Benlysta infusions

[ladylou]

Hi I'm due to get benlysta iv infusions and wondering if anybody has had it and if it wirks

[noonoo52]

Hi Ladylou, no I have not but I suggest you look at this website on the drug.

benlysta.com

You may have done so already but do your research, lupus sufferers already have enough to contend with without adding to it.

Take care Nx

[ladylou in reply to noonoo52]

Thanks for your advice..xx

[Travelor in reply to ladylou]

Hi Ladylou,

I too will soon begin to recieve Benlysta infusions from my Rheumatologist.

I am a little nervous also not knowing how my body will react to this medication. My Dr. gave me written information a packet on Benlysta to take home and read before the treatments begin.

It was very helpful and also the website to read additional information was good. I guess we will just have to wait and see how our bodies react to this mediation. I wish you good luck and hope you find long term relief with your Lupus.

[ladylou in reply to Travelor]

Thank you, just need see how it goes,xx hope it works for you also

[martynxx in reply to Travelor]

my name is martyn. I write on health for national newspapers. If you've been on Benlysta, I would be keen talk to you. I am planning a health feature for a national paper health page.

I'm on 07973-531933

[ecough]

I've been receiving Benlysta infusions for at least 6 months and it's been very positive. The first couple of infusions, they will take a few extra steps to make sure that you react positively. They will give you tylenol beforehand in case you are prone to get a headache afterwards. I think that's only happened once to me. The infusion itself is pretty painless except for the needles to get the drug in to you. I feel so much better for the next 2 weeks or so. By week 3, I am starting to feel it "wear off" and usually ready for it by the time the next infusion rolls around. I've been on Plaquenil for the length of my diagnosis. I've also been on methotrexate which didn't really do much to help and also another drug I can't remember azathioprine which was so awful I only lasted a couple of weeks on it. I do take a very small dose of prednisone (2.5mg) in addition to the Benlysta and Plaquenil. I'm pretty stable. Just have a little bit of pain and fatigue to contend with overall. I'm feeling much better now that medicines are managed.

[martynxx in reply to ecough]

my name is martyn. I write on health for national newspapers. If you've been on Benlysta, I would be keen talk to you. I am planning a health feature for a national paper health page.

I'm on 07973-531933

[ladylou]

I'm on azathioprine,predniselone,cellcept, plaquinil so I'm hoping benlysta will work for me as had retuximab and it didn't..x

[miccika1 in reply to ladylou]

did you manage to get benlysta? if yes any positive or negative effects?

[Terrier_Lady]

I've been on Benlysta for a year this month. It has helped me trenedously. Unfortunately for me my SLE as progressed to the point that I'm pretty much disabled by it but the Belysta helps me to feel so much better. Before I felt like I needed to be admitted to the ER all the time. When I first started getting it I would have a little bit of headaches and nausea. Part of that is we live 2 hours away from my infusion center so the drive home was hard. But once my body adjusted I haven't really had any bad side effects and it has helped me a lot. I will get it and be very tired feeling for a couple days then it helps control my symptoms for the next couple weeks and then I too can feel that I need my next infusion. My rheumatologist has had much better results with it helping his lupus patients then he has had with methotrexate. He says the Benlysta has been more effective. I'm also on plaquenil, steroids, and NSAIDs. It can take a few months to really start feeling the difference of the Belynsta. Once mine became effective I felt better than I had in months. But then I went into a flare up and while the steroids and the Belynsta for it under control it seems to have made my disease progress. So my veins ended up bad enough that I got a port put in, in October. If the Benlysta works for you and they say anything about getting a port don't be afraid of it. Getting the port has made my infusions so my easier and less painful on my arms. I get my infusions every 3 wks and I couldn't imagine having to go without them now. Oh and I don't get any pretreatment meds with mine. They talked with me about the options, they can give you Tylenol and some places will pretreat you with benedryl in case you might have allergic reaction. But my ifusion center asked me if I wanted to get pretreatment or try it without. I went without and have always been fine not needing any of it. Hope it works wonders for you. Please feel free to ask any questions. Benlysta is the best treatment I've had for my lupus so far.

[martynxx in reply to Terrier_Lady]

my name is martyn. I write on health for national newspapers. If you've been on Benlysta, I would be keen talk to you. I am planning a health feature for a national paper health page.

I'm on 07973-531933

[martynxx]

my name is martyn. I write on health for national newspapers. If you've been on Benlysta, I would be keen talk to you. I am planning a health feature for a national paper health page.

I'm on 07973-531933

[ladylou in reply to martynxx]

Hi there what would you like to know about belimumab

[Paul_Howard Partner LUPUS UK]

Hi ladylou ,

If possible, would you be able to share your experiences of having Benlysta by completing our anonymous survey at surveymonkey.co.uk/r/SMCLUP... please?

Thank you.