Afraid to start Colchicine and Azathioprine for Behcet's

[Ryokan]

My son has just been diagnosed with Behcet's and prescribed colchicine and azathioprine. He is afraid to start taking them, fearing that the side effects will make him miss work (he is a roadside mechanic for the AA working 12 hour shifts and 58 hour weeks). He has already been off ill 6 weeks this year and cannot afford to miss anymore work. Are the medications as bad as they sound? Any suggestions as to what he could do? Thanks

[Ayea]

Hi There,

I take both and have no side effects what-so-ever. I don't think that is so unusual either.

I was started on the Colchicine first to see how I tolerated it and how well it worked. I take 500mg twice a day after a meal (I take it after breakfast and dinner - that's quite important, if I take it on an empty stomach it can cause IBS like symptoms). The colchicine has significantly reduced the incidence and severity of the ulcers and the pustules I was getting all over my arms and legs. It has not helped with the aches and pains, the flu-like symptoms, the joint and muscle stiffness etc. Don't eat grapefruit if you take Colchicine, it can make it much stronger.

My Rheumy then added Azathioprine, to see if that would help the pain and also to protect my eyes (Behcets activity caused a blood clot in one eye). I take 150mg a day - again I split the dose into morning and night as that is said to help to reduce adverse responses. Again, I don't even notice I am taking it. No problems at all. I can even take this on an empty stomach if I need to. Unfortunately, it does not help me in any way that I notice. I still have all the pain etc (although it is suppressing my immune system as that can be seen in the blood tests). When you start Azathioprine, the Doc should be doing bloods every few weeks to make sure the dose is correct. Best to avoid taking it with dairy as that can reduce the absorption of the drug.

People do have adverse responses to both of these drugs, so I think its unwise to start both at the same time. If you have a problem, you will not know which drug is causing it. Ask the Doc if you can start the Colchicine first - you will probably know within a week if you can tolerate it... from what I've read, if it upsets you, it will happen quickly.

Good luck!

[Ryokan in reply to Ayea]

Thank you so much! I really appreciate the info and your personal experience. Hopefully it will help to set my son's fear of taking the medications a bit at ease. Thanks again!

[magician]

hello Ryokan,

Short answer: it depends on the dosage.

I was advised to take 1 mg of Colchicine daily, eventually reduced to half mg daily ( still taking it after almost 20 years). The reduced dosage was due to the muscle pains which the doctor suspected was being caused by the colchicine.

I cannot remember the dosage of the azathioprine. Aza was eventually discontinued and replaced with Humira.

Initially, I shared your son’s anxieties over these 2 medications. Like Ayea, I had monthly blood tests to I did not have adverse side effects. No side effects showed up on the blood tests, though as mentioned, colchicine was suspected for causing muscle pains.

Perhaps your son can seek his doctor’s views regarding the idea of Phasing them in, and distributing the dosage.

All the best

[Ryokan in reply to magician]

Thank you. I really appreciate your imput and will pass it along to my son. Also good to know there are alternative meds in case of side effects. Thanks again!

[SadandW0rr13d]

my son has been diagnosed with Behçet’s and affecting his eyes he is only 28 lost majority of sight in one eye and it has started in his other eye, he also is a mechanic, so far he is taken steroids, but supposed to be going on methotrexate next week, but is resisting going on them because of the side affects, so is hoping to stay on steroids until he finally gets an appointment at one of the Behçet’s centres, I’m just hoping the steroids will be enough for now. I have been so worried for him.

[magician in reply to SadandW0rr13d]

Hello SadandW0rr13d

it turns out that I have had Behcet since childhood. It became diagnosed in my mid 40’s when Behcet hit both my eyes. I could hardly see with one eye and the other one was just slightly better.

The good news is that my visual acuity has returned withi a few months of treatment.

I was given emergency/maxiumum dose of steroids and azathioprine. Steroids can damage our bodies in many ways, and i was not doing too well with azathioprine. I was eventually shifted to Humira (2012) and colchicine (can’t remember year).

In terms of side effects, my blood tests do not show any negative indicator. However, I do have unexplained symptoms that come and go - doctors cannot really tell if these are side effects or just one of those random things. At any rate, these “symptoms” are not too onerous and quite tolerable - not too bad considering what is at stake.

I have no knowledge of methotrexate - I guess your son has researched it well enough to be worried about the side effects. Maybe he can explore other treatments with his doctor?

All the best

[Ayea in reply to SadandW0rr13d]

Good lord! Do the Behcets Centre know about the loss of vision? I thought if you had any vision loss you would be put straight onto one of the biologic meds. You would think he would be rushed in for an emergency appointment if there is a serious risk of your son going blind. My opthamologist found a retinal vein occlusion in my eye and told me I was lucky to have no noticable vision loss. He told me that in his opinion the best medication to protect the eyes in Behcets patients are the biologic meds. He recommended Infliximab (Remicade) for me - maybe methotrexate is a similar thing? Your son should really give it a try, not everyone gets side effects from these meds and for many the side effects from the steriods are worse. Surely nothing is going to be as bad as going blind?

[SadandW0rr13d in reply to Ayea]

I spoke to a lady on the Behçet’s help line she mentioned the Biologics meds, the rheumatologist back in jan when we found out didn’t put him on anything said he thought it might not happen again and didn’t refer him, he had a steroid injection in his eye but no meds, I’m very frustrated that it’s not been referred straight away, and if the referral hasn’t been stressed as urgent it could be months, so very worried, unfortunately he never wants me to go with him, he’s doesn’t live at home now and very independent

[Ayea in reply to SadandW0rr13d]

You or your son could contact the Behcets Centre directly (whichever one your son has been referred to - their contact detail will be on their website). Ask them if they have received your son's referral and make sure they are fully aware of what has happened with his vision. It will make you feel better if you know they are fully aware of his situation. If they need to have a new referral sent that gives more detail about the loss of vision, then his GP can email a referral directly, it does not have to be a Rheumy.

[SadandW0rr13d in reply to Ayea]

My son got a copy of his referral to Birmingham yesterday I will ask him to send a photo of it to see what it says , I did think I’ll have a look at contacting them or at least get him to as assuming they wouldn’t speak to me about with him being 28, he’s a typical lad a bit laid back, I have to push him and he believed what the Rheumy told him, it’s been a battle with him , he’s recently moved into this house and managed to get an appointment at his doctors now so he can talk to him about the situation also

[Islandbechet]

HELLO from Dominican Rep It is a big step for him to improve his symptoms, its a personal decision to move foward. Im in that treatment for over 4 years, and I have a life, without I don’t function and others symptoms appear.