Finally got a really good consultant after com... - Behçet's UK

Behçet's UK

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Finally got a really good consultant after complaining, she was lovely and did what a doctor should do. I've got the option on two drugs now

Kerry1 profile image
4 Replies

Azathrioprine or Methortrexate. Can anyone advise me on their experiences on these drugs??? I know we will react differently etc but I would love to hear your thought?

Many thanks Kerry xxx

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Kerry1 profile image
Kerry1
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4 Replies
bailey23 profile image
bailey23

Hi Kerry

I can only talk about my experience but everyone reacts differently. I was started on Azathioprine and reacted by being violently sick about an hour after I took it. I was changed to Methotrexate and have been on it over 3 years and have had no problem except the odd headache the day after taking it. But I have read many sufferers take Azathioprine with no side effects so it really is an individual reaction.

Hope this helps and really glad you finally have seen a nice Dr who knows what they are talking about.

Can I ask, was this at a Centre of Excellence or at your local hospital?

Hugs

Angela

xx

billi profile image
billi

Hi Kerry,

As Angela has said only in my case it was the docs who took me off azathriopine. They tried a few other meds and eventually I started colchicine which was wonderful for me. Six years of remission whilst on the drug and another 3 after. I had a few tummy issues now and then but prefer that side effect compared to BD as I at least got a life back for quite a while.

Good luck

Hugs and Smiles

Billi

andreafm profile image
andreafm

Hi Kerry

I too was violently sick and diarrhea, hair loss and extremely tired on Azathioprine and it didn't really help the symptoms anyway so had to stop it, but I understand this doesn't happen with everybody. There is a blood test that they can do before to test your likelihood of suffering the sickness etc, which narrows down the chances of this happening.

Also had the methotrexate which did work better on the symptoms for me and you don't have to take it every day [which is good] but had to be stopped as it affected my breathing.

I was also given Mycophenylate [Cellcept] and that made my Liver enzmes go through the roof.

I am now on Infliximab Infusions which so far has been the best for me but the doctors usually try all the other Immune Suppressants before the consider going onto Infliximab.

All these types of medications are a trial and error process and the Doctors will give frequent blood tests to make sure that nothing bad is going on.

Hope this helps Kerry

Andrea

Kerry1 profile image
Kerry1

Thanks everyone who answered my question. Why can't you have a drug that doesn't give you side effects??? Xxx

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