At last a bit of hope :)

Thank you to all who have replied, read and tried to advise.

My update is as follows, Rheumy going to try me on Rituximab, after Humira failure, also confirmed that my skin problems are vascilitus - finally another confirmation. I had a very detailed appt with the top consultant who was quite amazed at the ulcers on my fingers and elbows, am so glad I took photo evidence.

Got to go start back on methorexate but 5mg weekly coz cant really tolerate it due to giving me severe depression - but I can handle that ....

My Consultant really tried to push fibromyalgia again coz im rf negative, anti ccp negative, low esr but always raised crp, I said can you get vasculitus with fibro????? He then said no - so had a DAS score done again, chest x ray, blood test and got to reapply for funding, so lets see how it all goes now.

Well thank you for reading my latest update and for your views.

Love, light and health to all xx

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  • Hello BBB, I can not add a lot here, but I just would like to wish you good luck with the Rituximab, I have read great things about it, and I hope it works well for you. I also hope they get things figured out as far as diagnostics go, there are so many similar diseases and some overlap into others. Keep us updated on your Rituximab experience, i would love to know how its working for you.

  • Well at least there is another option beckybooboo so let's hope rituximab works. I also hope you're fine on low dose MTX, you don't want to be coping with depression, or rather not, as well as vasculitis Think you've quite enough on your plate. What did the DAS determine? Hope everything is ok to get the go ahead too & the funding comes through quickly.

  • Hi BeckyBB ;-)

    I started Rituximab in early April after failing Humira and Enbrel ... or should I say they failed me!! ) Why should I take all the blame! ;-) ) Inflammation levels came down very quickly and have stayed very good meaning I have not repeated my infusion yet and we are at nine months now. I think I possibly will need to soon as I can feel a little tweaking creeping in but that is confusing as it could be the damp/cold/OA damage reacting to those weather conditions, but I can say to you that Rituximab has done for me what nothing else really could in the past three years. Hoping you get your funding for it and can start soon. It does not usually work as fast as some of the other meds but it is a strategic thing, and something you have to be a little patient about, and I am sure you would be given something to alleviate things/tide you over until Rituximab started to work. I had knee injections just after my first duo of infusions (the knees were so puffy and swollen I needed to get them down quickly in order to walk) so it was a bit difficult to know what was working for me at first but I felt a definite difference in myself after 8-9 weeks. My "electric shocks" had gone (and very glad I was about that too!) which is what I call the horrible inflammation pains of RA uncontrolled that I was having ALL the time. Do let us know your progress and wishing you lots of luck.

    Love Neonkitty ;-) x

  • Good news at last. Just hope that it works well for you, and you can get started soon. Unfortunately, I was allergic to it, but I know that it has been fantastic for some people.

    Have a good Christmas! M x

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