Geen idee of deze al gepasseerd is. De meest recente update van onze Filgotinib ph 3 RA deelnemer:
Hi Everyone,
I just wanted to let you know how I have been getting on with the Filgotinib clinical trial I signed up for. I’ve been taking it now for 5 months and I finish the trial in February.
For that last 5 months I have been taking two test tablets, one is a placebo and the other is filgotinib at either 100mg or 200mg, or possibly (although unlikely) two placebo tablets daily. I also take folic acid, hydroxychloroquine (2 x daily), omeprazole, 2.5mg of prednisolone and a weekly injection of methotrexate.
2017 Started out as a bad RA year for me, I was admitted to hospital in April having had 2 rounds of steroid injections in nearly every major joint and basically being unable to walk comfortably or care for my basic needs as a human being. Before I was discharged I was started on a new medication Embrel, it seemed to be working ok but at my 3 month review my rheumatologist was not happy with the results and decided “we” could do better, so we discussed starting on Cimza. This never happened as I opted to apply for the clinical trial, having previously worked in the pharmaceutical research industry, the idea of helping a new drug come to market appealed to me. I had to be “clean” of Embral for at least 6 weeks and taper down my prednisolone as far as I could manage ( I was up at 25mg daily at that point) before my clinical trial screening appointment. By the time I had my first dose of the clinical trial medications I was back on crutches, having trouble washing, dressing and eating, having RA in your jaw is great way to lose weight but I don’t recommend it lol!
So here we are 5mths later, I have a life (almost the same life I had before RA) and have no real pain to speak of. A couple of niggles that just refuse to go away, my joint count is down to under 5 and those are just slightly tender. I do still get a bit of morning stiffness for an hour of so but nothing like the last years or even how it was in the beginning, just a general tenderness of my hands and feet (remember how your feet used to throb after a good nights dancing, like that) and it generally goes (mostly) an hour or so after I have taken my meds.
No real side effects to taking these tablets either, a few more UTIs than I’d like but that’s par for the course with a lowered immune system. I’ve had my flu jab with no problems and I don’t think I’ve had gotten sick any more than any of my work colleagues. I do still get very tired so generally have a nap for an hour most weekday evenings after dinner and bedtime is still very early for an adult around 2030-2100. That said I work full time and get up at 0530 everyday, so an early night is sensible in my opinion. My weight has been fairly stable and despite Christmas I’ve not put on more than a few pounds, which will drop off again now I’m back at work.
My real worry lately had been “what’s going to happen after this trial is finished”, I love this new medication and really don’t want to go back to being in pain and not having an active life. As it turned out at my December apt my Rheumy asked me if I wanted to be considered for the 3year trial, I jumped at the chance. Three years means I can plan my life, take the holidays I always wanted too and just live!
Anyway the point of all this is to give you all some hope, there are new drugs in the pipeline, they do work (although like everything it’s finding the right one for you) and you can have your old life back.
If you are willing to take a risk (they are not risk free and may not work for you) then you could apply for a clinical trial.
Keep an eye out for Filgotinib manufactured by Gilead it may be your magic medication too.
Above all never give up and always expect and ask for better treatment if you are not happy with the results you are seeing on your meds, there is no reason to suffer in silence.
L2U All x
- Nicola