepy side effect and it might work enough for both the pain and insomnia. I see home once a year for regular check ups and every 6-8 weeks for the depression and anxiety. He’s upset that the surgeon didn’t do the wide area excision like he noted in my chat that he did. My Dr agreed that he just unroofed everything and it’s all coming right back. We are in agreeance not to have any more surgery on the HS unless it’s our last option.
The last medical issue I have to take care of is to see the OB/GYN for my irregular, painful, clotty, and heavy periods. I am on day 8 of my period now and having bright red to purple spotting. They are 18 days apart now. I am hoping there is a solution to this issue when I go on July 31st.
I will update on the Gynecology appointment, Humira patient assistance, and my C3 and C4 blood test results as I know something.