Benlysta Blues

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oreo11
Regular Member


Date Joined Feb 2011
Total Posts : 399
   Posted 2/24/2013 9:32 PM (GMT -6)   
Hi Everyone,
 
      So here it is, 5 days before my next treatment and I am miserable.  I started to feel poorly about 4 days ago.  Last week I managed to catch one of the bugs that was floating around school and I caught the cold from hell.  Thankfully, it only lasted 6 days!!!  Since then, the Lupus has been rearing its ugly head and I am not only physically drained, but emotionally drained.  The Benlysta does not hold me for the whole month and that is extremely frustrating.  Every joint hurts, my brain will not work (not good for a teacher :) and the fatigue is making it difficult to get anything done.  I just want to crawl into a hole and hide from the world.  I did put a call to my Rheumy, but she has not called back.....and if it's anything like last time, I will have to wait until tomorrow.  I have been so tempted just to take 10 mg of Prednisone just to feel better, but I haven't.  I will wait until I speak with her.  This is just wearing me out!!!!!  Tylenol Arthritis barely helps and the other pain med just puts me to sleep.  Neither does much to reduce the inflammation, which is really what I need right now.  Thanks for letting me vent!!
 
Laura

Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 2/24/2013 9:46 PM (GMT -6)   
Laura, I'm sorry you're feeling so bad (((hugs))). I'm sure it's frustrating that you can't go a whole month, I hope your Rhuemy has something to offer to you.

I did 5 infusions and the Benylsta, they did nothing for me at all, except make me a nervous wreck and very depressed. So my Rhuemy stopped my infusions. The big factor was that Benylsta attacks the "B" cells.

Well, in 2007 is managed to get 2 infusions of Rituxan in me and it depleted my "B" cell counts, which it was suppose to do. However, since 2007 my body hasn't made any new "B" cells, so basically the Benylsta has nothing to work against.

Now the questions are why no "B" cells and why is my "T" cell count so low. That's what the research Drs at NIH hope to find out.

If you find that you're not improving you may want to ask your Rhuemy to check your "B" cell counts. I hope they get you feeling better real soon.

Hugs,
Barbara

oreo11
Regular Member


Date Joined Feb 2011
Total Posts : 399
   Posted 2/24/2013 10:41 PM (GMT -6)   
Hi Barbara,

I had just gotten off of the computer to do some knee exercises and I just about died. The stiffness and pain in my body is excruciating. I have not felt this way in some time now. If I am this miserable tomorrow, I will take that low dose of 10 mg to start with. I know my rheumy will support me. I had so much hope for the Benlysta, but it just does not hold me. Thanks for the idea about the B cells. I see her next week, and I definitely have a ton of questions. As always, thanks for your support. I do hope you are feeling better, too. :)

Laura

Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 2/25/2013 8:05 PM (GMT -6)   
Hey Laura:

Sorry that you're feeling so bad. Did you take the 10mg of pred today? I hope it helps with your joint pain, I totally understand how you feel.

As for me, I'm feeling worse that's for sure. It's now been 10 days since cutting back my steroids by 5mgs and I can barely move. I had to force myself to get out of bed this morning. I had to take my 24 hr urine into the lab and have some blood work done. The drugs I've been on for my warts has started my kidneys to have issues.

With my broken ribs and the joint pain that I now have, I'm miserable. Quite honestly, I just don't want to fight this stupid disease anymore. I'm truly at the end of my rope. I'm not sure HOW I will continue on, the thought of never leaving my bed sounds very appealing right now.

Let us know how things go with your Rheumy, I sure hope you start feeling better soon.

Hugs,
Barbara

bluejeans
Regular Member


Date Joined Dec 2012
Total Posts : 269
   Posted 2/25/2013 8:25 PM (GMT -6)   
Barbara
I was cutting a 5mg predisone in half trying to take my steroid dose down and still hurting bad.  My rheumy  told  me I was trying to go down to fast. She gave me a prescription for 1 mg predisone and wants men to go down a mg a month, stopping when I hurt and stay there awhile.  I am having to stop now because I am hurting bad today. storms coming through.  Hope you both feel better.  I see my rheumy Wed., first time since the Rituxan infusions. 
Post lymphoma, Spleenectomy, Lupus, Sjorgrens, RA, Anti-phosphoid syndrome, Fibromyalgia, GERD, short bowel syndrome, scolisis, arthritis of spine, spondylosis, splondylesis, DDD,DJD

Faith in God, the love of my family and a good attitude keeps me going.

Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 2/25/2013 8:55 PM (GMT -6)   
Thanks for mentioning about the 1mg tabs of pred. Unfortunately, I'm actually on medrol which only come in 4mg tabs, 4mg of medrol = 5mg of pred. If I were to break the 4's in half it would be 2mg. I know it's fast but I've got broken ribs, and my left hip looks very bad, they say my rib cage bones are so thin it's dangerous and they are worried about my hip, I'm praying I'm not facing a hip replacement.

I've been on high dose steroids almost 12 yrs now, they are attempting to counteract some serious side effects. My Dr acknowledges that I'll never get completely off steroids, but they hope to get me down to a more reasonable level. With my chronic pericarditis I'm sure it won't be long before I'll be having issues since going down on the steroids.

I'm sorry that you can't get any lower, I hope the Rituxan helps you. I only manage to get 2 doses in me before my platelets dropped really bad. It also totally wiped out my B cell counts, and my body has never recovered from it. Mind you I've got a serious problem with my immune system, which the Dr's at NIH are researching, but they think I've had the problem since childhood.

When is you next infusion? I really hope it works and that you soon can go down on your steroids.

Hugs,
Barbara

oreo11
Regular Member


Date Joined Feb 2011
Total Posts : 399
   Posted 2/26/2013 11:25 PM (GMT -6)   
Hi All,
 
     I did take 10 mg. of Prednisone (and have every day since Monday) and it has sure helped.  My energy level is back and my joints are less achy.  I can even think again, which was important to me today....I was involved in a contentious meeting between school, parents and lawyers.  I did take two Tylenol Arthritis because I am also having some bilateral knee pain that is making it difficult to go up and down to stairs.  I definitely am feeling my 60 years.  The chilly weather up here is not helping!!!!  I did not know about the conversion of medrol to pred.  They give me 60 mg of Solu-Medrol before the infusion, and my gut feeling is that it has a significant affect on my feeling so good the day after treatment. 
 
     Barbara-Was the Benlysta holding you for the entire month.  I have read and heard that some people are not getting the full benefit for the entire month.  Has anyone asked why?  I plan on asking both the infusion nurse and my Rheumy when I see her next week.
 
Thanks for all of your support!!!!  It really helps!
 
Laura

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7723
   Posted 2/27/2013 8:35 AM (GMT -6)   
Nope, Benlysta was not giving Barbara any relief at all!
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING LUPUS & LUPUS RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde

oreo11
Regular Member


Date Joined Feb 2011
Total Posts : 399
   Posted 2/27/2013 8:52 PM (GMT -6)   
Thanks Lynwood.  I wish the Benlysta would give me the relief that I need.  Like I ssaid, it helps for about three weeks.....sometimes a little less.
 
Laura
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