Just come back from my appointment at addenbrookes hospital, saw Dr Jayne who is brilliant. Been put on Aza along side the steroids, just taken the first tablet, after reading all of the side effects I am petrified!! Silly I know. Has anyone else had any bad side effects from them? Also I have lost a lot of hair since being on prednisone, had a thick head of hair now it's so thin has anyone else had this? Really hope it grows back.
Always get so upset after an appointment, just the realisation of it all and seeing quite sick people in the waiting room makes me sad and worry about the future.
On a positive note its Friday, yey!
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joannebond360
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Just to say that I started on Aza in November, and reading through the side effects is scary stuff. However, so far I have had no problems whatsoever with taking them (125 mg per day.)
I make sure I take them with a good meal, in the early evening. That way (I reckon) if there is any sickness then I don't have to deal with that during the day. I felt a little nauseous perhaps the first day or two of starting them, but tbh that could have been my imagination, as I've felt nothing since then!
I can't say that I have particularly noticed they have kicked in yet, but I think it can take a while.
Although I'm not on prednisone, I've found that my hair has thinned - and I put that down to the colchicine...
Hope everything goes really well for you with the Aza - I'll be keeping my fingers crossed you're right that it is upsetting going for appointments but I'm really glad that you have brilliant doctor at Addenbrookes. Klaris x
Hi Klaris. Thank you so much, that's really encouring will do the same with the evening meal I think. I have started in 50 then have to increase every 2 weeks to 150mg. Let's hope they kick in and work for us felt so awful this week, they have uped the steroids to 15mg again for two weeks then back down to 10. So much to remember, I need one of those pill boxes, haha, what ever next? And now possibly a wig, haha, have to laugh or I think I will break down
I was on Aza and it didnt agree with me so am on Methotrexate now and have been for 3 years! I think we are all quite different and when I read about Methotrexate I was so upset and scared. However 3 years later and I am still here! My hair was very thick and I lose a handful every day but I am lucky I have lots to lose but find I am cutting it shorter and shorter cos it looks thicker that way. Us girlies shouldnt have to worry about things like that!!! As for the steroids, been on them for 3 years and have put on 3 stone!! But they work so cannot complain except I hate my 'moon face' and wobbly tum!!!
I hope they work for you and you feel better very soon.
Hi Angela. It is all so scary, reading all the awful side effects etc. Glad you have been ok on the methotrexate.
Was always moaning my hair was too thick and getting on my nerves, now I want it back maybe one day if we get off these meds
I have only ever gone up to 20 mg on the steroids so I don't know if that's why I haven't put weight on, on 15mg now for 2 weeks then back to 10mg and hoping the aza will take over and I will be able to come off them. I got a fuller face which was good because I looked so gaunt but not the moon shape, probably have this to come. What with no hair and a round face and probably got the weight gain to come what fun, haha!
Make sure you keep up to date with your blood tests as I have just been taken off these after.four years. My white cell count has fallen to 1.2 and my neutrophyll count is down to 0.7 so gp has stopped them until I get to see consultant. Don't want to worry you as each of us tolerate different drugs differently. Apart from this recent set back I coped very well with them. So good luck and I hope all goes well for you but just a reminder how important the blood tests are. Keep well.
I hope this all makes since as I am using my phone my lap top is knackered which is why I don't contribute very often takes to long on phone! Hoping santa is paying attention lol.
Thank you for that. I have been told to have bloods taken every two weeks. It is all very scary! Will definitely keep up with the blood tests. Did they say that all of your levels will sort themselves back out? Hope they sort out a new suitable medicine for you asap.
I was concerned when I was first prescribed Aza, so much so I called my consultant and informed him I was considering not taking it. He was very helpful and said the dosage was very low at 50mg to start and most side effects were minimal and likely to be spotted very quickly in my blood tests. I went ahead and I must admit I found it helped me. I had no side effects so was a happy camper!! Then I had to increase the dose to 100mg and look at 150mg and so on. I weigh about 85Kg so it's based on a % of your body weight I believe.
I have weekly blood tests and they would not entertain fortnightly tests. I'm on weekly for another 6 weeks and if all is well then I move to fortnightly tests. I've also had falling neutrophil count but I've been told not to worry about this as it should stabilise. It started at 6.9 but dropped to 2.1 before settling around 3.3.
It can be scary reading all the problems the different drugs can cause. Just remember that everyone is different. AZA was bad for me - sickness, went bald then got drug-induced hepatitis! However I was on a very high dose to wean me off the 80 mg steroids I was taking. Good news is when I stopped, my hair grew back immediately. I hope you find something that helps. I'm still trying. Having Infliximab infusions now. No great success but plenty of itching so maybe it is doing something. Take care. Nothing can substitute or resting either x
Maybe I will see about the weekly blood tests to be sure. I have to increase the dose every 2 weeks up to 150 mg, I only way 55 kg so hope that dosage isn't too high! It is so scary, was close to saying I wasn't going to take it but I am so poorly and can't stay on the steroids. Took my second tablet today, feeling a bit queezie and have a bit of a tummy ache so nothing too drastic yet!
Going bald would be my worst night mare, wow that's awful getting hepatitis! Really hope the infiximab kicks in soon and helps you.
I have been on Azathioprine since for a year and a half and have not had any of the side effects. I am also on colchcine and am monitored with blood tests to make sure the liver is fine and has been! I totally understand you saying about seeing people with BD who are quite sick, the only thing I can suggest is that you take each day as it comes. Not everyone has the same symptoms. I have flare ups and the fatigue and just do what I can when I can. I am trying to get myself as fit as possible so I can deal with whatever the BD throws at me. I hope it goes the same for you too
Hi Sharon. Thank you. That's really positive brilliant that you have been ok on it.
Learning to deal with the flare ups a bit better and am trying to be more positive, used to get so upset and cry all the time but like you say to take one day at a time.
11 days ago they also lowered my prednisolone to 5mg a day. I started on 100mg a day n hav tapered down. Been on them since sept. have the moon face and weight gain.
Since lowering my pred and starting on aza my bone pain has intensified in agony, my arthritis swelling is awful- every joint swollen even knuckles and toes. I hav my mouth ulcers back (still no genital thankfully), and the toothache type pain thru limbs is worse. The fatigue is about the same but iv always needed daily naps. My jaw has started clicking and dislocating again as has my hips, it had died down/ atopped since the pred stated in sept.
The last two days iv had really bad nausea and an increased headache sobs.
Im also on 40mg ametripteline for the behcet headaches
75mg asprin
60mg lansoprazole.
Paracetamol reg.
20mg morphine 12 hrly.
5-10mg oromorph as breakthru.
Been for a meal for a friends bday tonight, only lasted an hr n a half before leaving took me longer to get ready! The nausea n pain got the better of me.
The bone pain has spread to my spine also the last few days.
Hope aza kicks in n works soon.
Lost quite a bit of hair in shower this morn slightly more than usual
Wow 100mg of prednisilone! I have only ever had 20mg and I was hyper and had awful trouble sleeping as I was so wired, can't imagine having to take that dose. They do make you feel better though don't they? I also had bad mood swings like pmt on them. My poor hubbie now your dose has lowered the moon face and extra weight should go.
I get the clicking jaw, painful spine and the awful headaches, isn't it awful?
Really hope the aza starts working for you soon.
The hair loss is just horrible
Shame about your friends birthday meal do you think the nausea is from the aza? I have felt sick with it but it comes and goes.
One day we will be well enough again to go out without suffering, go to the gym etc and all the other things we used to do before the BD. Look back two years ago and just see a different life and a different me
I would love to have that day again, and one day it will hopefully be here.
fingers crosed im back at the centre 2mo so c wat the nurse says im sure she thinks im playacting tho lmao! i wish.. fl like iv lost everything du to this behcets. cx
Have to keep positive that we will good luck for your appointment, let us know how it goes.. I always feel that the doctors and nurses think that I'm putting it on too, haha! Just sometimes think they are taking it all in and have probably heard it a million times before from other people. Doesn't make you feel very good though does it?
Hugs
Jo x
Reading the side effects of Aza is certainally scarey.
I have been on it for about 6 weeks now and all seems to be good.
I get problems with my tummy in general and can't eat certain foods but the Aza hasn't made things any worse.
I did find my hair came out when I brushed it when I first started on Aza but it has stopped now thankfully. I have thin hair to start off with so was a bit freaked when it was coming out in quite large amounts.
Good new is Aza is controlling my symptoms and I haven't had any bad ulcers for a while. My headaches are less frequent and not as severe either so as you can imagine I am a happy bunny.
What brilliant new that its working for you you must be so pleased!
Been on them 6 days now and have had a bit of a dodgy tummy but other than that ok. Am feeling pretty good apart from really bad joint pains which is probably made worse because of the cold, not sure if the aza is working or the prednisilone is keeping me well. Will soon say when I come down on the steroids next week fingers crossed.
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has anyone else had this? Really hope it grows back. 
you're right that it is upsetting going for appointments but I'm really glad that you have brilliant doctor at Addenbrookes. Klaris x
maybe one day if we get off these meds 
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