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Benulab trial

Discussion in 'Living with lupus' started by Surferboy, Jul 31, 2017.

  1. Surferboy

    Surferboy Registered

    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 :(
     
  2. mark176

    mark176 Active Member

    Hi

    Im not on it but this may help it has videos wtc

    http://www.benlysta.com/about/how-to-use.html

    I have heard that some people are allergic to it in rare cases. I think thats the main one. Then again some people are allergic to plaquenil. I think you shpuld give it a trial.

    Kind regards
    Mark
     
  3. keebler

    keebler Moderator

  4. Surferboy

    Surferboy Registered

    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.........
     
  5. lazylegs

    lazylegs Moderator

    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
     
  6. keebler

    keebler Moderator

    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

    Hope this helps.
    Lyn
     
    Lupusdude and wolf1 like this.
  7. Jessica1

    Jessica1 Moderator

    Lupusdude likes this.
  8. Surferboy

    Surferboy Registered

    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.
     
    Lupusdude likes this.
  9. Surferboy

    Surferboy Registered

    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.
     
  10. keebler

    keebler Moderator

    Not that I know of. Good luck tomorrow!
     
  11. Surferboy

    Surferboy Registered

    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 :)
     
  12. lazylegs

    lazylegs Moderator

    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
     
    Surferboy likes this.
  13. Surferboy

    Surferboy Registered

    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?
     
  14. lazylegs

    lazylegs Moderator

    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.
     
  15. Surferboy

    Surferboy Registered

    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
     
  16. Surferboy

    Surferboy Registered

    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.
     
  17. lazylegs

    lazylegs Moderator

    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
     
    Surferboy likes this.
  18. Surferboy

    Surferboy Registered

    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 :)
     
  19. x_claire_x

    x_claire_x Moderator

    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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  20. Surferboy

    Surferboy Registered

    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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