Hi everyone I hope your all keeping safe and well. I’ve not written on here for a long time. I am struggling a lot with my severe asthma. I’m on a lot of meds including prednisone continuously for about 9 years. And now bio chemical injections every month. But I can’t seem to complete anything without getting breathless. I can’t walk far or do exercise. I’m just sitting at home. Feel like my mood is dropping to. Anyone else have problems with breathlessness. I have been home since March isolating and then furloughed then made redundant. Now after another hospital stay my doctor and I feel work is now out of the question. I’ve worked since I was 13 years old so this is hard to accept to. I feel like my asthma has taken over my life and I’m drowning as I can’t catch my breath. Sorry to moan it just helps to put it in writing sometimes so I can try and move on. I would be happy for any advice. Thank you.
More Breathless : Hi everyone I hope... - Asthma Community ...
More Breathless
I'm sorry you've had a tough year and I'm not surprised your feeling down. A little bit of exercise is better than nothing. Have you read up on foods that arent good for asthma.. Ie dairy.My Consultant politely told me that I needed a bit of weight off last week.. It doesn't help asthma at all, plus it's detrimental for so many other conditions too. So that's my goal... I probably just needed to hear it. I did Jason Vale Juice Master last year lost a stone and felt amazing, plus it helped my asthma. He's got a great documentary on You Tube... Super Juice Me, it lasts for 1hr 20, follows 8 patients, one with asthma... The results are amazing.
Yes I’m on a almost vegan diet at the moment. It’s taken a while to get all ingredients I need. It’s new to so I’m still hoping for better results. I’m not bloated anymore lol. I will check out the super juice me on you tube. I really am piling on the pounds with limited mobility . I really appreciate you taking the time to answer. Thank you and good luck to you x
Hi. I thought after I'd written it, I shouldn't have said all that. But I think my Consultant said what needed to be said and I knew he was right... I think we'd all like to wave a magic wand and be ailment free without putting in some work ourselves. All the Juices have more nutrients in than what we'd eat In a week. Give yourself a short 7 days blast and see how you feel. Your not tired at all, but by day 3 you might develop a headache with leaving the sugars behind, that goes. I do hope you feel better soon.
It is harder to get oxygen out out cold air. The way I saw things when health problems stopped my old life was too look at it as a new life, it's hard and takes time. You grieve for what you have lost but then you think what you can do. Me I took up knitting and crochet. I also do s form of tai chi it's called she bashi it's for people with health problems it's in Google
Good luck, and gentle hugs. Hope this helps
I’ve never heard of it but I’m going to look it up. I hope it is helping you feel better. My doctor told me a new start isn’t a bad thing and I’ve worked hard so think of it as early retirement. My brain just hasn’t got that idea yet. Thank you for your kind words x
Hi Fallon. Your experience sounds really yuk. At times in life, when we're facing a situation we'd rather not, the only thing left is to take control of what we can. We still have control over what we eat and our vitamin & mineral intake. It's always important to maximise our well-being, but especially when we're fighting illness. If you're not going out much, especially in this covid year, then your VitD levels won't have been topped up by exposure to the sun. VitD is essential for our immune system and for fighting infections. The NHS is offering free VitD3 to patients like us and that's only for 3 or 4 months. I take 2000iu daily and have done so for years as my levels were low. A recent blood test shows my levels only just in the adequate range despite these efforts. Eating oily fish helps us metabolise VitD.
And if you're sensitive to aspirin there are some foods to avoid. I assume that this has already been ruled out by your doctor and you would be on dry powder inhalers as a result of any sensitivity.
Are you able to do exercise at home? The NHS have some starting exercises to get you started, sitting down: nhs.uk/live-well/exercise/s...
Please keep us posted on how you get on with any changes you decide to make. You've got a ready made cheerleader team here on this forum. Good luck.
This is a short video explaining the VitD affect on asthma youtu.be/txUuZFRnQMU
NB that the amount of VitD3 advised is very high and I would do further research before embarking on it. And if you have any kidney complaints then discuss VitD3 supplements with your doctor.
Thank you that’s of lot of help. I’m on vits etc. I just seemed to of got worse gradually over a few years then suddenly gone from working and some exercise to nothing. I have children who I feel bad for because they have to help with everything. Some days I can’t even cook. But your right I’m usually a positive person and I have to get my confidence up and setting small goals sounds like a great idea. Thank you x
Hi
Sorry to hear how down low you’re feeling atm. Have you spoken to your tertiary clinic about this? A lot of tertiary centres have an asthma psych who can really help, as they understand how asthma can affect stuff etc.
I’m not sure which MAB you’re on atm, or which you are eligible for, but again if you discuss what’s happening with your con there they may be able to switch you to a different MAB to see if that helps (for me switching from xolair to mepo made a massive difference!).
Give yourself small tasks to complete each day - even something as simple as 10 sit-stands in a row using a chair. I’m assuming you salb before you do anything exercise related to help with that.
The other thing to ask about is attending a pulm rehab course, which can help give you ideas of gentle exercises you can do, or resp physio to give you chest clearing/breathing control techniques and double check you haven’t picked up a BPD which is making you feel worse.
I’m assuming you are under a tertiary hosp, so it’s really important you tell them what’s going on (not just local hosp).
Remember you’re not alone - asthma sucks! Sending you hugs and hope this helps
Thank you that’s very kind. I do feel that with COVID I should just get on with things as the hospitals are busy enough but I’ve just decided to contact my con tomorrow as I need help. It’s been so nice to get this support on here I’m really glad I wrote on here. Thank you again x
COVID really threw a spanner in the works for most of us. But whilst occasionally slower than usual, I’ve found that both my secondary and tertiary teams have listened and been helpful about stuff. Since March I’ve had multiple hosp trips (all bar 1 leading to admission), but have also had my planned tertiary appt (in the phone), and multiple appts with secondary care (both phone and in person). I’ve been switched from pred to kenalog, and there is a discussion about switching from benra to dupil (but we’re giving kenalog a chance first 😅). I’ve also asked to be referred to asthma psych (which I planned to do last year and just kept forgetting 🤦♀️😅).
Don’t let yourself be sucked in to the ‘well I don’t have x so shouldn’t complain/don’t have a right to feel low’ or the ‘they are busy’ trains of thoughts. The teams are there for you, and have been running throughout. So don’t struggle in silence. Tell them and they may be able to help!
Hi Fallon, sorry your are having these breathing problems but I know how you feel. Before I was diagnosed with eosinophilic asthma and put on a monthly injection of a Biologic, I was on and off Prednisone for a couple of years...when I was off Prednisone , my eosinophils which control inflammation and made my asthma flare up but I just tried to balance that between bouts of pneumonia and bronchitis (requiring more prednisone). At one point, Prednisone stopped working for me and I went to the Mayo Clinic...they gave me a timetable for a gradual reduction in prednisone (which took about a month....you have to come off slowly), they cleared up an ongoing UTI with 60 days of Bactrim (1Xa day) and then I began my biologic injection with mepolizumab (Nucala) about a year and a half ago. I have not had to take Prednisone although I still take my symbicort inhaler but have cut down on that. The result of the stress and strain on my lungs has me needing to use a nebulizer every morning with albuterol first then saline. I too am out of breath if I don't do this regularly...I don't know if this is the result of the Prednisone and having to take so much of that for so long or just the progression of lung disease, asthma, bronchiectasis etc. I am prone to UTI infections and I notice that when I have one active, I am very out of breath...aches and pains all over and tiredness...after the sulfa meds...All of that disappears, and I assume my breathlessness was part of the UTI bacteria affecting my lungs. I am concerned now about taking the covid-19 vaccine. I know that it works by boosting immune systems which is what Prednisone lowers and the mapolizumab does the same. If my immune system starts to rise, will that bring back my asthma. That's something all of us as asthmatics need to investigate. I would suggest you get a blood work, check your eosinophils, check your urinalysis for any bacteria that needs to be treated and make a habit of using the nebulizer at least once a day. It is better than being out of breath all the time and it has helped me recover. Good luck! Hannah
Wow Hannah you have done really well. I dream of coming off of prednisone but it’s not even on the cards yet. I started Biological injections in Jan this year but after losing my hair and having severe headaches I was changed to a lower dose but it’s not making any difference to my asthma. My con is talking about another biological injection but the side effects are really bad and affect my blood to. So I’m not sure the devil I know or the devil I don’t. Time will tell. I am grateful for your advice and support. It really helps. Gives me options. Thank you so much x
Not sure which MAB you’re on but here is some info about the ones currently available for asthma in the uk; healthunlocked.com/asthmauk...
Don’t forget that each man can cause different side effects. For me the side effects of mepo were really bad (so bad I stopped it), but benra side effect were a lot less so more manageable. Everyone reacts differently. But if you’re on a lower dose than advised (to cope with side effects) it’s not surprising it’s not working 100%. Hope this helps
Hi Fallon12...I also had tremendous hair problems but that was from the Prednisone and that took about 6 months from the time I stopped Prednisone for my hair to stop falling out. There are several biologics out now, one may be best for you over another. You should investigate as I feel being on Prednisone too long can cause more harm than cure.
I agree I get more problems with prednisone. The side effects are not great. I hope my hair grows back but it’s not the most important thing at the moment. Yes I’ve got appointment in Jan to discuss changing the biological I’m on for another. Thank you Hannah x
Hi I used to be on the injections but they stopped working, I now have an infusion each month of which I don’t think is working, also getting very breathless I’m under Royal Brompton
Hope you improve soon
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