This is day 9 of 50mg of Azathioprine. Havent felt great on it since day 1 but thought i would give all of the medicines a good go. I have nausea, tummy cramps, cramps in my lower back which a quite sharp and go up my back, my urine went really dark last night and about 10 minutes after i take it my whole body goes clammy and sweaty! And i just generally feel bad! Going to call the consultant tomorrow as im due to double the dose friday and just dont think i will be able to cope with it. Does anyone experience any of these side effects?
Thanks
Very sicky Jo x
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joannebond360
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I had terrible side effects never felt so ill!! White blood count drop dangerously low, was terrified to take any imunosupresent for a very long time. Voice contact erns, see if you can get a fbc before seeing consultant and take results with you to appointment.
I havent been on this but have heard from others on it that it can really knock you for six. I would take a detailed note of all your symptoms and take it to specialist.
I have just been put on these, well not just, was prescribed them over a month ago but was delayed in taking them due to a nasty chest infection. They wanted my immune system to do something good before giving it a kick up its backside with these drugs. I too are worried about taking this potent drug (Originally used for cancer treatment) and although I have been put on antibiotics again so didn't want to start taking them just yet my GP has said not to worry and gave me a prescription to start tomorrow, all she said was loads of people are on them for various diseases and the blood tests my Consultant did would have ruled me out for any know major risk to the drug. Of course other effects can still occur but we watch for them with monthly blood tests. So that last bit was meant as reassurance probably. My consultant did however originally tell me I could contact him or his secretary at any time if I was worried. So my advice would be if you are worried about taking them or any effects you are having to contact your consultant and ask them about it, and if your really not happy on them to get them to try something else. After all its your body, and you know how you feel and what agrees with you and what doesn't. Although nausea is expected when you first start taking them and the advice about eating with them is whats recommended until it settles.
The nausea and tummy cramps are a side affect of the Azathiprine. The dark urine and cramps sound like dehydration or electrolyte imbalance, which I get frequently with medications. So you should contact your doctor and like the advice above says, get a full blood test.
There is a blood test called TMPT to check if you are likely to get these side affects but not all doctors check this before giving people Azthioprine. Although it is still more than possible to get side affects even if the blood test proves o.k but it is a least a clue.
I have had to stop 3 different immune suppressants so far and am waiting to try the 4th and so it can be a bit of a trial to find the right one.
Hi Mike. My consultant also said that lots of people use aza and they are widely used. Still scary to take them, I was petrified after taking the first one and spent the whole day waiting for something bad to happen. Hope your chest infection gets better soon and you get on well with the aza. Keep us posted
I had a better day in the end yesterday, less nausea and tummy cramps so maybe I will settle down on them. Here's hoping!
Hi Andrea, they did do a blood test before hand and I had one on thursday so I will get the results today. Haven't had the dark urine again since saturday so maybe it was just a one off. Absolutely dreading friday as I have to double the dose! Bet I just settle on this dose by then.
Really hope they find a tablet that works for you, fingers crossed for the next one!
The sickness is horrible, if it gets any worse when I up the dose on friday I will speak to them again and stop taking it, like you say we have enough to contend with on a daily basis! Are you taking any other medicine now? I loose weight easily with flare ups, even though I am eating more for energy, crazy!
I also get the heavy eyelids! Feel so tired but then I do with the bd also.
I also worry that if I don't give the aza a good go and see if it settles the next medicine might make me feel worse
Prednisilone alone kept me well for the whole of last summer but then started struggling on 10mg hence them starting Aza. Felt a little better today with the nausea so will keep an eye on it and will speak to them if it gets any worse after upping it on Friday. The tiredness is awful, never experienced anything like it.
Fab that you are having good weeks where you are well.
Addenbrookes are a good hospital, I see dr Jayne, every time I go I have to ask to see him or they give you any of the consultants, he is brilliant and I just like to see the same person every time.
Good luck with new medicine when you get it, keep us posted on how you go.
I was on aza, 50mg to start then up to 100mg. I felt quite sick and grotty with it. All i would say is get your bloods done and that will show if you are reacting to it. I had a severe reaction and didnt realise! I thought it was just the aza but my bone marrow stopped working and needed blood transfusions and platelets, iv anti biotics, barrier nursing and nutropenic diet shut in a side room for a few wks. If i had had my bloods checked earlier i wouldnt of got so bad and needing gcsf jabs to kick start bone marrow. Im hoping to fing a treatment that works but me and drs are weary! I know many people who cope fine with aza though. They give me cyclizine for sickness and is brilliant.
So please get your white cells, nutrofills and full blood count done asap.
Hope its just a side effect that will settle as your body adjusts.
Wow, that sounds absolutely awful and petrifying! You poor thing. Had my bloods back yesterday and all is fine, having weekly ones for now. Hate all these medicines. Finding it hard to be possitive in it all at the moment!
Are you ok now? Are you on any other medicine for the bd instead of aza.
Jo, can I just throw a word of caution into the works here - just a little one
We are all guilty of putting all our symptoms down to Behcet's or the drugs we take to help it along. Don't forget that you can suffer from other disorders too.
What's made me feel the need to say this is the symptoms you quote in your first post:
" I have nausea, tummy cramps, cramps in my lower back which a quite sharp and go up my back, my urine went really dark last night and about 10 minutes after i take it my whole body goes clammy and sweaty!"
These are classic symptoms of an ascending urinary tract infection - i.e. a waterworks infection that is on it's way to your kidneys. Now, we know that the symptoms are subsiding it seems obvious that they were definitely due to the Aza. However, when I felt bad like that with my Leflunomide (not the same symptoms but not very nice stuff was happening) I phoned the rheumatology nurse and she reassured me. If I hadn't got hold of the nurse, I would have contacted my GP. Just to make sure my lovely.
Thank you, feeling alot better today and yesterday, no more pains etc, bloods came back fine. I do sometimes forget that i can get other things and i do tend to blame everything on the BD! Will get the doc to check urine, going in again this week for yet another blood test Going to have none left! haha.
I'm a little late getting to see this post but I'm so glad your blood tests are ok and you're feeling a lot better than you were. I really hope you keep on the up now, and that the side effects have just been temporary. Fingers crossed!
My latest blood test has come back a little worrying for white cells and anaemia - but I do feel okay so am staying on my current dose and hoping things settle back. Klaris x
I had to stop taking the Aza yesterday, the nausea got unbearable, ended up in bed unable to eat or drink. Bloods came back fine. I called the hospital yesterday and they told me to stop them and to just take the steroids until my next appointment in january where we will talk about the next step. Probably new medicines.
So glad you are feeling ok, really hope that your bloods do settle down. Are you having weekly blood tests?
I know! Had two not so bad days then it got really bad! dreading what side effects the next medicine has going to try and enjoy christmas and not think about it until then. On 15mg of steroids and going down on saturday to 10mg which I can just about cope on, hospital said if I get bad over christmas to go back up! All fun and games isn't it?
Wow, four weeks is a long time, the hospital told me to have a blood test every two weeks but I was so scared I booked myself in for one every week!
Let us know what happens after your next blood test. Fingers crossed that it will be good results.
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