Author Topic: Benlysta (Belimumab)  (Read 1304 times)

teresa

  • Guest
Benlysta (Belimumab)
« on: December 26, 2012, 05:57:05 PM »
Has anyone had the monthly Benlysta infusions yet?  good or bad reactions?  My next step is to get that approved and start.  I currently take plaquinel, methotrexate, prednisone, and already took Rituximab 5 times.  The rituximab stopped working.  In the last few months, I have had toxic reactions to imuran and 6 mercaptopurine.  so, I am told this is the last thing to try to help with symptoms and to decrease the steroids.  I am having lots of problems with the chronic steroids like insulin dependent diabetes and osteoperosis.

anita

  • Hero Member
  • *****
  • Posts: 2041
Re: Benlysta (Belimumab)
« Reply #1 on: December 26, 2012, 07:46:11 PM »
I don't see IVIG on your list of things you've tried.  It is known to be helpful for not only neuropathy related problems from Sjogren's, but of course the CVID.  Have you considered this?  If not, you might want to ask you doctor.  It's not a quick fix though.  You have to have a loading dose of 3-5 infusions, then it still takes several  months before you sometimes notice improvement.

Just a thought.

50 yr old SjS, APS w/strokes, Autonomic Neuropathy, PN, Nephrogenic DI, (PID) IgG def., Cushing's, Asthma, Gastroparesis.  Sero-neg w/+ lip biopsy.  Meds: IVIG & pre-meds, Arixtra, Aspirin, Plaquenil, Nitro, Cardizem, Imdur, Toprol XL, Domperidone, Nexium, Midodrine, Symbicort, Oxycontin, Zofran

rnathans

  • Sr. Member
  • ****
  • Posts: 360
Re: Benlysta (Belimumab)
« Reply #2 on: December 26, 2012, 08:32:28 PM »
I agree with Anita. If you have never been tried on IVIG it would be worth considering. What symptoms are most troubling and what kind of doctors are treating you?

teresa

  • Guest
Re: Benlysta (Belimumab)
« Reply #3 on: December 26, 2012, 09:10:03 PM »
Yes, I get IgG infusions weekly subQ for the CVID for the past 2 years. 

teresa

  • Guest
Re: Benlysta (Belimumab)
« Reply #4 on: December 26, 2012, 09:14:36 PM »
But my immunologist has just decided to decrease my dose based on my recent IgG labs.  I wonder if there is a difference in dosing for CVID vs Sjogren's?

anita

  • Hero Member
  • *****
  • Posts: 2041
Re: Benlysta (Belimumab)
« Reply #5 on: December 27, 2012, 07:42:00 AM »
I was talking about IVIG, not Sub Q injections...entirely different ballgame.  IVIG is given by IV (usually) monthly.

IVIG is used for CVID as well as neuro complications of Sjogren's (not Sjogren's by itself).
50 yr old SjS, APS w/strokes, Autonomic Neuropathy, PN, Nephrogenic DI, (PID) IgG def., Cushing's, Asthma, Gastroparesis.  Sero-neg w/+ lip biopsy.  Meds: IVIG & pre-meds, Arixtra, Aspirin, Plaquenil, Nitro, Cardizem, Imdur, Toprol XL, Domperidone, Nexium, Midodrine, Symbicort, Oxycontin, Zofran

anita

  • Hero Member
  • *****
  • Posts: 2041
Re: Benlysta (Belimumab)
« Reply #6 on: December 27, 2012, 07:46:49 AM »
Is Benlysta even approved for Sjogren's?  I didn't think so.
« Last Edit: December 27, 2012, 07:48:42 AM by anita »
50 yr old SjS, APS w/strokes, Autonomic Neuropathy, PN, Nephrogenic DI, (PID) IgG def., Cushing's, Asthma, Gastroparesis.  Sero-neg w/+ lip biopsy.  Meds: IVIG & pre-meds, Arixtra, Aspirin, Plaquenil, Nitro, Cardizem, Imdur, Toprol XL, Domperidone, Nexium, Midodrine, Symbicort, Oxycontin, Zofran

CMNK12

  • Hero Member
  • *****
  • Posts: 614
Re: Benlysta (Belimumab)
« Reply #7 on: December 27, 2012, 02:10:55 PM »
Would be curious to know if benlysta is approved yet? Clinical trials are being done currently for sjogrens and some are even completed but none of the data is published to my knowledge. CK

slccom

  • Hero Member
  • *****
  • Posts: 2764
  • Sharon,
Re: Benlysta (Belimumab)
« Reply #8 on: December 27, 2012, 02:34:34 PM »
I recall it being approved for MS.
Sharon
Sharon, 57-YO female, Sjogren's, depression, sicca, ataxia, hard of hearing, neuropathy,  high BP, arthritis, more. Restasis, pilocarpine, Wellbutrin, Lexapro, oxygen, arthrotec, HRT, plaquinel.

Styx

  • Hero Member
  • *****
  • Posts: 545
Re: Benlysta (Belimumab)
« Reply #9 on: December 27, 2012, 07:33:49 PM »
Hi Teresa, I remember you :) I was just reading our previous conversation.

First of all, there are tons more options, though virtually none that we have data for with Sjogren's.

Given your particular circumstances, I'd be willing to throw out the nuclear option: how about cyclophosphamide?

But there are tons more options. I've been less impressed with the data on Benlysta in any context. See if you can get someone to give you Bortezomib; that's an interesting drug but with little data on it.

At this point, people are going to be pulling things out of thin air, as I am here. Every path will be risky. I wish you the best!

Styx
« Last Edit: December 27, 2012, 07:35:22 PM by Styx »
Male in 20s with Sjogren's (sicca pretty much everywhere).
Severe upper and lower respiratory symptoms unresponsive to corticosteroids & MTX. AZA fixed that thankfully, but the sicca continues to progress :| though RTX has helped considerably.
Mild Crohn's disease that I don't even notice anymore.

teresa

  • Guest
Re: Benlysta (Belimumab)
« Reply #10 on: December 27, 2012, 07:38:55 PM »
I get weekly IgG subq infusions, not injections.  I reacted badly to the IV IgG- 2 different brands.  The subQ infusions are weekly and use a lower dosage.  I use 2 pumps and 6 different sites at once.  It also helps keep the IgG to stay at a more even level than when you get a monthly infusion and get low right before the infusion.  I really like the subQ infusions alot better than the IV infusions, but you can only get the subQ infusions if you can't tolerate the IV infusions.

teresa

  • Guest
Re: Benlysta (Belimumab)
« Reply #11 on: December 27, 2012, 07:43:43 PM »
My rheumy told me that the Benlysta went through some drug trials in Europe.  It is only currently approved for lupus here in the US.  He said they noticed a decrease in parotid swelling in Sjogren's patients.  I also read that it has helped some people decrease their steroid doses.  Those are some of my main problems.   He also said it would probably take some time to get it approved.
 I am not sure why they haven't tried cyclophosphamide.  One rheumatologist mentioned it once, but said he had never used it and he sent me to another rheumatologist who didn't suggest it.  Does it help decrease steroid doses?

Styx

  • Hero Member
  • *****
  • Posts: 545
Re: Benlysta (Belimumab)
« Reply #12 on: December 27, 2012, 08:35:42 PM »
My rheumy told me that the Benlysta went through some drug trials in Europe.  It is only currently approved for lupus here in the US.  He said they noticed a decrease in parotid swelling in Sjogren's patients. 


The data from that study have not yet been published AFAIK so I'm jealous if he got an early look :)

I am not sure why they haven't tried cyclophosphamide.  One rheumatologist mentioned it once, but said he had never used it and he sent me to another rheumatologist who didn't suggest it.  Does it help decrease steroid doses?

It's quite dangerous and very carcinogenic, though it is very potent. I'd be surprised if you could get someone to prescribe it for you. With that said, there are a few old, low-quality studies in the literature where it has led to decreased parotid swelling.

If I were in your situation, I would try for bortezomib, but there are no guarantees. If your doc has the unpublished data on Benlysta and it is positive, then that is definitely something to look into.  I certainly hope something works.

Styx

Male in 20s with Sjogren's (sicca pretty much everywhere).
Severe upper and lower respiratory symptoms unresponsive to corticosteroids & MTX. AZA fixed that thankfully, but the sicca continues to progress :| though RTX has helped considerably.
Mild Crohn's disease that I don't even notice anymore.

Styx

  • Hero Member
  • *****
  • Posts: 545
Re: Benlysta (Belimumab)
« Reply #13 on: December 27, 2012, 08:37:55 PM »
Also, when you say the rituximab stopped working, can you elaborate? Did it work for awhile?

Styx
Male in 20s with Sjogren's (sicca pretty much everywhere).
Severe upper and lower respiratory symptoms unresponsive to corticosteroids & MTX. AZA fixed that thankfully, but the sicca continues to progress :| though RTX has helped considerably.
Mild Crohn's disease that I don't even notice anymore.

teresa

  • Guest
Re: Benlysta (Belimumab)
« Reply #14 on: December 27, 2012, 09:08:05 PM »
can you tell me more about bortezomib?
When I took the rituximab, I noticed some decreased parotid swelling, although short-lived.  However, I was able to decrease my prednisone from about 12mg down to 8mg over the course of 2 yrs (rituxan 2 infusions 2 weeks apart every 6 months)- had 4 in a row and 1 about 3 yrs ago.   
 With recent hospitalizations (for drug reactions to imuran and mercaptopurine) and multiple flares, I am up to 20mg daily of prednisone for the past month.  I have never taken that much before.