Eosinophils Asthma

[Casey_87]

Hey

I have been partially diagnosed with eosinophils asthma and waiting for a referal to the severe asthma clinic. Has anyone else got this and can share with me there treatments please. I have had a phlegmy cough, shortness of breath, fatigue, unexplained weightloss and needing oral steroids every 8 weeks as I have a long course than 5 days as this doesn’t do anything. My count was 1.069 then after steroids 8 weeks later it’s 0.6 but I have all symptoms back so won’t be long until I’m back to steroids.

Thanks

☺️ Casey x

[martin_1972]

Hi casey

once i got refered to the royal brompton they did all the normal tests like bloods, fino, xrays, spirometry to confirm it is or isnt eosinophils asthma and not due to a secondary condition. once confirmed then they had an mdt meeting to see what was the best trearment, i got put on a biological injection which i had to take every 8 weeks at home. the first 3 times have to be taken in the hospital to make sure you dont have a reaction to the treatment where you hahave to stay 2 hours after then they teach you to do the injection yourself and can either still go the hospital or do at home. since then i have been moved onto one of the other biologicals which requires me to go to the hospital every 4 weeks for a iv treatment.

hope that helps a little but if you have any specific question i am happy to answer if i jnow the answer

martin

[Grimlock88 in reply to martin_1972]

Hi Martin, can I ask what the medications were called?

[SFExpat]

Hi Casey,

I have Eosinophilic Asthma as well. Like Martin, I have been on 8 week injections for almost 2 years, the first year things were great, but I am noticing that the treatment is slowly becoming less effective so will likely have to change to something else.

Hang in there, once they get you on the right medication things WILL get better. You may have to chop and change for a while until they find the right combo for you.

Cheers,

Karen

[Casey_87]

thank you 😊 makes me feel more at ease, can I ask if the biological therapy make you immunosuppressant? Just the job I do I wouldn’t be able to I don’t think 👎 glad there a light at the end it’s been 3 years and I’m no better. Has anyone had unintentional weightloss with this asthma as this is what’s making them think is it or is it a form of vasculitis.

[Yogiyogi57]

I've been on Fasenra biologic treatment for eosinaphilic asthma for almost 2 years now. I had all the symptoms you had when I got diagnosed, lost weight because I had no interest in eating or basically doing anything. Once on the injections it was almost an instant improvement and there is nothing I can't do now.

[Casey_87 in reply to Yogiyogi57]

wow! Thank you for sharing your story. The weight loss is bothering me the most as they told me it’s not part of the eosinophils Asthma but more a vasculitis so I am glad that it can be. Are the injections an immunosuppressant? Just curious as my job role might have to change 👎 x

[Yogiyogi57]

Wouldn't like to comment on the immunosuppressant side of things, nobody has told me anything about that, I'm just so happy to have my life back again. Everybody used to tell me how ill I was looking and that I needed to put some weight on but I had no interest in food so didn't bother eating much. It wasn't like I was eating normally and still losing weight. I didn't have enough breath to do hardly anything, once it took me 20 minutes to recover from bringing the empty wheely bin back in. 2 weeks after my first injection I tried walking up the biggest, steepest, longest hill I could find and walked straight to the top. Hope things work out for you.

[Davenpos]

hi I wasdiagnosed 5 years ago with severe eosin asthma ended up ecmo....since then eosinophils up and down as was itubated every 6 months even on biologics and high dose steroids .

Now 5 years on still struggling on benra still fluctuate between 20 mg and 40mg pred daily..

Feno remains over 200 yet cant have duplo as NICE.states on too many pred...

Recommenced on mycophenalate to try and reduce pred but no improvement have has to cease it as ifeel crap ...blisters on body tired all time , chest tight dizzy...

This is all a nightmare as I given up my home my professional career and no bloody life at mo x

But least I alive

Take care