Lupus HELP

Oh, goodness, . My heart goes out to you. I know some of our members can relate to what you shared, from the insane costs of medications, to the struggle to find a treatment option that works. And, yes, the loneliness. Living with a chronic condition can be so very isolating and I hope being a part of a community like this one helps you feel a little less alone. I know a couple of our members have tried Saphnelo, but, unfortunately, I don't have much information on how they did on the treatment. One member experienced insomnia, but that's the only information I could find from a member taking Saphnelo. While I wish we had some great information on the medication to show you, I am not above linking to quality resources from another website. The Lupus Foundation has some good basic information on the medication, including potential side effects -- https://www.lupus.org/resources/saphnelo-what-you-need-to-know. Also, it looks like the makers of Saphnelo do offer co-pay assistance programs -- https://www.saphnelo.com/support-and-affordability. I know feeling unwell and alone is really freaking hard. There are a few good online communities dedicated to Lupus, so you may be able to find some online (or even in person) community. I can only provide one more link in this post, but I will make another with more links to reputable Lupus communities, if you are interested. Here's one -- https://www.mylupusteam.com/. And please know you are welcome here anytime you are feeling alone or just needing to vent. I know more of our members have tried Benlysta, so if you end up trying it, I can provide some information for you. But, I do hope you and your doctor find the treatment that works best for you and is affordable!

I am glad you reached out here. And please know, you are not alone!

Gentle Hugs, Erin, Team Member.

Here's some more community links, !

https://www.lupus.org/care-support/programs-and-services and -- here's a Facebook community, if you use Facebook -- https://www.facebook.com/groups/SLEsupport/. And the Lupus Research Alliance usually has information on clinical trials and ongoing research -- https://www.lupusresearch.org/. I don't want to overwhelm you with information, but I want to make sure you feel like you have some resources to look into, if you want to.


Again, thanks for posting here! Don't hesitate to reach out if you have any further questions.

Best, Erin, Team Member.

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I wanted to add a few words of support.
I hear your frustration, treatment costs and medications should not be so unattainable.
I can only recommend constantly communicating your issues with your healthcare provider. I too, was recently prescribed Journavx, and was in shell shook over the price (and my insurance company's coverage). My doctor sent it through to a compound pharmacy and the price was dramatically different. I'm not sure if this is an option for you, but it may be worth a try. Also, if you haven't yet, check out the drug manufacturers websites, they may have discount programs available that your doctor/pharmacist may not be familiar with.
I do hope others will chime in here with their personal experiences.
~Doreen (Team Member)

I was self administering Benlysta and found it was not helping me. I am getting Saphnelo infusions once a month and am happy with the results.