Both my GP and the Rheumatologist are on annual leave for two weeks. His secretary is very unhelpful, my pharmacy told me to speak to a GP. Only one for the whole surgery available so unable to do telephone consultations and no face to face appointments for two weeks. I will have to call the Rheumatology helpline tomorrow but after a very distressing conversation with a nurse last week I am very loathe to do so. Fingers crossed it is one of the others who are lovely that gets back to me 🤞🏻
I hope you are feeling a bit better - it sounds like you have managed to get things moving in the right direction! Well done!
I take both colchicine and azathioprine at the same time. Of course, you need to confirm that is what your Rheumy would like you to do - but I believe this is quite a common combo for Behcets.
I take 0.5mg Colchicine twice a day and I take 50mg Azathioprine twice at day (for a total of 100mg).
Things to know...
Take both with food if you find they cause you to have an upset stomach (this helps a lot).
With the colchicine, you cannot eat grapefruit, it causes the colchicine to build up in your system (which is a bad thing as it get toxic quite quickly).
With the Azathioprine, it is advisable to do a TMPT test before you start. If your TMPT level is low, you are more likely to get side effects from the Azathioprine. If you have not had this test then it will be important to get your blood markers tested regularly - I did every 2 weeks for the first 2 months. Your GP or Rheumy should be monitoring you in the first weeks of starting the Azathioprine (especially if you have not had the TMPT test) as it can cause strong side effect in some people.
Having said that I had no problem with this drug and I think most people are fine with it.
Ideally you should avoid taking azathioprine at the same time as dairy -- it's not the end of the world if you do, but the dairy can reduce the absorbtion of the azathioprine, so it's less effective.
The azathioprine takes a long time to work. It was about 6 weeks before it lowered my white blood cell count and other immune system markers to bottom of range.
Good luck. I hope it helps you. At least the Docs are now aware of your situation and taking it more seriously
Thank you so much. No no TMPT test, and no one monitoring my bloods. My GP has not even been notified.
I am not very well currently, my gut is just not working. My bladder and bowel nurse put me on 5 laxatives a day and now I am completely impacted. God I feel lousy honestly, gut cramps nausea, heart rate of 158 last night I just could not lie down. Only one GP available at my surgery and constipation is not a priority I am trying to get hold of the bladder and bowel nurse but no luck so far.I think I will hold off taking the DMARDS until such time that I can be monitored and advised adequately. Still waiting for the Rheumatology Helpline to get back to me 🤞🏻.
Thank you for responding and for the tips. I am on Colchicine twice daily and had awful diarrhoea with it for weeks but have been ok for the past 3 years. I take Hydroxychloroquine too.
I guess I will take it with breakfast when I start it which is fine as I use coconut milk substitute KoKo on my cereal. I am vegetarian so do eat cheese and eggs normally.
I am very fed up and sick of myself currently but I sincerely appreciate your advice and kindness xx
The azathioprine usually can be taken with colchine, and steroids.
The azathioprine will take months to assist you with pain and flares, in the meantime you have to take blood tests during several weeks to check if the function of your liver and kidney are stable .
Due to the slow process of Azathioprine, and while you wait, steroids are the only option to treat pain and flares.
Summing up, all this information was what happened to me a couple months a go. My immunologist told me to keep taking steroids whilst azathioprine was being buildup in my system.
Unfortunately my kidneys and liver weren’t functioning properly so the doctor replaced the azathioprine with MTX. But I read about other patients which asathioprine it did helped after the a month or so.
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