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ritiximab Options
stvcoward
#1 Posted : Monday, April 15, 2013 9:11:28 PM Quote
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Joined: 4/14/2013
Posts: 12
Location: egham surrey
Can anyone tell me if i'm being over board, I've been on enbrel and metho. for the past six years and have managed to maintain full time employment as a sheetmetal worker doing heavy work, over the past year or so iv'e been struggling on a weekly basis with pain and nausia, the nurse told me in jan to stop taking the metho. and that she would put me forward for ritiximab, I took the usual tests for tb which came back inconclusive, so i was then told to stop the enbrel aswell, I then had a chest xray which was clear, but was now, as the weeks past waiting for results, beginning to get more problems with pain due to being off drugs, early march i was having quite severe flares and was now losing days off work, i had to almost argue that i didn't have tb to avoid another prolonged scratch test, which doesn't give a conclusive result anyway. Eventually after numerous phone calls funding was finally agreed at the end of march and as of yet i haven't heard anything back, i'm booked to go on hols at the beginning of may for a week so i really don't know what to do if they ring me with an appointment.
So to recap, mid jan, start to proceed to new drug, mid april I'm back on a daily prednistolone chipping away at my bone structure, am I being over board.
steve
Valerie-R
#2 Posted : Tuesday, April 16, 2013 1:50:52 PM Quote
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Joined: 5/22/2010
Posts: 51
Hi Well they told you, you have been given the funding they should also have told you the date you start it.Phone them up & explain you have booked your holiday in May.When you start this drug you will have another dose two weeks later,hopefully the next one will be six months time.I know as i have just had my second dose.So good luck,You phone them do not wait for them to phone you.
stvcoward
#3 Posted : Tuesday, April 16, 2013 8:58:09 PM Quote
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Joined: 4/14/2013
Posts: 12
Location: egham surrey
your right, but my problem starts with,example: had a serious flare in march and took a day off on a thursday, I rang the nurse, a recorded message said due to staff shortages if u need a depot visit your G.P, i left a detailed message explaining my situation about waiting for new drugs, i also rang the secretary leaving a similar message, i visited my G.P she also left a message asking for them to reply, on friday still off work i left similar messages to the nurse and the secretary, monday still off, i left messages to the nurse and secretary, i even got through to the appointment counter in the waiting room and was told again about staff shortages, tuesday i left the same messages, later that day they replied and got me in to see the consultant, the consultant said they will be in touch within the next week or so to give u an appointment, two weeks later im faced with the dreaded message machine, the next day the nurse rings me and says your funding has been approved you will get a phone call shortly, when they ring you you'll need to explain about your holiday, that was last week, i havent given up i'm ringing them again tomorrow, but can u hear my frustration, is it something i should be shouting about or are the staff shortages the problem, if so its not their fault so who's fault is it, is it cut backs, is it lack of trained personel, i've signed up to the nhs foundation trust, but as of yet have been unable to attend any meetings which take place on tuesdays at 3pm covering specific issues, the next annual meeting is at 6pm in july, i just hope i can get some answers then
annamaria
#4 Posted : Tuesday, April 16, 2013 9:52:28 PM Quote
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Joined: 12/3/2009
Posts: 154
Hi there
Sorry to hear your frustration at lack of communication re Rituximab.
I have these infusions (fourth round at the moment) and find them really helpful. I was also on Enbrel for 6 years but it ceased to work. Rtx has been good for me.

The problem with these infusions seems to be getting the space in the Day Hospital where they do them for me locally as the first one especially can take up to 7 hours and this takes a bed/chair for a full day. The Day ward is so very busy with patients having
everything from cancer chemo to bone marrow transplants and of course the ever growing number of patient receiving biologic drugs.

This is just my local hospital's situation. I usually wait for about 6-8 weeks to get the bed space after the drug is prescribed because of this problem.

If you are going away, leave a message with your dates and can your GP give you an intramuscular depo jab to help you on your holiday? I often have to have one of these and they do help for special times like holidays/weddings/Christmas!
Rituximab can take at least 8 weeks to kick in so you may need some help in the meantime.

Lots of luck, do hope you feel better soon.
stvcoward
#5 Posted : Friday, April 19, 2013 9:03:59 PM Quote
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Joined: 4/14/2013
Posts: 12
Location: egham surrey
Hi,
After reading that somebody else having problems with their hospital got in touch with their pals team and got a quick resolution, I followed suit and wrote a letter to my pals team, the following day I was contacted by the rheu. secretary she forwarded my letter on to the department arranging my first infusion and within an hour they rang me to give a time and date. Luckily my first infusion is a week before my hols and the second is the day after i get back.
roll on summer,
steve
sylviax
#6 Posted : Monday, April 22, 2013 8:27:43 AM Quote
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Joined: 5/28/2012
Posts: 665
Location: Newton Abbot
Hi Steve - well done for persevering and a special well done to your PALS team at the hospital. You shouldn't have to go through these hoops but you're getting there. Have a great holiday and like AnnaMaria says, maybe ask for a steroid jab to keep you going - but just having some time away from work will probably work wonders for you. I am full of admiration that you don't let the RA get you down and hope the ritiximab works well for you.

regards Sylvia xxx
Be kinder than is necessary because everyone you meet is fighting some kind of battle
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