Am I making it all up? ESR & CRP normal, joints don't LOOK particularly swollen, but pain and stiffness worse than ever before. Anyone else?

Getting pain in completely new joints too. 3 months since last Rituximab infusion. The first infusion worked but only lasted for a couple of months. This time it started to work but now I've taken a dive. Also on Leflunomide and low dose steroid. Starting to wonder if it's all in my head. Thanks for reading.

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15 Replies

  • I have PsA and my bloods were low and i was in a lot of pain. I was told it was could be Fibromylogia.. So ring your Rhuemmy nurse if you have one and tell them. hope this helps.

    sending huggs and good luck wished..


  • Hi never think that your making it up, if you feel pain, it's real, I know the feeling tho, felt that myself many times, but I won't anymore, my own Gp agrees that I've suffered a lot of rotten conditions, the tests are there for all to see......I can have dreadful painful flare up but no swelling.....that happens also ok...Tc jill

  • Nope you arent making it up my bloods are normal and i have no visible swelling. Gp: 'hmmm not much to see here' rheum:' you are right you don't have swelling'. BUT deffo have it fingers are a bit bent too ! I also have psa mind but it behaves like ra (symmetrical involvement etc)Anyway take care xx

  • Thanks all for the reassurance. And it's nice to know I'm not on my own. Thanks again.

  • hi, i found when i was on rituximab it was only the dose of steroids they give you first that worked...would feel better for a few weeks then gradually rhe pain would come screaming back .i came off it and about to try something new now.....hope you get sorted xxxx

  • That's a really good point about the steroids. Though everything I've ever tried (MTX, Sulfasalzine, Leflunomide) has worked well initially. A pharmacist told me that was just the placebo effect though. Wish they could bottle that!

  • They have bottled the placebo effect. It's called a homeopathic remedy. :)

  • I just call that a glass of water!

  • Hi yes I know exactly what you mean. I got an appointment with the RA nurse just over a week ago. Finger joints wrists shoulders all really painful but guess what no visible swelling even though I know from rings (not fitting) that they are indeed swollen. Pain still very bad but slightly better since I am now taking 800mg of Brufen twice a day. Given to me by the RA nurse. So believe in your pain you know how you are feeling. Hope you soon feel much better.

  • Glad you've found something that works. My nurses are very much on my side so I'll ask. At the moment it's the full whack of Tramadol and Codydramol but I might ask about Brufen. It's worked for my mom for years (though she's got osteo, fibromyalgia and ankylosing spondylitis. Thanks for your reply.

  • Talk to your rheumatolgoist - it may be that you either need a higher dose (mg per kg) of the ritux, or to have the time between infusions cut down, or to try a different anti-tnf.

  • Thanks for your advice.

  • I h ave simalar probs. after 2nd infusion first worked more pain but not swollen saw rhue yesterday changed my infusions .bad news have to wait six months before can have next treatment .so roll on feb. Thinking of u very painful chris

  • Fingers crossed it works again for you in February. I'm going to phone my rheumy nurse tomorrow and see what she says.

  • Good luck.i thought it was me at first chris

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