3rd biologic, 7th treatment. Update on me.

merri

Well Cimzia (Anti TNF) didn't work, Abatacept infusions and injections (T-Cell modulator) didn't work, so now we're onto an Tocolizimab (IL6 inhibitor).

I take heart from the fact that most people don't get this far along the treatment path, apparently my body responds well to the 1st treatment, but then works out how to circumvent it, which is clever but highly frustrating.

My Fibro has worsened, it's now affecting my cognitive function which is incredibly scary, so a neurologist appointment is scheduled for next month. I feel like I'm losing parts of me. I have a PIP assessment team coming out on Wed as I can't fill in the forms myself, and am anxious about that as I don't know how I'll cope, due to my cognitive function being impaired.

In other news, I met someone 6 months ago, moved in with them 3 months ago and I feel very blessed to have found him and to be with him. Long may it continue

dreamdaisy

I'm on my third anti-TNF and, in conjunction with injected meth, it's working inasmuch as I have lovely bloods and it has slowed the progression of my PsA. None of my treatments have included the ones you have tried or about to try so I can't help on that front. The OA is a bigger trouble now and I was diagnosed last year with fibro but that is, so far, not too much of a bother. It is exasperating, isn't it? We try the new meds with hopes somewhat raised and then our flaming bodies let us down again: my rheumatologist calls me 'treatment resistant'.

I am pleased to read that you have found companionship - my husband doesn't necessarily understand what I am dealing with on a daily basis but to have him around is a comfort, he attends the majority of my appointments and often asks the questions I should but forget! Good luck with the PIP assessment, I hope it goes well. I am currently on higher rate mobility DLA but will be transferred at some point in the future which will be 'interesting'. Please let us know how you get on with it. DD

stickywicket

Merri, it's lovely to hear from you and I do very much hope that this will be the med that thwarts the 'med-detector' of your body. How frustrating for you!

The fibro thing sounds horrible. I'm pleased to say I don't even understand 'simple fibro' so this complex version is way beyond me. Can anything be done for it?

How lovely that something has gone very right for you! I wish you and your man a long, happy relationship. And I hope all goes well tomorrow.

LignumVitae

Merri it is lovely to hear from you. I have wondered how you were doing. I also hope this is the med to beat the med detector - what a tough little immune system you have, how dare it outsmart all the drugs designed to outsmart it. Good luck with the assessment.
Your happy relationship news is lovely to hear. I wish you both much love and happiness. When it's right you know it is right.

As5567

I really hope this drug works for you! I am currently on my 5th biologic and like your self found some have worked good for me but then my immune system decides to build antibodies towards the drug which makes it useless!

There is new evidence now showing that taking another drug such as Methotrexate at the same time as anti tnf drugs the chance of anti bodie response is lowered. Sadly for the first 2 TNF drugs I used that research wasn't around to help our doctors treat us. The main thing to remember is there are alternatives and possibly double TNF therapy in the near future according to my current doctor.