Belimumab

[Harry19]

Has anyone started Belimumab x

[SurferGuy]

Hi Harry, I was on the trial for Belimumab. Thankfully after the trial I was informed I was on the real thing and not the placebo. To say it has worked wonders is an understatement. I feel so much better now than I did pre Benilumab.

[Harry19 in reply to SurferGuy]

Omg this sounds amazing . I suffer with extreme fatigue. Has it helped you with this ?

[SurferGuy]

It has helped with fatigue, joint pain and my nephritis. I still do get days when I have aches and pains and feel exhausted, but not as much as before.

For me, pre Belimumab, I also felt that on occaaions a lot of the fatigue I felt was down to the constant pain and having to make that much more effort to do anything. Call it a psychological fatigue caused by the constant feeling of having to work that little bit harder to do the most simplest of things. A "can I really be bothered to go through the pain of getting up off the sofa to go and grab a bite to eat"! scenario. After a few thoughts like that, you psychological feel fatigued. Hope that makes sense lol

Don't get me wrong, there were much more days when it was pure down and out fatigue though. That was REAL and draining and disheartening.

[Paprika60]

Hi, I am in the middle of the six months trial. It is too early to tell but it seems I haven't developed side effects from it at least and I see that as a positive start. I found the premed more challenging (liquid steroids & antihistamine) as it stayed in my system for at least two days keeping me so drowsy and yet wide awake even at night. Unlike SurferGuy, I haven't noticed a big difference in energy but I think I have tiny more when walking or light gardening perhaps. Apparently it is a very slow working therapy and far less drastic (less speedy or nastier!) than Rituximab. I hear it is safe enough for pregnant people, designed for Lupus specifically for Lupus. Hope that helps.

[SurferGuy]

Paprika, great to read you too are on the trial. Do you know if you're on the real thing?

And pre-meds - ahhhhh, yes! I forgot about those. I was out for 1 - 2 days after those.

As you are past the 3 months mark, if all goes like mine did, you'll very soon start feeling the difference

Please keep us updated on how you go.

[Paprika60 in reply to SurferGuy]

Hi SurferGuy,No mine is a genuine one! I meant trial in a sense that they wanted to try Belimumab to see if it would do the trick as I cannot be on Rituximab and IVIG is not as easily available. Unfortunately I had very severe reactions to Pfizer (three months of pure hell!) and was still suffering when they started me on Belimumab so it is very hard to tell if I am better because of Belimumab or because I finally got over the side effect of Pfizer. Are you on this semi permanently every month? Do they stop once you reach a remission and good blood test results? What does your doctor say?

[SurferGuy in reply to Paprika60]

Great to hear you're feeling so much better - whether it's because of the belimumab or getting over the side-effects.

I'm not on it permanently. I was on the official trial about 2ish years ago, not knowing at the time if it was the real thing or not. But about half way through, I was in no doubt it was the real thing. I felt so much better.

I've been offered top-ups, but as I don't feel too bad right now, I don't want to pump even more chemicals around my body just yet. But should the time come, then no doubt I'd have it again 😃

[Paprika60 in reply to SurferGuy]

Thanks for your reply. You are wise not to go for the top ups. These antibody treatments are really for the desperate. I am not much better just a bit better. Lately I have been having sharp headaches daily so that could be the side effect...I shall see it through the end of six months and see what happens. It would be interesting to see how Harry 19 reacts in a month or so. Hope you stay well without it!

[kinkin1001994]

hey! I've been using belimumab since 2 yrs. As of today: i'm in remission. From time to time i still get arthritis and ulcers in my mouth, but that's it!I only have positive experiences with Belimumab (except injection yourself, haha. But its worth it!)

Hope that helps

[Harry19 in reply to kinkin1001994]

That’s fantastic I’m a bit worried Nice are not going to commission it

[Paprika60 in reply to kinkin1001994]

Hi, can I ask when you started noticing the difference once you started Belimumab?I am about to get my 5th infusion and I am not getting any benefit ...if any, I feel weaker a bit.

I cannot get through to my doctor and my hospital has no designated nurse for Lupus or Vasculitis. So I am frustrated and stressed out now. Everybody reacts differently but surely there must be some collective reaction to benefits. I am wondering perhaps it doesn't suit me. Please let me know! Many thanks.