So far my RA team have had no success with Biologics. No success yet from the latest (Truxima). I am now doing my own research into alternative pain relief. Social media is full of American Snake Oil salesmen that make claims for their own magic products. I have yet to find anything that even remotely lives up to its claims. Unless you have personal connections most reviews would seem to be generated to attract sufferers. I have had some success with an Electronic Acupuncture device and TENS machines. My current search is for a cream or spray that will have the desired effect. I am aware of the placebo effect that can cloud results. I have told my GP and Pharmacist what I am doing and ask for advice if I see a strange ingredient that may compromise my traditional medications.My search at the moment is with Chinese and Ayaverdic medicines. Has anyone got a trusted alternative that actually works?
My search and tests will continue looking for the holy grail of pain relief.
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wafoorn
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So sorry to hear Truxima is not yet working for you. You may know it can take 16-24 weeks to have an effect. I’m having it but need 10 mg daily Prednisolone.
For painful joints have you tried Voltarol gel or capsaicin cream. Former can be bought from pharmacy but latter needs a prescription.
I don’t know about any Chinese or Ayurvedic remedies and hope others will have some suggestions.
Good luck in your hunt and please report back if you succeed.
Interested to see you use capsaicin cream , has it worked for you? Im starting to get neuropathic pain in my toes and i read it might help . Is it only available on prescription?
If you find an alternative do shout it out from roof tops!
In terms of alternative things for pain I’ve only found heat and cold effective with temporary relief from things like pernaton gel.
Another line to follow could be to do everything you can to support your body. I don't mean mad diets of snake oil and raw carrot tops, but a normal healthy diet with lots of fruit and veg. And trying things like ginger tea and chia seeds that are supposed to help with joint pain.
And singing! To stimulate your vagus nerve and release natural painkilling endorphins.
How long have you been on Truxima? It can take anything up, to 4/5 months to kick in ..Then you are due your next infusion and things can really improve from then on.
Wow your Doctor brought out the big guns and that did not even work! Wow!
I thought I was the only one that still to this day since 2017 cannot find one that works!
Since all the TNF inhibitor biologics have failed, as well as the JAK Xeljanze, I am now onto the IL-6 inhibitor Acterma! Had 4th monthly IV Infusion yesterday and STILL waiting! Been in a flare for 9 long months. Mainly in wrists every single day!
I was considering about Rixutan a B Cell inhibitor like Truxima, but after much research I said no way! No freaking way! You were very brave to try Truxima. I am way to chicken! Sometimes I just want to throw my hands up in the air and quit all of it and give my body a break from all this poison! Yet the only way to get off the 15mg daily prednisone is to find something so I can get off the prednisone!
Ninth month long being on all that prednisone (does as high as 30 for months) has really messed me up too!
PS. TRUXIMA (rituximab-abbs) is mainly used to treat Non–Hodgkin’s Lymphoma (NHL)
It is the biologic that works on B Cells! RA treatment is
I was diagnosed on 2016. I too am on 10mg Prednisalone a day. I have wrist splints from the NHS which help during a flare. with the splints I can at least pick things up!. I also have a neoprene knee brace which stops mt Knee collapsing.
Baricitinib gave me shingles, so that got kicked into touch. At the moment two months in on TRUXIMA and nothings changed. The RA team say it takes time? They are not the ones in pain. I am waiting for a spray at the moment which was advertised in America. It has had a trial, but no way of knowing if the results are genuine.
Had minor success with FLEXISEQ, got the OK from My RA team, supposed to be for Osteoarthritis.
Your rheumy team are right...Truxima can take up to at least 4 months to start working, & even then it’s not a magical, overnight revelation.
On some people the cells are destroyed quickly...so relief comes faster, but when you are in pain ...if the process is slow it does seem to take forever. Do try to persevere....once it is working life really is worth living again.
But when it does start to work do ask to get weaned off the Prednisolone ... you don’t want to end up having to struggle to get off it.....it’s a quick fix that can jump, up & bite you.
It took me from 1999 to 2016 to be prescribed Rituximab.....for me it’s the has been the “best thing since sliced bread”.
I only need the occasional Naproxen or Paracetamol now.
Truxima is the Biosimilar for Mabthera, which is the original Rituximab Biologic.
I have regular blood tests & feel very comfortable taking it. Everybody at the clinic where I am treated....aged from 30’s to 70’s is delighted with the improvement it has brought them.
Rituximab for NHL is given at a much higher dose in Chop chemotherapy & is administered much more often than the normal RD 6 monthly Rtx infusions.
I am keeping my fingers firmly crossed that Rituximab continues to control my RD forever!
why did you say no way? I am just curious because I cant seem to get anything that will work for me. Right now I am on 20mg of Lefluetimide daily and its not working. I have been in a falare for a week now in wrists, fingers and shoulders. Have to be careful not to take anything that has warning of prforation of stomach or bowel because I already had that with mtx. Rheumatologist would like me to try humira, which seems to be the answer to everything but here in the US it is very expensive. So any additional remedies would be good besides ibuprofen which helps but she doesn't want me to use. I wondered if BenGay would help or icy hot
I ve been using castor oil (organic cold pressed.) I apply it to the skin on the areas with pain and it releaves/ soothes pain almost immediately. My husband (bless him) assists every night to apply castor oil packs to my knees and feet. To do this I soak cotton wool in castor oil (poor it on) and then place a folded piece of cling film on top and a bandage to keep in place (not tight, just enough to keep in place). I reuse these packs for a week and then replace. I wouldn t be without it. It has reduced my use of ice/heat which I only use when pain/swelling is really bad. It also moisturises the skin really well which is a lovely bonus. Hope that s helpful. Good luck with your search ....
Many thanks for that information . That's just what I'm looking for. I've already got some on order. Looking up Castor Oil one of its known properties is anti inflammatory. Wide use in Asian medicine. Keeping my fingers crossed.
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