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lupusnewbie
Regular Member


Date Joined Aug 2011
Total Posts : 52
   Posted 8/20/2011 4:54 PM (GMT -6)   
Hi all,
Has anyone tried Benlysta, the newly approved drug for Lupus treatment??  I have SLE and I have an appointment with my hematologist on September 6th.  I was going to ask him about it.  If you have tried it or are on it...please post???   Thanks!

aimsgirl16
Forum Moderator


Date Joined Jun 2008
Total Posts : 1470
   Posted 8/22/2011 11:44 AM (GMT -6)   
Hey there!!! If you would like to email me, i have some information you might find useful. You can find my email by clicking on my name in blue to the left side of this post.
Amy
Lupus Moderater
Prednisone, carvedilol, Eliphos, toresmide, sodium bicarbonate, Vit D 50000 IU weekly
PRN: hydrocodone, Ambien or Ambien CR, Flexeril, Ultram,

If God brings you to it, he will get you through it!!

lupusnewbie
Regular Member


Date Joined Aug 2011
Total Posts : 52
   Posted 8/22/2011 1:19 PM (GMT -6)   
Thanks guys. I am not too worried about the germs as much as I am about my strength and endurance! I have not been away from home since my diagnosis. As for germs, my two grand babies..7 months and 2-1/2 will be here on Wednesday, visiting for a week. Right this minute, neither have colds or are sick. They are coming just in time for a hurricane! Any germs they bring will stay in the house, shuttered up! As you know, the "crashes" come without warning. We will be on a cruise ship, and if I feel sick, we can always stay on board. We booked a few short tours, and mostly, we'll be on the on again/off again trolleys where I can just stay on until I feel up to getting off. We are also packing ski jackets, sweaters, hats, etc. We brought them all with us when we moved to Florida I am having basic labs on September 6th, at my hematologist's office, and if anything really bad shows up, he won't let me go. He did however, offer to take MY place on the cruise! LOL.

aimsgirl16
Forum Moderator


Date Joined Jun 2008
Total Posts : 1470
   Posted 8/22/2011 1:41 PM (GMT -6)   
Well...always know, i will be more than willing to also fill in a spot on the cruise ;-)!!
Amy
Lupus Moderater
Cytoxan, Orencia, Septra, Prednisone, carvedilol, heparin, Eliphos, toresmide, sodium bicarbonate, Vit D 50000 IU weekly
PRN: hydrocodone, Ambien or Ambien CR, Flexeril, Ultram,

If God brings you to it, he will get you through it!!

lupusnewbie
Regular Member


Date Joined Aug 2011
Total Posts : 52
   Posted 8/22/2011 2:09 PM (GMT -6)   
You'll have to get in line...my hematologist already has DIBBS on my spot...but you are probably MUCH prettier than he is..so I will let my husband choose! :-)

Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1342
   Posted 8/22/2011 8:18 PM (GMT -6)   
2 members of our local lupus support group are currently being treated with benlysta and have favorable results so far.  It helps some but is untested for those with kidney, heart and some other complications.
 
 
Some doctors are not up to speed with it yet so you need to have a doc who is really up to date and progressive.
 
Bill

lupusnewbie
Regular Member


Date Joined Aug 2011
Total Posts : 52
   Posted 8/23/2011 5:47 AM (GMT -6)   
Bill:
I'll check with my hematologist and let you know what his thoughts are. He said some of the side effects could be tough.

Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1342
   Posted 8/23/2011 7:10 AM (GMT -6)   
Keep in mind that any treatments have potentially bad side effects but that not everyone gets them.  My 2 friends have been ok since getting benlysta and have seen a reduction in symptoms.
 
Bill

Earnest
New Member


Date Joined Aug 2011
Total Posts : 15
   Posted 8/24/2011 7:07 PM (GMT -6)   
Hi lupusnewbie! I suggest you email Amy if you have not done so. She shared the same info with me and it was a big help. I am going for my 4th infusion of Benlysta on Sept 6th. The third treatment wasn't as bad as the first 2. I am referring to the after effects of infusion. I have SLE for 21 years with Sjogren's syndrome, GERD, osteopenia, severe deformities of my fingers and now my toes. I'm on 7 mg prednisone, 200 mg plaquenil, 0.6 mg colchicine, 30 mg Dexilant, 35 mg Atelvia. It's good to hear other people's experience with it. It will be a while before I will feel a difference. Of course I wish it will come soon. Good luck to you.

advocate7
New Member


Date Joined Sep 2012
Total Posts : 3
   Posted 9/17/2012 2:54 PM (GMT -6)   
Hi, yes I have tried Benlysta for 4 months, and I will tell you it really helped my mobility, At night I would have trouble with my legs and have to use a cane sometimes, with the benlysta infusion I didn't need the cane. 
 
However, there is a concern with the medication Benlysta, I still had my infalmation in my chest and my immune system was very weak, one of the side effects with benlysta is a weakend ammune system and you see with Lupus you already have a weak immune system  I gained 18 pounds during the 4 months of infusions of benlysta and was depleated of potassum.  If you do try the drug its important to check your blood to see if you have been depleted of anything in your body.  Also, make sure your immune system of ok because with a even weaker immune system I found myself getting colds, urine tract infections etc. The weight gain is a problem I gained so fast.   Just pay attention to these things because they can lead to other problems.   
 
Sincerely,
 
advocate
  

Earnest
New Member


Date Joined Aug 2011
Total Posts : 15
   Posted 9/17/2012 7:09 PM (GMT -6)   
I tried Benlysta for 6 months but had to stop. I developed infections and received antibiotics for treatment. My lupus flared. By the end of the 3rd week post infusion I felt I was running out of gas and needed a refill. My chemistries did not improve. One of them got worse. My energy was not consistent. Felt very tired for 1st few days. It just wasn't for me. Hopefully it works for others.

oreo11
Regular Member


Date Joined Feb 2011
Total Posts : 399
   Posted 9/17/2012 8:44 PM (GMT -6)   
Hi!
 
I just had my fourth Benlysta treatment and I have been feeling pretty darned great....the best I have felt in a really long time.  I am also reducing the Prednisone I had been taking.  Currently at 5 mg. per day.  The hope is that I can get off of it completely.  So far no problems with Benlysta except a little insomnia the first week or so.  It is amazing to not feel stiff and sore every morning and to not get so fatigued with every little thing that I do. It has even helped with the gut inflammation that I tend to get....I have put a little weight back on, which is a surprise!  I have even been able to get back to my exercise routine and hiking, which is something I have missed for a while.  I know that some people have had some serious reactions to this drug and it does not seem to be for everyone.  I would certainly talk to my health care professionals if I was looking for an alternative to some of the other Lupus meds.
 
Laura

advocate7
New Member


Date Joined Sep 2012
Total Posts : 3
   Posted 9/18/2012 7:38 AM (GMT -6)   
Laura please watch the weight gain pay attention to it Reason: it can bring on more problems than you disire. I gained 18 pounds during the 4 months of infusions and i was not eating heavy andI was walking etc. My Doctor did advisie me if I was going to continue Benlysta I would really need to consider seeing a weight loss Doctor to monitor the weight that some people gain from Benlysta. just concerned and im glad your doing well on Benlysta.

advocate7
New Member


Date Joined Sep 2012
Total Posts : 3
   Posted 9/18/2012 7:48 AM (GMT -6)   
Ernest what you say you experienced with Benlysta so did I.   there is one other thing I did not mention my stomach was really messed up I had pain and experienced burning pain in my stomach.  and i also had hair loss. Benlysta has to be premixed right before the infusion and that was a concern for me because humans are human and I remember my infusion bag looking different from the other bags of Benlysta I had had.  I think it it may have been mixed to strong I will never know. However, I became very weak and had infections. 

oreo11
Regular Member


Date Joined Feb 2011
Total Posts : 399
   Posted 9/18/2012 8:32 PM (GMT -6)   
I had no idea that a possible side effect was weight gain.  I will definitely keep an eye on that.  I just assumed since I was no longer experiencing the gut inflammation (which had been causing weight loss due to food passing right through my system), that I was just gaining back some of the weight I had lost.  Thanks for the heads-up!   That is why I love this chat.....I get so much feedback from all of you!!!
 
Laura

Melissa D.
Regular Member


Date Joined Aug 2008
Total Posts : 448
   Posted 11/12/2013 9:34 AM (GMT -6)   
Hi Judy,


Benlysta does take several infusions to begin to respond to the new treatment from my experience, generally around 2 months to see how your body will accept it. Benylsta has been a God send for me, I've been taking it for 27 months; that said like many meds it does come with it's own set of side affects and reactions. In the beginning the infusions hit me extremely hard, my husband drives me 3 hrs to and 3 hrs from each infusion. I would sleep the entire way each time I was just so drained. Then after my infusion I literally could not function for 3 to 4 days. I had many reactions while they were administering the infusion which cause them to have to give me double the amount of steroids and benedryl than the average person. Each time they would have to stop my infusion until the hives went down and the feeling my throat was going to close went away, there have been times it took nearly 5 hrs to receive my infusion, doesn't make it convenient when your travel from so far (we go down and back in one day normally).

With each monthly infusion I began having more and more good days, so the issues the day of the treatment are worth me going through. I now even sit up most of the trip and actually do a little shopping while we're in the city if I'm having a good day. I get away with a lot more at my favorite stores too because my husband is so happy to see me up and about... Haha!

Feel free to message me with any questions you have. I know lupus itself can be lonely and my experience has been even lonelier since beginning Benlysta because it is so new and not everyone is on it like they are plaquenil for instance. I had to have a chest port put in 2 weeks ago because the veins in my arms have given out (it's not just from the Benlysta for me, I've had many many blood transfusions, IVs, etc and I have small veins). Going through the port being put in has been very very hard because I don't have anyone to talk to about it and I go for my first infusion using the chest port next week.

Best of luck and I truly hope you feel better and better with each infusion!

Hugs

Melissa

Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 11/13/2013 5:36 PM (GMT -6)   
Melissa:

I'm glad to hear the Benlysta is working so well for you. I tried it and it wasn't doing a thing for me so I had to stop the infusions. Of course, I've got several other things going on with me besides my lupus.

I have had 3 chest ports and currently have a port in my right arm just above my elbow. I like you have bad veins, being on high dose steroids for almost 13 years really has taken a toll on them too. Now, with my LGL leukemia I need it for my blood transfusions and potential IV chemotherapy drugs.

I just wanted to tell you it's going to go just fine with your infusion with your port. How long ago was it placed? It may be a bit tender at first with the first few accesses but you'll develop scar tissue where they place the Huber needle. Eventually, you'll not feel a thing, make sure that ONLY nurses or staff that are certified access your port. It needs to be accessed under sterile conditions period.

If you have any questions at all, please ask away. My first port was place in August 2004. I've even gone thru 2 ports with my line infected and know the drill for trying to clear an infection from the line. Don't worry things will be just fine.

Hugs,
Barbara
DX- RA, Lupus, Fibro, LGL Leukemia, Pulmonary Hypertension, Bells Palsy, Gastroparsis, Blood Clots, Glaucoma, Chronic Pericarditis & Pleurisy, Severe Anemia. Way to many medications to list.

Melissa D.
Regular Member


Date Joined Aug 2008
Total Posts : 448
   Posted 11/13/2013 7:51 PM (GMT -6)   
Barbara,

Thank you so much for you're reply, it really helps being reassured by folks who can relate to my current situation. I'm not sure how long the port will have to be in place, the radiologist said "until I was cured or no longer taking treatments. " of course I just laughed and replied "did you read my chart? I have lupus, there is no cure at present unfortunately. And unless I go into remission or the Benlysta stops working the infusions will be on going." He stated the port will last a life time if needed, which I am grateful for on one hand, but pray I don't need it forever.

I hate that you've been hit so hard medically Barbara, you are one amazingly strong woman. Thank you for taking time out of your day to share your experience.

God Bless You,

Melissa

Tgo
New Member


Date Joined Dec 2013
Total Posts : 9
   Posted 12/16/2013 8:53 PM (GMT -6)   
Hello,
I'm about to have my first Benlysta infusion this week. My major question that I can't find an answer too is how do I take my other medicines, specifically my methotrexate shot. Right now, I take my metho shot on Wednesday nights, and am a hot chemo mess for at least two days, if not four. Any tips?

Melissa D.
Regular Member


Date Joined Aug 2008
Total Posts : 448
   Posted 12/17/2013 7:10 AM (GMT -6)   
HiTgo,

I am on Benlysta. Actually headed for an infusion this afternoon. I also take cellcept, which is another form of immunosuppressant or chemo if you will that is a step up from metho. I have continued both for over two years now and it seems to be working quite well.

My son also has lupus and is on weekly metho shots, the shots do a number to his GI tract but really help otherwise so our Rheumy has him alternate by putting the metho into a glass of juice one week and injecting the next. Please don't do this without speaking to your doctor first. It has really helped my son get some relief from the GI issues.

I don't know where you're going for your infusion (I go directly to my rhuemies ofc, they have an infusion center there) but if it is at your doctors ofc ask the infusion nurse to have the doctor stop by and ask him/her about your metho and explain your concerns. This will put you at ease and provide you with the answers needed going forward.

Best of luck to you today and always!

Melissa

Tgo
New Member


Date Joined Dec 2013
Total Posts : 9
   Posted 12/17/2013 10:23 AM (GMT -6)   
Thanks Melissa!
I will be going to my rheumatologist office for the infusions, because they have a room as well. I will ask about putting the medicine in juice. I asked about splitting up the dose and my doctor advised against it. It's not really my GI tract, but an overall sick flu like naesuea, dry heaves, hot flashes/fever, and totally worn out for a few days after the shot. I'm 29, have had the diagnosis for a year now, and went from no big deal hives, ana counts, and butterfly to fully attacking my joints have a flare that lasted about four months and made it so I couldn't care for myself. My husband (he is in the air force) and I are stationed in England, and my mother had to come stay with us cause I was so sick. I was getting ok care there, but the disease got so bad, and they were not aggressive enough. Me hubs deployed and I went home to Florida and am getting pretty awesome care! I feel like I'm not going to die anymore, which is a pretty great feeling! I have very high hopes for the benlysta, and hope that I can decrease the methotrexate. I'm down to 10 prednisone, and am hoping to get off completely as well. I will have my first three start up infusions and then one monthly infusion before going back to England where I will set up my monthly infusions there. That's the plan at least...
What the saying? Humans plan... God laugh!

It's so encouraging the hear that the medicine is working for you and your son!

Melissa D.
Regular Member


Date Joined Aug 2008
Total Posts : 448
   Posted 12/17/2013 8:53 PM (GMT -6)   
Tgo

I hope your infusion went well and your doc was able to relieve your concerns about methotrexate as well. Sounds like you've had a rough year, thank you and your husband for your service to our country. It's hard enough being a spouse of a military person and being away from home, being sick mad having lupus on top of that has to be overwhelming, I'm so sorry.

Please let me know if you have any questions, I'm here to help where I can.

Hugs


Mother of 2 beautiful adult children and one amazing daughter in law, lupus SLE since 1997, sjorgrens, raynauds. My worst nightmare was imagined when my son was diagnosed with RA and lupus SLE while in college. I take a slew of meds to many to mention, am on Benlysta infusions. I try to live each day with a positive outlook and count my blessings.

Tgo
New Member


Date Joined Dec 2013
Total Posts : 9
   Posted 12/21/2013 11:09 AM (GMT -6)   
Thanks Melissa! I had my first dose yesterday, and it went off with out a hitch. I don't feel so hot today, so I'm taking it easy. I have joined a Facebook group called benlysta buddies, and have had lots of questions answered and it feels like a good support system. My husband and I thank you for your thank you! If that makes sense. :)
I hope you have a happy holiday! And you and your son, have a semi pain free day! :)

Melissa D.
Regular Member


Date Joined Aug 2008
Total Posts : 448
   Posted 12/22/2013 1:27 PM (GMT -6)   
Glad to hear everything went well Tgo! Thank you for your well wishes! Merry Christmas to you and your husband, wishing you a pain free holiday as well!


Mother of 2 beautiful adult children and one amazing daughter in law, lupus SLE since 1997, sjorgrens, raynauds. My worst nightmare was imagined when my son was diagnosed with RA and lupus SLE while in college. I take a slew of meds to many to mention, am on Benlysta infusions. I try to live each day with a positive outlook and count my blessings.

Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 12/22/2013 11:15 PM (GMT -6)   
Melissa and Tgo:

Melissa have you had your infusion yet? If so how did it go for you? Tgo how are you feeling since your infusion? I go to Walter Reed National Military Medical Center in Bethesda, MD.

My hubby served almost 22 years on active duty, he did the the Iraq and Afghanistan thing, so I really feel for you. I hope that you're doing okay and feeling well.

Hang in there ladies I hope that you enjoy Christmas and feel well thru the holidays.

Hugs,
Barbara
DX- RA, Lupus, Fibro, LGL Leukemia, Obstructive & Central Sleep Apnea, Pulmonary Hypertension, Bells Palsy, Gastroparsis, Blood Clots, Glaucoma, Chronic Pericarditis & Pleurisy, Severe Anemia. Way to many medications to list.
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