Some of you may remember i took my delivery of Rebif on the 25th June. That will be 3 weeks ago on Tuesday. I have still had no contact from any nurse (Rebif or MS) about starting. I have left a message for my nurse on her voicemail and the main switchboard, to no avail.
I have spoken to my patient services co-ordinatior at Bupa home healthcare, who contacted my nurse and said i should hear from her in a couple of days, and said she had no idea why my nurse hadn’t arranged things, that was on Tuesday and still no word. I know the nurses are busy and don’t want to keep nagging her, but at the same time thought i’d got past the limbo stage.
Did anyone else have this big wait between getting your drugs and starting on them? I have another delivery coming on the 23rd July (2 days before my birthday :-(). Am i being unrealistic about waiting times? Just feeling lost with it all, was all geared up for starting and now feel i’m loosing momentum, it’s starting to affect my mood.
Hi Laura. The service i received was much better than this. Once my rebif was delivered i rang my nurse and went in to hospital within days and did my first injection with him (male nurse). You can’t do much more than you have already other than wait for the nurse to contact you. Very annoying! It could of course either mean the nurse is very busy/is off sick/or on holiday at the moment - there will be no-one covering her work load. Teresa.x
Ring your co ordinatior again. I started rebif in November and I have an injection nurse who works for the company who makes Rebif. She came out a couple of days after delivery to do my first injection and is always at the end of the phone if I need her. My co ordinator at Bupa also liaises with her and I have always found them to be brilliant. Also if my nurse is on holiday there is a rebif helpline which I think there is information on in your pack. Hope you get it sorted. X
That seems a long wait to me. While I totally agree with you about not wanting to keep nagging her, you seem to have been left waiting and I guess, if , for wanting of a better word, you have to nag her, then that is what you’ll have to do. I think you’ll have to keep phoning, always being polite and also explain that you feel that you are starting to lose a bit of momentum with the whole thing. Unless, of course, you just go ahead and follow the instructions and do it yourself anyway, since you have all the stuff. The only reason I suggest this is that when I first started it I was left on my own with it, had to go to hospital pharmacy to pick it up and everything but I digress, you really should wait until you see the nurse since this is obviously what happens these days. Cheryl:-)
I know my nurse was on holiday the day i had the delivery but have been told she is back now, just not returning my calls.it would seem. So frustrating as before i had a different nurse who was really helpful and now i have a this nurse (she deals with all the DMD patients) and have to say not been that impressed. Thanks everyone for your help, I guess the consensus is just keep on at them untill i get an answer! Feel like i have no fight left in me though after being in the limbo stage. One last push i guess.
Laura x
Ps. Xander it’s a disease modifying therapy, injected 3x a week just under the skin. Have a look at the msdecisions website, they have a lot of information on all the injections approved for use in ms patients.
I would think even if your nurse is back off her hols she will now have a backlog of work to catch up on. Hopefully she will be in touch soon. I don’t think they have anyone to cover their work during hols/sickness. Teresa.x