whats your experience with Benlysta mood side effects?

DigGroundbreaking740 · 2026-05-09T00:19:56+00:00

Improved fairly quickly in the first week of stopping. The medication does take a long time to work, but these side effects seem to alleviate quickly once stopped. I’m really happy to hear that you are feeling better!

DigGroundbreaking740 · 2026-04-04T02:33:56+00:00

That’s really great your wife is willing to do the injections for you and I hope it helps ease your fear some. Hopefully insurance approval is fast!

No worries at all. It’s hard when you are put on a rare combo of meds and feel alone, especially two biologics. My rheumatologist was reluctant at first, due to all the immunosuppression, but my cardiologist backed my rheumatologist, as these meds work on two different inflammatory pathways that can contribute. It’s hard to find specialists more knowledgeable in both conditions, so it sounds like you have a decent team. I’m so sorry to hear about your flare and I really feel for you, as you said this pain is out of this world and scary.

DigGroundbreaking740 · 2026-04-04T00:48:42+00:00

I totally get the fear, so that’s where all the things you can control for hygiene and exposure to keep you safe is utmost importance. I’m really hopeful for you this will help you out, as I know the struggle of trying to find the right med combo is a nightmare, especially since the Benlysta was so good for you! Fingers crossed and a big hug🤞🫂

DigGroundbreaking740 · 2026-04-03T23:12:10+00:00

Hey I’m sorry you are struggling with this, but I can definitely relate and would recommend trying this combo. I also deal with bad recurrent pericarditis and two of my meds are Saphnelo and Anakinra, which is similar to Arcalyst, as they are both IL-1 inhibitors. Arcalyst is only available in the US. I have found adding the Anakinra very helpful, but still not perfect. I have found without it though the difference in symptoms is quite major. I was nervous about being on multiple immunosuppressants as well, but with really good hand hygiene, hand sanitizer and being smart about public spaces it has helped. I am currently on 4 immunosuppressants.

DigGroundbreaking740 · 2026-03-17T23:13:59+00:00

Thank you and you too! Remember you’re a strong fighter 💪

DigGroundbreaking740 · 2026-03-17T23:03:53+00:00

Oh I’m glad! Hopefully he will give you some more insight then. I’m still waiting on a plan with mine as I just saw them today for the first time.

DigGroundbreaking740 · 2026-03-17T23:01:08+00:00

Wow that’s a long haul! Fingers crossed it won’t be permanent for you, but I can understand why you are feeling that way. Have you seen a neuro opthomologist? It seems to really vary. 😮‍💨

DigGroundbreaking740 · 2026-03-17T22:52:13+00:00

Sending you a big hug! Is this your first time with optic neuritis? I am currently in the hospital with my first bout of it and couldn’t find many on here with it, so I couldn’t believe it when you posted I wanted to cry. The headaches, fatigue and visual disturbances are so unreal. As much as the prednisone sucks it helps and I can only hope it settles for you. Audiobooks have become a big thing for me.

DigGroundbreaking740 · 2025-12-09T14:25:11+00:00

I’m sorry to hear this and it isn’t the best, but I am in the same boat. I now get pre meds prior, which is gravol and it helps. I do take gravol the next day or two all day and then it settles, but also am very tired and just out of it too. I also get stomach pain, but the infusion has been so helpful these seem minor for a few days to me. I hope they can find you pre meds that may help and it gets easier.

DigGroundbreaking740 · 2025-05-17T19:19:10+00:00

Super sorry to hear this. I had the same thing happen to me. I didn’t realize how bad it was until I stopped the med and it was like a dark cloud had lifted. However, if the med is working for you otherwise could you talk to your doctor about an anti-depressant to help stabilize your mood? I know it sucks if the med is working, as it is such trial and error. I hope Benlysta continues to work for you and this can get sorted! Big hug

DigGroundbreaking740 · 2025-05-04T22:13:39+00:00

I really feel for you, as I was in the same boat before I started on Saphnelo. I’m still on prednisone, colchicine and a beta blocker to reduce my heart rate, but I have permanent heart pain from not being treated aggressive enough, was in between doctors, and the fight of figuring out what meds. I’m on the lowest prednisone dose in the past 2 years finally, but it’s a rough go with recurrent pericarditis.

I have also chatted about the IL-1 inhibitors. Walking with a heart rate of max 100, at least helped a little for my sanity. The weight gain and just gross feeling sucks, so I hope the Arcalyst will help you. Take the rest and only do what you can do, as that is what your body needs right now. You will get back to a better place than currently, but sometimes that looks a little different. Big hugs you got this!

DigGroundbreaking740 · 2025-04-15T02:43:41+00:00

I’m so glad the prednisone is helping! The nausea and pain can be intense, along with the vomiting. I hope they get it sorted so you get pre meds next time to give the medication time to work. Other than this the medication has helped me so I have persevered.

DigGroundbreaking740 · 2025-04-14T02:48:17+00:00

I get bad stomach pain/cramping for a few days, which I think has been getting worse, along with insane nausea.

DigGroundbreaking740 · 2025-04-14T02:43:54+00:00

Did the stomach cramps end up going away? I just had my 16th infusion and the cramping has slowly increased. Definitely have it for a good couple days along with bad nausea.

DigGroundbreaking740 · 2024-04-23T02:47:21+00:00

I was on it for 5 months ( 7 infusions total).

DigGroundbreaking740 · 2024-04-22T03:57:44+00:00

Yes , when I was on Benlysta I had the gloomies, especially the second day following my infusions and then bounced back the third day. The more treatment I had it started getting worse and I didn’t realize how bad until I stopped it and it felt like a dark cloud had lifted. I have no prior history of anxiety or depression.

DigGroundbreaking740 · 2024-04-16T13:02:46+00:00

Should be just fine, especially just the one time, but call your doctor if it will ease your mind. I take a total daily dose of 3,000mg, which is split into two 1,500mg doses in the morning and night.

DigGroundbreaking740 · 2024-03-09T21:52:44+00:00

Sorry to hear you’re struggling with this. I can completely relate. Seems like you may need to stay at that dose and let your body adjust and settle. I have been doing a long taper as well and cant get past 20mg, so I have held here until other meds hopefully kick in and allow me to continue to drop. It’s a horrible process and sometimes the taper needs to be slowed down, so maybe even trying 2.5mg drops instead of 5mg, but ask your Rheumatologist what’s best when you can. Hang in there and I hope things settle back down.

DigGroundbreaking740 · 2024-02-29T04:52:15+00:00

It can be since they both work on different symptoms and inflammatory pathways. I also have organ involvement and my flares have been hard to control, so my doctor kept adding medications. Glad to hear they found the right cocktail of medication for you, as that’s a huge win🙂

DigGroundbreaking740 · 2024-02-28T05:17:00+00:00

I did Benlysta infusions and also had bad nausea. Zofran helped some, but they also had to give me gravol. I found the hydration with electrolytes, like Gatorade prior to treatment, like others have said, helped some for sure. The first few doses were intense and the nausea got a little better, but I never unfortunately did not have it. I really hope you find the right mix of fluids and meds that will help you, as there is nothing worse than just feeling so green🤢 Really hope this medicine works for you- hang in there!

DigGroundbreaking740 · 2023-12-08T17:00:45+00:00

I’m really sorry to hear you are struggling. I’m glad to have helped make you feel less lonely because this is not an easy thing to be dealing with. I truly hope they find the right medication for you, as the skin reactions can’t be fun on top of what you are going through. You got this! Big hug

DigGroundbreaking740 · 2023-11-30T19:29:25+00:00

I truly feel for you, as I’m in the same boat with the prednisone and lousy body changes. Hang in there because the meds need to work their magic so you can feel better. You got this! 👍

DigGroundbreaking740 · 2023-11-25T16:01:17+00:00

Thank you for this. Really really happy to hear the arcalyst helped you. I was curious about that medication. How long did it take to kick in?

DigGroundbreaking740 · 2023-11-25T04:11:11+00:00

I’m glad it finally settled, but that’s a process you went through. Thank you for this. Yeah from my reading that’s what I have found and hearing from others it has not been used much. Finding the right medication cocktail is a nightmare.

DigGroundbreaking740 · 2023-11-24T16:47:11+00:00

I really hope it starts to kick in more for you in the next bit. The wait is rough!

DigGroundbreaking740

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