Im down to 5 mg prednisonole daily
After ct scan iv to go on azathioprine for lung inflammation which i was surprised about as my breathing has been so good . Ive been lucky and had no side effects from the steroids ,well maybe a bit of anxiety .
The side effects are horrendous with this azathioprine?!
Was plodding along quite nicely thinking everything was going well .
Has anyone had a bad /good experience with it?
Hi Blaahh
In 2014 I was diagnosed with ILD/Pulmonary Fibroisis . Initially given just high dose Prednisolone but on reducing it the breathlessness returned so I had to take Azathioprine, as a steroid sparing drug, but after about three weeks on this I felt so ill and had my bloods tested a week early and it had sent my liver enzymes massively out of normal range and was told to stop taking it. My consultant said you can either tolerate it or not.
I have since been on Mycophenolate and have absolutely no side effects and my Prednisolone is down to 5mg daily maintenance level. I have to have 12 weekly bloods done and after 5 years everything is within normal ranges.
Hope this helps. Take care Mollie xx
You dont know how much that makes me feel better ! My story's similar to yours . Tho im doing well on the 5mg ,theres more inflammation . Thats whats probably giving me the small amount of breathlessness i now get ,mostly going upstairs . But it goes quickly.
Consultant told me yesterday iv def got mild fibrosis on the bottom of both lungs. Ugh why me?? Lol why anyone .
I hate feeling like im not in control.
Glad everythings going well for you ! Im still in the early stages of all of this and im petrified of dying . My poor kids .
Thank you for your reply it gives me hope!
Alma x
Hi Alma
There is hope. I too was like you in the early days petrified, especially after googling!!! Mine is both lower lobes. I have Pulmonary Function Tests every 6 months and CT every 2 years.
Five years on I have lost lung function in both lungs but for the last 12 months I have been stable. I find stress initially made me worse i.e diagnosis , family problems and my mother passing. I feel more in control these days I try to look after myself. I did however have to retire on ill health at 54 and I think that did help.
I do know how it is all consuming in the beginning and hopefully your Consultant/Specialist Nurse/Chest Clinic are a great help to you.
Take Care Mollie xx
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I can’t take it either Blaahh! Apparently 25% of people prescribed it can’t tolerate it so you’re definitely not alone. I took it to treat Crohns 20 years back & ended up with drug induced pancreatitis, it was awful.
Ive to start on it next week . Im more frightened of that tablet now than anytging else . But i will take it obviously, i could be one of the people that can. Hopefully! Thats awful that it didnt work for you . Its amaxing how many illnesses it can treat !
Thanks for your reply
Alma x
Hi, I went on azathioprine 25 years ago for crohhns disease and have been taking it ever since with absolutely no side effects whatsoever. The high dose steroids I was taking prior to that were causing me all kinds of problems. All I have had to do is have 3 monthly blood tests and throughout this period all my levels have remained normal. I am one of the lucky ones that has had their lives made much, much better with the azathioprine and I hope that it works well for you too. My consultant also told me at the time that to stay on this for life would be quite acceptable as long as the bloods remained stable.
I hope this gives you a bit more confidence and I hope it works well for you too.
Very best wishes and good luck.
Thank you ,it does give me more confidence to just try it and try to be positive about it . I had a mini breakdown yesterday after talking to the consultant . Lol ! Hopefully it works for me like it has you . Hearing real stories on here definitely helps. Thanks so much
Alma x
For sure you should try & I do hope you can tolerate it.
Me too! Think its just your luck if you can tolerate it .
Ive been truly traumatised by this whole lung disease thing and the thought of the side effects of this tablet makes me even more anxious. It can be life changing but can also make you very ill . As you know in your situation . Truly does sound awful .
Thanks
Alma x
Hi I have just been taken off Tocilizumab after having a rash reaction to the 7th injection, previous to that I was on Methotrexate which made me sick, I have been told I may go on Azathioprine, can you tell me what the side effects are.
Take care .
Hi! Sorry for the late reply . Im now on 100mg azathioprine twice a day . And 10mg steroid .The only side effects ive had are slight nausea but it goes quick . Also i think my hair is def falling out more . Though my hair fell out a lot anyway ,since having kids . I make sure to take tablet with a meal .
For me ,i feel great taking it! My aches and pains are away ,esp my knee pain . Im not so stiff and feel like my normal self again .Had my first round of bloods done last week. Not heard anything from doc so think all's well with that .
Feeling positive with everything again ! I know there are can be quite serious side effects with aza but just hope they dont affect me ? I can only hope,right?
I would say give it a go , it might agree with you ! Hope all goes well for you
Alma x
Thanks Alma, I think I will have to give it a try,all my pain has come back ….and so exhausted again since I had to come off Tocilizumab.
Thats awful for you . Thats the worst thing the exhsustion /fatigue. Sometimes i think its worse than the breathlessness i get .
Go for it! You can only try . I'll keep my fingers crossed for you 😊
x
Thanks ..and hope you improve aswell x
I dont really know the answer to this.
HaveE beenon AZA for a month now. Prior to starting the AZA, I HAD symptoms of an infection. It turned out not to be infection,but,it was the lupus symptoms, making me ill.
Some things are better with the AZA,
no sore throat
No bruising on my legs.
I only have to get up to wee once in the night,not 4 times.
Nose not blocked all the time. Apparently my creatinine levels are slightly better.
Fatigue is bad ,I lie n bed,thinking about what I need to do.
Get up ,eat cereal,take AZA,energy disappears!
For 3 days, I’ve got up at 6am,cereal and AZA,Then Back to bed for an hour. It’s a bit better,at least I can get a bit of housework done before exhaustion sets in.
My appetite is poor,seem to throw away more than I eat.
I’m n 10 mgm Prednisolone,can’t wait to reduce it.
My shortness of breath is worse,I see the rheumatologist and ILD. doc in 2 weeks.
I don’t know if I will like what they tell me.
Sorry,don’t mean to moan,just posting my symptoms in case any one else has the same. Thanks for reading this.
Youre not moaning ! I feel for you ,its horrible feeling so bad . Its helped you in some ways but not in others .
Ive got fatigue /body aches and pains and my nose is always blocked too . So hope it doesnt make it worse .
I dont mind the steroids they help me breath and ive had no bad side effects . Do the steroids help your breathing ?
Hope your next app goes well x
Move from Methotrexate and Azathioprine onto Cyclophosphamide for Churg Strauss (E.G.P.A)
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Spring Vaccination Spikevax XBB.1.5.
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