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Rank: Advanced Member  Groups: Registered
Joined: 6/23/2012 Posts: 36
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Hi Everybody, Am just sending out feelers, is anyone out there on Rituximab and if so how are you doing? Replies greatly appreciated, feeling a bit unsettled. jennyxx. 
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Rank: Newbie
Groups: Registered
Joined: 12/9/2009
Posts: 7
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Hi Jenny
Its Ann again I had Rituxamab for 4 years it worked very well for me. Although it stopped working after my last infusion at Christmas while it did work it was marvelous I had no side effects I felt as though I had my life back for a while I am so disheartened as was my consultant that it had stopped working I would say to you dont be scared have a go It might be the best thing since sliced bread for you. I wish you alll the very best.
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Rank: Advanced Member Groups: Registered
Joined: 6/23/2012 Posts: 36
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Thanks so much Ann, for your info, and what a shame Rituxamab, has stopped working for you, I do hope you have been able to find another drug that is a success for you, this medication voyage, is a bit of a minefield!
I feel a bit more optimistic now, actually, in a few weeks I am going into hospital, to maybe try Rituxamab and a few tests and some physio. Hope to emerge a new me! Ever the optimist!
Take care Jennyxx
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Rank: Advanced Member Groups: Registered
Joined: 6/23/2012 Posts: 36
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Sorry, Ann, i get confused with all the different forums, very good luck, if you decide to start Tocilizumab.
Jennyxx
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Rank: Advanced Member
Groups: Registered
Joined: 12/3/2009
Posts: 154
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Hi Jenny I'm the one who replied to your post about Barbara Ansell! Please dont be scared of Rituximab, I am on it and for me it has been good (see the adjacent post requesting success stories on RTX), wthout dire side effects and I hope to be able to continue on it as long as I did the Enbrel (6yrs), which I think you liked too. I have loads of damage from 40 years severe RA but I have responded well to Rituximab and have managed to get my weight up from 6.5st to nearly 8 which the docs are really pleased about. The steroids may have helped there too! I am currently waiting for another round of RTX infusions, having lasted since last October with a very good response. It has definitely worn off with B cells returning to normal and a corresponding big RA flare-up which even makes it difficult to breathe and swallow. My problem is a recurrence of inflammation and pain around the scar of my removed infected shoulder prosthesis 2 years ago, so I have been on mega dose antibiotics for 2 weeks. I have to be off antibios for two clear weeks before receiving the infusions. Another complication is that I am scheduled for a 3rd C-spine fusion on 1st October and the RTX should ideally be 3 months before surgery - or wait till 3 months after (though they could risk 6 weeks at a pinch). A bit of cooperation on the part of my body would be useful  , also we have important things like family visiting most of August from abroad and fun to be had! I do hope that your forthcoming hospital stay will be helpful and give you plenty of chance to ask any questions about your treatment. Where do you go now and is there a hydro pool for therapy? I do find that so good. I hope this can allay some of your fear about RTX. The risks are about the same as the anti-TNFs really and of course everyone is different. Take care, Lizx
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Rank: Advanced Member Groups: Registered
Joined: 6/23/2012 Posts: 36
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Hi Liz, really good to hear from you again, our paths are somewhat similar in many respects. I have 50 years of ravaged knees and hips, all of which have been replaced a few times. I too had infection, in knee and hip revision surgery. So biologics have been a bit of an issue! I had an infection develop in a 3 year old hip revision, while I was on Enbrel, and the doctors will not allow me it again, even though i initially responded so well. Since having my infection, when I was transferred to The Nuffield Orthopaedic Hospital in Oxford, I have remained under Rheumatology there, which I must say is brilliant. They indeed have a beautiful hydrotherapy pool, and I hope to get in it. I envy you having to put weight on, I am unfortunately, always trying to lose.
I am on long term amoxicillin at the moment, and the consultants like to keep me on it while I trial drugs. The infected hip, could not be removed as it was not loosevat all, so there is always a question over me regarding recurring infection, that worries me more than the R A.
Thanks so much for the reassurance, I will go in with a positive outlook, wish I had a few more healthy veins.
Take care and do keep in touch.
Jennyxxx
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Rank: Advanced Member Groups: Registered
Joined: 6/23/2012 Posts: 36
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PS Liz, i will be thinking of you when you have your surgery, lovely that you will have family all around you up till then. Have a great time.
Jennyxxx
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Rank: Advanced Member
Groups: Registered
Joined: 12/3/2009
Posts: 154
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Hi Jenny
Glad to hear Nuffield Orthopaedic are still excellent. It was where I was first referred on diagnosis as we were living in Oxford at the time. I was very sorry when we moved because of hubby's change of job.
I remember I was under a Dr Mowat and Dr(Mr) Seddon comes to mind too. This was in the 1970's! Dr Mowat was really lovely and I remember him walking out to the hospital gates with me after the appt with our very lively toddler in his buggy. Think he felt sorry for me!
You have had a very long and chequered history with RA. Despite this a very interesting life. How did you find the treatment for RA in Hong Kong? (did I remember rightly that you lived there for a while?) We visited there in 2001 when hubby had a sabbatical and I met people from the Hong Kong RA Society. Their consultant came along with his family and was very friendly. At that time no-one was receiving biologic treatment (cost), methotrexate was the main drug.
There is a member on the surgery thread Diane (hen), who might benefit from your experiences with infected joints and biologics Jenny - 'Anyone who has had an infected joint'. It is good when we can help each other, especially when the experts are baffled too.
Hope all will go well for you with your hospital stay.
Take good care,
Love Lizx
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Rank: Advanced Member Groups: Registered
Joined: 6/23/2012 Posts: 36
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Hi Liz, very good to hear from you again,
The Nuffield is now a beautiful new pink building, I really like going there, so different from Wexham park, which is my local. Actually since 1961, when I was diagnosed at the Whittington Hospital, Highgate, in London, I have really followed Dr Ansell around, Hammersmith, Taplow, Northwick Park, and Wexham Park. The main juvenile rheumatology unit moved to Oxford a few years ago, and I am very happy under the expertise there.
I lived in HK 1977-1980, and rheumatoid arthritis care did not exist. At that time I just took nsaids, and a couple of GP friends got those for me. Unfortunately, my time was cut short there, because of problems with my hips. So we returned to UK and Dr Ansell whisked me into Northwick Park and I had new hips. They were wonderful, and lasted me up to about 6 years ago. Problems for me really started then!! However, I have been back to HK many times since, in fact I was there in December 2010.
I have written a rather garbled answer to Diane, life is so complicated often, it's so difficult to remember, let alone write it down. All I know is, we have some brilliant doctors and surgeons in this country, and I owe a great deal to them, both in body and mind.
Thank goodness for this site, and all the lovely people here. I have learned a lot.
Take lots of care of yourself.
Jennyxx
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