Morning! My consultant said he might put me on azathioprine. Someone with knowledge of lung diseases thought mycophenolate was more use/more recently favoured, as a treatment.
Does anyone take either of these?
Just wondering what you think? I read an article that said the second one 'improves lung function'.
Hi Georgina
On the various Forums I visit many people comment positively about Mycophenoate. I am due to start taking this soon. I tried Azathrioprine last year but my liver couldn't tolerate it. Hope you are well and good luck with the new drug
Sheila xx
Thanks Sheila Hope you're doing ok? My consultant said azithropine but I phoned someone very qualified to comment and she actually wondered why Mycophenolate wasn't the drug of choice. I'm seeing the consultant next week for lung function test results do we'll see what happens next. I'll ask him why one not the other especially as there are very positive comments about Mycophenolate. I wonder if anyone be in here is on one of the other. Take care xx
I was put on Azithroprine in order to reduce my steroids however I had to be taken off it due to the affect it had on my liver and my white blood count was very low. I've never heard of Mycophenolate although my consultant might have mentioned it but I sometimes struggle to take in all these large names for drugs!
Hi. I'm on Mycophenolate, 4 years now. It's a very tolerable drug with few side effects. It's expensive by comparison and I haven't had as much benefit as I'd hoped but my wbc is too low to tolerate a higher dose. If you have the choice, go for Mycophenolate. Xx
Thank you so much Clare. That's very useful to know. If you don't mind me asking, what is your diagnosis? I've just been diagnosed with nonspecific interstitial pneumonitis, after nearly two years of being told it's asthma and by another consultant nothing at all! xx
Sometimes you wonder what they teach doctors in medical school! I have had lupus for nearly 30 years - but there's a catch. I have none of the defining antibodies. It was only fatigue & joint swelling/pain until 2012 when it suddenly decided to break free. My small airways are under attack & I hate it. I was petrified of dmards when I started methotrexate & was swiftly moved to the then relatively new & exclusive Mycophenolate. It's a good drug & we're lucky to be offered it. Hope this helps x
I agree! For years I've had a raised rheumatoid Factor. No sign of arthritis in joints and rheumatology just dismissed me as no clinical signs! I was recently checked again for antibodies and nothing, so far! I've not been offered it I want to know why another drug had been suggested. Consultant number 2 told me the thickening at the bottom of my lungs was really about me not breathing deep enough on the CT Scan. Consultant 3 said fibrosis! Finally diagnosed by letter containing contradictory information. No idea if I'm seeing consultant 2 or 3 next week! x
Hi Georgina.
I suffer with Ulcerative Colitis and was on Azathioprine for 4 years. However, I was admitted to hospital in February with a chest infection and stayed in for 2 weeks. After numerous tests, cause never determined but Consultant said the Azathioprine may have contributed to catching the virus. Came off Azathioprine and now on Steroids but for how long ?!. Fortunately, I have had no flare ups with the UC. Still SoB and on Oxygen.
Hope it works out for you.
Dave
Thanks Dave. This is very useful to know. I think the immune suppressants make us so vulnerable. All the drugs have side effects too. It seems like everything is trial and error. I catch any virus going round. Always been the same throughout my life. Pleased no flare ups for you but sorry about the SOB. Saying sorry doesn't seem to be a big enough statement in our situation. Great big hug too x
Thanks Georgina.
It is trial and error and no 2 people are the same.
Never really had colds before Azathioprine but always had them after !. However, 4 Grandchildren in that time !.
Hugs back.
Dave x
Aw...4 grandchildren. Boys? Girls? x
3 Boys and a Princess.
I would rather be ill than not see my precious ones.
They do lift you when you are down.
Have you any ?.
X
Aw... a princess too. Hopefully a very spoilt princess, princes too. I don't have any grandchildren as I don't have any children (lost twins and couldn't have any more) BUT I've been adopted by three young adults. Two girls and a boy. One of my nonbiological children is having a baby in January so I'll be a nonbiological grandmother soon 😀
Life can be so cruel but you have come through and it will better with the patter of tiny feet around you. Keep smiling and hope everything works out for you. X
Was on Azothioprine for about 3 yrs for my Chrons/Colitis (now Colitis!) as it suppressed my immune system & it worked very well for me & saved my life
Thank you for getting back to me. I'm glad it saved your life. Big hug xx
My late husband was put on Azathioprine to stop the arthritis attacking his lungs it got him sectioned to a mental hospital it is a Terible drug try to avoid
Thank you for your reply. Im so sorry about your husband. What a terrible tragic side effect. Big hug xx
Hello GeorginaS
Yes, I was on Azathioprine for over 2 years for my Crohns and Colitis (yep , have both!).
It was a revelation, allowed my gut to heal a bit, and and i was so much more comfortable, it let me eat normally for the first time in years, but when the UCTD and OB appeared it was stopped, and I started with Cyclophosphamide and now on Mycophenylate.
I really didn't like the Myco. at first, blamed it , wrongly, for symptoms that turned out to be an exacerbation (apparently my third, but still quite new to the lung stuff, and condition is changing, so still learning!) but I am very sensitive to new meds and had to stop it for a few days, and then restart at a really low dose and increase gradually. This time its ok and I'm almost at full dose. No real ill effects, altered sense of taste, but no nausea, a bit more fatigued, need to rest often but that also goes with the Fibromyalgia and the Lupus like stuff.
Dunno if this is helpful or not, just my two pennorth!
Hope you get it sorted
Cc xxx
Hello You have been through the mill! Goodness so many different things to handle as well as the side effects of different drugs. You must be an amazing person to be able to cope with everything and to also share your knowledge.
I'm going to discuss the reason for their choice and ask lots about side effects! To begin with they have me Prednisolone but not the gastric resistant ones! I spent two weeks in agony and coughing more and more!
Thank you for being so helpful. Really appreciated xx
i started to read side affects but as I take 12 different meds full time plus others when needed gave up every tab has side effects & some people have more than others but to do without could be a lot worse even death so we have to weigh up the pros & cons.
I know exactly how you feel. Apparently steroids put weight on but so far I'm fine. Only on 15mg. I'll see what they say next week. Clearly they have reasons for their choice. Hope your medication is helping x
Mycophenolate every time. If you opt for Azathioprene just be sure they confirm (with blood test) that you have the enzyme (in your liver) that metabolizes the drug. Otherwise, as I found out, your liver will quickly toxic. Not pleasant.
Blimey! Thank you for that. Very interesting. Seeing consultant tomorrow. I'm in Berkshire x
So am I!
Where? I'm in Woodley
I'm in Thatcham. ☺
That's near. Here they don't have any support networks for 'lung diseases'. Very few people have what I've managed to get! My GP told me no one else in the practice has it! Great isn't it!!
My primary problem is a rare autoimmune condition. But due to that and the meds, I have asthma, bronchiectasis amongst other things! Sounds like we're both in exclusive clubs!
Decreasing supplemental oxygen…
Pneumothorax and talc
First visit to restpertery clinic 
Newly diagnosed, mild Bronchiectasis
pulmonary hypertension
