desperately hoping for improvement

[Paul77green]

my shortness of breath became so severe during this last months that I’m starting to fear for my life! Even the prednisone is not helping me much anymore! I don’t know what to do!

[Jolu29]

Hi sorry to hear, have you asthma nurse to help you, Asthma uk nurses are good. have they mentioned biolgics. If you can't breath phone 111

[janedivney]

Cardiac problems can also cause severe shortness of breath - you need to get this checked out. Ask your dr to arrange an echocardiogram.

Also, I was experiencing severe breathlessness on the slightest exertion, which didn’t respond to prednisone. I was sent for a specific type of CT scan & the radiologist spotted I had EDAC (Excessive Dynamic Airway Collapse) in excess of 70%. My main airway was collapsing on every outbreath. In some people this can be even higher. I was given a CPAP machine to use at night (usually prescribed for sleep apnoea) and for reasons they don’t yet know, this helps daytime breathing a lot.

I’m not saying you have either of these problems but I think you definitely need the cause of your breathlessness to be properly investigated & not assumed to be “just” asthma. It could be more complicated

[Patk1 in reply to janedivney]

Has yr edac improved janedivney? I've edac >90% collapse and tracheobronchomalacia >90%.I was already on bipap for type2 respiratory failure x

[janedivney in reply to Patk1]

No, I don’t think it does improve, does it? My lungs are always throwing some new problem at me, it’s a constant battle isn’t it x

[Patk1 in reply to janedivney]

It is.im same,one thing on top of another.its very hard.x

[Homely2 Administrator]

You need to speak to, a specialist, who knows what they are talking about. Kick off by talking to asthma UK on 0300 2225800, office hours. Their asthma nurses are very knowledgeable, about asthma, and dealing with the NHS system.

My asthma has been horrible for two months now, and my GP asthma nurse is basically not available, I think she is doing flu jabs. So I emailed the hospital and have an appointment for early December. Not ideal, but better than nothing.

Re biologics, Asthma UK have told me which biologics I qualify for, and told me how to navigate NHS to get there. A difficult, but doable path

[Paul77green in reply to Homely2]

Yes biologics it’s probably my last resort! I live in the USA and it’s a very expensive and difficult process but I’m definitely starting to look into it! ASAP ! I’m only 56 yo and I’m pretty much in bed all the time or I get too out of breath!! Thanks everyone 🙏🙏

[Kekememe1 in reply to Paul77green]

Have you tried antihistamines? Sometimes the antihistamines along with the prednisone is very helpful. Maybe you need to up your prednisone dosage. 10mg of prednisone does nothing for me, while my maintenance dose is 20mg. If I'm struggling, I'll go up to 40mg. My doctor has approved this and supply me once a month as I am now prednisone dependent. Also the biologic Dupixent did not for me and my doctor put me on Trelegy. Game changer. I can inhale deeply now. Please talk to your doctor asap. I'm in the USA also.. Hang in there.

[Paul77green in reply to Kekememe1]

Thank you for your input! Trelegy it’s not doing much for me! This disease has truly ruined my life! I’m 56 and I don’t know how much more of this I can take! And I have never smoked or drink in my entire life! Better health to all of you!!

[Kekememe1 in reply to Paul77green]

Sorry to hear that Trelegy is not working for you. It shows how different we all are. Dupixent works for a lot of people, however after taking it for almost two years it did nothing for me except that I gained a huge amount of weight. There are different biologics that I could try but for now the Trelegy is definitely helping, along with antihistamines and I'm also still on Prednisone. My mother was exactly the same, she had severe asthma and I'm the only one of her 5 children that inherited it. This disease gets more challenging as we get older but thank goodness for modern medicine. The biologicas may very well be a game changer for you. I'm in the States too and I have Blue Cross Blue Shield and it was fairly easy to get it probably based on my many years of documented doctor visits for asthma. As previously mentioned, talk to your doctor about increasing your Prednisone. I never had Prednisone before until 2016. All other times, I would just get a breathing treatment and sent home. Once I hit 50, everything changed. They had to bring in the big one!!! It is a curse and also good drug, that Prednisone is!!Let us know how you get on. Take care!

[Birthday60]

I’d ask to be checked out for acid reflux

[Lysistrata Administrator Community Ambassador]

I agree with others - this needs to be checked out. And I definitely second Homely2's suggestion to call the asthma nurses on the helpline as well. They can't treat you but they can listen and make suggestions to take to your GP or asthma nurse.

I do agree that it's possible your symptoms aren't due to asthma, if you're not responding to oral steroids, and you need to get checked out and find out what's going on. But equally, not all asthma does respond to systemic steroids like prednisone - mine doesn't, and it's not uncommon for some types of asthma. Sometimes it's the type of asthma, and sometimes your body can just stop responding as well.

I'm saying this just in case anyone you see tries to say 'if it doesn't respond to pred it can't be asthma' as that isn't true - but the treatment guidelines do still tend to assume everyone with asthma does respond.

I would also say if you've been under GP care only, it's likely you don't know what type of asthma you have. This isn't a problem and you don't necessarily need to at this point. I only mention types as an example of why some people with asthma might find oral steroids less helpful. This page is a start on types, but it doesn't go into steroid response: asthmaandlung.org.uk/condit...

[runcyclexcski]

Were you on prednisone already for quite some time? One gets tolerant to it, and the effect can be seen with the dosage increase.

In my experience, the only three paths beyind prednisone are:

-- desensitization (if allergic asthma);

-- biologics (~5 options), going private may help speeding up the approval process.

-- massive changes to the environment in which one lives (and especially sleeps).

[Paul77green in reply to runcyclexcski]

yes I’m think this is part of the problem! I have been on prednisone for almost 3 years! Low doses: between 5 and 10 milligrams! I’m taking 10 mg now every morning but I can tell it’s not doing the job anymore! The fatigue and shortness of breath is just too exhausting! I live in the USA , and yes my last resort is to find a specialist and try biologics ! I was also told that I have a very rear immune disease called: IGg4 … it’s just nice to hear some of your comments out there and not to feel completely alone in this suffering world!!

[runcyclexcski in reply to Paul77green]

I used to take 20 mg for a year when 10 mg was not cutting it, before I started on a biologic. You need to see a specialist to discuss the dosage increases etc. and to ensure that you have a supply of prednisone to carry you through this difficult time.

[Paul77green in reply to runcyclexcski]

Thank you so much! Hope you are doing okay with your health!! 🙏🙏

[runcyclexcski in reply to Paul77green]

Same to you! I do not know where in the USA you are, I used to get good care at UCSF when I lived in the Bay area 20+ years ago (this is where I developed asthma).

[Kekememe1 in reply to Paul77green]

Oh boy, that low dose ain't cutting it. You definitely need to talk to your doctor to increase that asap. That's the evil side of prednisone, your body will always want more as the body get tolerant. My maintenance dose is 20mg and everytime I try to taper to 10mg, I get so fatigued and flare up. Consider this, if you were to be admitted in the hospital right now, they would easily start you off at 40mg. I've been taking prednisone now for 5 years and I pray that some day I can get off it but I doubt I will. Talk to your primary care doctor asap. Ask him about the Trelegy too. It has made a massive difference for me. Good luck Paul.

[Paul77green in reply to Kekememe1]

I totally agree with you! I live in denial for the last 2 years thinking that I can get away with a very low dose! Paying the price with an extreme severe fatigue and so on …. Knowing that I need more! It’s literally a bad addiction that unfortunately my disease has created!! Thanks for your input

[Poobah]

I note that you have both asthma and COPD and only list Prednisolone as treatment. Normally, maintenance inhalers and a rescue inhaler would be the main treatment, with Pred being a supplement for exacerbations. However, if you're on Pred permanently and it's not achieving control, you need to review your treatment plan with your specialist. Biologics won't help if the main cause of your breathlessness is COPD, so it's important to establish the cause of this decline. If it is asthma, then your doctor will review all the options available, including biologics.

Ideally, you would have a maintenance inhaler for your asthma (LABA type), along with a rescue inhaler. Plus an inhaler for the COPD, from the LAMA group of inhalers.

Other conditions also cause breathlessness, so definitely time to talk to your doctor.

[Paul77green in reply to Poobah]

Didn’t mention it, but yes I’m taking Trelogy as a maintenance inhaler, also ventolin sometimes as needed, and a nebulizer once a day! Unfortunately they do very little to help with breathing! It seams like I have a rear immune system disease called IGg4 which makes asthma and COPD even worse! I’m hoping to eventually try biologics as a last resort!!

[Poobah in reply to Paul77green]

That certainly paints a totally different picture. I'm not surprised you're struggling. Biologics are licensed to treat IGg4 and would be the logical next step. I hope that you can access that treatment soon. In the meantime, it may be worth asking your doctor if you can use the nebuliser more than once a day, in order to get some relief. It's only a stop gap until they arrange more effective treatment. All the best.

[Patk1]

You really shld see gp and request referral to consultant.please don't stay in bed.remain as active as yr able.take a look at controlled breathing techniques on aluk website. It will help during tough times to slow and steady breathing.have u had a ct scan