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Discussion Starter #1
Hi guys, following on from my nephritis diagnosis, I've been offered a chance to trial Benulab. I know nothing of this medication so am simultaneously a bit apprehensive and positive. It's either this or myclofenate.

Is anyone else on here trialling Benulab? If so, could you please give me your thoughts on it? What do you have to do for the trial? Have you seen any positive gains? What are the negative? Side effects etc? Anything, any information, any advice is appreciated to help me decide whether I should go for it or not.

I have a very stressful and pressured job, so if there are a lot of side effects I risk the chance of having my back-side kicked out of the door so need to be very careful :(
 

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Discussion Starter #4
Thanks guys. I didn't realise Belimumab (I did get the spelling wrong above) was Benlysta.

And just read your Link Mark. The side-effects are very worrying but I'll discuss these when I have my appointment.

So so torn.........
 

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Benlysta is not normally used for the kidneys. On their own website they say it is not known if it is helpful in such cases. That doesn't mean it doesn't in some patients. Is this going to be an official trial or is the doctor prescribing it?

Mycophenolate has already been through trials. It has proven to do as well as Cytoxan without all the side effects. It sounds like you and your doctor have a lot to discuss.

Take care,
Lazylegs
 

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Benlysta has been approved for once a week injection.
http://www.lupus.org/research-news/...lysta-as-a-weekly-self-administered-injection

http://www.resources.lupus.org/entry/what-you-need-to-know-about-benlysta

Each person with lupus is unique, and BENLYSTA will not be an option for everyone. You will need to discuss with your doctor if BENLYSTA may be an appropriate treatment option for you.
BENLYSTA is approved for the treatment of adult patients with active, autoantibody-positive systemic lupus erythematosus (SLE) who are receiving standard therapy.

The label for BENLYSTA includes the following limitations of use: The efficacy of BENLYSTA has not been evaluated in patients with severe active lupus nephritis or severe active central nervous system lupus, and has not been studied in combination with other biologics or intravenous cyclophosphamide. Use of BENLYSTA is therefore not recommended in these situations.
Hope this helps.
Lyn
 

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Discussion Starter #8
Thanks for the info guys.

Lazy legs, I was supposed to go and see The Royal Free today but had to rebook appointment. Unfortunately their admin section is atrocious. I've emailed and called them countless times to rebook the appointment, to call me, to email me... to do anything to rebook the appointment but I haven't heard anything back. Doesn't fill me with confidence! I'm going to keep trying today. Fingers crossed.

I read the links above and Benlysta doesn't seem to be too good for kidney involvement. I don't have sever nephritis. I've been told it's "moderate". But I'm still surprised I've been asked to do the trial! My rhumy is incredibly frustrated as she really wants me to go on one med or the other asap. Its understandable her frustration. If I don't hear anything by close of play monday I'm going to say heck with Benlysta and go onto Mycophenolate.
 

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Discussion Starter #9
Guys a very quick question - is there anyone on here who has nephritis and IS on the Benlysta trial?

I have my meeting for the trial tomorrow and just wanted to know so I'm prepared with my questions.
 

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Discussion Starter #11
Good morning guys, apologies for my delayed reply. I returned to work after 2 weeks on leave and the manic work load and stress has multiplied a hundred fold!

I went to The Royal Free last week to discuss the Benlysta trial. The nephrologist was absolutely brilliant. She knew almost my entire Lupus history and discussed it with me in detail. She told me my kidney involvement currently is at Stage 5 (which actually is less severe than Stage 4) and therefore she did not think the trial would be suitable for me as the current meds seem to be working for the non kidney side of things. But she did say that if I did wish to trial it I could do so and in order to treat the nephritis I'd also need to go on to Cytoxan (or something similar sounding). After a bit of thought, I decided to stick with Mycophenolate as she said this med has been trialled and she was almost certain it would reduce my nephritis.

Unfortunately, the Mycophenolate is not very good as joint pain so I'll have to wait and see how bad that gets when I begin to reduce my prednisolone.

I started my Mycophenolate yesterday. Starting at 500mg for 3 days and then gradually going up to 2000mg per day. Not looking forward to the almost definite side-effects!!! But let's see how it goes :)
 

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Good luck with the Mycophenolate. Hopefully the side effects won't be too bad for you. Who knows maybe this time it will help your joints like it does for me.

Take care,
Lazylegs
 

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Discussion Starter #13
Thanks lazy legs. How long did it take for the Mycophenolate to start working on your kidneys?

Also, can I take it all at once with all my other meds - prednisolone, plaquenil and vitamin d? Or should I play it safe and take it on its own?
 

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I take it for neurological symptoms and joint pain. My kidneys are still in good shape. I was told it takes about 4 weeks to kick in. The directions say to take the Mycophenolate on and empty stomach unless your doctor says otherwise.
 

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Discussion Starter #15
Thanks LL. Good to hear it foes work with joint pain. Really not looking forward to coming off the steroids (apart from hopefully getting my face back and stomach down).

And a quick question to those who are taking it with plaquenil and prednisolone - can you take myco with all of them at once? Right now I'm spreading it all out and trying to remember to take it all is difficult when you have a hundred things to do, are stressed and have a bad memory to begin with! Lol
 

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Discussion Starter #16
Hi guys, apologies for no recent updates. Alas, it's the same old unfortunate excuse - an absolutely manic and stressful work-life :-( (I really do need to find a less stressful job)!

Anyway, I've been on Myco for about a month now (I think). Fortunately I didn't experience any vomiting or diarrhoea (spelling???). Unfortunately, it's not been as good on the joints as the metho, as was expected. But I'm getting by and more so hoping the myco is having a positive effect on the kidneys. I'll be seeing my rhumy and nephro in a couple of weeks time, hopefully for some good news.
 

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Mycophenalote takes about 4 weeks to kick in so hopefully you will begin to see some improvement soon. The normal protocol would be to start you on a low dose to see how you tolerate it then increase it as needed. Your rheumy will most likely discuss any changes with you at your next appointment. Good luck.

Take care,
Lazylegs
 

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Discussion Starter #18
Thanks Lazylegs. Yup, they started me on low dose and gradually increased it. Currently on 3 in the morning and 2 in the evening. Been on it for almost 2 months now I think. I'm seeing my Rhumy and Nephro in 2 weeks so fingers crossed :)
 

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Hiya.. I am on Mycophenalate...1000gs in the morning and another 1000gs at night. In the morning I take before food but not with my pred and plaquenil...which I have together after my breakfast. My Rheumy wasn't bothered if I took on an empty stomach or not...so initially I didn't as was a bit sensitive to it...however now fine on an empty stomach.

I have done well on Myco...been on for years now...but still struggle to get lower than 5mgs pred.... My lung dr told me not to go lower ...to protect my lungs...which was a bit disappointing...however I have a good ratio of pain free life on these meds so fairly happy to not rock the boat...sometimes you still get that...ummmm but what if I try to reduce something ? anything? everything? but that is the devil on my shoulder !!
My joint pain has been much improved too with everything being calmer.....hope it is a good med for you Surferboy :0)
 

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Discussion Starter #20
Haha! I know exactly what you mean by "immmmmmm, but what if........."

I'm wondering just how much side-effects there would be from 5mg of pred for life! I personally struggle to get below 10mg these days! Currently on 15mg but I know the consultants plans are to reduce this.
 
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