Azathioprine and Behcets

[TigerLily42]

Hi all. I went to my Liverpool appointment last week and they have now officially diagnosed with Behcets (it was incomplete/likely Behcets last time I went) and started me on azathioprine. I was just wondering how people have got on with this and if it helps at all? I know it is different for everyone and everyone's symptoms with Behcets differs. The main issue for me is now the joint pain. The ulcers seem to be all but under control due to the colchicine. I do still get them, but nothing compared to before the colchicine. I still suffer with fatigue and headaches/migraines too. Really hoping the azathioprine does help as I struggle with the pain some days, and even walking/driving hurts! Thanks in advance.

[Ayea]

Hi TigerLily42,

I'm probably 6-12 months ahead of you in terms of diagnosis and treatment. Like you, I was first put on Colchicine which was very effective at controlling the ulcers and helped a bit with the skin pustules. I still got the pustules though and I continued to have strong joint pain and fatigue.

They next added Azathioprine. I have been on that for 9 months and I'm sorry to say, in terms of joint pain, it has not added much over the Colchicine alone. I do think it is helping because I no longer have severe flares. However, I have almost continuous joint aches and stiffness day to day. It's not uncommon for me to wake up feeling like I have been beaten with a baseball bat if I have over done the exercise the day before. I also have a generalised feeling of inflammation that is a bit like having the flu all the time. Quite often at night my wrists ache like hell. So, the azathioprine has not helped me with this.

I have heard of people getting years of remission from Behcets symptoms by using Azathioprine though, so fingers cross you are one of the lucky ones :o)

[TigerLily42 in reply to Ayea]

Hi Ayea,

Thanks for your reply. Sorry to hear that the azathioprine hasn't been of much help for you regarding the joint pain. I know what you what you mean, I feel like I have been hit with a baseball bat today with the aches and pains! I suppose I just need to give it time and see if the azathioprine does do anything to help me!

Thanks again and I hope you are feeling ok

[Ayea in reply to TigerLily42]

... well the aches and pains are pretty awful at times and they make me feel tired more easily... BUT, I am SO MUCH BETTER now than before diagnosis and treatment, that I am actually quite grateful this is all I have to deal with!

I mean, before diagnosis it could be hell on earth - mouth ulcers everywhere, boils everywhere, feeling like you are being burnt alive, suffocated and crucified all at the same time... I look back and wonder how I made it through!

So, even though I do ache pretty much all the time, I actually count my blessings :0)

Just to say, Aza does take a long time to work. I'm sure the Docs told you this, but I can confirm it because I did bloods every 2 weeks for the first 2 months and you could see the WBC and other immune system markers steadily dropping. Took 6-8 weeks for them to reach the bottom of the range, where they have stabilised. So, you need to be on Aza 2-3 months minimum before you will have an idea how it is helping you. Like I said, Aza has not stopped my aches and pains, but thinking about it, I realise I am a lot more stable now. I never have those crazy flares and I never really get mouth ulcers. On the Colchicine alone I did still get the occasional ulcer, so the Aza is still worth it for me.

Good Luck!

[TigerLily42 in reply to Ayea]

Glad to hear you are better than you were. Yes, the docs said I can take a few months before I start to notice if it is working, and I have bloods every 2 weeks to begin with like you have mentioned. Only been on the azathioprine for 2 weeks so too early to tell yet! The colchicine is definitely helping my ulcers as I very rarely get them now compared to before I was on it! And the ones I do get are so much better than before too! Thanks again for your reply and help

[red_wine]

I was diagnosed with Bechets around 15 years ago after a blood clot in my brain. I took Azathioprine for around two years following this and have not had a major flare up since. I do still get minor symptoms like ulcers, stiff joints and tiredness but it’s low level and manageable.

I don’t know how good it is for your body but it does seem to work. I questioned my consultant about it being carcinogenic but his feeling was that the potential risks from Bechets were far greater than the risks associated with Azathioprine. At one point I was sent for an ultrasound to check for fat on my liver which can also be a common side effect and I used to experience hives/unbearably itchy skin in strong sunlight.

[TigerLily42 in reply to red_wine]

Hi red_wine,

Thanks for your reply. Sorry to hear what you went through. I hope you are doing ok now. Yes, they talked me through all the side effects of it and I have to go for regular blood tests to check my liver function and all that. I will see how I get on with it and if it helps me at all!

Thanks again for your reply

[Icefire]

Hi there,Could be coincidence but my joint pains vanished when I took part in Zoe Nutrition study and started to keep my blood sugar a bit more stable. I eat pritty much what I want to but what I want to eat has changed.

I think that large amounts of rice, potato, pasta and sugar give me joint pain. I can eat small amounts mixed with veg, meat, nuts, eggs etc.

You can get the gist of what they advise just by listening to their podcast. You don't necessarily need to pay a fortune to take part. Glucose goddess is a good read to. My health has improved significantly since giving up ultra processed food as much as I can. (See Dr Van Tulleken book / podcast).

One thing I can't seem to get rid of is Erythema nodosum at the mo. I'm trying to work out what causes them. I have a rudolf special on the end of my nose right now two months to early!!

Good luck with the new Azathioprine.

[TigerLily42 in reply to Icefire]

Hi icefire. I have looked at my diet as part of everything and am trying to eat foods that help with inflammation. I have looked into the Zoe diet as well. Not looked at the glucose goddess yet, so will take a look! Thanks for your help and advice. Hope you are doing ok

[NatSprat]

Hi, I am on the same - azathioprine. I was recently told to take them for a period of time, see how I got on with them, but during that time a lot of my symptoms with behcets were coming back and worse, I decided to call in which they booked me an appointment to come back and discuss other options. They then told me it can take up to 3 months for you to see any sort of help from the azathioprine, so now I’m on a 3 month course of them. My suggestion would be to really stick it out for some time, allow the medication to actually work and get into your system properly, I know it’s horrible getting your symptoms back, but if it’s not working after a few months definitely mention it in an email or your follow up appointment.

[TigerLily42 in reply to NatSprat]

Hi NatSprat, thanks for your reply and your advice/experience with azathioprine. Really appreciate hearing from people about it. Yes, Liverpool advised that it can take up to 3 months before I notice anything and have prescribed me enough for that amount of time. I have been in them for just over 3 weeks now, and so far have had no side effects or anything like that. My joint pain has eased off ever so slightly compared to what I usual have. So will just carry on with it and see how I get on!