Rheumatoid Arthritis in the News: Rituxan Success
Mountain Climbing With Rheumatoid Arthritis Treatment
Every day I peruse articles and journal abstracts, updates and tweets about Rheumatoid Arthritis treatment. Maybe that is why I get so behind with emails or other blogs I’d like to read… I think I am straining to see the future. What is next around the bend? From where will our cure come?
Anyway, a couple of weeks ago, I found this great article in the UK Mirror online. I am so happy to share with you this positive example of Rhuematiod Arthritis information in the news. Kudos to Caroline Jones who wrote this is marvelous story of Wendy Dawley, a 33 year old woman with RA.
According to the story, Wendy was the ripe old age of 30 when Rheumatoid Arthritis reared its ugly head. She just woke up one day and “Every joint in my body hurt – my neck, elbows, shoulders, even the balls of my feet. I couldn’t put my feet on the floor to stand up… It felt like severe bruising – or as if I’d been beaten up.” Sound familiar to any of you?
Why does it feel so good to see that in print? Maybe RA’ers have just had it with people acting like we are not very sick. I cannot tell you how many times people have thanked me for just voicing what they are experiencing. I know how they feel; I want to send flowers to Ms. Jones.
Miss Dawley was shocked by how suddenly the Rheumatoid Arthritis disabled her. She had thought that Rheumatoid Arthritis was “what happens when you get old.” Unfortunately, she learned otherwise. “There were times I couldn’t even get up, let alone go to work, meet friends or do any exercise. My social life ended. It was so bad I had to move back in with my parents, because I couldn’t look after myself. I felt like a child.”
Wendy’s miracle with Rituximab for RA
Happily for Wendy, she was able to get into a trial for Mab Thera (called Rituxan in the US) three years ago. These are the brand names for rituximab. Rituximab was originally created to treat B cell lymphoma. It depletes B cells, a type of white blood cell (also called lymphocytes), by inhibiting the protein CD20. B cells are one link in the inflammation process of autoimmune diseases like Rheumatoid Arthritis.
Rituximab is used in cases of refractory Rheumatoid Arthritis, meaning that the RA has not been brought under control by other treatments that usually work to reduce symptoms (like TNF blockers such as Humira and Enbrel). It is administered by intravenous infusion which can take several hours. After 2 doses, it is not given again until the patient’s RA flares. It is used in conjunction with methotrexate.
How does Wendy feel about living her life on chemotherapy? “Long-term I presume I’ll always be on some kind of treatment, but it’s a small price to pay for getting my life back.” She describes herself as “transformed.” In fact, on a recent vacation, she went mountain climbing! No wonder her story was uplifting!
The story of Wendy Dawley’s Rheumatoid Arthritis has lots of common themes. Let’s hope we can make her happy ending more common, too.
Note: Here is a link to read the entire Mirror.co.uk article. There is not a comment box on the Mirror website, so I sent them an email to thank them for the accurate and hopeful article. Here is the email in case you want to do the same: mailbox@mirror.co.uk
Recommended reading:
- What is Remission of Rheumatoid Arthritis? Part 1
- Rheumatoid Arthritis Requires Disease Treatment and Symptom Treatment
- 5 Ways We Can Spread Awareness of Rheumatoid Arthritis
I just started this treatment this year. I am pretty amazed at how it has worked so far. And the treatment hardly interrupts my life.
Very happy to find something that works.
It's absolutely shocking and irrational that autoimmune diseases are still treated with immunosuppressants, even though they're immune deficiencies. It's like we're still in the medieval ages, totally absurd! The only sane treatment for RA is immunostimulants, and low dose naltrexone is the most effective (and safest) one. By perpetuating the myth that immunostimulants are a good treatment you're doing nothing but harm to people with RA.
M.,
That is a bit contradictory:
"By perpetuating the myth that immunostimulants are a good treatment you're doing nothing but harm"
I am not promoting "immunostimulants" – I am promoting research, facts, and treating all life as it has value…
Thanks Kelly for all your hard work and research. I’ve always been taught by my doc and through my own education as a BSN-prepared R.N.; that RA is an autoimmune problem-not a defiency. Thus we need to use immunosuppressants. Those drugs have worked for me in the past although right now I’m in a flare-up and trying different drug combos.All life does indeed have value. Even on really bad days, my kids always seemed to appreciate that i was HERE to listen and give support; and I felt blessed to have been able to have them and love them. Just one of many reasons that life has value.
TO CLIMB AN ANT HILL IS A THRILL FOR ME, AND I’M SURE OTHER RA’RS , BUT CAN YOU IMAGINE THE EXHILARATION OF CLIMBING A MOUNTAIN! HERE’S TO THE ONE DAY I MIGHT…. :rose:
Rituxan is totally different that the other TNF’s..It literally saved my life and I highly recommended it to others who cannot get relief with their current treatment….
My rheumatologist mentioned this to me. Link here. It is very, very rare and not wide spread but is deadly quickly. The manufacturer is aware and has a white paper study on this viral condition. Everything has its trade offs.
I just turned 60 and I’ve had RA for 28 years. I’m quite deformed in my hands and feet and I have a cage around my spine because the inflammation was squeezing the spinal cord. I’ve been on most of the infusions, Actemra being the most recent, and my Dr. wants me to start Rituxan. I was ready to pick up the phone this morning to tell him, “NO WAY” due to the potential side effects but I read your blog and I’m going to give it a try. Thank you.
Kelly, thank you for all of the information. I always love reading your blog and reading what you have to say. I also love the comments. I’ve had RA since I was 26 and I am now 42. I think I’ve tried everything out there and now thanks to you, I’m finally going to try Rituxin. I so hope it helps with the pain because the Enbrel isn’t cutting it anymore. Wish me luck and keep on writing. You are a blessing to so many of us. Thank you bunches and bunches!!
Thanks Kelly for the great article – and inspiration. hope your treatment is successful in giving you some relief. Keep up the great work
How amazing, this is exactly what i experience.
I’m 61 and have had RA since 1993. I thought I had found my miracle drug in Humira. I could not even tell I still had RA. But in the past year (I’d been on Humira for over three years) my white blood cells started dropping and my rheumatologist took me off Humira. I’m now in a deep funk because my RA came back with a vengeance and I feel hopeless. I’m wondering if anyone has experienced the same problem with Humira and if they tried any of the other biologics with success? My doctor now wants me to try Rituxan but it scares me. Any ideas?
Hi Jane, I was on Enbrel for 5 years and it was incredibly effective. I was also on low-dose Prednisone, but overall I would say I was in remission. Like you, I developed a very low white blood cell count and was taken off it. I tried Humira a few months later with same problem. That was 3 years ago and I am still searching for an alternative medication. I just tried Cimzia, in the same family. I’ve been on it 3 months with no problem with white blood cell count but absolutely zero effect. Last spring I tried Orencia, which my rheumatologist thought would be a good choice since it works by a completely different mechanism. Although it did not work for me, it is another option. I may get desperate enough to try Rituxan, but not yet, it scares me…I can relate to your funk, but hope you and your rheumatologist can can come up with a plan that will offer hope.
Meliann, thanks so much for your reply! You’ve given me some hope. I’ll keep fighting and pushing ahead. Maybe the next miracle drug is just over the horizon. I should keep reminding myself that had I been born just 10 to 20 years earlier I could have deformed joints by now. Yes, I hurt. But it could always be worse.
The thing that scares me about Rituxan is that some people (a small percentage, I know) have died after the first infusion. Also, the infusion itself can make you very sick, so sometimes it has to be given over two days instead of just one. I would need to go to our local Cancer Center for the infusions. I hesitate to do this because my husband died from colon cancer and spent many hours there, with me by his side. I’m afraid of the memories it would conjure up. Hopefully I can quit being such a “baby” and just do it.
I’d really like to hear from some patients who are currently on Rituxan. Are you out there?
Thanks!
My Rheumatologist wants me to try this. Now I will.
i have had two rituxan infusions. first one lasted about a month the second and I had in November so it is losing grond each day. I am beginning with the so tired syndrome every day. The only problem is I now was tested and I have hit bottom on the immune scale. I received a letter that said I couldnt have anymore. What next?
Regenia Lovelace
Hi All,
I believe I’m a rare case but wanted to share my experience with Rituxan. I was diagnosed with RA when I was 21 and have had it for 23 years. I have literally tried everything with varied success (Sulpha, Plaquenal, Methotrexate, Enbrel, Hunira…..). About 7 years ago I had my first Rituxan treatment(wasn’t yet approved for RA). The first treatment put me in 100% remission for about 13 months…the next treatment lasted 18 months….the next 24 months…and the last one had me in remission for 30 months. I actually just finished my latest round and am hoping for a similar or better run this time.
Like I started with I don’t think I’m typical but have had amazing results with literally no side effects to date. Would love to share any details with those who are considering the treatment.
Terrible experience with Rituxan, besides doing nothing for my RA, it gave me a severe lung infection which eventually led to COPD. COPD does not go away!
I am unable to try any of the other biologic type drugs because of a history of cancer.
The bill for my 2 infusions was $28,000.
This is a “miracle” drug?
I read these articles one day before my first infusion yesterday. Nervous, very ill and the time was here. Hesitant because of all the negative stories on the medication. My only hope. I have severe advanced RA. I was only diagnosed February 2016. Became non ambulatory within two months of the diagnosis. The disease has been advancing at a strong steady nonstopping pace. I take prednisone, arthritis Tylenol round the clock, heart medications, because the RA is in my lungs and caused hypertension to them so it affected my heart and I have heart failure. I’m on oxygen 24 hours a day of how bad the RA is on the lungs. My cardiologist, pulmonary, and primary care all agreed with my rheumatologist that this medication would help me. Scary. As long as the RA is not controlled nothing else they can do for me. Tried the cheap stuff first Azathiaprine. Had to wait for that to possibly work for four months before the retuxin was considered for insurance to cover it. I waited a year after the diagnosis. Too long. Steady agony is the only word to describe my life. As I write this only 30 hours after the first one I am actually typing and I am 75% pain free. I did not have any side effects during or after. No headache, no nausea, I feel a little tired but not more than usual, if anything it’s less. The only thing I did have was a small taste of like metal in my mouth. They said it was normal. As the day progresses it is less. I would take the taste forever in exchange for no pain any day. Yes it is scary, but not all people are the same. Faith, hope, and prayer. Here I am. I am due in two weeks for my second one and I will write about my progress again. Only people who have lived like I have for the past year will understand my story. It hurt to think. No single spot on my body was pain free. I will write more soon. Oh, my heart is fine and so far so good. The goal is for my lungs to relax so my heart takes a break from the torcher my lungs have put it through.
Hi! I just did my first round four days ago. I have RA only diagnosed one year ago but moving very rapidly. I have had minimal side effects. Slight headache, slight to moderate tiredness. I do ache though on my upper mid back and today on my upper chest. They said side effects will last about a week. The first day was amazing I was able to take a few steps with no pain and woke up feeling very slight pain. It was so amazing it was scary. Today I have pains still but not as agonizing. Scheduled for second one in two weeks and then they will do another in six months. I have had to go pee round the clock though too and when I have to go I have to go. Did you have that? And also does it take a little while for the body and med to settle Nd do the job? Thank you in advance for your input!
I am glad it’s working! It did not work for me, but that means nothing to another patient. It’s amazing you already feel some results.
I did not experience the side effect of peeing a lot, but that can come from steroids, and they usually premedicate with solumedrol, so maybe..
As far as headache, that can happen with any infusion – it usually wears off quickly. So call the doc if anything is worse but it sounds fine.