How does this keep happening? Jinxed: So I have been... - NRAS

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How does this keep happening? Jinxed

Someonesmother profile image
22 Replies

So I have been patiently waiting for the enbrel to be delivered. I ring today to enquire and no one seems to know where it is, although we did get a delivery last week of two lots and we gave it all to a patient. I am starting to suspect, after being given three different stories, they gave that patient mine as well. Grrr. I am now well on the way to a huge flare and I guess i will not see anything now until after Easter. How am I jinxed like this? Geez

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Someonesmother profile image
Someonesmother
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22 Replies
cathie profile image
cathie

So sorry, they should be able to get you some... In the meantime take things easy to deter more flares xx

Someonesmother profile image
Someonesmother in reply to cathie

hahah I cannot believe it. Things just keep going wrong, I am sure I am Murphy's law epitomised. I am struggling as I have to go to work. I had last week off with the heart op so need to be there this week. Only 2 more days until Easter break so I will struggle through

cathie profile image
cathie in reply to Someonesmother

Sounds like taking things easy is a bit of a big ask. Bon courage

Someonesmother profile image
Someonesmother in reply to cathie

Yes it is at the moment. Oh well back to the waiting game for me

Azabat profile image
Azabat

I wish I could conjure some up for you! I admire your commitment to work, and If I come across Murphy I promise to kick him some-place tender! xx

Someonesmother profile image
Someonesmother in reply to Azabat

Yep wait until I get my hands on Murphy, he has a lot to answer for.

Ali_H profile image
Ali_H

I think you'll find that Murphy has run for the hills!!!

What can I say the whole situation is outrageous and I can't get my head around the fact that they can say that they got two lots and given it to a single patient and then not set about getting yours back or re delivered and then I think how come the other patient hasn't quired Her/his 'over allocation' this month. I got two lots of one med last month and queried with the chemist if they had given me the right quantity and the rechecked the prescription to see if they'd made a error or not, it was correct but I would question again if I thought it was wrong as I would be horrified to think I had taken more than my quota and that someone else would be going without because of that.

I so hope that the med works for you after all this waiting.

All the best

Ali

Someonesmother profile image
Someonesmother in reply to Ali_H

This a special delivery on compassionate grounds so it was not through a pharmacy it was delivered by the company and I am not sure if they gave both lost to the other patient I am surmising from my conversations that may be the case. I guess i just wait now and see what happens. No point ringing anyone again no one knows what is happening anyway

magglen profile image
magglen

Keep phoning the Enbrel company and make a nuisance of yourself. It is appalling that you are without your medication. Can your GP and/or RA department help to pressurise them too

Someonesmother profile image
Someonesmother in reply to magglen

It is a compassionate delivery and only through the drug company. No one seems to know what has happened or where mine might be so I guess I have to wait. It is not through a pharmacy so I have no idea how to chase it up apart from what I have done. Just my incredible bad luck that stupid things keep happening to me.

magglen profile image
magglen in reply to magglen

I receive my Enbrel from Healthcare at Home. Email address ROCS@hah.co.uk. Phone number 0845 601 2816 [the number I was given to organise a delivery]. 0870 600 1540 [Head Office]

Address:- Healthcare at Home, Fifth Avenue, Centrum 100, Burton on Trent, Staffordshire, DE14 2 WS

Good luck xx

Someonesmother profile image
Someonesmother in reply to magglen

Thank you, but that won't help me I live in Australia. It is being done directly through the drug company on compassionate grounds so I now just have to wait until I hear something I suppose.

magglen profile image
magglen in reply to Someonesmother

Oh sorry, I didn't realise you didn't live in the UK! I do hope you don't have to wait long for the drug company to get their act together. Enbrel is a great medication which has me back on my feet. All the very best xx

Someonesmother profile image
Someonesmother in reply to magglen

Thank you, you didn't know. but glad to know that others will have the benefit of your knowledge. I was told today next Wednesday. Not holding my breath though

magglen profile image
magglen in reply to Someonesmother

Think positively and have faith! xx

Someonesmother profile image
Someonesmother in reply to magglen

I live in hope hahahah

magglen profile image
magglen in reply to Someonesmother

Hope helps us to survive the sh*t of life!!

Someonesmother profile image
Someonesmother in reply to magglen

Sure does. Mind you I have come close to just giving up.

magglen profile image
magglen

I just hope you have people around you to encourage, support, care and and give you the hugs you need when you need them. A big cyber space hug from me. xx

Someonesmother profile image
Someonesmother in reply to magglen

I have cyber friends who are very supportive and thank heavens all the wonderful people on this page. My husband is older and from another era, so not very helpful. He has also just been diagnosed with prostate cancer.

magglen profile image
magglen

You do have a lot on your plate. I hope your husband's cancer has been caught early. There are great treatments these days

Someonesmother profile image
Someonesmother in reply to magglen

well that is a bit if a story, he has been to one urologist that right from the start before he knew anything, was saying oh because of your age (75) we probably will do a watch and wait. Anyway MRI and we went back and he says well there are 4 areas of concern but it is on the low side so we won;t do anything as you will probably only live another 10 to 15 years so we will get you back to see the nurse in 6 months. Your PSA is very high which indicates that there may be something more serious going on, but I suggest we watch and wait. WTH??? I went back to GP and told him I wasn't happy so he wants to see my OH again and do another test. if his PSA has gone any higher then he will send him for a second opinion. OH does not take things in as he is pretty deaf and has very early dementia or something. I have also spoken to GP about that too.

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