Not able to use oral steroids. Can inhaled steroids clear my flare or am I dreaming?

[digdig123]

Over the last few years I’ve found myself with adrenal insufficiency due to over use of steroids for asthma. I’ve had a flare up this wk and following instructions of specialist of 2 puff seritide 250mg 2 puffs x3 daily and ventolin 6 puffs x 2 hrly. I can barely walk and can’t talk without gasping for air. If I lay still and do nothing I’m ok. I’m improving ever so slowly but am I kidding myself here. Are there others out there that can’t take oral steroids due to the severe (and there are too many for me to count) reactions to these meds. What do others do? Any suggestions on other inhaled steroids? I feel like I’ve trashed my body with meds to stay breathing and react to everything. My body is saying no more...

[Lysistrata Administrator Community Ambassador]

Hi, it seems as though your asthma is flaring a lot and the inhaled steroid regime isn't working. You do need to do something asap and don't hesitate to go to hospital if your Ventolin really isn't helping you.

Regarding the oral steroids, just wondering who told you that you can't ever have them for asthma with adrenal insufficiency? Do you have other reactions? I also have AI due to extended oral steroid use (pred), though I don't tend to have oral steroids for asthma very much because they don't actually help my asthma - if they did I might still be on them as I'm not well controlled. I have a small dose of oral hydrocortisone for the adrenal insufficiency, which I will double if I'm ill including for asthma, not because they help the asthma but because it's physically stressful and uses cortisol which I'm still not producing properly due to AI.

My endocrinology nurse specialist has been very clear that if I need steroids at a higher dose for asthma I should take them for however long the doctor thinks I need them for asthma - I still get given them in hospital at times as they do tend to err on the safe side if they don't know my asthma well. If I don't have pred for asthma I still need to double the hydrocortisone dose during and just after an attack, though I have managed to very gradually reduce my standard hydro dose over time, with her guidance.

Are you under an endocrinology clinic? If not I would advise asking for a referral, but even if you are it can be hit and miss with adrenal stuff at times as they are not all familiar with it.

Meanwhile - you do need to do something about the asthma, and don't worry if you need oral steroids, unless there is another reason you can't take them. I wouldn't stop a short course abruptly however - it's standard advice that this is ok but that's not for people who have AI issues, it's aimed at 'normal' asthmatics who need the occasional course. My usual plan is to finish the pred course for asthma and go back to my standard hydro course, but I find that asthma specialists or medics in hospital seem to get a bit confused by endocrinology and adrenal stuff!

Perhaps call OOH GP re the asthma if you're still struggling - or as I said if things really get worse and 10 puffs of ventolin doesn't help, just go to hospital. Otherwise perhaps contact your GP or asthma nurse ASAP on Monday and explain that increasing inhaled steroids as advised hasn't really helped.

[digdig123 in reply to Lysistrata]

Thankyou!

I have serious serious side effects with any oral steroid. Many and varied.

I was on 125 seritide but went up to 250mg for this flare. Spec happy for me to do this.

Do others do the same & have good outcomes?

I’ve dumped my endo. Looking for someone new eventually. My specialist is the only one I really rate. GP is pretty behind with the times. I’m finding a lot of drs just don’t get it. My cortisol levels were basically flatlined but endo didn’t deem necessary to give medication. I’ve been trying to wade myself through by basically waiting things out to see if I improve naturally with time. Staying away from illness and basically living a quote life.

I’ve been told a million times rest and time will help. It’s been 2 years January. My levels have improved in a year but have a long long way to go.

Is it normal for people during a flare up to rely on ventolin often for a week or so while taking seretide. Until the body heals? While resting as much as possible etc?

How long does it take to get over a flare up?

Many many thanks for your guidance

[Lysistrata Administrator Community Ambassador in reply to digdig123]

I think a new endo would be a good idea soon to see what's going on. Did you have the short synacthen test (you said your levels were improving but wasn't sure if that was from random cortisol or the synacthen, though from what I understand a low level on morning cortisol needs attention anyway). If you don't react well to oral steroids beyond the 'normal' side effects of high dose ones you definitely need specialist input to see what they can do, given that's pretty much the treatment for AI.

Though I'm unsure if you mean the usual side effects of high dose steroids (not nice but sometimes necessary for breathing) or if you have additional reactions beyond that. I don't really notice the effects I had from high doses of pred on the low dose of hydro I have to treat the AI, especially since hydrocortisone is closer than other steroids to the cortisol we produce naturally.

Re the asthma, from what you say I don't think the increased inhaled steroid is helping you get over this. It is normal to use more ventolin during a flare yes, but that is quite a lot and it's not lasting or helping that much.

It's been a week and you're still using a lot, finding it doesn't last and finding it hard to walk and talk. I would say you need to try something else - clearly a course of pred isn't going to be the answer if you can't have it, but you do need something more asap, so I would get to hospital or urgent care asap. You might need to write down some details about your history and the steroids thing as steroids will be pretty standard. There are however other things you should be able to have if that is really a problem.

For the longer term, are you on any other medications? There are several non-steroid things you can add (eg Spiriva, montelukast etc), and it may be worth asking about those if you're not on them.

Meanwhile please stay safe and get yourself sorted with this asthma flare!

[EmmaF91 Community Ambassador]

It sounds like you need to be in hospital because you’re obviously not managing to cope at home. 10 puffs of ventolin is meant to calm a flare and should last more than 4 hours... you’re doing 12 in 4 hours and dropping half way. The fact you can’t walk or talk properly despite this tells me you need hospital. Breathing is a priority, and as crappy as steroids are (currently on 40 and my con thinks I need maintenance of 20) sometimes you have to deal with the devil to stay alive. And hospitals have a lot more drugs available to them in the short term emergency setting. AI doesn’t mean you can’t take steroids, just means you need to do a wean to come off to see how body copes and adapts (was about to go through this process and being tested for AI then my lungs kicked off 😒)

Get your lungs calmed down and through this blip. Then deal with the dratted sode effects of the drugs you need to stay alive

[digdig123 in reply to EmmaF91]

I’m now in hospital....

Because I can’t have any oral steroids they’re giving me 12 puffs of ventolin and 8 puffs of atrovent every 20 min xxx

[EmmaF91 Community Ambassador in reply to digdig123]

Hopefully theyll get you sorted out and you start feeling better soon

[hilary39]

So sorry to hear this and hoping you are doing a bit better. I have adrenal insufficiency too and take hydrocortisone every day. I really understand how frustrating the rollercoaster can feel of being so overreactive and then damaging your body by trying to treat it via meds and steroids etc! Take good care-

[digdig123]

It has been a big wk but I’m in the road to recovery. Interesting enough my specialist thinks that I don’t have typical asthma symptoms. I’m having more tests. Looking at GERD and asthma and something to do with my voice box ??

Does anyone else have difficulty speaking when they are having a flare up? Or am I strange 🤷🏻‍♀️

[Junglechicken]

It’s really difficult to say how long it takes to get over a flare. Since I was poorly over the summer I’ve fallen into a pattern which is this. Flare and a course of pred which helps, great for a few weeks after. Then I start to slowly deteriorate again. My last course was at the end of October. I noticed that I’ve used my blue a 4 times this week for a light wheeze. I’ve been very fatigued. I had a terrible day anxiety wise yesterday which can be a precursor to an attack which happens a few days later. A few people asked if I was feeling ok because I was ashen. I’ve awoken to a lower PF and a wheeze plus cough has developed over the last few hours. I had a good laugh last night which unusually set me off. I’m hoping that you manage to get everything under control but it can be a long journey if your asthma has got worse. Asthma is a horrible cruel condition that just keeps you guessing. What is worse that all the guessing causes worry which in itself can lead to problems becoming worse. It really does kick you when your down.