What do you do if already on prednisolone and still struggling?

[Ladypig8]

I’m awaiting a lung function test, had CT scan, on a lot of different drugs and inhalers, next is 2nd specialist appointment when I’ll hopefully be able to start biologics but that’s 2-3 months away. I’m calling daily for cancellation to see if can get the lung function test done quicker. I only just recovered from a flare up/week of prednisolone and now 2 weeks later I’m back on another week of it. What will happen if I call GP and say I’m still struggling? They gave me 6 prednisolone tablets a day for a week but shouldn’t it be 8? It normally is for me. Anyway I took the extra 2 so I’m on 8 a day now as fostair not doing trick. Tomorrow is Friday, should I just go to A and E over weekend if I’m struggling? Thanks for any advice.

[Bevvy]

I would definitely phone gp today and insist on an emergency appointment. Far better than going to a&e at the weekend. IF you can’t get an appointment call 111 for advice. They should be able to give you an emergency appointment to speak to a doctor. I have found 111 can be very helpful.

[Ladypig8 in reply to Bevvy]

Thanks very much, I managed to see GP and get more prednisolone.

[DaveW27]

Definitely call your GP for emergency appointment. You could also go to a walk in centre which is usually quicker than A&E. Hope they can sort you out.

[Ladypig8 in reply to DaveW27]

Thanks very much, convinced GP to give me 8 days and complete a 7 day course, hope it does trick!

[Njhs]

don’t waste your time with the GP, try to have an access to pulmonologist, so different approach, so much more understanding. I keep struggling since the diagnosis and nothing is working for me, the immunologist suggested that i have MCAS, my pulmonologist suggested Bronchoscopy to take biopsies and see the source of inflammation and confirm MCAS or if it something else that dose not show in blood test. The GP will never think like that, only specialist .

[peege in reply to Njhs]

That's not possible in UK unless we have a good private health insurance. Our NHS (National Health Service, paid for in our taxes) is on it's knees in some areas and many of us don'thave access to a respiratory consultant/pulmonologist anyway so the choice is to call gp surgery at 8am for a same day appointment or ring 111 or go to A&E (accident and emergency) - usually huge queues and long wait.

Ladypig8, do uou not have a Ventolin rescue inhaler? I wonder if you can buy one or at least seek advice from the pharmacist........I hope you managed to get an appointment for today if not do call 111 if you haven't already. You could also call the helpline ASAP and before 5pm today for advice from a professional - 0300 222 5800. Good luck, it only happens at weekends and Bank Holiday!

PS If you're already on the consultant's list ring his/her secretary for advice, you may be able to get a prednisolone prescription to keep you going although what you need is a stethoscope listen to ensure you haven't got an infection brewing. P

[Ladypig8 in reply to peege]

Thanks very much for your advice - I spoke to consultant’s secretary, hoping I might get a telephone appointment next week fingers crossed but sounds like it’ll be April till I can be seen and potentially start biologics.

[peege in reply to Ladypig8]

Well done you! I'd politely ring about once per week to check for a cancellation especially if you can get there quickly, you never know you could get lucky !

[Stewiecat]

Sorry to hear you are struggling, it's distressing when your on meds that aren't helping and in the hands of gp's with little/no respiratory knowledge, I've been there so sympathise completely, are you under a consultant? I see your waiting for a 2nd specialist appointment, so presume you've seen someone hospital based? A respiratory consultant?? I'm able to contact my hospital clinic team online, through mychart, do you have this option?? I had to go private when in a similar position a couple of years ago, bouncing between the gp and a&e for months, whilst really unwell took a massive toll on me, desperation for help from a respiratory expert became the only option, is this is a possibility?? it is worth every penny x N

[Ladypig8 in reply to Stewiecat]

Thanks very much for your advice - I did see if you can get a lung function test privately yesterday but no joy, I’ll have another look, wonder if NHS specialist would accept the results.

[Stewiecat]

Just to add, as suggested above, if you have a walkin centre they are a better option over the weekend, they can nebulise prednisolone and refer you onto a&e if you're struggling, it makes the a&e wait more bearable, just ideas from what I've experienced with weekend struggles

[Stewiecat]

Nebulise and give oral prednisolone, sorry! 🤦‍♀️ x

[ReedB]

Sounds like you should have had a longer course of prednisolone and at 40mgs daily. As others have said try and get to see a GP today. 111 are extremely helpful in organising this if needed. Best wishes.

[Ladypig8 in reply to ReedB]

Thanks loads - I think I should have been on 8 from start, GP yesterday also wanted me to stay on 6, I asked for 8 and they agreed, then my dose is tapering down afterwards so I hope this does the trick! However maybe I’ll need to stay on 8 for another week. I understand they don’t want you to have all the side effects but way worse is it not being able to properly get on top of the breathing problems.

[Poobah]

Hi Ladypig8. So sorry to hear that you're struggling.

I would phone the GP surgery and request a same day appointment as your current emergency treatment isn't controlling things. If you can't secure that appointment, phone 111 service so they can assess your need, they can override things if they deem it necessary for you to see a GP today.

But if, at any time, things are getting worse and your rescue inhaler isn't helping, go to A&E.

All the best, keep us posted. xx

[Ladypig8 in reply to Poobah]

Thanks loads for your advice. I’m on fostair 100/6 mart regime so 8 puffs a day and the salbutamol doesn’t seem to work for me and seems I’m not prescribed it with the fostair, I’ve been taking more than my 8 puffs a day though while this has been going on eek. I will go to A and E this weekend if I need to. Thanks again.

[GobbyPunk]

hi if you have a chest infection you might need antibiotics as well

[Homely2 Administrator]

Have a chat with the nurses on the asthma UK helpline on 0300 2225800 today, then ring GP surgery. Asthma UK will help you work out what you are asking for.

I am also able to ring an asthma nurse at the hospital and they get back to me pretty quickly.

If nothing else works ring 111. They are pretty good where I live.

[Ladypig8 in reply to Homely2]

This is a good idea, I will ask if there’s an asthma nurse who works with the specialist at the hospital who could give me an appointment or speak over phone. Thanks again.

[pmrdec112014]

Hi.If you are on Fostair Mart and taking the full 8 puffs per day and it's not managing your symptoms then you need further help.

You don't get salbutamol if you are on Fostair Mart regime.

You story sounds si.ilar to mine upto almost a year ago.

Popping steroids like smarties over the past two and a half years at least since getting covid twice and over the past 30 most years at least 2 courses of steroids.

I was utterly desperate and following my local hosp consultant referring me to a specialist asthma centre I had a bout 6 months of tests, reviews and waiting until I was finally approved for Tezspire.

It has saved my life both mentally and physically. Since my first jab on 26th April 2024 I have not had to take any steroids for my asthma!!!!!!!!! Not saying I haven't had coughs, or phlegm at times but it has not progressed into anything.

In fact I just had my next delivery earlier this morn and I literally said here is my lifesaving treatment.

It is that good!

Hang in there. The wait for treatment is depressing and I was often in tears on the phone to my consultant at having to take more steroids but all became well.

[Ladypig8 in reply to pmrdec112014]

Thanks so much, this is inspirational : ) that’s wonderful you are sorted! I do feel like I’m popping them like smarties but I hope the end might be in sight. I left a message for specialist on Friday, explained prednisolone not enough plus Mart Fostair so I’m hoping something will happen, GP wants me to stagger down to 6 prednisolone from today so will see if that works…if not and my 8 fostair puffs plus everything else isn’t working I’ll go back to GP/specialist secretary and I imagine will need to stick on 8 prednisolone tablets a day for a bit longer. Thanks again for your message : )