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Beginning to despair

I have been unwell for about nine weeks, off work feeling very unwell. I've been to see my GP seven times over this period and have not seen the same doctor twice, on my last visit the doc decided to ask the chest clinic to see me. I went today, I was due to have my xolair injections so I saw the asthma nurse first, she was very concerned how unwell I was and wouldn't give me the injections till I had seen the doctor. There were two doctors there and I got to see The registrar rather than the consultant... it's pot luck who you see. He didn't even listen to my chest, he said he didn't think it was my asthma as my peak flow is reasonable (350 today) I took my mother in with me thank goodness, she couldn't believe the way I was treated by him. He said I could have my injections as usual, the nurse was really not happy that he hadn't done anything. I just don't know what to do next. Does anyone else have really bad asthma symptoms without their peak flow dropping? I'm really considering paying for a consultation privately as I can't go on much linger like this.

Sorry to ramble on I'm so fed up I don't know what to do next!

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Sorry to hear you're struggling, really frustrating! What kind of clinic is it where you get the Xolair? I always thought you had to be in a specialist centre for asthma specifically to get them, not just a general resp clinic but maybe some general resp clinics do it. I have the wrong sort of asthma for any of the new drugs but was referred to a specialist severe asthma centre for testing to see if I could have them. (I still go there just don't have the drugs).

It should be possible for next time to ask at the front desk to see a particular doctor. Most places will not advertise that but they usually don't refuse. Not helpful for now but if you wanted to see the cons next time if they are more helpful.

My peak flow is honestly a bit useless. I've had severe attacks with ABGs that show definite dodgy asthma stuff going on ans that need back to back nebs, magnesium in resus etc and my peak flow can be over 50% which is not supoosed to be possible at that level of attack (it is insanely hard to do though, I just get a result that isn't as awful as you'd expect). The main thing here is it won't be budging until I've had a lot of treatment and even then will only go up a little for a short time after nebs. When I am actually recovering my PF will start to respond better to treatment, but as a number in itself it's not much use. My best peak flow is also way better than predicted which doesn't help.

Despite all this I have had a cons who is meant to be an expert in asthma, but who is obsessed with peak flow, tell me that I should not go to a and E if peak flow is above 50% of my best!! I have had at least one attack where I was hypoxic with peak flow of 400 so yes it is possible and a bad idea to ignore.

Did you get given the Xolair in the end? Is your GP good? If the centre is not an asthma specialist place but a general resp clinic which gives Xolair (if that is possible), maybe you need to look at more specialist places which do the Xolair but also maybe have more support etc.

Hope this is useful.

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I was referred to Glenfields in Leicester to be prescribed the xolair but I'm given it at my local hospital now by the asthma nurse after about a year of going to Leicester every month. My GP is okay but I've been about six or seven times and have not seen the same doctor twice, and you can't ask to see a specific doctor.

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Ahh I see how it works now. Sounds like your local doesn't quite get asthma and just doles.out the injections- though clearly the nurse was on the ball but then I think they have to get training to give it.

Can you ask to go back to Glenfields or is it too far for regular appts?

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Hi

Sorry to hear that you e had such a rough time of it recently!

Luckily for me my PF almost always drops when I’m ill, however I have a really high best so some docs ignore me if I’m at 50% because that’s about the expected level for my age 😡. However, I know that there are a few on here that PFs almost never change (even if really ill!). My issues is that I rarely wheeze, so even if my PF is at 50% I occasionally get told it’s not asthma as no wheeze 🙄 (wheeze is my last to appear symptom and disappears again quickly if I worsen further)

He definitely should have listened to your chest if you felt like you were wheezy 😒. Similarly to Lysistrata I’m wondering if you’re at a resp specialist hospital or not (I know that people who started Xolair years ago can get it done at their local hence the question!). If you’re not it’s probably worth asking to be referred to one!

If you’re unhappy and feeling up to it, try speaking to PALs about it... maybe they’ll be able to set the ball rolling so that it doesn’t happen again. If this is a constant thing for you at that hospital (and it’s a resp specialist one) and not a one off, you can ask you’re GP to refer you to a different resp hosp if you don’t feel safe or supported where you are.

Hope you start to feel better soon xxx

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My peak flow generally has nothing to do with my asthma symptoms. On a normal day it's 350 but can still be that during an attack.

Is the xolair working for you?

I'm under the care of the hospital but generally don't go to the gp about anything as they never listen. Took them 10 years to realise how bad my asthma was on a day to day basis before sending me up to A &e because I was on deaths door. Been under the hospitals care ever since.

I would try writing to your consultant about everything that generally does the trick and gets them to take it all a bit more serious.

Hope it works out before going down the private route

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I am sure the xolair works I have been on it for about three years but it's for the allergic asthma ... dampens down the allergins, I'm sure that whatever has triggered this is viral so that's why it's so bad. I am speaking to my usual nurse tomorrow so I shall see what she says hopefully I will get some help!

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Hi Sassh. I really feel for you. I've been off work for 6 weeks and on my 3rd lot of steroids. Not had an exacerbation like this for a very long time. It's soul destroying. I am lucky in that I have a good asthma nurse at my surgery who is very supportive.

Your treatment is apaling . You need continuity of care not passed from one to another.

You must keep going back. Peak flow is not always a true indicate and 350 isn't exactly high! I don't know what you usually score though. Mine is 370 on a very good day. We are all different and that's why you need the continuity of support and care.

Go back and take Mum again. Get them to listen to you and your chest. This is important.

Take care. Good luck xx

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Thank you Rosalind_23 my peak flow on a good day can be 400 I am so fed up I feel dreadful today again. Hoping to get a call from my hospital asthma nurse this morning. I still can't get my head round the doctor saying I don't think it's asthma but I don't know what it is .... I was dumb struck I didn't know what to say. I was waiting for him to suggest what he was going to do next and just got maybe we could do some breathing tests and see you in two months!

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In my experience GPS don't understand asthma. Your asthma nurse is your specialist. I never go to my GP for my flare ups.

I'm fed up with me today so know just how you feel.

I'm going back to basics with some slow yoga breathing. If you've never tried it give it a go. It will help to relax you and open up your airways. You only need to do 5 mins. Have a look on utube for good demos.

I don't know how old you are bless you. I'm 66 and was diagnosed at 40. There is no one size fits all for this awful disease we just have to find the best way for us.

I'm desperately missing cuddles with my 2yr old grandson. He is the light of my life and my driver for getting/staying well.

Find your positive and focus on something lovely that you want to do. Don't push yourself beyond what you can do right now. A smile in your heart will help.

Really hope the medics do right by you. Sending love and hugs xx

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Thank you so much for this lovely reply ... I'm 54, I was diagnosed at 15, I have two boys 17 and 19 they're wonderful but worry so much especially the younger one I try not to show how awful I'm feeling. Have a lovely weekend xx

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Hi Sassh. I have thought long and hard before sending this to you. I read your last message with more sadness than I can describe. It is for that reason I hope you don't mind if I tell you a true story about me that happened 8 years ago.

I lived alone at the time. It was about10:30pm when I admitted to myself that I couldn't even get to the kitchen which was a few steps from where I sat. I dialled NHS direct for advice and got a truly lovely young man who took my call. He asked all the usual age, did I live alone, how had I been where did I live etc. It took quite a while to answer as I was so breathless. Then he said something that sent a chill down my spine. The ambulance will be with you in 5 minutes. He had despatched it within the first 2 mins of the call. I was horrified. I didn't need an ambulance. The paramedics knocked,did some checks and said they were taking me in. I was still in denial. You'll be home in a couple of hours they said. Don't worry. Oh how they lied to get me in that amblance. Oh how glad I am now that they did. I was settled into bed and asked who I wanted to call. No one I said not at this time of night. I'm not getting my kids up they'll be asleep. My son was then 32 my daughter 28. I waited until 6am and sent a quick txt to them both asking if they were up. My son came back in seconds with. What's wrong?. Well I sent a very diluted don't worry but I'm in hospital I'll be ok just letting you know kind of txt. I still don't know how he got from his home to that hospital 35 miles away in the time he did but I will never forget the fear in his eyes as he wagged his finger at me. Don't you ever do this again Mum. You should have called last night. I tried all the excuses but then my daughter was there. You don't need to tell her off he said. I already have. Then she said. Mum how would you feel if we didn't tell you if we were I'll or in trouble. Those words cut like a knife. They were said with love but oh how bad I felt...Un needed. Not good enough. Not important enough. Not trusted. Not loved. All went through my head. Yes all of the above is how I would have felt. I promised then that I would never keep anything from them again. I was in hospital for 10 days.

I'm sorry this is so long. But I'm sure you know why I'm sending you this. It's a bit of tough love I know. And I know your lovely boys are younger. But they are old enough to be trusted with the truth as you would want them to trust you. They're already worried because they know you're not telling them everything. Fear of the unknown is the worst. Please let them help you as much as they can by telling them how things are and then when you're well again you can go back to being the Mum you want to be.

Don't wait til they're looking scarred at the end of your hospital bed as I did. It was so unfair of me but I didn't realise. I thought keeping it from them was right and it wasn't.

I send this with much love and wishes for the best for you and your boys xx

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I'm from the States in California, I have a nebulizer like what they give you in the emergency room. I've been asthmatic since I was 16 years old, I'm 57 and still suffer from asthma and still have my rescue inhaler. Lol, I have a flow meter but I don't use it. I'm a guy, when I can't breathe I feel I don't need to use a (stupid) flow meter to see where my levels are at as I just use what's needed to open my lungs up so I can breathe again.

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Yea I agree they're stupid and not a true reflection on your state of health. I too have a nebuliser but have been warned to be careful and to go to A&E if I'm struggling. Really wish I had gone in the beginning to be honest but I felt so awful and they were saying the hospitals were all full and not to go unless it was a real emergency... what a position to be in!

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Yoga sounds useful for relaxing and deeper more relaxed breathing.

Please also try taking 1000iu daily Vitamin D3, 400mg daily Magnesium glycinate chelate, and Vitamin k2 and at a separate time- high dose Vitamin C with some absorbable Iron.

Have regular baths in Epsom salts, magnesium flakes and himalayan rock salt with calming anti inflammatory and anti viral and anti bacterial oils.

Also try to have dailybwalks in a natural place, preferably by the sea.

I think you will see some improvements in your lung function and the frequency and severity of asthma attacks.

These things are helping me it seems, plus a generally healthy diet, low in wheat and sugar.

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Thank you

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