You may have noticed that the panel to the right showing “date of next remicade” is empty. It has been 14 weeks since my last dose of remicade and I have no arthritis pains. In fact my psoriasis doesn’t appear to be too bad (touch wood) even with the length of time since my last dose. I have some scalp psoriasis and it seems to have got a little worse in my ears, but I haven’t developed any on my elbows – which usually has persistent psoriasis!
I’ve blogged before that I believe that my psoriatic arthritis is in remission but how I was too scared to stop the remicade in case the arthritis comes back much worse – which happens in some people. Even more scary – for some people who stop taking remicade and then the arthritis returns, remicade no longer works.
So what has changed my mind? Well my rheumatologist always checks my blood, liver & kidney before I get my remicade. This last time I had my blood checked my platelets have been low. My rheumatologist told me that some people on long term biologics develop “drug induced lupus”. She gave me a handout to read up about lupus and told me that generally people who do develop drug induced lupus don’t get it as severe. Wow – this got me worried. So seeing that I am pretty sure I’m in remission my choice is to continue the remicade – with the risk that I do develop lupus – or take a break and see if my platelets get back to normal. This was a couple of weeks ago when my remicade was due and at the time we decided to hold on the remicade and test my blood again in 2 weeks.
So yesterday I had my blood tested and again my platelets are low. I told the rheumatologist that I want to stop the remicade and monitor to see if my arthritis returns. She also said that another option if the arthritis does return is to change biologics. She also asked me to see the hematologist to see if any of my RLS drugs or my vitamins could be the cause of the low platelets. So I saw the hematologist yesterday afternoon and she said that my platelets – although being under the normal range – aren’t that low that she is concerned. She said to continue taking all my normal meds and vitamins and see her again in 3 weeks when we will check my blood again. She also said that they will test to see if I have any hepatitis as this can cause low platelets.
So I’m officially off biologics! Everything is ok so far but it is early days. One of my fears is that since the remicade was helping against the psoriasis as well as the arthritis, that my psoriasis will return – and I had it pretty bad before. But as I mentioned above it seems ok so far. Maybe my diet change and increase in exercise is helping?