Belimumab treatment

[Spacecadet73]

Hi

I have lurked on this site for years but now after reoccurring pericarditis my treatment for lupus will change. I need advice and have questions

I've been in Plaqunail and methotrexate for years and tapering off prendsisone at the moment. The pericarditis comes back when I taper off the steriod so my doctor was thinking of trying a biological drug.

I suffer from the common lupus symptoms like fatigue, joint pain and other fun things. I have APS as well and take blood thinner.

I have been reading about the side effects of Belimumab and I worried about the depression/sucidal thoughts effects. I all ready suffer from anxiety and seek therapy for it. I have a workmate that take this same drug for lupus and its worked well for her. I want to try it but scared it will affect me badly.

How does it work for others?

Thanks

Maggie

[SonyaNME]

hi, I’ve been on it just over a year now & have tolerated it really well, I’ve suffered from anxiety & my mood was pretty low at the time due to postnatal issues but it didn’t have an impact on that. It improved a lot of my symptoms & has allowed me on a lower dose of pred for the first time in about 15 years.

[BukkyApampa]

Hi,

I've been on belimumab for about 15 months now, I've had improvements in my fatigue, joint pains and migraines. I'm currently not sure about the depressive side effects, in the 16 + years that I've had lupus, I've not been diagnosed with depression even though lupus patients are more prone to depression than not but I've noticed since been on belimumab that my moods are lower and I'm more anxious than usual, I'm also having sleeping problems, well worse than I used to. I do have some new life challenges with a newly diagnosed poorly child which was around the same time I started belimumab hence why I'm still unsure if these symptoms are related to belimumab. I hope this helps.

[MaryannM]

I’m having the same at the moment and because the Rituximab isn’t working so the want to try me on the belimumab, I’m also very worried about the depression and suicidal thoughts. 😞 sorry for jumping on your question x

[Spacecadet73]

Thanks for your replies.

[Paprika60]

I have been on Belimumab for over two years. I injected myself with a weekly dosage which I find far more effective for my condition rather than a monthly infusion. I managed to discontinue Pred. after being on and off for over 15 years. It took so long to stop but it has been so worth it! I am on Hydroxy 200mg daily and this helps with joints. I am not allowed to stop although I dislike taking Hydroxy. Belimumab helps me with fatigue more than anything I feel. It doesn't completely get rid of it but I am most certainly far less tired often.

I take Vitamin D plus K2 daily every morning after breakfast and this has helped kicking depression off completely. It is great for your bone health too. I no longer get depressed. Of course, I try to stay positive and have learned to love myself and my life more. That makes a huge difference. I think you are lucky if they want to give you this biologics and go for it. You can always discontinue but I have a feeling you won't.

Good luck!!

[Spacecadet73 in reply to Paprika60]

Thanks. My pericarditis returned this week so I'm hoping that I will start the biological soon. I see the doctor this next week. It's been an uncomfortable few days with chest pain. The clinic that treats my lupus started me back on 15MG of prednisone on Friday. I was down to 10mg and tapping off and not been taking methotrexate for 3 weeks. Not sure what is causing the pericarditis this time but its been coming back when steroid treatment stops.

I like the idea of taking the vitamin D and K2 to help combat the depression. Since I take blood thinner some supplements I can't take.

Im work with kids and having lupus has always been a struggle but the added new flares with my heart makes it almost impossible. Im only working 6 hours a day but that is even becoming difficult. I work in afterschool care all holidays and summer. I can't continue with a flares 3 times a year and exausting fatigue.

At the moment Im on sick leave for a while. Until they can find a way to help me.

Maggie