Would be really grateful for any advice anyone can offer re things I can do to help myself plesse. At a routine hospital appointment my FENO was 150 and on the basis of that reading further blood tests were done. Had a telephone call yesterday from the consultant to say eosinophils were 3.5 and he arranged for me to have intramuscular injection of corticosteroids as an emergency measure yesterday.
This pattern happens regularly re high FENO & eosinophils but the eosinophils have never been as high as this before. Highest was around 1.7 when I wound up in resuscitation unit with them unable to get my airways open and I was acidotic and about to go into multiple organ failure. Took many hours but thankfully they eventually they managed, after using huge amounts of aminophylline and something else, to save me.
However, my fear is that this current situation is so frightening and reminiscent of that time and this year I’ve had so many acute exacerbations of asthma (I have severe refractory eosinophilic asthma) & protracted chest infections, that I’m wondering if anyone has any thoughts or suggestions on anything I can do to help myself please?
I have had posterior subcapsular cataracts in both eyes and recently had surgery done privately as it was going to take too long on NHS and they were very bad cataracts -on a scale of 0-4 with 4 being the absolute worst (blind) I was 3.5 and obviously unable to drive etc. These cataracts are directly caused by long term use of high dose corticosteroids and therefore I do not want to go down that road again - 60mg or 40mg prednisone.
Obviously this is a crisis situation and I really had no choice but to have the IM injection yesterday but I wondered if any of you had any ideas or suggestions that might help me please.
Try not to worry about what your levels are in terms of how they’ll affect you. They can be very high with no issues, or lower but you’ll be in resus! They’ll probably want to put on on pred just to lower the levels again.
I think I saw on head that you’ve been put forward for mepo injections which should lower your levels, and keep them lower!
Hope that helps and that things work out for you x
Hi Emma, thank you for your reply. I’m in a bad way right now, coughing constantly and there’s loads of dark green mucus. Chest is very tight and I’m also very wheezy. The fact the consultant was so concerned by the eosinophil level has made me wonder what else I can do to help myself in this situation ..you know?
I’ve been awaiting treatment with Mepolizumab and have been informed that at last it is looking like it might happen sooner rather than later. Thank God as I know in my gut it’s what I need as my body has really been struggling terribly over past year or two. I know there’s no guarantee it will help me but at least I’m going to be allowed to try it and see.
No date as yet but have to see the asthma consultant within next couple of weeks.
Oh no!!! Don’t forget to head in if you’re really struggling! From the sound of it you had an appt just when you were borderline sick which is probs why your eosinophils were so high! 😣😷
I know what you mean, but I think other than staying well there’s not much you can do to lower E. count (if there was, there’d be a lot less asthmatics, and it’ll be a lot easier to deal with!) 😅
I hope you’re mepo appt comes through soon! (Hopefully I’ll have mine on Monday 🤞🏻🤞🏻🤞🏻) I’ve heard a lot of ‘yes it helps/no it doesn’t’ about it, however the next in line (reslizumab) I’ve only really heard excellent things - so if this doesn’t work there are more options!
Look after yourself and don’t put off help for too long if you need it x
Oh good luck for Monday 👍 I have heard of the Reslizumab too..is it newer than the Mepolizumab? That’s great to know there are now options with these new biological therapies. I’ve had two very bad heart attacks within past two years STEMI where LAD was totally occluded and RCA with 95% blockage. Cardiologist is of the opinion with no family history etc it looks like the long term high dose corticosteroids played a big role in these. Also the posterior subcapsular cataracts in both eyes....so I’m no longer a fan of steroids although they did get me out of trouble re the inflammation in my airways many times.
I hope Mepolizumab works well for you Emma..please let me know how you’re doing on it.
I am starting Mepolizamub on Tuesday. Have been on steroids for 2 years due to getting ill very quickly every time they get lowered. I have churg strauss and esinophilic asthma. I am really hoping mepo will work as I am stuck indoors most of the time and totally exhausted. Will let you know xx
Thank you for your message. I also have Churg Strauss & severe refractory eosinophilic asthma & my asthma is extremely difficult to control. I wish you good luck with your Mepolizumab👍👌please let me know how it goes.
I totally understand the exhaustion and being stuck indoors as that’s my experience as well. You feel your world is just getting smaller all the time don’t you?
I really hope you get your Mepolizumab this time and it really helps you.
Eosinophils are produced in response to an allergic reaction, so all hayfever and asthma sufferers will have raised levels to some degree. I'm not clear from the various posts whether you have actual symptoms of eosinophilia, or just very bad asthma at the moment. One problem we have in the UK is lack of sunlight (though this year has been a bit of an exception); you need that to produce Vitamin D which the body uses to make white blood cells. If it can't make enough when you're ill, it resorts to increasing eosinophils, which are a particular type of white cell which doesn't need Vit D. So increasing Vit D intake might make a little difference and would certainly not do any harm.
Hi, I have Churg Strauss syndrome (aka EGPA) with SREA and chronic eosinophilia.
However the 3.5 eosinophils reading is very high and my symptoms are constant coughing with production of green mucus plugs. Takes many hours of coughing to get these plugs (or casts as the respiratory consultant referred to them because of their large size..like slugs).
My husband gives me multivitamins every day and extra Vit C right now.
They keep telling me how very complex my case is but what I really need is treatment to target the production of the eosinophils ..i.e with one of the biological therapies which directly target the IL5 receptors which drive eosinophilic production.
Looks like they’re finally going to start me on either Mepolizumab or one of the other biological treatments very soon as I’m in yet another respiratory crisis.
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Severe Asthma (Eosinophilic) & Clinic referral & Fatigue
