Eosinophilic Asthma

[Honeysuckle21]

Hi everyone, has anyone been diagnosed with Eosinophilic Asthma ? If so what medication are you on , inhalers etc . I have just received my letter today from my last Difficult Asthma clinic appointment and it is now saying I have Eosinophilic Asthma not brittle Asthma which is what was said before. I do have a lot of inflammation and suffer with so much muscle pain it’s really having an impact on my day to day life . Any information would be really appreciated 😊

[Lysistrata Administrator Community Ambassador]

Hi, I don't have eosinophilic asthma- I have severe non-allergic, non-eosinophilic asthma which has at times been called brittle, though that term can be used loosely to mean severe/poorly controlled or less loosely to describe some types of asthma that are very unpredictable and vary a lot day to day.

Brittle asthma describes how your asthma behaves whereas eosinophilic describes what is driving it - basically they mean you have high levels of eosinophils (a kind of white blood cell) causing your inflammation and symptoms, which may be presenting as brittle asthma. In other people, like me, you can have very similar symptoms and patterns of how asthma behaves, but eosinophils are not what is behind it.

The good news is that there are several new treatments specifically designed for eosinophilic asthma (eg mepolizumab, reslizumab, benralizumab), so if you're finding nothing else is helping, your clinic may suggest trying one of those to reduce eosinophils and see if that helps.

Hope this helps and isn't telling you things you already know! The AUK nurses are also very helpful and friendly if you need to talk things over.

[Honeysuckle21 in reply to Lysistrata]

That is so informative thank you so much for explaining that , I understand a lot better now , and my consultant did mention there was something else we could try . So I’m feeling a lot better now for your information. Thank you 😊 x

[Margerita in reply to Honeysuckle21]

Hi there I have eosinophilc sthnas too and take numerous meds. I have been on steroids more than off over the last year but have a fabulous consultant and am being put forward to mdt for mepolizumab injections today so fingers crossed 🤞

[Honeysuckle21 in reply to Margerita]

Hi Margerita oh I have my finger crossed for you , let me know how you get on and if the injections work . 🤞I pray they do

[Cb28]

Hi I’ve just been diagnosed with Eosinophilic asthma after 53 yrs of being asthma free. I had an asthma attack July last year since then I’ve had 7 lots of steroids and antibiotics because they said it wasn’t controlled I could see the consultant who told me it was this . I’m on spiriva, ventolin and fostair inhalers. Montelukast, fexofenadine, carbocisteine and avemys nasal spray. I also take turmeric and vit D3 . I have to give a sputum sample to rule out a lung infection then transferred to Leeds to see a new consultant. Before I knew the type of asthma I had I started researching why at the age of 54 I developed asthma .. I have migraines So ibuprofen was always carried about with me and taken regularly but on reading how reducing prostaglandin production was great for migraine it wasn’t for asthma so I cut it out and went the longest asthma free period of 8 weeks the consultant confirmed this ... no aspirin, naproxen or ibuprofen. I suggested I’d given myself this this condition to which she disagreed. I’ve now gone 3 months without the need for steroids ..I’m not happy with all the meds I’m on either and not sure they help this type of Asthma .. can I ask what meds you take ?

[Honeysuckle21 in reply to Cb28]

Thank you for your reply , at the moment I’m on Symbicort 200 , carbocisteine , omeprozole for reflux . I tried Montelukast but made my anxiety so bad I was a wreck . Also tried Avamays nasal spray but found they made my breathing worse . So now I’m waiting to see an ENT specialist, as I have nasal polyps and a lot of congestion. Always clearing my throat and trying to get rid of the mucus . My doctor has only just started me on the Carbocistein this week so I’m not sure if it’s working . Oh and on and off oral steroids all the time it’s rediculous.

[Cb28 in reply to Honeysuckle21]

I found carbocistein works really well for being able to cough to clear lungs makes it easier. I take 3 a day but can alter to 6 if needed .. funny you say montelukast makes you anxious .. I’ve found that too ..just didn’t realise it was montelukast I blamed others . I’m off Avamays due to nose bleeds.

[Honeysuckle21 in reply to Cb28]

Yes I couldn’t understand it at first , but the dreams I had on Montelukast were very vivid and so worrying some of them , then I started crying at everything and shaking and at first my doctor dropped my dose to half , the children’s dose , but it still made me a wreck so had to stop it . But will give the carbocstein a go . I’m so sick of clearing my throat or coughing , and I want to stay off the steroids. I have to go for a bone scan next month as I have had so many of them . My doctor has also given me amitriptyline this week to try help with the pain I am in .

[Cb28 in reply to Honeysuckle21]

Amitriptyline makes me sleep well I have it for migraines but take it early like 8pm otherwise you might feel hungover .. well I do ... coughing is so much easier and if I’m clearing throat a lot I double my dose it loosens the mucous ... I’m not an anxious person at all but for the last 9 months this has changed so thank you I didn’t realise montelukast can do this. I’ve been reading up on it pins and needles to in legs GP thought it was drug related. You’ve really helped thank you

[Honeysuckle21 in reply to Cb28]

Wonderful, I’m so glad I could help you , try asking your doctor to half the dose to a child’s dose , they are chewable , if your still having the same problems then it is definitely the Montelukast. I’m glad I stopped it I feel so much better for not taking it . I burst into floods of tears in the doctors and that’s when he said it was the Montelukast.

[corinneyvonne in reply to Honeysuckle21]

Hi I have just had sinus surgery for my nasal congestion and constant headache, a week ago. I was initially prescribed the usual drops including Avamys (which gave me nose/mouth sores) which did not work. I am one week into my recovery and seems to be going in right direction 🤞 although they will take 6 weeks to fully heal. My ENT consultant was fantastic - Mr Avinash Pahade. He works at Royal Preston Hospital and also privately at Fulwood Hall Hospital in Preston (if this is an option of course) but I had my surgery at RPH. It may be worth just seeing him initially and then he can refer you on to the NHS waiting list in your area. I can not recommend him highly enough 😄. Just be persistent - I constantly ‘bugged’ my Asthma Nurse about this and within 12 months have now had the surgery. Hope this helps 😄

[Honeysuckle21 in reply to corinneyvonne]

Oh it does help thank you , I am so scared of having an operation especially on my nose , did they give you general anaesthetic or local ? My polyps are so big they are nearly blocking both my nostrils. I always suffer with post nasal drip , cough or clear my throat constantly throughout the day . So I think they will say I need an operation to clear my sinuses up . I’m just so worried it will effect my breathing if I go under anaesthetic.

[corinneyvonne in reply to Honeysuckle21]

Hi Honeysuckle21 I totally understand your concerns. Unfortunately it’s done under general. It is too near the frontal lobe to let you have local. This was the most concerning aspect of the operation for me too and I even asked my consultant if he could do it under local 🤦‍♀️. The anaesthetic hasn’t affected my breathing but my mouth and jaw is still sore from the breathing tube 7 days later. I am still bleeding from the nostrils but I have been naughty - working from home, doing housework etc so I suppose it is to be expected. I am also back on steroids for 15 days (which I absolutely loathe) but I persuaded my consultant to reduce the dosage - 15/10/5 because with me the side effects are awful. I am sat watching a film now before I get told off again 😂. I know it may be different for you and your circumstances are unique as are mine but I had a constant headache, if not a migraine and my nose was constantly blocked so try to be brave and have the op if that’s what they recommend. In my case it couldn’t be worse. Let me know how you get on 😄

[Honeysuckle21 in reply to corinneyvonne]

Thank you for going into detail that has helped me so much . Yes I will definitely let you know what the decision is . If you can do it so can I 😊. Can I ask if you lost your sense of smell at all before the operation?

[corinneyvonne in reply to Honeysuckle21]

Yes definitely if I can do it so can you 😄. I had stopped breathing through my mouth as I have non- allergic asthma on top of SREA (what a mouthful and makes me shake my head when thinking of it and this is a lot) so I am not sure what set my exacerbations off. I have had all the allergy tests and am not allergic to any of these but put anything with tea tree oil near me and I mean within a mile, I then have a severe reaction. I found out the hard way when my partner bought a shower gel with this ingredient in. I was in hospital within four hours 🤦‍♀️. This was awkward because everyone I know had to be told and I have had to leave parties, dinner dates etc sometimes. In fact you could see me running away 🤣🤣🤣. Take care x

[Honeysuckle21 in reply to corinneyvonne]

Oh goodness that is bad , I can just see you running away lol 😂. It is awful when you can’t find your triggers . I must admit strong perfume literally takes my breath away. My Daughter gets married next Saturday and I’m so worried if anyone has strong perfume on or aftershave I’ll be running away lol 😂. I have just had more blood tests for allergies so I’m waiting for the results of those . I will get sorted out eventually (I hope ) lol . You take care x

[Hidden]

Hi, I have severe refractory eosinophilic asthma and had been promised treatment with Mepolizumab once approval from NICE had been granted.

However over two years on and despite countless acute exacerbations of my asthma requiring high dose corticosteroids I am still not receiving the biological treatment..Mepolizumab..which I desperately need and was promised over two years ago.

My health is deteriorating rapidly and I have two consultants who are supporting my request for this treatment as well as my GP. Does anyone know of a respiratory consultant who is open to the use of Mepolizumab for severe refractory eosinophilic asthma please as we keep coming up against a brick wall here.

[Honeysuckle21 in reply to Hidden]

Oh my god that is awful, I wish I could help you . I really hope you can get it sorted out and soon . I can’t believe that you can’t get it . But at least you have people fighting for you . I will be praying you get it soon .

[Hidden in reply to Honeysuckle21]

Thank you so much. My consultant is playing God and seems to be also playing Russian roulette with my life. He promised me this treatment was exactly what I needed as it is targeted specifically for severe refractory eosinophilic asthma but since getting the NICE approval he is hiding from my husband and myself. I have the backing and support of two other consultants plus my GP & they have sent written documentation to him but to no avail. 😟😟😢😢

I feel I am running out of time and my quality of life is appalling.

I have developed posterior subcapsular cataracts in both eyes as a direct consequence of the repeated long term high dose corticosteroids they kept throwing at me and yet I STILL am unable to get the Mepolizumab I so desperately need..and was promised.

[Hidden in reply to Honeysuckle21]

Thanks honeysuckle21. I really need those prayers as this particular consultant is renowned for being very difficult as he’s on a constant power trip.

I will not be giving up the fight for my right to be treated with Mepolizumab as I satisfy all the criteria. Have a good weekend. 🌺🌸

[Honeysuckle21 in reply to Hidden]

I think that is shocking, from the sound of it you need it ASAP , I will keep you in my thoughts and prayers until you get the treatment you need . Let us know when you finally get the treatment you deserve.

Take care and I hope you have a good weekend. X

[corinneyvonne in reply to Hidden]

Hi rainbowbrite33 I am sorry to hear of your struggle to get the right treatment. Mepolizumab was not available to everyone with SREA (this is my acronym because severe refractory eosinophilic Asthma is too exhausting 😂) until very recently. The NHS is now rolling it out to everyone in this category. My Asthma nurse sees three new patients every week in clinic so it should be available in your area but they will prioritise the most urgent. Have you thought about going private for your first appointment and then the consultant will just refer you to the NHS for treatment? I did this after 12 nightmare months - multiple exacerbations, A&E/hospital stays. It wasn’t easy as I had lost my job by then and finances were tight but it was the best decision I ever made. I have been on Mepo (Nucala) for twelve months and I am very well. I am so grateful for every breath that I am able to take now. My consultant at The Chest Clinic at Royal Preston Hospital is called Dr Aash Vyas. He also runs The Manchester Institute of Health & Performance which may be easier you you to get to. I have included the link below so that you can have a look at his profile:

mihp.co.uk/consultant/dr-aa...

He also works with breathlessness in athletes. I cannot recommend him more highly and he is lovely 😊. Hope this helps. I know that it is difficult to be strong and determined but this is the only way to get the treatment you need. My thoughts are with you 🤗 If you want to meet for a coffee and a chat let me know (I am based in the North West) 😄. I am thinking of starting a support group for people with our condition 🙏 x

[Hidden in reply to corinneyvonne]

Thank you for your message corrinneyvonne. I am so pleased for you that you have been treated with Mepolizumab and delighted it’s made such a positive difference to your life and your quality of life too. 👍👍🙏🙏

I have wound up in resus & was acidoic and it was oniy by the grace of God that they were finally able to get my airways open using massive amounts of .aminophylline. They had already told my poor husband that I wasn’t going to make it as the pc02 readings were atrocious and the next stage was multiple organ failure ..no way back from that.

This particular consultant is well aware of just how severe my asthma is and got our hopes built up about me being treated with Mepolizumab over 2 years ago..but is now effectively trying to hide from us and avoid us as he knows he has let me down very badly indeed.

Am trying to find other sources for treatment with Mepolizumab where we do not have to deal with such an unpleasant, unfeeling & disingenuous person.

Good luck and stay well 👍👍🌸🌸🌺🌺

[Hidden in reply to corinneyvonne]

I would love to meet up for coffee and a chat but unfortunately I’m nit in the north west (I used to live there and loved it👌👍)

You take care and have a lovely weekend. 🌺🌸

[Cb28]

Hi Honeysuckle

I just want to thank you for your post it helped me so much . I came off montelukast and am back to my normal self ... no anxiety ..relaxed back to my usual self and feeling loads better so thank you .

I hope your wedding went well and for all the other members I hope your all feeling better too x

[Honeysuckle21 in reply to Cb28]

Oh I’m so pleased to hear that , I am so happy you are feeling better now you are off the Montelukast.

Yes the wedding was fantastic, my daughter looked like a princess, and I managed to get trough it all reasonably well so it was wonderful. Thank you for asking .

Hope you continue to stay well . Xx