I should be starting Benlysta soon, but started stressing out about a risk on brain infection especially since I was exposed to the JK virus before that supposedly increases risk of serious brain infection. I still want to try it but can't get rid of the fear.
Any suggestions? Anyone with experience w Benlysta? If yes, did your doctor check for JK virus and still recommend Benlysta?
Miccika1,
I live in the US. My rheumatologist stated clearly to me that I should NOT take Benlysta if I have been exposed to the prion that causes Bovine Spongiform Encephalopathy (“mad cow disease”) or variant Creutzfeldt-Jakob Disease (vC JD). Even though a patient might not develop the disease, (s)he should not take Benlysta if (s)he has just been EXPOSED TO the prion that causes it.
My rheumatologist is an MD who is board certified in Immunology. His office participated in clinical trials of Benlysta.
I have not taken Benlysta and have chosen not to try it.
Of course, you should consider the information your doctor gives to you first and foremost but, seeing your question, I feel compelled to pass on the strong warning my physician gave to me.
I hope you will find treatment that helps you with your lupus symptoms!
I hope you will be feeling better soon!
Kind regards,
Lorelei ❤️
Rheumatologist only tested for John Cunningham virus (JCV) for which Im positive. That's why im a bit scared to start w injections. He didn't test for the mad cow disease virus antibodies. He thinks the risk is still low. In my mind I wanted to try it for three months and reevaluate if benefits outweigh risks. Im sure risk increases the longer I take it. Also im planning to stop Immunosupressant (mmf) so the immune system is not double suppressed. In any case I will ask him again about the virus antibodies and reevaluate...
Thanks for answering!
Sounds like a good plan, especially holding off on other immunosuppressant drugs!
I misunderstood your abbreviation as standing for a different disease. I’m so sorry.
I know what a big decision this is that you’re making! I know it’s scary!
I’d like to hear whether or not you feel better after taking Benlysta, if you don’t mind sharing here.
I hope you have great results and will be feeling much better soon!
Take good care of yourself! ❤️
Lorelei
Will let you know in two months 😃. But you are correct about the virus, the John Cunningham virus (JCV) is the one problematic, i think it's similar to the one for mad cow disease and if the immune system is suppressed, the John Cunningham virus (JCV) causes brain disease and death. So the risk is small but very serious.
benlysta.com/savings/guide....
I would call their help line and ask questions about their research, warnings, etc. and discuss any questions with your doctor.
I know several of us on Benlysta and it is helpful when we are able to use it.
If for any reason we get some kind of infection, they do stop it during that time and we can tell the difference. That of course is because our immune system is lower, and we need our strength to get over whatever infection has occurred in our body.
You are doing the right thing with this research first.
That is the way all Lupus ‘Patients should treat their lives - is to study and be proactive “working with our doctors”.
How long before you noticed a difference when you started Benlysta and how long when you stop?
I started taking it about mid 2012, And personally the only time I had problems was when I had to wait six weeks due to insurance at the first of one year to kick in correctly and I had not been approved with the new insurance plan yet for Benlysta .
I could really tell that my body needed it and I felt like I was like falling off a cliff. Another friend of mine said the same thing happened to the very same year, and it it felt like she was falling off a cliff. Everything was going out of whack.
Before I went on Benlysta in 2012, I would have to use prednisone up to at least two / three times a year to bring the Lupus back under control. That would be 30 days working down from 20 mg to zero to bring me out of the bad Lupus Flare. The only time I’ve had to use prednisones during my time on Benlysta was when I had surgery, and my body went into a Lupus flare after the surgery - but that is common for lupus patients. that is why we always let our rheumatologist know “every time we’re going to have any type of surgery”. They may want to talk to the surgeon to let them know you have lupus and that you are to be treated a little differently and maybe prepare to have prednisones waiting in the wings in case you need it during the surgery recovery days . Anything like surgery, a car accident, major stressful event, can cause us to go into a deeper flare and we may need a little help .
Hydroxychloroquine is the best thing that I took for my joint pain. And I hope to keep using it as long as my eyes are good 😊
On a regular basis, I am not on prednisone at all, I don’t have those times where I cannot pull it back in without going to prednisones.
I try now to do proper rest, medication, eating correctly, Lupus Support GROUP for support & ideas , when I have a problem I look it up and I try to figure it out and I discuss it with my rheumatologist.
It still catches me off guard, I can’t plan things in advance very well because I may not be up to doing it . I do plan rest times before the big events that I “have to attend”, and I plan rest time after these big events and I try to watch the “stress” - I know that is a problem for me. I have learned my limitations and to say “no” and not volunteer for “everything”. I try to have a back up person that I can call if it is something that is major and I have committed myself to being there.
What we all know, everyone living with lupus is “different”. So if you and the rheumatologist agree, I would definitely give it a shot and give it a couple months before you really can start to tell a significant difference.
Be sure to post how do you when you start and it will help others for sure💜
thanks for replying. I have to take prednisone almost each month and lately even more doing 20 mg and taper to 1. I'm currently at 3 :). I had the same experience w plaquenil regarding joint pain. I'm planning to get off of MMF as soon as I start Benlysta to make sure i'm not too immunosuppressed. plus I think MMF is not doing much for me anyway. I'll start on Friday. Will report if I start feeling better. I work full time and work stress definitely makes a difference so I absolutely agree on 'stress' being the major issue, but I think I would feel depressed if I didn't work, plus I wouldn't have insurance :)…. fingers crossed it works for me and I can get rid of prednisone and MMF.
Hi, I think previous exposure to the JC virus is very common (over 50% of people) and it only becomes activated in very very few cases, but can understand your worries because it is more likely in immunocompromised people. Has your rheumy given you the statistics? I had rituximab rather than benlysta but think the risks are the same and I was a bit worried but they were so small. I've had 4 infusions of rituximab now and it does make a positive difference to the disease and my quality of life.
It's so hard balancing the pros and cons of the medications isn't it? And we all react differently so much is unknown. My biggest worry has always been cyclophosphamide which I've been told is next for me but I've realised that sharing my worries with my rheumy and lupus friends often helps because sometimes it's better to take some risks to have a more normal life.
Good luck whatever you decide and if you do decide it's not for you - there are other options
xx
Does anyone suffer from chronic throat infections?
Lupus flare
Risk from shingles ??
flu jab?
Immunocompromised Health Care Worker with Lupus
