Lipedema and GLP-1 Month Three

What a difference a month makes... 

Long story short, there is no Month Three on the GLP-1 medication, Wegovy. And my experience has been INFLAMMATION OVERLOAD.

All those wonderful things I experienced with the medication in months one and two, have been reversed back to before taking the medication, and then some. You can read about those experiences here: Month One and Month Two.

So What Happened?

Why Did I Stop Taking Wegovy?

My insurance changed from Blue Cross Blue Shield (BCBS) to Cigna on July 1, 2024, and just like the many struggles I faced getting BCBS to approve the medication initially, Cigna has now also denied this medication. So we are back to step one, getting approved, and then a possible bigger challenge, finding the medication in stock.

Step One: Review Insurance Denial

From what Cigna has said in my explanation of benefits, their actual words:

I was denied Wegovy 1mg because...

1. My records show that I will not take Wegovy along with exercising and eating a better diet.
2. My records do not show that I already tried to lose weight for three months or more.
3. My records do not show that my BMI is >30, or >27 with additional health concerns (ex. high blood pressure, Type Two Diabetes, breathing problems during sleep, etc.)

Each of these denial reasons is absolute BS. I already exercise, and eat healthy, I have tried losing weight for most of my life, and my BMI is well over 30. 

The good news about running the Lipedema Fitness support group for more than a decade, my efforts are well documented, and I have years of visual proof.

Step Two: Talk to My Doctor (again)

I have been in constant communication with my doctor, we have talked a lot about my even considering taking them in the first place, I did not enter into this decision lightly, but currently I am talking to my doctor to find out what was asked of them, and what they provided in their Prior Authorization (PA) to Cigna, so I can understand better where the issue lies. Is Cigna not seeing the details my doctor provided, or did my doctor maybe not provide the details needed? I'm not sure, I'm still waiting to hear back from my doctor. Who I just learned is leaving the practice as of November, another bump in the road that is my health (I'll save that for another day).

Once I know what was asked and how my Doctor's office answered the PA questions, I can either have them resubmit the PA with more details, or I can decide to appeal the decision and include my own documentation.

Medication Shortage Issues

Additionally the 1mg dose was not in stock anywhere in my town. I struggled to find the .25mg in May, and I struggled to find the .5mg dose in June, but ultimately I did find them at a CVS pharmacy a few towns over, and CVS was fantastic to work with, as they would check to see if nearby branches had the dose I needed in stock, if they themselves did not. But nobody seems to have the 1mg. dose, not CVS, not Walmart, not Walgreens, etc., so even if I wanted (could afford) to think about forgoing my insurance, and pay out of pocket, nobody has it in stock, and they cannot tell me when it will be available. And quite honestly, at about $1300 per month, that is not an option for me.

Which has me questioning going through a Compounding Pharmacy. For those that do not know, a Compounding Pharmacy is one that can make customized medications. GLP-1 meds can be made through Compounding Pharmacies, if they are sterile and licensed in the state where you live, due to the shortage of these medications.

Please know that the FDA has advised "Patients and health care professionals should understand that the agency does not review compounded versions of these drugs for safety, effectiveness, or quality." So this is another big decision that I will have to evaluate.

What I Experienced When I Went Off GLP-1

My last injection of the .5mg dose that I was taking in month two was done on Sunday, July 7. 2024. Which means I have been without any medication since then, so about three weeks of no GLP-1.

As I mentioned above, the biggest thing I have experienced is INFLAMMATION OVERLOAD.

Not only did the inflammation return in the areas that experienced a reduction while on the medication, I experienced some other more intense issues from the surge of inflammation in my body due to the abrupt stoppage of the medication.

The first was a Bartholin Gland Cyst. If you have ever had one of these, you know how extremely painful they can be. Since I have had a few of these over the years, I know what the early signs are and thankfully the supplement Serrapeptase works wonders, like immediate relief. Within a couple doses it was gone. This is a supplement I keep on hand as one recommended early on by Dr. Karen Herbst to help with Lipedema. I was unable to take on a regular basis as it caused pain in my knees, and when I stopped it, the knee pain went away, but I do keep it on hand for the cysts.

The second was an eye issue showed up in my right eye. Since peri menopause I developed dry eye syndrome. I wear contacts and went from wearing them daily to being able to wear them about once or twice a week. Did you know it is a common condition for women transitioning through menopause, like 60% common. Did you know that doctors sometimes call Dry Eye Syndrome A Vicious Cycle of Inflammation? I have been doing all the suggested steps to keep my dry eye syndrome under control, like being mindful of air blowing in my eyes, limiting contact wearing, moisture drops, etc. It had been years since I had any issues, and wham last week my right eye began the symptoms. It is incredibly painful and irritating - but ultimately I began using a moist heat mask treatment nightly and that seems to have resolved that issue. If I miss a day or two the pain is right back.

The third has been with skin integrity. Which includes overly dry skin in some areas, and overly moist skin in other areas. Rashes have been challenging in skin fold areas (something that completely stopped while on the medication). Even during the heatwave that was our summer. Now those are back seemingly even more often.

The fourth was some heart beating rapidly since menopause, randomly, no real understanding why, no similarities in what I’m doing when it happens, but on the medicine, none occurred. Could be coincidence, but since I’ve been off they have returned.

So Where Am I Now? (Updated October 11, 2024)

I learned I cannot appeal the insurance denials, my doctor has to, and you can imagine after three attempts my dr is tapping out soon, I had a follow-up apt with her on the 20th of August and she is leaving the practice and said we can try again at the new practice in December. I’m honestly looking into Zepbound straight pay (they introduced a direct through them pricing plan, as they are not thrilled about compounding agencies). Or maybe a compounding version, a trusted Lipedema friend shared where she goes (in my state), and talking to my doctor about it.

Also, there are new obesity ICD-10 codes that don’t include “due to excess calories” which I learned was an issue with the past codes that did say that. The new codes just went into effect Oct. 1st, so more to investigate.

Overall it feels like the process is made to make us walk away from trying to receive medication we should be approved for. We pay more and more for insurance, and it provides less and less.