Don't think I'll ever be able to breathe properly again

[BG2015]

I've been struggling with my asthma for months now.

Lost count of the number of steroids I've been on. Had CT scan, x rays, lung function tests and am now under the respiratory team. The CT scan spotted evidence of infection (now healed) OR possibly evidence of damage from radiotherapy that I had in March. They just don't know. There is also a nodule on my lung (not cancerous).

I was admitted to hospital in November for 3 days as my peak flow was 180. I finished a 6 week weaned course of steroids on the 28th December, and now 3 weeks later my peak flow is down to 210 and I can feel myself going down hill again.

I've got an appointment with my asthma nurse on Tuesday but am just fed up of struggling.

The steroids are just a short term fix. They were hoping that my new steroid inhaler (Fostair) would start to work but I've increased the dose myself and nothing is improving.

What can they offer me now?

I'm sorry you're struggling, it sounds like you've tried a lot of stuff. I've got chronic asthma and copd as a result, and found Fostair good but needed pairing with spiriva respimat for best effect. I was referred to the serious asthma consultant, as steroids stopped working, which was a game changer. I still avoid prednisone now if I can, it just as easily makes me worse as better. The real change for me was a prophylactic course of antibiotics for 3 months. It totally changed the constant wheeze I had and got rid of a years long residual infection. I really hope you get some relief

Thank you for replying.

How do you cope day to day? Are you managing to do everyday things?

I am now. I'm back to manageable symptoms, but for a period of
Months I was seeing the doctor weekly and on steroids and antibiotics for at least 2 out of every 4 weeks, it was absolutely miserable. Now I've got my meds right I watch closely for signs of exacerbation and move onto antibiotics immediately, up my meds and move to pred if I need to. I have 40mg daily for 5 days and never more otherwise it worsens my symptoms

Similar to latemumma it was when my current inhalers were paired with spiriva respimat that things improved.

I had 17 years perfectly behaved asthma, previously to this was poor. Then in 2020 I caught something, covid?

My lung function fell off a cliff, I couldn't even climb the stairs without stopping. I was on constant steroids that didn't seem to help longer term.

I contacted asthma UK who were brilliant. Im now on montolucast, Fexofenadine, spiriva, seratide 250, ventolin.

I swapped out Fostair back to Seritide as I didn't feel Fostair gave me the results. Seritide brings a slightly higher risk of pneumonia but it's what has worked for me.

I'm well controlled again. Just had what I think might be covid again and got through at home with no significant issues, and no steroids!

It's a difficult journey, I hope you get your breathing sorted soon.

Give asthma uk a call. They are a good check list to make you aware of what is available.
It's then down to your doctors.

Oh I might do that.
I'm taking Montelukast too but don't know if they're making any difference.

I had breast cancer last year and finished chemo in Feb and had radiotherapy in March and then covid in April so no one really knows what's caused the change.

I used to do hill walking and spin classes but can't do any of that now!

It sounds like it related to the radiotherapy it's a common side effect.

Unfortunately I think there is limited treatment options for this.

If you can get in touch with your Oncologist or get yourself referred to the Respiratory Consultants at the hospital. But if it is because of the radiotherapy I think there is limited treatment options.

That's the trouble, they just don't know. I was slightly breathless throughout my whole treatment (chemo included) the radiotherapy certainly hasn't helped.

My CT scan letter said something about ground glass. Which I'm confused about too, I've googled it but it doesn't really explain much.

I've read something about 'biologics' which no one has mentioned yet. The steroids certainly aren't a long term solution now.

Really struggled today!

I managed to get through to my gp and they've prescribed some more Prednisolone. My DP and I started walking over to the chemist (7 mins away) to collect my prescription but I had to turn back as I was struggling to walk. He carried on to get them 🥰

Things are really bad unless I'm taking the steroids - I've got an appointment with my asthma nurse on Tuesday and I really need to push for further treatment!

I had very severe asthma, so bad that just walking a few steps inside my house left me gasping for air. I thought my life was over.

Surfing the net my friend found a website about how taking a course of macrolide antibiotics effected a cure in the writer. I asked my doctor and she agreed to try the protocol. It was something like 3 tabs a day for 3 days then two a week for about 6 or 8 weeks.

I felt like I had experienced a miracle. It was so amazing, almost unbelievable.

I went from 2 puffs of Fostair twice a day plus Ventolin in between to using no inhalers on a daily basis.

I did the treatment about 7 years ago. Since then the only time I get an asthma attack is when the pollen is high or I get a lungful of dust or smoke. Even then I only need one or two deep puffs of Ventolin or Fostair and it's gone. I use my inhaler maybe 5 times a year.

Google to find out more or ask your GP.

I've been prescribed the spiriva inhaler now by the respiratory team. I just need my GP to authorise it and get the prescription sorted.

Hoping I get success with it too.

How are you finding Spiriva, OP? I've just been prescribed it to add to my fostair routine.

I completely understand how you’re feeling. It’s exhausting mentally and physically.

I wasn’t ever diagnosed with asthma until I had a random asthma attack two years ago which landed me in hospital for a week. Fast forward a couple of months with lots of hospital stays with pretty bad attacks and never ending changing inhalers and medication, I was diagnosed as a severe eosinophilic asthmatic at a specialist respiratory hospital.

The past two years have been pretty shit if I’m honest, at least 12/13 exacerbations a year with continuous steroids courses but I now have biologic injections every two weeks on top of my usual asthma medication (Spiriva Respimat, Seretide, Montelukast, Azithromycin, Fexofenadine, Desogestrel and others) and I’ve managed a good period of time with no hospital stays 🎉 unfortunately my peak flows never properly recovered and now sit around 250 instead of 400 but I just want you to know that there is light at the end of a really shitty tunnel. ♥️

I practically rattle when I walk but I have some quality of life back!

Spiriva combined with symbicort and ventolin has been life changing for me, interestingly I can't get on with the powder version of symbicort which didnt work and have the aerosol version which is really effective. Hope the addition of spiriva helps you

@inloveandmarried did you manage to decrease fostair amount when you added Spiriva to your regimen? I have similar asthma symptoms after some infection and can't seem to get back on track even after a few steroid courses.

I'm really struggling after an infection. I'm 4 weeks in and chesty coughing/exhausted/wheeze at end of breath. Especially worse in the evenings.

I've had 2 lots of steroids/antibiotics and was sent for a chest x Ray but it's getting worse again now the recent steroids has finished. I've literally sat in a chair or laid down all day today.

I dont know what the next thing is. I'm on fostair already and doing a lot of blue. I'm so fed up with coughing fits and 4 weeks of hardly doing anything at home. I never quite know whether to call 111 as I'm not in urgent life threatening attack but its horrible.

Fostair with tiotropium work for me. (Tiotropium is the active ingredient in Spireva retromat).

So I've had a look on the airmid app and I can see my chest x Ray is clear (yay) but then why am I still coughing so much and feel.like breathing is hard. Does that mean it's more asthma?

More asthma drama for me. The Spiriva has made no difference at all.Started coughing up lots of green mucous about a fortnight ago, went to the drs who prescribed antibiotics but they did nothing. Had an x ray and did a sputum test. GP signed me off work for 2 weeks.

Peak flow back down to 160 so took myself to A & E after 4th day of antibiotics. Bloods showed no infection markers and x ray and sputum test were clear. Rang respiratory first thing on the Monday and they prescribed me yet more prednisone plus Uniphyllin which is a 12 hour slow release tablet you take twice a day.

This is my seventh lot of steroids in 8 months, not to mention the steroids I've been on throughout chemo last year.

She's also putting me forward for biologic injections but the team that meet aren't meeting until the end of March so I've missed out on the February one.

We're going to Mexico on the 1st April which I'm excited about and also dreading too. The asthma nurse did say that all asthma patients should take a course of steroids with them if they travel abroad as a matter of course, which I shall be telling my GP.

I don't know if I'm doing the right thing but I'm spacing the steroids out more than I should, they're a weaned course. We've been out for a walk this morning and it's such an amazing feeling being able to walk without feeling breathless.

I'm afraid unless this asthma is sorted out I'm going to be having more time off from work and that's going to create more problems.

Poor you, OP. You have my sympathy.

I'm coughing up mucus still - but its sporadic during the day. We had family for lunch and it was so noticable that I was coughing like a really old smoker throughout the meal. Its horrible. I teach workshops part time but its now going int the 5th week of thinking "should I be doing this?" It's taking all my energy to do the workshop (while coughing) and then come home and Im zapped.

I hate how long everything with the dr takes and that its tricky if I go do my workshop tomorrow I cant then ring the dr til 1.... when I spoke to one last week he seemd to think "just a cough" but in the morning it isn't so bad. I really am hacking away afternoon/evening and feel like my chest is being sat on. I have no idea how to move forwards.

Can you get your asthma nurse to refer you to an appropriate physiotherapist?

I am on seritide 250 rather than Fostair. I didn't get on with Fostair.

The answer is yes most definitely. I have halved my seritide (Fostair equivalent) and now I'm slowly reducing my spiriva.

@inloveandmarried , great! Did you decide to do it or did your consultant advise you to decrease the dose of seretide while on Spiriva and see how you get on? I'm just trying to figure out if I'd need to be on Spiriva forever... I guess it'll depend on how my lungs feel etc. Would be grateful if you could share your experience! Thank you :)

I have a really good asthma nurse that oversees me. I used to double check her advice with the Asthma UK help line before I would completely trust her (I've had poor advise in the past).

She advised me to very slowly reduce meds and monitor daily. It's been a long process but now a year on breathing ok and peak flow good. It's not as good as before 2020. It's believed I had covid early on and this affected my breathing longer term.

I'm keen to reduce meds if at all possible, but breathing is quite high on my list! So if I need to remain as I am I'm happy with that.

I'm just getting to the limit of what I need each day, I'll not be reducing further unless my health improves.

I see @inloveandmarried , that help a lot. I also has some resp infection last year and a couple of steroid courses but since then on six puffs of fostair a day# up from my normal 3-4 a day. And still having chest tightness. I wonder if a course of Spiriva might help me return to my original dose of fostair or if I'm now stuck with my Spiriva plus 6 fostair puffs a day. I guess time will tell. You have my sympathy, struggling with breathing really sucks!! But it's great that you're improving on Spiriva. I found that even two steroid courses didn't really solve my chest tightness problems. But were good in eliminating the cough and wheeze from that cold.