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26 Jan 21, 12:17 PM |
#31
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Thread Starter
Imagineer
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I have just read the ten page information pack on infliximab and I am quite honestly in a panic, my chest feels like it’s going to explode.
Surely this medication is only if the Azathioprine doesn’t work? He won’t have them both? No one has mentioned infusions or anything, I have never heard of this drug. I was told that if the Azathioprine wasn’t suitable he would go on mercaptopurine. I am so confused. |
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26 Jan 21, 12:19 PM |
#32
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Thread Starter
Imagineer
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26 Jan 21, 12:22 PM |
#33
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Thread Starter
Imagineer
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We did look into this in November but was told that only his initial appointment would be quicker because a lot of private hospitals are being used to operate etc on NHS staff to help the load of covid. This was a constant in Manchester that also works at Manchester children’s hospital where my niece works.
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26 Jan 21, 12:30 PM |
#34
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Very Serious Dibber
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Please don't panic. Infliximab is administered via an infusion, on a slow drip, at regular intervals. This is done on an outpatient basis at hospital. I know the leaflets and the long list of potential side effects are super scary but I can honestly say, from personal experience, that this treatment can be life changing. It may well be the case that they are just introducing you to some of the possible treatments, that Mason may - or may not - need down the line.
That's all I can think of but as you already know he will need regular blood tests to spot any issues. I know many people for whom Azathioprine worked very well, keeping them in years-long remission, with little or no side effects. Mason could well be one of them! |
26 Jan 21, 01:12 PM |
#35
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VIP Dibber
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Extra prayers for your brave little man from now until he is fully recovered,I cannot say I know how you feel,nobody knows what you're going through,but have faith.May God bless you both.
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26 Jan 21, 01:19 PM |
#36
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Imagineer
Join Date: May 08
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It’s a lot to take on board and you need to speak to someone professional before you can do anything. There must be something you can do, sending love to you and Mason and hope you get it all sorted and get some answers xx
__________________
2004 Kissimmee 2006 Bahama Bay Davenport 2008 Bahama Bay Davenport 2012 Regal Palms Davenport 2016 Glenbrook/Bradenton 2018 Hampton Lakes/Cape Coral Always dreaming Of Florida! |
26 Jan 21, 01:24 PM |
#37
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Imagineer
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Hi FT, I was just looking at the Linacre Centre website as my dd needs a blood test and noticed this
"Please also note that we do not take blood from children under the age of 12. Appointments for children under the age of 12 are available by ringing Platt Bridge Paediatric Clinic on 01942 481345 or 01942 481151." You will probably be able to get Mason tested there rather than travelling all the way back to Alder Hey xx |
26 Jan 21, 02:56 PM |
#38
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Thread Starter
Imagineer
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26 Jan 21, 03:01 PM |
#39
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Thread Starter
Imagineer
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The IBD guy has just returned my call (and email) I don’t think he is very happy with me and all my questions 😓
He said that Mason’s consultant told him to send me the information pack. He said it could be in case the Azathioprine doesn’t agree with Mason or it could be used as well as the Azathioprine. He stated that he and his colleague have over 400 patients to deal with so unfortunately Mason is not the number 1 concern. I feel like I have been told off. I don’t mean to pester I am just worried. |
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26 Jan 21, 03:23 PM |
#40
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VIP Dibber
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Mehh ignore his attitude, did you get the answers you needed? Incidentally I once saw the same consultant privately as I had previously seen at a NHS clinic Iand I had to check it was the same bloke he was so different.
Edited at 03:25 PM. |
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