Newbie with drug question

[WordWeaver]

Hello everyone,

I am new to the group, also fairly new to Lupus (2 years) - perhaps. My rheumy thinks my new rheumatoid arthritis (20+ years) has been "evolving" into Lupus for quite awhile, but the anti-dsDNA markers didn't show up until a couple years ago. In fact, he's treating me under the assumption that I now have full blown Lupus, rather than overlap disease. I have been on plaquenil (continues,) Rituxan, Prednisone, and Cellcept (generic). I have a bevy of symptoms: joint and muscle pain, vision problems, impaired brain function and memory issues, headaches, flushing, rash, hives, nerve pain (primarily in my feet), and hair loss.

I very much appreciate the support and wisdom of this group.

I am looking for medication guidance. The prednisone helped a lot, but was causing vision and glaucoma concerns, and also spiked my blood sugar into pre-diabetic range. So, I see why the doc wants me off of it. However, the cellcept made me anemic (gradually getting better,) and the idea of it killing off my cells to dampen immunity scares the daylights out of me because of the obvious cancer risks down the line. I am feeling better, though not as good as when I was on prednisone. And I still can not be in the sun, even fully coverage and 100 spf sunscreen. I'm not sure if Benlysta is an option. I am in the US, so it's available, however, medicare would not cover enough of it to make it affordable, unless there were some kind of assistance program. And, of course, there are cancer and other risks with Benlysta too.

Thank you for any advice.

[Mybe]

I to have rheumatoid arthritis. Has well. I get good day's and bad day's. It musbe hard work with two children. Hope your husbad help's you.

[WordWeaver in reply to Mybe]

Hi Mybe,

Thank you for your compassion. You have my sympathies, as well. My children are all grown and out of the house, but it's still a challenge, as you know. My husband is a tremendous help.

[WordWeaver]

Thanks for sharing your treatment information, Spottycheek. It helps to know that I'm not alone with having continued symptoms. I've been on virtually all the immune suppression drugs over the last couple decades with RA. The Cellcept just scares me more than the others, because of it alters DNA.

[Paul_Howard Partner LUPUS UK]

Hi WordWeaver ,

Welcome to the LUPUS UK community forum. I hope that you find this a helpful place for information and support.

I can appreciate you concern about the side-effects of the medications you are taking. Have you discussed this with your consultant for their views?

There is a section of The Lupus Encyclopedia by Donald E Thomas Jr, which discusses the relationship between immunosuppressant medications and cancer which may be of interest to you;

"A large number of the medications that are used in treating lupus and that suppress the immune system carry warnings about their possibly causing cancer. This is primarily done from a theoretical standpoint in many cases. The immune system is very important in policing our bodies to get rid of any cancerous cells that form throughout our lives, so it makes sense that if a medication suppresses the immune system, that there could be an increased risk for developing cancer. So far, the TNF inhibitors have been studied the most regarding this question. Although there have been a few controversial results, overall, there appears to be no significant risk for developing cancer from these medications according to the latest studies."

[WordWeaver in reply to Paul_Howard]

Hi Paul,

Thank you for your response and additional information. It is somewhat reassuring to know there are new study results. I will be speaker ng with my rheumatologist in a couple weeks and will, hopefully have his attention long enough for o discuss this. He is very good, which means he is very busy. I appreciate the support of this group.

[Hidden]

Hi WordWeaver.

I live in the US, as well. My Rheumy introduced me to Benlysta in December 2017, however, I did not begin taking it until the end of January. I started off getting the injections in the office, but now I self-inject. It’s easy, it’s like an epi-pen. Takes abou 3 sec. I still take my plaquinil,as well. I was taken of prednisone after being on it for 3 years. Of course Prednisone made me feel somewhat normal, but it was dangerous for my kidneys. My doctor was concerned that I was on it too long. It was a struggle after I was weaned from Prednisone. I’ve also taken cellcept, which did nothing for me. So now, Benlysta. I am slowly beginning to gain energy. I’m actually able to do chores and cook again. Also, my numbers are declining since beginning Benlysta. (-5) Blood Pressure is good and my kidneys are great. Also, no protein in my urine. This is the first time since I was diagnosed that I’ve seen improvement in my bloodwork. I was hesitant because of the cancer risks, but mostly all our meds have some type of risk, even deadly ones. I also contribute my positive results to my change in my diet. I no longer eat meat, dairy, or meat byproducts. I made this change in January. Oh, there is a program to assist with paying for Benlysta. After my insurance and the assistance program, I only pay $100. Research Acreedo. Prayers to you!

[WordWeaver in reply to Hidden]

Thank you for sharing your story. It helps knowing that others have similar struggles finding the right medication.