Please bear with me as this is a long post!
Finally got my 1st infusion on the 4th December after 2 previous dates being cancelled because of shingles (my husband) and a tooth infection (mine).
I need not have worried so much beforehand because everything went well, apart from my temperature which went up half way through the infusion and they had to take me off for half an hour whilst they got it back down. The worst thing is having to sit still for 6.5 hours!
However the second one which was scheduled 2 weeks later on the 18th December wasn't carried out because when I got there and they took my sample from me, they said I had a water infection, so I was sent home! I had to take another 2 samples into my own GP which were sent off for testing and they both came back inconclusive. So off I went again on the 28th December for the 2nd infusion and again I was told that the sample I had taken with me showed I had a water infection of some kind and they were probably not going to let me have the treatment and I would be sent home again! So I had had 4 samples taken altogether, all of which were sent off for testing and all came back inconclusive but in the Rheumatology Infusion Department they said the samples were showing infection!
As you all know these auto immune diseases don't always make you feel great and I am afraid I wasn't happy. I don't live near the hospital, over 35 miles away and I just felt that I was being messed about and I said as much. After speaking to my consultant (who just happened to be on duty) they eventually decided to let me have the 2nd infusion to complete the first cycle.
I don't know if it has worked as yet and I am still on steroids, Hydroxychloroquine and Lefludomide.
Depending on who I am talking to I have been told varying timescales it would work within, 6/8 weeks, 12/14 weeks and the latest from the staff nurse in the infusion suite, 16/18 weeks, so it is just a waiting game - Fingers Crossed and everything else!