Crohn's Disease Forum » Support Forum » Specialist signed me off from hospital - Advice needed!

09-08-2016, 08:16 AM   #1
Join Date: May 2014

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Specialist signed me off from hospital - Advice needed!

I saw my Specialist for Crohns this morning and I've been having trouble with him for a while. The last time I saw him without my permission he emailed my GP telling her to cut my medication down (Azathioprine) from 100mg a day to 50mg a day. I never agreed to this and after speaking to my GP, she started prescribing the normal dosage again.

After seeing him today he has signed me off from the hospital. I told him straight up that Azathiophine works for me and I've tried others he has recommended, even the ones that specifically say 'Do not take if you have Crohn's disease, will cause a flare' in the instructions. Nothing works as well for me as Azathioprine and my blood tests always come back perfect.

He then told me he needs to cover his back in case I get an infection and get submitted to hospital and that he had to at least try and cut down my dosage in case he loses his job. WHAT!? He then told me he wants to see if I flare up without the Azathioprine, which I know I will as it happened before when I wasn't on them.

I literally have a job, trips planned and a life and he wants to experiment with my illness essentially. When I didn't agree, he told me he is telling my GP I am no longer under him, I asked him what happens next and I got no response. He then gave me blood test forms to continue monitoring me. So confusing.

I'm shocked and appalled and scared at what will happen next. Can anyone give me any advice?

I'm in the UK. Will my medication stop whilst I am now signed off? Surely not when I could get potentially very sick?

Last edited by Edwards667; 09-08-2016 at 08:51 AM.
09-08-2016, 08:28 AM   #2
my little penguin
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Join Date: Apr 2012

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Assume your in the UK or Australia since your gp is prescribing the med instructed by your Gi .
Your gp and GI can "talk" as much as they want about your care and can change meds /dosage at their discretion
Most as good Gi will discuss treatment plans and include your input .
Most Gi do try to go with the lowest dose possible so once a patient is stable they will lower the dise since a lot of patients are ok on a lower dose and this decreases the risk of lymphoma /skin cancer and infection the longer a patient is on Aza the higher the risks
And most studies show that prolonging that use doesn't reduce the risk of surgery
If you start to flare then they raise the dose

Ds is currently on a high dose of everything
But his arthritis is harder to control than his crohns
Hence the high dose
Once things are stable for 6-8 months then we will possible try to lower the dose

As far as what to do you will need to get a referral to another Gi
Assume it would be at the same hospital and it is probably in your records that you are going against meducal advice

When we have things planned
We try to discuss postponing trying xyz until such and such a date
Typically summer since Ds is out of school

Will your gp still prescribe Aza without the guidance of a gi?

Is that allowed ???
DS - -Crohn's -Stelara -mtx

Crohn's Disease Forum » Support Forum » Specialist signed me off from hospital - Advice needed!
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