Steroid short course

[tigga61]

Had asthma attack and chest infection in Jan and since then been struggling to get back in control, so back to Drs yesterday, was given 1week supply of steroids, but Drs are so blasé about it because I don't wheeze I feel like a fraud, it's now impossible to get any continuation with same dr or nurse practitioner, I've decided if these don't work I want a referral to consultant. I've always been one who struggles and just gets on with it but not anymore. I'm sick of struggling how do I get it through I have cough cariant not wheeze, sigh rant over. Hope your all keeping well. Xx

[Erin001]

Hi I had an asthma attack on 24th of January and was off for a week cos I was weak and I was still having issues and I have had a referral to a specialist nurse at my local hospital but I'm still not right so I'm being referred to a specialist consultant and I have had many tests to see what's going on and to see what meds I need to get my asthma back to normal

Good luck keep me updated on your progress

I don't wheeze anymore I did when I had an asthma attack but not now I get breathless tight and coughing

Wishing you the best

Erin

[tigga61 in reply to Erin001]

thanks erin, its a nightmare that many changes going on in the health service at the moment in uk, but will get there, hope you get yours under control soon xx

[Erin001 in reply to tigga61]

Thx yes it is a bit mad

I'm going to train to be a nurse soon I'm going to do health and social care course

I'm getting help my meds have been changed a few times already and nothing has changed it

I wake up every morning breathless

What r your sats like when your gp/nurse measures it

[risabel59]

You sound very frustrated, not surprisingly. It sounds as though you are caught up with different people who don't know you and all say different things.

A couple of things that can help in this situation. Keep a keep peak flow diary, but also make a note of night waking coughing and use of Ventolin and early morning coughing. Ideally print a chart before you next see a medic to explain the situation.

I cough, but I do wheeze, my consultant always hears it, but GPs don't as apparently it's very high pitched, and not obvious unless I'm super unwell.

Just so you know there is an automatic nhs criteria for being referred to a specialist clinic. Which is if you are categorized at stage iv. So that means if you take an inhaled corticosteroid, of more than 500mcg per day Montelucast, a long acting bronchial dilator (LABA), you should be automatically referred. There are written guidelines which are published by the British Thoracic Society and NICE. You can look them up for yourself online

You should also have a written Asthma plan, there are templates on the Asthma UK website lots of gps are rubbish at treating asthma. I think they get about half a days training in it

There are some who do specialist courses, so it's worth asking if your surgery has one of those if you can't get a referral

Best of luck

R

[tigga61 in reply to risabel59]

thanks for that half the problem is now our drs apparently comes from nice wont allow 2 ventolin inhalers so have an episode use more and run out before renewal date, end up going days with no inhalers so problem exacerbates. its very frustrating, im on ventolin and flutiform 250 at moment, getting little relief and 3 chest infections in as many months. i cant use Montelucast, i will start keeping a diary of my pf. the coughing is currently constant and has been since january. will finish the steroids and see how it goes from there.

[EmmaF91 Community Ambassador]

Hi sorry to hear you're still not feeling great

It sounds really frustrating! I completely understand how you feel - went through something similar last year.

Ending up having multiple attacks about 8-10 trips to hospital for varying levels of attacks (moderate - life threatening but relieved well in a&e, staff knew me and often asked if I had a consultant), had daily symptoms (and developed my 'Muttley' laugh), had to take a break from uni (ended up having to repeat the year), and was getting one neb per week at my GP by the end (with would only help for that day then everything got worse again and couldn't always get in the day I asked for it first cause they were fully booked).

The GP basically refused to refer me to a specialist (despite being that bad, it took them 6 months to try me on montelukast, and when they changed my inhaler they DOWNGRADED ME 😤, and yes I ended up seeing 3/4 different docs over this time). Before I returned to uni they told me I was doing a lot better and was a lot more controlled - I was like 🙄😤😫😡🤐.

Went back to uni, big surprise when 3 days later my asthma was worse... (at the time I was similar to you - I would just try and cope and wouldn't go to hosp until the morning if symptoms got worse) got very frustrated so I played the system and went in to hosp at night, knowing that I would then be admitted ('tis the rules about asthmatics presenting to hosp in the middle of the night and I asked to be when a&e asked me!) which would then automatically refer me to a consultant. The first resp nurse I spoke to in hosp was horrified about the situation!

I'm now been 'officially' diagnosed (having been given my fist pump aged 13 - now 25 🙄) as an asthmatic, usually described as severe and difficult. I'm waiting on a further referral to a specialist hospital for xolair trial which had to be delayed due to not having a proper diagnosis and having been downgraded on my preventer pump. Now I'm on almost all the drugs which has given me a bit more control whilst I wait, though I'm still getting symptoms.

Have since changed GP. My new place has walk-in every morning where you can always ask for your preferred doc and they will try to get you to them (unless they are not in or really busy aka have a list of 10 when others only have 5 where they give me the option to waiting I want [cause they all know me well 😜😳😅]). They also have an asthma nurse the hosp know and approve of! A much better practice with a lot more understanding about asthma and asthma treatment.

Keep fighting for what you need! If you're running through your blue pumps before the next scripted then it's a sign that you're not being controlled and should be a massive red flag to them, however they shouldn't be refusing to give it to you cause that's dangerous! If you're feeling bad go to a&e (even if you feel like a fraud!) They will always give you a blue to leave with if you want one esp if you say yours is low/explain your situation.

Keep a track of how often you get put on steroids too, if they keep putting you on them ask for omeprazole and calcium tablets to help protect from the side effects of them!

I'm now at the point where I can be having a moderate attack and not feel too bad/ not really seek help for it cause it's like it's my normal, and can feel like a fraud when GP goes into a panic over it! Don't get like me!!!!! Check your PF if you're feeling rough, and if it gets anywhere near 50% of your best go to hosp - they are a lot more helpful than a GP who don't seem to understand from the sounds of it!!!!

Hope you start to feel better soon and get the help you need x

[tigga61]

thanks emma, its awful at moment went into town yesterday and walking back to the car park was a nightmare, my partner went into a real panic as couldnt breath at all. managed to get to the car and once there stopped stressing it settled, not perfect i hate going to the a&e as would hate to be kept in hence keep struggling on. drs are so frustrating but im not giving up this time they get me treated and under control or it will be hospital. Like you im at uni, (mature student) which is hard enough so dont want this interfearing with my studies. hope you soon get your referral for the trial . off to google it now, take care x

[EmmaF91 Community Ambassador in reply to tigga61]

😣. Being kept in is a pain however I now try to view is a few lost days which (should) make me feel better and become more productive in the long run (or at least it let's my medical team know when I'm not doing great).

Sounds weird (and slightly embarrassing) but have you thought about applying for a blue badge? I'm almost exactly like you when I'm out, so a friend with one (he has myasthenia gravis) suggested it to me as he thought I was a lot worse off than him. I spoke with my GP (and asthma nurse) about applying (for their support/advice) and have just been approved for one (waiting for mister postman!).

Hope the docs get you sorted soon x

[tigga61 in reply to EmmaF91]

thanks emma, i have thought about blue badge but never thought i was "bad" enough to warrant one, tho i am going to mention it to asthma nurse at next appt xx glad you got yours xx

[EmmaF91 Community Ambassador in reply to tigga61]

I only joked about it until my friend seriously suggested it! Explain/fill out the form as your worst day not your normal or best, because we have a condition that alters daily so may only need it a few times a week (on the form there is a part right at the end for breathing issues as well as a section to write extra info that I used to say advised by doc/hosp to apply to try and prevent attacks etc). Thanks x

[ElizabethC]

".. it's now impossible to get any continuation with same dr or nurse practitioner.."

Oooh I hear you on that one. Just like you, I had an exacerbation resulting in A&E emergency visit in January. Had 2 weeks off sick with viral infection and 4 months on *still* not right. The viral infection is gone, the coughing is just the normal asthma cough but I am breathless most of the time, can barely walk a few hundred yards or climb a short flight of stairs without desperately trying to get my breath back. My voice fades away to nothing after no more than around 10 minutes of talking and my singing voice has packed up and gone to who knows where. My lungs are twitching at anything and everything and my throat is constantly threatening to choke.

Can I get an appointment with the lovely nurse practitioner who, it now seems, I was incredibly lucky to see when I was in dire straits in January (and saw for two further apts over the following 2 weeks)??? No. I can't.

I keep getting excuses made such as asking on a FRIDAY if she was available and being told no she was off work (fair enough). Asking if she was in the following week. Answer: "Oh, we haven't got the rota for next week". *blinks*

Or, when pointing out that the NP had said I could ask for her to review my asthma was told "No, she doesn't do that".

When she is on the emergency call back line, I ask if she could call me (this was when I got very tight again a couple of weeks ago) and was told, no, can;'t guarantee that, it may be the doctor who will call (which is exactly what happened.).

Its so frustrating. I think I need to be seen by a consultant *and* my NP mentioned it at the time I saw her in January as she felt that my history showed that something was not right. But how can I get that to happen if I can't get to see her. The doctor I saw last time only dealt with the tighteness (another course of steroids - 4th since January) but was not at all interested in dealing with *why* I was still having difficulties 4 months on. Not interested in even discussing it. And she was another one who said the NP didn't do Asthma reviews (contrary to what the NP said).

I'm at my wits end in what do to. You really have my sympathies.

[tigga61]

hi Elizabeth sorry for the late reply im terrible at keeping up on here, hope your feeling better like you im very frustrated at moment, steroids are finished chest is still like an elephant sat on it after even a small amount of exercise but i refuse to go to a &e as terrified of being kept in. I managed to get a asthma nurse appt for wait 15th May... so guess it will be back to the drs before then. My mother died of asthma at a young-ish age and that is something ive not thought a lot about until now and the thought is very scary.. as my asthma until 12 months ago has been well controlled. very very frustrating.

[EmmaF91 Community Ambassador in reply to tigga61]

Sorry to hear you're still feeling rough! Speak to someone (and explain the situation to a course leader at uni so that they are aware of the situation!)

Sounds like you need to see someone asap, don't avoid the hospital just cause you're fed up and don't want to stay in - better a short stay in today, than a longer one tomorrow, or an even longer one underground, if you collapse somewhere with no help available or if you get to them too late 🙁!

I'm sorry to hear about your mother, but at least you can understand how important it is to get help when you're not feeling great!!!

Thinking of you x

[Jandm]

Not all sufferers present with identical issues and problems, and not all chest tightening comes with a wheeze! Asthma is a complex condition which we all sometimes underplay. You know how you feel. It's frustrating to think that your doctor isn't listening. There are a lot of pressures on gp's to get through their workload, but stick with it. If these steroids don't sort you out then maybe they could refer you on. Fingers crossed they help.

[tigga61]

Thanks for the reply its gone on too long for me now xd

[Glen68]

I always find that the steroid course really helps above all else (medicine wise). As long as its not too often that is. I'm assuming Pred? Good luck Tigga and hope you get well soon.

[tigga61 in reply to Glen68]

thanks glen yes its pred, course finished im still struggling so gonna try get appt today as now out of ventolin and drs wont allow a spare one, ongoing nighmare x

[tigga61]

hi quick update had a really shit week, managed to get an appt to see an "associate" new one on me too, someone i tried to avoid as a pen pusher with a lot of questions when i want answers. anyhoo saw her she done the background digging and got to see a dr at the end of it. Sats are fine so didnt need hospital got more steroids and some anti histamines. been taking since tuesday now cant sleep a wink, still breathless, still no wheeze and cant walk more than 200 yards as pain in back is awful, on top of the breathlessness, and feel totally wiped out. I was told tuesday to ring end of week for a follow up appt, associate isnt in next week when she said she was, the dr i saw, ihavent a snowballs chance in hell of getting appt for, so managed to get one to see a locum nurse. on next wednesday. If i make it through the weekend i will be calling in monday and or ringing 111 to make an appt. feels like death by stealth, especially since january ive pulled myself through mainly as i dont want to present at a & e and leave it for the more serious patients, hope your all having a better week xx

[tigga61]

hi all hope your well, im still struggling and wasnt getting anywhere fast, saw a locum dr on friday which i hate but least she was thorough as getting appt with anyone else is a nightmare, she has put me on Montelukast so will see how we go on these. previously they made me extremely nauseous but will try anything at the moment. and got an asthma nurse appt in 2 weeks, hopefully long enough to know how the monte go. x