Successful treatment of Wegener’s granulomatosis associated scleritis with rituximab (Rituxan)

C M G Cheung, P I Murray, C O S Savage

Description: Rituximab (Rituxan, Genentech, Inc, South San Francisco, CA, USA) is a new anti-CD20 B cell monoclonal antibody that has been used successfully to treat refractory cases of Wegener’s granulomatosis (WG).1–3 There has been no published report of its effect in Wegener’s associated eye disease. We describe the successful treatment of Wegener’s associated scleritis with rituximab.

Case Study is here.

My Analysis: Although this study is about Wegener’s eye disease, it shows that Rituxan has been successful in treating various involvements of Wegener’s Granulomatosis. At this time, only a few patients have been treated with this drug (usually effectively.)

What I have heard is that the first time Rituxan is used, the patient can have problems if the drip is not really really slow. Also, this drug is very expensive. But, many of the patients with problems with other drugs (such as Cytoxan, Methotrexate, Imuran, or Cellcept) does well on this drug. The normal dosage seems to be 2-4 times a year.

The patients and caregivers that I have talked to about this medication are very hopeful. They have full energy with very few side-effects. Some do not report any side-effects at all. Many of the younger patients (under 25) are able to continue successful academic careers.

I am sure that we will hear of the problems as this drug is being used by WG patients. But at this time, it seems very very hopeful.

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About Cyn Bagley

My life is a mixture of travel, jobs, and disease. You can find some of my novels on amazon.com under the name Cyn Bagley.
This entry was posted in Medication, Rituxan, Wegener's Granulomatosis. Bookmark the permalink.

17 Responses to Successful treatment of Wegener’s granulomatosis associated scleritis with rituximab (Rituxan)

  1. Hi therei stumbled upon your blog and realized that you’ve wegener’s problem too. My dad is down with this disease for a year, and thank god, his stable now. So how did you manage to conquer this disease? You seem to be living your life to the fullest =)

  2. Hi lyn from singapore,First congratulations to your father for successfully surviving the first year. It is the worst year as I suppose you know.As for living a full life, I do the following:1. Rest when I am tired2. Take my medication (no matter how much I hate it)3. Realize that I have limitations now. (I used to have no limitations, it was quite a shock.)4. Love my husband who has been my caretaker.Also, I write. I have learned to be obsessive about germs. I can’t be around too many people without getting sick. So I am pretty isolated.Since I love to write, I can get on with my new life. Having a purpose in life has helped me survive.Yours, CynPS. Unfortunately this disease can’t be conquered. I have learned to live with it. I have learned to notice when my body is not happy. That’s the secret. 🙂

  3. casey says:

    My son, in his 30’s, was treated for Wegener’s did not achieve remission with either the methotrexate/prednisone or cytoxin/prednisone.. his doctor didn’t want to keep him on more toxicdrugs and used the Rituximab.. I’m not sure of the dosage.. but it was given intravenously two weeks apart, and he is now in remission.. the rituximab gave him no adverse effects and no after effects.. he is now happy and healthy.. and trying to get rid of the Prednisone Pudge..

  4. Casey,I am happy to hear about your son. I hope that he continues to have a healthy and happy life.Yours, Cyn

  5. GC Lim says:

    hi Cyn,i am from Singapore…recently diagnosed with Wegeners. Noticed that “lyn from singapore” had posted on your blog..can “lyn from Singapore” please contact me…would like to compare notes, given that this is such a rare condition.Regards,GC (limguekchoo@yahoo.com.sg)

  6. GC Lim,I tried to send you a message through your email but it came back as a delivery error. So contact me at cynbagley@hotmail.com.Also, if you join this link http://health.groups.yahoo.com/group/wgdiscussion/you will be able to talk to a lot of people with WG.Yours, Cyn

  7. Anonymous says:

    I was dx with Wegener's this Jan 09, 5 infusions of cytoxin and daily pred have not put it into remission. I started rutuxin last week and go for second infusion tomorrow. I feel some better, does it take all four treatments to feel better? I am so tired of being sick!, but and learning to listen to my body and rest. jw

  8. Hi JW,It was almost three years of medication before I was in remission. And in fact, I am still on meds at this time with other issues caused by the medications. However, I have heard that rituxin puts most of us in remission fast. (some folks have to take rituxen a couple times a year – every six months)… The only time I have heard of problems is when there is another underlying auto-immune disease. One person found out she had Krohns disease after she went into remission with WG. So rituxin might not stop all of your problems.Also, because WG is a systemic disease and does not stay in remission easily, keep getting your labs done at least every three months or so.Plus… be happy. Learning to deal with stress will help you to go into remission faster… TRUE!!!!Yours, Cyn

  9. Anonymous says:

    thanks for your post cyn. You are absolutely right, the body needs to heal as a whole. I am learning to pace myself and like you said. "keep my body happy" I love that line. I know it will take time and patience to heal and accept my new "normal" Best to you too. jan

  10. Good thoughts your direction Jan…Cyn

  11. Anonymous says:

    Hi Cyn, my name is melissa ,i'm from Newfounland and Labrador , Canada. i was 17 when they finally found out that i had WG . i'm 29 now . living in fort mcmurray, AB, Canada. i travel back and forth to Edmonton , and found some great doctor's and just started on rituxan, see if i could get in remission. been a rough road don"t want to say to much here. but my e-mail is melissa_872@msn.com if you would like to chat. this is the first time i found a page actually had the nerve to write. thanks for your time.

  12. Cyn Bagley says:

    Thx Melissa,It is always good to hear from a WG sufferer.Cyn

  13. Chris says:

    Hi Cyn,Great Blog. Knowing what you know, if you had the option of going with Rituxan first for WG with Scleritis would you have gone straight to this medicine?I am 32 and have c-anca positve WG just confirmed. Bad Scleritis for 9 months and sore joints, no other major organ at this stage. I have been an athlete and it seems this drug might offer fewer side effects as I recover over the next 12-18 months.Thoughts?Best regards,Chris

  14. Cyn Bagley says:

    Chris – in your case, I would ask for RTX as soon as possible. When I started with my WG journey, RTX was not even considered for a med. It has been the last five years (more or less) that it was tested on us.The reason it is still used as a last resort drug is because it is so expensive. Since I am now on a maintenance drug, I am hoping that I can keep RTX in reserve for a flare.Just one thing – if you happen to have more than one autoimmune disease, RTX sometimes suppresses the WG, and the other disease goes on its merry way.Hope you are doing well – In my case, I had to have something that would stomp WG because it was rapid in my case. After three months of scleritis, I was in the hospital for failed kidneys.Take care – Cyn

  15. Cyn Bagley says:

    Chris – to make it clear – there is no cure for WG. You will always from now on have to keep your health in the forefront of your mind. I don't know if you will be able to be the same athlete you were before. In the other meds especially cychlophosphamide and prednisone combination, you would gain a lot of weight and lose your abilities. I was not an athlete, but I did hike and exercised every other day.In my experience (others too… we have had people in the military who have had the same experience) the meds made it almost impossible to exercise. Prednisone after being in the body for long periods of time caused the muscles to strain. There are other problems as well. BUT we have learned that sometimes the choice is either meds or death. In the past this disease was a death sentence. Nowadays we can have a life with limitations.We don't know what life will be like for people on RTX. It is still too new. But, once again less side-effects and more energy. My first year with the disease, I could barely get out of bed.Goodluck, and good thoughts to you.Cyn

  16. Chris says:

    Hi Cynth,I have had my first infusion for Rituxan 500mg. I had a reaction early on, they stopped the drip, waited a bit then it was all good. That was last Friday 31st of August. Its now been 7 days tomorrow, and I dont really see any change in my blood shot eyes.How long did it take for your Rituxan to send your eyes clear / put them into remission. I am on 12.5mg of PRED, probally should be on a bit more, but once that starts working, then my eyes go clear a few hours later. So frustrating.I saw a video testimonial on the Rituxan website, and the patient said it took 3 weeks for her Scleritis to see improvement.Love to hear your experiance.I have been following a vegan diet and been going to the gym 5 days, so quite ripped at the moment, just need to get rid of the bloody persistant red eyes!Regards,Chris

  17. Cyn Bagley says:

    Hi Chris – At this time I have NOT been on rituxen so I don't have any personal experience with this drug. I do know that most of my friends who are on this drug think it is a miracle.I did have scleritis when I became ill with WG over 9 years ago. They put me on 1400 mg of cytoxan I.V. for a year and 100 mg of prednisone daily. The scleritis went away. Scleritis with WG sufferers shows that you are filled with inflammation in your blood vessels.Something that I do (I talked to my doctor about it) is to take Omega-3 (either fish oil or Mega red) twice a day. It really helps to get the inflammation under control.Good luck – Hope you start to feel better.Yours, CynPS – I am happy to hear that you have that much energy to go to the gym. Just a note– the prednisone can cause the munchies and make you chubby even if you are staying on a diet especially if you go over 20 mg. a day.Another note: You might want to remember this one– Prednisone acts fast on the inflammation. The chemo (or in this case Rituxen) takes a longer time to react which is why we are given both at the same time. You might want to talk to your doctor about upping your pred for three weeks and then weening slowly down.I have been on pred for over 9 years. For the first time I have been weening the pred from 5 mg to 3 mg. It has taken me six months to get down there. ;-)Once again good luck–

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