To all Warriors with experience ?

To all experienced warriors ! Where do we go from here ?

Has anyone with systemic RD participated in trials beyond Biologics? Stem cell or other approaches which have been successful. I am having a difficult time finding drugs my system will tolerate. I am allergic to all NSAID's , Sulfa, Lefludamide, Asperin....

I recently developed CAD and Non Hodgkins Lymphoma. I can no longer take Orencia or Humira. Genetically Remicaid and Rotoxemab also show up as problem drugs. This leaves Actemra...If anyone is currently on Actemra infusions, let me know how things are going.

4 Replies

  • I had 3 infusions over a 4 month period as it took my neutrophils down low but no issues with it otherwise. Farm

  • I was on infusions but moved onto injections in January. I have found my white cell count to be much more stable than on the infusions where it was sometimes borderline as to whether or not I could have the infusion. But I now have CRP which is below average on my blood tests! Still tired but I also have Sorjens and osteoarthritis where the RA has damaged my joints as it has taken nearly 8 years th finally get under control.

  • Hi Damaged,

    This is the information on RoActemra which is on the NRAS website - RoActemra

    There are no current licensed stem-cell treatments for RA but there are clinical trials going on at present so it may well be a treatment for RA in the future.

    Kind regards


  • Thanks Emma, the site was just what I needed. I am currently off Biologics and DMARD's. I developed Pityriasis linchnoids . I had a lot of drug allergies which makes treating these conditions particularly difficult. Naproxen is in everything.

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