Feeling frustrated 😬🥴 quality of life is getting harder, walking pharmacy 😱👀

[mylungshateme]

Hi guys,

I'm completely new to this so apologies in advance... but any advice welcome on severe allergic asthma and esophillic asthma. just to know I'm not the only freak of nature that reacts to everything be good to know.. 🤪😂🤣

"Normal" asthma since a kid no real issues, past few years been changing under specialist teams at hospital. On max of all meds they've tried everything but my asthma doesn't respond, but is responsive to prednisolone but the side effects... but I'm alive so side effects a minor really.

Was shielding now back at work, had to attend hot clinic fri chest xray ok an bloods no more deranged than usual. Respiratory team have said the only thing that will help and get back control, and I really hope some quality of life is biologics I'm eligible for 2, but huge waiting list.

Have any of you gone private to start biologics? Is it even possible? Dare I ask how much you paid? 🙈💷💷💷

Thanks 😉🙂

[madonbrew]

Hi ,

Sorry to hear you are having such a rubbish time! At least one good thing is that you are under a specialist & that you are on your he list for biologics.

Steroids...well yeah, they can be so helpful in many ways reducing inflammation, yet the side effects aren’t great at all hey! I can’t actually take them long term because they mess with my head really badly...as in suicidal depression, so it’s on my notes now not to prescribe them long term.

However, as long as they are not messing with your head in that way, if they are helping to keep your asthma a bit more under control, then like you say, the other side effects are the lesser evil.

I’m not on biologics...yet...at least for my asthma. I have a biologic drug for other health problems but only once or twice a year and know that it’s expensive!

Sorry I don’t have any really positive story...but just to know this is a great site with lots of support and people who will understand!

Dee

[mylungshateme in reply to madonbrew]

Hey Dee. Omg sorry of your horrific experience with prednisolone. On the positive side at least you know what it was and like you said flagged in your notes so won't happen again. 🤦‍♀️ yea insomnia literally barely sleeping not sure how long can continue working for mainly due to asthma but now extra exhausted 😂🤣😂🤣 it's all fun and games. I'm literally holding on to biologics 🤞but more importantly trying to just do day by day as was getting anxious about future which is so not helpful with asthma or life lol. But what doesn't kill you makes you stronger, and there are people far worse than me so onwards and upwards 😉🤭

[madonbrew in reply to mylungshateme]

Thank you! I seem to be ok with them short term but long term...anything over 3 weeks, isn’t good. I was on them for a year at some point, 40mg, a long time back&thankfully we figured out the awful depression & dark thoughts were because of them. So now, we only go there as a desperate necessity!

Anxiety doesn’t help hey, and it’s think after being shielded, then going back into the world again feels quite anxiety provoking! Like you say...day by day! Really hope it’s not too long a wait for you!

[EmmaF91 Community Ambassador]

Hi

Sorry to hear this. If you have a number for the hosp who will give you the bio, keep chasing them, esp if you’re in and out of hosp and have no quality of life.

My local hosp did that for me and the spec put me down on the ‘cancellation’ waiting list. Short notice for the appt but got seen quicker.

The waiting list for spec hosps/MABs are comprised of a range of severe asthmatics. Some in the list technically meet severe criteria (3 preds in a year whilst on max therapy and the markers etc) whilst others are in hosp/icu every week or 2. Triage wise the latter is more urgent to be seen (a bit like an uncontrolled kid doing GCSEs is more urgent than the same kid who is in year 8... as the affect of life is greater - year 8 is ‘easy’ to catch up on, year 11 that’s you’re qualifications and dictates what you can do with your life etc).

I went really bad whilst at uni, got put on the waiting list, then my local got frustrated (after about 6months i think) cause they knew I needed more, so every admission they called the spec and asked for an appt. The 3rd time they did this they came back with an appt.

Remember the waiting lists don’t give any urgency, so try to show them by proactively chasing/explaining your situation.

Hope you find the help you need soon

[mylungshateme in reply to EmmaF91]

Hi EmmaF91, thanks for your message 🙂 that's awful you had such a crap time while at uni, as if uni not hard enough. It's really interesting what you said about criteria etc. I'm lucky re admissions I've managed to bypass as I used to work with my gp practice so we would do what we could there and manage at home. It's only when talking to a consultant last week i actually realised how many admissions i potentially could have had an that's scary. I'm only just accepting I can't do what I used to, and learning a new way of life I guess without feeling too cross or frustrated at myself. You know when your a pro at convincing yourself let alone everyone else your fine lol. 😂🤪🙈

[Pipsqueak77]

Hi mylungshsteme

I’m sorry you are so poorly and are having to wait for biologics.

I do think that like a lot of things biologic treatment is a bit of a postcode lottery.

I was lucky enough to only wait about 6weeks and started treatment during Covid lockdown do I think I have been really lucky.

Is there any option at all to be referred to a different tertiary that may have a shorter waiting list??

Hope you get sorted soon..🤞

Take care 😊

Ps. Love the name😂😂

[mylungshateme in reply to Pipsqueak77]

Hi pipsqueak77,

That's interesting about your waiting time, how are you feeling now? Or too early to tell? I really hope it works for you and continues to do so 🙂. The name - a colleague said to me "wow your lungs must really hate you" I laughed then thought hmmm fair point! 😂🤪😂🤣.

[Pipsqueak77 in reply to mylungshateme]

Hi

I’ve had three injections so far and all is great!!🤞🤞🤞

Eosinophils pretty much wiped out and better asthma control than ever before.

No problems even in this really hot weather..

I hope you get your chance soon..

Take care 😊👍🤞

[mylungshateme in reply to Pipsqueak77]

Wow wow and wow amazing. So happy for you after just 3 injections too. 🥳🥂😁

[doonhamer1967]

Hi, I started last year with seven attacks in the first seven months. I am on fostair100/6 eight puffs a day, spiriva tiotripium two puffs a day, Uniphyllin 300 mg twice a day, montelukast once a day and an anti histamine daily. I have not experienced any side effects from the drugs. It was predictable but scary, for family and myself. I have great support from the respiratory team at my local hospital and find recording peak flows and relative conditions (coughing, lack of sleep, work patterns) have been a great help. This data along with the frequency of attacks/prednisalone and tests convinced my consultant to recommend Mepolizumab. I started this ten months ago and have had ZERO asthma symptoms since! It has been a rollercoaster four years from Late onset asthma diagnosis to severe eosinophiliac asthma diagnosis to increasing drugs which seemed to do nothing to attending my local hospital every 28 days for an injection and getting my life back. During this time it has felt like there is no future but thankfully the respiratory team have persisted and appear to have found a better place for me. All my treatment has been through Scotland's NHS. Still a lot of time/unknowns to encounter with covid but I am now positive and happy to live a normal life. I sailed through last winter and hope to do the same this year. Mepo has transformed my life.

Asthma is hard but can be controlled, it just takes time. Be strong.

[mylungshateme in reply to doonhamer1967]

Doonhamer1967 hi, wow what a journey that's really quite incredible. I'm also very happy with my respiratory team I ring them leave a message they call back same or next day. My consultant has called me during lockdown just to check in on me. Nurses are supportive and gps I can't fault also respond quickly and working together. It didn't help as I've been reacting to new antihistamines- trust me! Haha. I'm just getting impatient as theyve said I'm not going to improve without injections and need to speed things up then they say there is a loonnng waiting list.... just be nice to walk and carry my baby again...or walk up the stairs without a "rest" haha. 🤭