Eosinophilic Hope??

[Stewiecat]

Hi, I know a few lovely people on here have Eosinophilic as I do, I'm just looking for some hope, tips and advice you've found along your journeys?? I'm feeling dragged down by it recently, the winter see's me on low descending dose pred every 3-4 weeks, which I hate but despite taking all my meds religiously, nebing, breathing physio and huffing twice daily the casts are horrendous, I can only liken it to a permanent chest infection, it's exhausting mentally, to keep doing the same thing for it to constantly come straight back 😖 drives me crazy! I have biologics (teszpire) within touching distance, I'm hoping someone can tell me these make a good difference?? It's what I'm clinging onto, thanks for any advice, x N

[Patk1]

I've been on fasenra for over 2yrs.makes big difference to asthma and also benefits my other lung probs

[Stewiecat in reply to Patk1]

Thank you Patk1 😊 I'm glad it's helped you, it gives me real hope I can be helped 🤞 like everyone on here it's been a long autumn/winter with never ending infections to get through, the spring sunshine reminds me it gets a little easier through the summer, by next winter I might be on the injections 🤞till then, just have to keep going, thanks again x N

[Patk1 in reply to Stewiecat]

Yes, it has.lets hope they soon get u on them x

[madonbrew]

I started on Fasenra in August last year. It’s really made a difference…I’ve been having a few issues this past 4 weeks but I also take methotrexate for something else which weakens my immune system. My biggest triggers are infections, but literally for 7 months straight I was doing good! I feel if I can get on top of this chest infection, my asthma would be back to better again!!

Sorry you are having such a rough time! I really hope they sort you with new treatment soon!!!

[1242Artemis]

Hi, I have now been having monthly Tezspire injections since last September. It has been life changing for me having had a very difficult 3 years. It took about a year going through the process of testing to be approved for biologics but it has been worth it in order together my life back. Now trying to get fit again but already there have been major improvements, most notably being able to play with my grandchildren. I wish you all the best.

[Stewiecat]

Thank you all so much x it's really difficult to keep myself positive, consant cycles of steroids and hard going clearance to be able to function, added with the worry of steroid damage, it makes me very emotional 🤦‍♀️ Your replies give me hope, I'm so glad you are all having such a good response to the biologics, I think it's my only hope now, feels almost desperate while I wait this last bit. I try to keep fit with gentle comfortable breathless cardio for added clearance when well, it's difficult right now when there's such a short period between flare ups needing the steroids, I hope like the previous 2 years the spring and summer brings a respite from the steroids and let's me feel more in control again 🤞 I'm super thankful I found this forum last year, i have no support at all from my gp's so the kind words,advice and support from people who are going through the same makes it feel less lonely and your journeys to feeling better tell me it is possible to get out of where I'm stuck at X Nicola

[Sars28]

I take fasenra injections every 8 weeks has really helped, hardly any chest infections now .

[Stewiecat]

Thank you, I can see if I can hang on, the injections might help me manage better, get back to something like I used to be, it's hope at least, i try so hard to manage and stay as well as poss, hink I'm just winter infection fatigued, like many others on here no doubt xx thank you again x N

[Scoocar]

5 years on fasenra and never better. I was so debilitated with asthma and sinus disease, side effects from steroids and then started fasenra. It has been life changing. I didn't have one and now I do. Hang on in there.

[Stewiecat]

I hope so much to follow your example, I'm sick of being sick andstruggling, your describing me when you describe the old you, I'm drained at the minute but hanging on because 🤷‍♀️ what choices are there, Thank you, you've made me tearful with relief that things can change, I'm really glad you are so well, it must feel amazing!! 😊 x Nicola

[Patk1]

I've severe eosinophilliac asthma,severe bronchiectasis and multiple complex lung diseases,so I feel 4u.I've been on fasenra for over 2yrs. It took nr a week to feel a difference and definitely helps my asthma which benefits- it's reduced exacerbations with less steroids and antibiotics. I'd not be without it.i hope u soon get approval,do push them to try speed it up.

I've ( under treated) adrenal insufficiency so constantly exhausted.i cope by trying to just take one day at a time, it helps x

[Stewiecat]

Thank you Patk1, I'm sorry to hear you have so much to deal with, it's definitely good to know the biologics are helping you with the Eosinophilic, can i ask if you don't mind, do you still have the sticky casts? So still have to do the daily routines?? (meds, nebs,breathing, huffing) Adrenaline insufficiency plays on my mind, a lot, it's a problem waiting to happen if I keep going the way I am. I have my first telephone appointment with Thoracic on the 17th March, so 🤞🤞🤞 things are happening, my severe asthma consultant is fab, and doing all he can to get the biologic pathway moving, I try to stay positive, but feeling run down by it right now, I'm back on doxy and pred after a rough weekend🤦‍♀️ it feels like another fail, I need to give myself a kick to reset to some positive thinking, I think 🤦‍♀️ thanks again for your helping words, lots of good wishes, I hope you are feeling as well as possible at the moment x Nicola

[Patk1 in reply to Stewiecat]

Thankyou xxYes still have to do all the self care but it's easier as not much mucous frm asthma and it has added benefit of reducing airwacollapses+ bronchiectasis seems easier to manage as less mucous and inflammation.i find fasenra wears out last 2wks - only have it ea 8 wks it makes me realise how much it helps,whn it's working.just keep pushing xxx

[Stewiecat]

Thank you! It's so good being able to connect with people going through the same, so thank you for sharing your experience with me, talking to medics, however caring they are, comes with the obvious, they aren't in our shoes, so can't fully understand. Less mucus and therein inflammation would be amazing, I don't mind the routine, it's when we do it and still get endless infections my head struggles 🤦‍♀️ yes, push I will x thanks so much you've brightened my day with your encouragement, I hope you stay as well as you can xxx Nicola

[Fix21]

Hi Stewiecat, I also have severe eosinophilic asthma. I have been on tezspire for 9 weeks. It has completely changed my life! Before it started to work I was having terrible daily symptoms and shortness or breath and so many high dose courses of prednisolone (which didn't really help!). I had constant a&e trips and admissions. I haven't had a severe exacerbation, a&e trip or admission since tezspire started to work. I never thought I would feel this normal again and had completely lost hope of anything ever working for me. I now get mild symptoms most days but it is nothing compared to before. So don't lose hope! These drugs are life changing if they work for you. Fingers crossed and wishing you all the best x

[Stewiecat]

Wow!! Fix21 Thank you so much! Such a positive, hopeful message, gives me renewed determination to hang on, I feel so desperate so much of the time, it affects my head as well as my physicality, I'm sure you understand completely. I have my initial Thoracic assessment coming up on the 17th March, so it's happening, I know the treatment is still a way off, but the wonderful messages I've received on here will help me get myself there, i hope you stay well I'm so pleased it has been so good for you, lots of good wishes xxx Nicola

[Fix21 in reply to Stewiecat]

I'm so pleased it's given you some hope! It definitely becomes as much a mental game as a physical one when you are suffering so much all of the time and not yet on the right medication or with the right consultant. Good luck with your assessment, you will get there and I hope you get the outcome you are hoping for 🤞 x

[Stewiecat]

Thank you!! Stay well and enjoy enjoying life again 😊 xxx you've helped lots xx Nicola