Doctors or Insurance: Who Decides the Best Lupus Treatment for Me?

Doctors or Insurance: Who Decides the Best Lupus Treatment for Me?

My rheumatologist’s office is almost two hours away from my home. He is highly regarded in his field, so I make the trip to see him every three months. I trust him to give me good advice. Starting at my first appointment, he has asked many questions and listened carefully to my answers.

He immediately changed all my medications and added a couple more he thought would be beneficial. He always draws several vials of blood and makes adjustments based on the results. He keeps up with all my other illnesses, not just the ones I see him about. For instance, he asks if I’m getting my eyes checked annually. He made notes about my thyroid surgery and the adjustments to my medicine for that. I don’t feel like I’m just a “chart” to him, and I don’t think he would ever steer me wrong to sell a particular medication. 

During my last visit, he told me about Benlysta (belimumab). The U.S. Food and Drug Administration approved the intravenous version of Benlysta in 2011, but now they also offer a self-injectable pen. The inflammation in my body is getting worse, so he wants me to add Benlysta to see if it will keep it under control. He thinks the self-injectable version would work best for me because of the distance from my home to his office. 

I agreed to try it, as I will try practically anything he recommends. If it doesn’t bring my numbers down, I can drop it and try something else. 

It all sounded good up to this point — until I received a call from his nurse the next day. My insurance company won’t pay for the self-injectable pen, but they will pay for the IV version. Which means I would have to make a four-hour trip every month either to the doctor’s office or a hospital. Not my idea of fun. 

I’m sure insurance companies have highly paid people making these decisions, but I’m having a hard time understanding this one. I can’t imagine that it would be cheaper for a nurse to administer an IV than for me to stick myself in the leg. 

In an article by Pharma Intelligence, Jessica Merrill writes, “[Benlysta manufacturer GlaxoSmithKline PLC] expects there may be some access challenges initially, given that the subcutaneous version will be reimbursed through the pharmacy benefit rather than the medical benefit, as the IV version is.”

That still sounds like the self-injection should be cheaper, so what is the delay? I know that insurance companies move like glaciers, but it has been available for two years. They should have all the kinks worked out of the system by now. 

Please don’t take this the wrong way, I am grateful for my health insurance. They take care of my medicine and doctor’s visits with only a co-pay. I know they have to make money to stay in business. But in this case, I’m trying to save both money for them and frustration for myself. 


Note: Lupus News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lupus News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to lupus.

Darla, who lives in Arkansas, was diagnosed with lupus in 2015. As she grows into her new normal, she created this column to help others with lupus know they are not alone. She writes about hunting down the root causes to her symptoms and side effects.
Darla, who lives in Arkansas, was diagnosed with lupus in 2015. As she grows into her new normal, she created this column to help others with lupus know they are not alone. She writes about hunting down the root causes to her symptoms and side effects.
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  1. CMS Sanders says:

    Hello my dear;
    Sorry to hear your inflammation is worse. Like you I was faced with worsening symptoms and high inflammation markers.
    I am on Medicare. Any IV infusion is seen as a medical procedure and is covered as such. A prescribed self injectable is a pharmaceutical claim and has a super high co-pay.
    Wishing you the best.

  2. Sara says:

    I do exactly the same with my Rheumy, and for the exact same reason! She rx’d Benlysta SC for me almost a year ago and I must tell you- it was worth the battle that her insurance nurse went through to get it approved!! I have had to stop both it and my methotrexate sc injections, due to an infection that I caught and, if I had any doubt that they were incredibly effective for me? Those seven weeks of misery proved it to me!
    One prong that they used to get it approved was that the infusions tend to ‘wear off’ the third week after treatment, leaving the patient miserable for a week. There were other things that they used and I am happy to ask her, if you think that the information may be helpful for you!
    I am sending positive healing energies and ‘insurance getting head out of rear’ energies, so that you are able to get the Benlysta on board- I sincerely hope that you have the same benefit that I”ve had! I’m entering my second week of no benlysta, prepartory for tumor removal from thyroid and two other masses in my neck next Friday. I’ve kept the Meth on board, but I’m seeing just how much the benlysta ‘capped’ it off and makes me functional with managable pain, at times? ALMOST ‘normal’… I had no weight gain, only side effects for me are;
    the injection is painful-I learned to numb (ice pack directly to skin) my leg for 30 min prior to the injection, and to bring the injection to body temperature (stuffing it under my thigh for the icing time
    I do NOT suggest using tummy as injection site.
    Whole body ‘antsiness’ the night of the injection, almost like restless body- but I take a powdered magnesium drink and it truly helps that go away
    Vague anxiety the night of the injection- if you are prone to anxiety, be warned. For me? Once I realize the cause, it is less troublesome.
    Headache. Sometimes migrane, but headaches the next day. My doc has rx’d maxalt for me to take as needed.
    HYDRATE WELL!!!! The day of the injection and for the day after? Make SURE you drink more water than you think that you need/should drink. Rheumy told me that hydration seems to be a key in reducing any side effects.
    If you take both methotrexte sc and benlysta-I’ve found that I’ve fewer side effects from both, if I do the meth injection the night before I do the benlysta injection. Both on the same night leaves me sick for two days, reversing order seems to make the meth side effects worse.
    Over all? Do I think that it is worth it? Yes!!!!! I get five to six days of super (yes, towards the ‘end’ of the week for each injection, I know that I”m due) wonderful function and ‘freedom’ of unmanageable pain. Both do increase risk of infection though. When I have breakthrough inflammation and pain that is not tolearable, I take medrol (8-24mg per day), but until February, I was taking none daily and only spiking for pain relief two to three times a week. Amazing compared to where I was.
    Ok- I hope that this information is helpful to you- Oh-I also have been dx with Fibro and started lyrica (100-200mg per day, split dosing).
    Gentle hugs and positives energies,

  3. Darla Gay says:

    Sara thank you so much for all the good information! The good news is that the nurse called to let me know I’ve been approved so I’m just waiting while they get all the details worked out. I also have fibro. I take 200mg of Lyrica every day – its a miracle drug in my opinion.

    I had 2/3 of my thyroid removed last November because of a tumor. I hope your surgery goes as smoothly as mine did. It has healed now and you can barely see the scar. Once I got the right dosage of Synthroid, I haven’t had any trouble.


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