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AZATHIOPRINE Is it the right treatment?

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9 years 6 months ago #54945 by The.frenchgirl
AZATHIOPRINE Is it the right treatment? was created by The.frenchgirl
Hi everyone

I have been on Azathioprine since February and I am going through its side effects ( skin rash, infections, asthma, tired, cold)

Is anyone going through these side effects?

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  • mrsb04
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  • ITP since 2014. Retired nurse. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use.
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9 years 6 months ago #54949 by mrsb04
Replied by mrsb04 on topic AZATHIOPRINE Is it the right treatment?
Quite common side effects I'm afraid.

What other meds have you tried?

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  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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9 years 6 months ago #54951 by Sandi
Replied by Sandi on topic AZATHIOPRINE Is it the right treatment?
I have used it for another autoimmune disorder and couldn't tolerate it, so I stopped. Have your counts responded at all?

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9 years 6 months ago #54959 by The.frenchgirl
Replied by The.frenchgirl on topic AZATHIOPRINE Is it the right treatment?
Hi,

Steroids at very first but my body did not respons to them. So My doctor gave me azathioprine.

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9 years 6 months ago #54960 by The.frenchgirl
Replied by The.frenchgirl on topic AZATHIOPRINE Is it the right treatment?
Hi Sandi.

I'm scared to stop it incase if I lose my platelets again.

And well in february I was on 16 when I started it and now I'm on 43.

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9 years 6 months ago #54963 by Rob16
Replied by Rob16 on topic AZATHIOPRINE Is it the right treatment?
I am not familiar with requirements in GB, but you might look into eltrombopag (Revolade or Promacta) or romiplostim (Nplate). They help stimulate platelet production rather than affecting your immune system.

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  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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9 years 6 months ago #54973 by Sandi
Replied by Sandi on topic AZATHIOPRINE Is it the right treatment?
My suggestion would be to talk to your doctor about alternative treatment options. You don't have to live with the side effects if it's possible to try something else.

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9 years 6 months ago #54976 by The.frenchgirl
Replied by The.frenchgirl on topic AZATHIOPRINE Is it the right treatment?
I'm going to ring my doctor... Because my face is getting worse everyday. Even if I got prescribed an antibiotic cream.. It is still getting worse and more itchy everyday and it is making me sad because my face just looks awful :(
But if I change my treatment I just hope I won't lose all my platelets... Or maybe by reducing the dose of azathioprine might help.. I don't know

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9 years 6 months ago #54978 by The.frenchgirl
Replied by The.frenchgirl on topic AZATHIOPRINE Is it the right treatment?
My doctor does not want me to stop the treatment. And does not want to change my treatment.

I asked her to transfer all my documents at durham hospital ( because I will be spending all summer in this place ) and she does not want to transfer my documents to another hospital.

she is useless

I'm going to lower my dose of azathioprine and see if I get better or at least not worse

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  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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9 years 6 months ago #54984 by Sandi
Replied by Sandi on topic AZATHIOPRINE Is it the right treatment?
Is it really up to her to keep you from transferring? It's like she's holding you hostage. You should have a right to see a different doctor and discuss other options. You don't have to be miserable and you need to advocate for yourself.
The following user(s) said Thank You: The.frenchgirl

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9 years 6 months ago #54985 by The.frenchgirl
Replied by The.frenchgirl on topic AZATHIOPRINE Is it the right treatment?
Well, it is what I thought and it was a bit mean from her saying no to that when I want to see another doctor:(
So I will ring her again next week, saying I want my documents and all my records to be transferred
I just wish I could stop that treatment but I'm scared to lose my platelets plus I'm going on holidays in 10 days so I really don't want to lose my platelets

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  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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9 years 6 months ago #54990 by Sandi
Replied by Sandi on topic AZATHIOPRINE Is it the right treatment?
Just hang in there for now. Keep pushing for the transfer, go on your vacation and have a good time. When you get back, deal with the doctor stuff and we will be here to cheer you on!

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9 years 6 months ago #55019 by The.frenchgirl
Replied by The.frenchgirl on topic AZATHIOPRINE Is it the right treatment?
Hi,

So after this call to my doctor I decided to lower my dose of Azathioprine. 50mg instead of a 100mg.
My face was hurting me so much, very dry and burning. I could barrly smile because it would hurt my all face and it was very itchy.
3rd day with my new lower dose and guess what my rash is nearly gone and it is not itchy anymore. I touch wood for my rash to desepear and hopefully by taking a lower dose I won't loose my platelets

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IMPORTANT!

The Platelet Disorder Support Association does not provide medical advice or endorse any medication, vitamins or herbs. The information contained herein is not intended nor implied to be a substitute for professional medical advice and is provided for educational purposes only. Always seek the advice of your physician or other qualified healthcare provider before starting any new treatment, discontinuing an existing treatment and to discuss any questions you may have regarding your unique medical condition.