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TOPIC: Cost of Treatments

Cost of Treatments 7 months 3 weeks ago #64010

  • jhend1125
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I have not seen anything here about the cost of treatments. When I research it'a all confusing and some say "expensive" but don't quantify it. I am coming off my prednisone treatment and haven't had anything else. I hope I will get stable but need to think about the future. I am on Medicare and have Part D drug plan that doesn't seem to cover these drugs. Can anyone give me an idea of what I'm looking at? Cost will enter into my decisions.
Thank You
Joan

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Cost of Treatments 7 months 3 weeks ago #64011

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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Joan, cost certainly is a factor and it's different for everyone depending on their insurance plan. When I was diagnosed in 1998, the treatment choices were limited. My doctor tried Win-Rho first, five weekly treatments. I didn't know any better and did it. It didn't raise my count at all and I didn't realize that if it didn't work the first time, it wasn't ever going to. I also didn't know that my co-pay was $250 per treatment. I had two girls in college and one was planning a wedding, so I was miffed at myself for wasting money. After that, I stuck with steroids for years because they were cheap. About 6 years into the diagnosis, Rituxan came out which I couldn't afford either, but the drug company did offer financial help without asking about income. I was able to use that treatment. The TPO's were not available yet.

That's my story and everyone has a different one. The TPO's can be expensive, but again, it all depends on what insurance will cover. It might take a while to get it approved...you can appeal if they deny it.

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Cost of Treatments 7 months 3 weeks ago #64012

  • jhend1125
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My hemo gives me the idea I cannot stay on Prednisone or take it again if my count drops again. He implies I will have to chose a new treatment involving more expensive drugs. I do pretty OK on the steroid and can at least afford it.

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Cost of Treatments 7 months 3 weeks ago #64014

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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It's not a good idea to keep using steroids, but no one can force you to spend money that you don't have. All of the treatments have side effect risks so who's to say that one is better than another? Your treatment decisions should be based on what works for you, what you can tolerate, and what works with your lifestyle (time and money). Period.

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Cost of Treatments 7 months 3 weeks ago #64018

  • dru
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  • I developed hemolytic anemia in 1999 and ITP in 2005. Treatments have been splenectomy, prednisone, IVIG, and Rituxan.
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Some treatments that are given at your doctor's office by IV are covered under your Medicare Part B rather than the drug plan, Part D. My Rituxan treatments were covered under part B-and I have a supplemental medigap plan so I did not pay anything for the treatments. IVIG and Whinro may be covered like this but you would have to check for sure.

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Cost of Treatments 7 months 3 weeks ago #64019

  • midwest6708
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  • ~ Janet ~ Diagnosed Sept. 08
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Medicare does cover NPlate as a medical treatment under part B rather than as a drug under Part D. I'm unsure whose rule it is - Medicare's or my insurer's advantage-type plan - but my injection has to be given with a doctor on site. I presume that's what defines it as "treatment". Any copayment your supplemental insurer requires would be applicable.

Promacta, on the other hand, is covered as a drug. As a "specialty drug", the copay for me would be more than I want to spend at this time.

My best advice is to find an open-minded doctor willing to adapt your treatments to your limitations. If he/she insists on doing things their way only, you'll have a harder time managing your disease.

Wishing you the best of luck.

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Cost of Treatments 7 months 3 weeks ago #64024

  • jhend1125
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Thank you all for the information. I feel much more confident I'll be able to handle whatever comes my way. I'm so thankful to have found this group and it's wonderful people.
Joan
The following user(s) said Thank You: maria3132

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