hi everyone, was diagnosed in nov 2016 with R A since then ive been on 4 different medication, none of them have agreed with me and with severe side effects, I am getting worse day by day ,consultant now wants to put me on rituximab but I am scared because of the side effects I have already experienced, are there any other biologics she could offer me she says I can have rituximab or nothing ,I have lost all faith and trust in her, I don't find her at all helpful and am thinking of asking my g .p. to refer me to a different rheumatologist at a different hospital, i have been house bound since the start of January and in so much pain I can barely get about my own house, I have had a few words with her and get the impression she doesn't like me , I explained all that has happened since january to my works o.h she also thinks from what I have told her that I should think about changing which I am seriously thinking of doing and any advice or help would be greatful
mary x
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astrajewel
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As all th RA meds have side effects what really bothers you about this one ? I don't know anything about it I'm sorry but do hope someone can help you.
Hi Mary, I'm on Rituximab for the last four years now and it has been the medication with the most results for me. I did very well on Sulphasalzine when first diagnosed in 1995 and that lasted for about 8 years then it waned. Then Methotrexate tablets and injections worked well and after about 10 years they didn't work on their own. Injectable biologics weren't too successful for various reasons and after a lot of thought and watching myself go downhill I decided that I would have the Rituximab infusions. My biologics sister at hospital was very helpful and informative and since Spring 2014 I have had Rituximab infusions. The mobility and improvement in my RA health and general wellbeing has been amazing and my movement and strength has been excellent. Yes I have old joint damage .. inevitable after many ups and downs in the past 22 years, and Rituximab can't mend those, but it can stop any fresh inflammation happening and will get your ESR and CRP down to where they should be. Under 12 and under 5. I never thought I would see that again. I am able to walk a few miles in the country and tackle hills and uneven terrain and have great strength again.
The Rituximab infusions will free you of having to take more regular meds and injectionables although they do like you to take a tiny bit of another med to help the Rituximab. They are done no sooner than every 6 months and you have two long infusions two weeks apart. You are closely monitored and they take excellent care of you. Discuss that with your rheumy. I don't wish to blind you with science and I certainly won't scare you as you as there are so many Rituximab success stories you need to concentrate on those, although I know like every med, some people are allergic. I have been to one of the biologics. That's the way it goes. You can be allergic to anything and btw I am quite sensitive to foods and other tablets and haven't had (touchwood) any Rituximab reactions. Have a meeting with your biologics nurse or a rheumy and get the literature and speak to someone maybe face to face who has the infusions. Sometimes the rheumatology department can put you in touch with other patients.
Can you see a different rheumy in the same hospital? We can request who we see but there are three dedicated senior rheumys and three rheumy nurses, one of which is a biologics specialist.
You haven't said what meds you have already tried but if you are being offered Rituximab then you usually have had to have had two biologics (I had Enbrel and Humira) and previously (and usually) Methotrexate. Then if these have failed, Rituximab or another infusion is normally offered. Many people are very disappointed when they don't qualify for Rituximab and would like to be having the infusions as there is such a success rate with them and the mobility and getting RA under control which follows. You sound as though you will go for Rituximab and I think you will be delighted as I have been to get mobility back. I was bed bound before I started it. Couldn't lift a small teacup. All the usual things we lose when our inflammation/stiffness goes mad.
hi I started off with sulfasalazine methotrexate hydoxachloraquin all with bad side effects then leflunomide, my symptoms since starting leflunomide in jan this year has been horrendous, I said to consultant I thought it was them as ive only gotten this bad since starting them she was adamant it wasn't them now 5 month later she now thinks it is them and I have been in hell since starting them,when she then mentioned the rituximab the the first thing she said to me was it can damage the brain and spinal cord she just wont listen to me she said its rituximab or nothing there has to be other biologics ?? there have been other incidents that has happened with her since jan, I am at the end of my tether with her, and don't know what to do for the best
There are some side effects which are very rare but she sounds a bit off the way she is speaking to you tbh. As HH said there may be things in your medical history which mean you can't take other biologics but this all needs discussing with you and not you to be told it's that or nothing. If she is the only rheumy you can see then that's difficult. I wish she was more approachable. Hope you can make decision re rheumy and meds. All the meds carry some risk but you are very strictly monitored and they have to tell you the risks even if they are one in 500,000 etc.
The doctor may be aware of things in your medical history that mean that other biologics aren't suitable for you - but that could be explained! Saying it's that or nothing is a useless attitude.
Personally I'd talk to my GP about being referred elsewhere....
I'm sorry to hear you are having a tough time. All i can say is Retux has been my saviour after having numerous other ones. Although Retux is the only biological one I've had. I still take Sulphsazine but have, Retux annually. I've never had a reaction and apart from Sulpha I've had awful ones to all the usual meds prescribed for, RA. It's given me back my life. It's a decision you will have to make I'm afraid but can your life be any worse than it is right now? Good luck.
Do you have a rheumy nurse helpline at your hospital? You may be able to ring and talk to one of the rheumy nurses - often they can give a different view on things and talk you through meds and treatment in a better way than the consultant. It can take a long time and changes of treatment to finally hit 'the one' for you.
I have tried every drug possible for RA with SLE Lupus overlap, I have ha RA since I was 21 and one by one my body rejected them all. I have been on every biologic and for 2 years Rituximab worked fantastic, unfortunately it just stopped working and I'm now on abatacept which fingers crossed is working. Don't be afraid to try these as you are lucky enough to have fantastic meds now which should stop the damage caused by this illness. I'm having a knee replacement in 2 weeks and have had lots of op to repair and replace damaged joints. Don't give up hope one will suit you.
Hi Mary I had problems with Leflunomide too okay for first two years then horrendous side effects. I had to stop them myself as I kept telling Dr how unwell I was. Lowered the dose but made no difference so I stopped it but it has taken about 8 months to come out of my system. I wish I had gone for the washout but they say that's horrible. Now on Sulsafazaline for about six weeks hope it helps but am worried as waiting for a hip operation and my hemoglobin is low. Good luck with meds.
I don’t take any pharmaceutical drugs, I take Ascorbic Acid (true vitamin c) am and pm.Zinc ,vitamin D and a live flora probiotic..
I have never felt better! I listened to Dr Tent on YouTube about how we got so called autoimmune diseases, it’s a virus in us called Epstein-Barr..YouTube video— The Exploding autoimmune Epidemic-Not autoimmune, you have a virus!
I never had mono, but I went to get a blood test to see if this doctor was right. Results came back, I have Epstein-Barr! So I started taking the above supplements, I feel like new again..
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