stage 3 severe RA and Rituxan | Arthritis Information

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Hello everyone,

I waiting to start rituxan.  I just found out my insurance approved it 70/30, which doesn't say much, my co-pay is still huge and more than I can afford, but some help is better than none.
I am wondering if you are being treated by rituxan or have been and do you mind sharing your expeirence.  I am especially interested in those with difficult to treat severe RA.  I have failed many RA meds so really interested in experiences with that type of RA.  The docs also talked about a new medication coming out this fall.  I have been on the phone trying to reach them.  A name was not mentioned but if it does not require an infusion like rituxan and less expensive, i would rather try it instead.
thanks for your input.
 
S-
Here is an RA video link you may be interested in or show to your family members.
 
http://www.youtube.com/watch?v=NqyB-cTxvs8
 
hang in there.  take care.
 
S--
Hi Shelley
I'm in the same boat you are on the meds.  I started rituxan a last year.  I'll be doing my 4th set of infusions starting next week.  while i haven't experienced a huge change I have stabalized.  I still have inflammation but flares are minimal. I've had no side effects but I never have side effects to anything so for me thats not a suprise 

Shelly, I am not on it but want to wish you the best. Many of these Meds are serious %$#$#@. I'm sure someone here can help calm some of your fears....

I think it is Rituxin my RD wants me on. If my medicare will pay for it. I will let you know when I start. Good LUCK. I will be listening.
How long have you been severe? I was told about 12 years ago I may have RA but never followed through. I thought it was same as osteo and ignored the pain. It became severe about 5.5 years ago. I am just curious about your history. Thank you.Hi Roxy,
I was dxd in 1996.  I had syms at least a year prior.  I too had no knowledge about RA or any autoimmune disorder.  No computer like I have now. but soon got one in 1998 so I started learning a lot about the disease and I have been on many medications since that time.  I was not treated initially but sent home with a bottle of ibuprofen, no refills, no referral to an MD.  I was told it was polyarthritis by an ER MD in a long beach, CA hospital.  I now live in ATL and have seen numerous rheumatologists
I research the meds before taking them but usually come around to taking them because the pain is totally unbearable.
Good luck on being approved with rituxan.  I hope it works for both of us.  Being in pain is getting really old.
God bless. take care. I've had two sets of Rituximab infusions, November 2007 and June/July 2008.  The first ones did nothing at all (however, I was under extreme stress with my sister's illness and death and my own ruptured Achilles, surgeries and MRSA, so it's not really surprising that the medication apparently had no effect).  The second set of infusions really HAS helped, reducing the level of RA pain in hands, wrists, knees and neck.  Certainly nothing like a cure, but a definite improvement.  AND my hair stopped falling out. 
 
I have heard that the second and subsequent infusions generally show greater results than the first one.  Bad news if your insurance doesn't cover it 100% because I know it's terribly expensive.  (So far my insurance has paid!)
 
I also have lupus, and my rheum chose Rituximab because it's apparently more effective with Lupus than the other biologics used for RA.
 
My second set of infusions were in June/July; the results were almost immediate (reduction in inflammation and pain).  However, I'd say it's just about worn off by now, so it didn't last very long.  You can only have the infusions every six months or so.
hi, i just sent this info, to my family, its really basic, which i like, bc i can't understand too much more, lol.
 
I've had the treatments, in Jan... and had to file to get help from a foundation, YAY, I just got accepted, they're paying 2800, of the 3,000 I need!!
The rest medicaid/care is covering, its 15,000!!!
 I like it and highly recommend it!~
hope the info below helps some
blessings
Whispered~
 
 
How Rituxan Works
http://www.rituxan.com/ra/patient/about/works/index.m
 
Part of what makes treating RA so difficult is that much of what causes it remains a mystery. What we do know is that RA occurs when the body's immune system attacks the body's joints. And B-cells—a type of white blood cell found in the immune system—are believed to play an important role in causing this attack.
 

Enter Rituxan

Unlike other treatments, Rituxan® (Rituximab) targets specific B-cells and selectively reduces them in the blood. This limits the immune system's attack and, ultimately, the pain and symptoms of RA.
 

Rituxan® (Rituximab) is a biologic, which means it's a treatment made from proteins produced in living cells. Like other biologics, Rituxan must enter your bloodstream for it to work.
 

When, Where, and How
Rituxan Is Given

Rituxan is given as an intravenous (IV) infusion, along with methotrexate ( from me: a small amt of meds they give cancer patients)... One course of treatment requires 2 separate IV infusions given 2 weeks apart. Each infusion will be given by a healthcare professional at your doctor's office, an infusion center, or a hospital. After the second infusion, you may experience RA improvement through 6 months.
 
With 6 months of symptom improvement, it may seem like you've forgotten about your RA. But remember that RA is a chronic condition, and because there is no cure, you'll eventually have to be treated again, over and over...
 

Living With RA
Rheumatoid arthritis (RA) is a chronic disease that occurs when the immune system attacks the body's joints. This attack causes inflammation in the joints and results in the pain and symptoms of RA.

Hi Cat,
I am sorry for your loss.  It is very difficult to lose someone you love, even more difficult when you suffer from an autoimmune disorder because the stress of a profound loss such as that increases the pain levels.
Thanks for sharing your experience with the Rituxan.  Was your hair falling out because of the rituxan or the lupus.  I have lost at least 50% of my hair due to meds, deep sedation for a lymph node removal, teeth extractions, and blood pressure meds. I am really hoping to hold on to the few strands i have left.  However, I really am looking forward to some relief of this burning constant pain.  I guess with winter coming i could alway buy a wig! :) I am kind of nervous but hopeful at the same time.  I will give a report back here to let you all know how it goes next week since you have been so kind to share your experiences with me.  I can usually tell right away if I will be helped by a med. very sensitive to meds.  I knew the first day that Enbrel was going to help me. It was subtle but definitely an improvement immediately for me.  I hope the rituxan works the first time around also.  hope so.
thanks again.  take care.
S--
Hi Whispered,
Thanks for responding and for the information.  It is encouraging to know you are being helped by it.  The doctors are trying to get help for me with the co-pay.  We will see.
blessings, take care.
S--
I have severe RA and use Rituxan.  It has worked wonders for my RA.  I did however take the full 6 months for it to start working.  I had my first set of infusions in June 2007.  I'm getting my second set starting next week, so it has been 16 months in between infusions... Lynn492008-10-09 06:14:56Hi Lynn,
Thank you!  I am happy to hear it has helped you.  I hope I can tell you the same some day.
Take care.
S--
Shelly, my hair was falling out due to Lupus.  I think so, anyway; it began to come back in fuller AFTER the second Rituximab infusions.  I had been taking Methotrexate from January 2007 to December 2007 and I blamed the hair loss on that.  However, I stopped the Meth in December before achilles surgery and it had no effect on my hair loss.  It wasn't till after the Rituximab infusions this summer that my hair started growing back.  So I now believe it was a symptom of Lupus.
 
(I lost about half my hair, which had been super thick all my life, so I didn't look bald, thankfully!  But now it's MUCH thicker again, though also kind of frizzy.  Oh well, no complaints, I'd rather have frizz than baldness!)
 
For me, the improvement after the second Rituximab infusions was about a 30-40% reduction in pain and inflammation.  I know that the improvement can be 100%, and/or long-lasting for some people - I spoke to one woman in the doctor's office who felt totally normal afterwards and went almost 2 years before needing another infusion.  But for me, it's been only about four months.  Still - very worth it, while it was working!
 
I am having hip replacement surgery next Tuesday, so I had to go off my regular anti-inflamm med (Meloxicam) until after surgery, and OMG, I had no idea how EFFECTIVE it was against inflammation!  The pain is just incredible right now.  Hope they let me start it again ASAP after surgery!!!
 
Until my RA and Lupus became really full-blown starting a couple years ago, I had no idea that people walked around in this kind of pain.  It's strange somehow that other people have no clue what we deal with on a daily, hourly basis.  You really cannot KNOW what any kind of suffering is like until you experience it yourself.  Many people are kind, but I can tell that they truly don't "get it."

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