Hi Joeyvt,
I am wondering if your R.A. is controlled with steriods while you wait for the Rituximab to kick in. If I explain you will see my first experience of Rituximab has been colourful.
As Enbrel's failure was confirmed just before christmas, I was put on oral steriod, 10mg per day increase to 30 if necessary but reduce to 5 mgs per day upto ten days before my next appointment after christmas, where it was necessary for me to score a high daz score in my second assesmment to qualify for Rituximab. Follow....?
At this appointment I understood from my specialist nurse and consultant that I could continue on oral steriods or have an injection of Depo Medrone. I opted for the injection since regular steriods give me a fuzzy head and make my cheeks zing.
I reported to my nurse that the depo medrone seemed to have little effect. Ten days after the injection, I went for my first Rituximab infusion, having spoken to an NRAS volunteer regarding the experience. The hospital decided I wasn't fit enough to receive the treatment due to a cold and sent me home with a course of anti-biotic, rebooking a week later. Before I left, they offered me a Depo Medrone injection which I have subsequently discovered can not be given closer than 3 months apart. I explained I had had one ten days prior and that it hadn't seemed to help, so declined it. The ESR result at this appointment was over 100, so my nurse has told me.
The following week was dreadful, all my larger joints swelled and I was unable to sleep longer than two hours at night from the searing pain, especially at the center of my shoulder joints. I couldn't raise bed covers, turnover at night, get on and off the toilet without help, go up and downstairs, appetite loss etc....
I called my nurse to ask for advice, she asked which pain relief I was taking. I wanted something to prevent the damage but at this point I thought my nurse had said I couldn't have any steriods with Rituximab, so I felt I could only hope rituximab would work it's wonders fast!
A week later I returned for the Rituximab infusion. It seemed to take with no ill effect, except the tight chest towards the end, sleepiness and passing headache. Two days following the infusion, I felt great relief from the previous weeks torture. On the third day, Wham! high inflammation returned. (I realise that the cortisone injection at the time of the infusion must have worn off.)
A couple more phone calls to my specialist nurse, "What are you taking?" "Nothing except pain relief". She could not think of an explanation other than, you are experiencing a 'flare' and it could be stress related, drink lots of water.
I was signing off work for upto eight weeks at this point, having thought I would be off for maximum of three days, feeling very low and desperate, I think in my position anyone would feel a little stressed.
My nurse called me last night and asked if I was still taking the 10 mgs of oral steriod......?!!!!
She had called me earlier in the day, suggesting I came in to have my balllooning knees drainned, no mention during any communication about steriod dose. I was/am devastated to discover that the last three weeks of hell were avoidable and unnecessary. I couldn't stop crying last night I felt so upset.
This morning I hobbled to the hospital for ask her what went wrong?
She maintains that I misunderstood the consultant's instruction and that I should have remained on 10mgs of oral steriod, as well as receive the injection....
so why at any point during my numerous requests for help did she not suggest I increase the dose of steriods?
My first infusion of Rituximab is unforgetable. I don't hold any one person responsible for the misunderstanding. At the injection consultation I repeatedly told them I was finding it hard to focus and function due to inflamation. What I can not understand is why 'alarm bells' weren't ringing when my ESR broke the 100 mark.
I even reported to the ward doctor that I wasn't taking anything apart from pain relief. I feel I slipped between the cracks of fully booked clinic lists and unspecialist ward doctor.
My steriods have just arrived from the chemist so I'm off to take 10 mgs. My nurse explained I could be on steriod for an indefinite period. So I asked, at the three month review, how will we know if Rituximab has worked or the steriods are supressing my symptoms?
She said she will know, because the steriod will only address the pain and inflamation in the joints, not the global effects?
My question really is.... are you currently taking oral steriods to tide you over until the rituximab kicks in?
There is no mention of steriods in the diary entries on this site and my NRAS volunteer never mentioned steriods, I even had difficulty trying to establish if R.A. suffers can take the combination of Rituximab with steriods when searching google.
The up shot is; that my work collegues now know I have the potential to be a cripple (also I'm liable to crash and need weeks off at a time!) and I may have fallen out with the one person who consistently looks out for me and cares for me, my nurse.
Second dose of Rituximab due Wednesday 10 Feb, currently considering buying a remote cottage in the highlands and never coming back. What do you think? Though I fear, you can run but never hide...from R.A.
Good luck with your second infusion.
