Hello everyone, I just wanted to post what has been happening recently with my RA. I was first diagnosed just under two years ago and have been on MTX for most of that time (together with Hydroxychloroquine), initially with tablets but latterly injections as I was suffering with nausea, loss of appetite, weight loss and generally not feeling good. The injections helped with these symptoms and I was managing well.
A fortnight ago two days after my injection I felt incredibly unwell, sick, dizzy and just horrible. I thought maybe I had picked up a bug but no-one else was suffering at home or work and I did wonder if it was an effect from the injection. Last week I was a little tentative about the injection but perservered none the less. Less than an hour after injecting, I felt absolutely dreadful, nauseous, dizzy, unbalanced - a feeling that really scared me and I never want to have again. I couldn't move my head or even speak without being overcome with nausea and when I tried to lie down, everything seemed to spin and this made me very very sick.
Fortunately I had an appt with my nurse this morning and relayed this information to her. She was of the opinion that I may have been suffering with an underlying bug which may have caused the symptoms. I was adamant that I was not going to have injections certainly for the next couple of weeks as I am incredibly frightened of being so unwell and feeling so dreadful again. She was happy for me to miss a couple of weeks and then maybe restart and see how I got on. She spoke to my consultant and he has apparently come across another similar case and he has being doing some research into these symptoms. What I had been suffering from (or at least it's what seems most likely) is something called Neuropathic Toxicity (from the MTX). It all seemed to make sense as the nurse tried to explain it to me and so I will no longer be on MTX but can take a break till the new year and then I have to try Leflunomide instead. I did ask if I could go without anything but she seems to think that the disease will return in a nasty way and that while it is currently reasonably under control, to try and keep things that way. In the meantime, if my RA flares up badly, I can have an interim prescription of steroids.
I hope my tale won't have haven't frightened anyone too much but it does make you realise that the DMARDS are really very potent medications and need to be treated with respect and great care.