Home, but it's hard..

[servewithmintsauce]

After 11 days in the hospital, with 2 life-threatening attacks and an allergic reaction in that time, I was discharged yesterday. I'm glad to be home, of course I am..but things really aren't as good as they should be.

In the hospital, once I was out of Resus, I was on 4-hourly Ventolin nebs, and 6-hourly Atrovent nebs, using inhalers in-between to tide things over. We tried to cut them down and added in saline nebs after the second attack. Eventually we got down to 6-hourly Ventolin nebs, 2 saline nebs, and 2 Atrovent nebs, then to 3 Ventolin nebs, 3 saline nebs, and no Atrovent nebs (just inhaler). Two days before discharge I was down to 2 Ventolin nebs and a couple of saline ones, and the day before discharge, I just needed 1 Ventolin neb on waking up and 2 half saline nebs. I didn't have any yesterday so I was able to go home.

I was on Fostair initially and I definitely noted that the change to Seretide 250/25 was a turning point for me. I was also on 40mg Pred daily until this morning, and Amoxicillin 1500mg a day for the first 7 days of my admission. But my peak flows are still low and my chest feels congested and tight and painful, despite 15 puffs of Ventolin about 45 minutes ago, 2 puffs Atrovent, and 2 puffs of Seretide.

Like I say, I've got GP today at 3:30pm, so I'll probably get more Pred or some flix to add on to Seretide or something but..

Any thoughts? :/

[Hidden]

I wonder if this is a case of change of atmosphere. If your airways are very sensitive and inflamed at the moment it probably won't take much to trigger a response. Then of course, it's cold and it's damp, and no matter how careful you were getting from hospital to home you will have been out in that for a while, and if things are still on the fragile side ...

Take it very, very easy. Your system has got to adjust to the change and it sounds as though it wants to take it's time over that.

Take care.

[servewithmintsauce in reply to Hidden]

I had my appointment at 3:30 with a relatively new doctor at my GP practice who seems quite knowledgeable about asthma. He suggested Tiotropium at some point in the future (marketed as Spiriva; I was unsure because I only thought that we had the HandiHaler in the UK, but they do the Respimat here as well so it's a viable option), as well as discussing losing a little weight (honestly, I have been trying, and I have been losing some albeit slowly, but currently I cannot do ice hockey and I'm on pred which gives me crazy pred hunger, so…).

He expressed surprise that the hospital let me out with my peak flow at <75% of my personal best (240 L/min) and said that if I am using lots of Ventolin and Atrovent to little effect then I really need to go back in. He has given me another week of prednisolone at 40mg/day, same as I was on in the hospital, and I am seeing him next Thursday to see how I am doing and taper off the pred. In doing this, we will be able to see if there is a point at which I cannot tolerate a lower dose (i.e. if I need to stay on pred long-term *sigh*) or if we can go back to just inhalers and Montelukast. He is very much on board with the idea of getting me the pneumo jab, which can be done there, but not until I'm better.

On a more serious track, he did note that I am currently on maximum therapy with Seretide 250/25, montelukast 10mg, Atrovent 20mcg, and Ventolin 100mcg, so the usual next step would be to go on regular oral steroids, which I definitely want to avoid. I didn't think at the time to mention theophyllines or cromolyn sodium instead of steroids, but I think maybe that's something to wait and only discuss if HCPs start talking about long-term pred. I know that 'needs must' and all that and it's far better to be on high doses or lots of meds or oral steroids and be controlled than to not have to take pred but have a restricted lifestyle, but I also believe it's worth trying every other line before pred.

[Hidden in reply to servewithmintsauce]

Don't know much about theophylline, but if cromolyn sodium is another name for sodium cromoglicate, then that used to be the main component of the medication I was first put on - Intal Co - when I was a child back in the late 1960s. I came off it eighteen years later when I moved to a different part of the country and it was no longer as effective as it had been. That was when I was put on Becotide (initially a disaster because the strength I was put on was nothing like strong enough - I was worse on that than I had been on the Intal). I had no idea they still used the stuff for asthma. Intal was still around (but not the Co version I had) when my son was diagnosed with asthma, aged three. He was put on that because my GP was reluctant to put such a small child (and he was tiny) on inhaled steroids. He had to come off it because it just wasn't enough to control his symptoms. He ended up on a mild dose of inhaled steroids less than half a year later.

[servewithmintsauce in reply to Hidden]

Good points. But maybe theophylline before prednisolone? I don't know much about the safety profile of theophylline, although I know they used to give it to people having acute attacks until studies showed it had no benefit over a newer med and was more likely to produce side-effects than the newer med.

[KaylaP]

Hi,

I am on theophylline which I started last summer to try and avoid long term pred (at that point I had been on various doses for 14 weeks). There are some well documented side effects but I am closely monitored with regular blood tests. I had a headache for the first week or so but nothing since. I have only had 3 admissions this year while on it and probably 5/6 weeks of pred which compared to last year's 10 admission and constant steroids is good. I also see you mentioned flixotide in addition to seretide which I used when coming off pred and now have as an add on when starting to struggle. I am sure this played a part in the improvement.

I'm glad to see you GP has a good understanding of asthma as I have always struggled with this. I hope you are feeling better soon.

[Hidden in reply to KaylaP]

Flixotide is what I am on as well. I was switched to it from Becotide (never fully effective) when we moved to our current location and have been very satisfied with the impact it's had on my asthma. Yes, I still do get tight chested at time (things are slipping a bit at the moment, thanks to the very damp and cold weather), and viral infections still have to be treated with respect (and can still cause severe flare ups if things go wrong), but on the whole my condition is much better controlled than it was. Hardly surprising then that when one consultant (not respiratory connected) wanted it changed (he wanted me off inhaled steroids) and a respiratory consultant (having given a definite 'no' to me coming off them) suggested a different medication - fostair - I flatly refused. Fortunately the GPs at my local practice, who have been dealing with my asthma for twenty years plus, were sympathetic to my point of view

[lejaya]

I take theophylline, and have found it very good I have been on it for 2 years now with no side effects only slight nausea for first few days

[Hidden]

I'm late to this post so things may have changed, but here's my tuppence-worth, Matt:

1) could you continue the seretide 250/25, but keep a separate flixo 250 so you can add extra dose/s as & when needed? You could have up to 4 extra puffs a day, without increasing your inhaler burden on a daily basis. Might avoid oral pred?

2) I added Spiriva into my regime back in Sept. Within 10 days it had made a substantial difference, nearly 20% increase in peak flow. RBH told me it's proved very successful for many asthmatics but doesn't work for everyone. I'm fine with the Handihaler but I know some prefer the Respimat spray.

3) I've tried theophylline a few times, most recently the slow-release one (Phyllocontin). It makes me very tachycardic though & inhibits sleep. It does help the tightness but I just can't tolerate it.

4) You're right to be wary of long-term oral pred. I'm off it now, but my adrenals no longer function, an added problem. Also it ruins your skin, healing powers & goodness knows what, I'm sure you know all that. Better than not breathing, but to be avoided if poss!

[servewithmintsauce in reply to Hidden]

By way of an update, nothing has changed just yet (aside from me reaching 75% of my personal best yesterday afternoon, and 80% after my evening meds) but I am seeing the doctor on Thursday at 5:00pm. This is the same doctor I saw on Friday, and to me he seems like a good one; knowledgeable about asthma and current treatments, and open to suggestions I have about meds.

In response to #3, I have essential tachycardia (fast resting heart rate with no identifiable cause), usually around 90-100bpm..maybe that's why the doc didn't suggest Theophylline? Or maybe he just went straight to long-term OCS in his head..?

I'm not good with dry-powder inhalers. They aren't terrible, and when I'm well I have the inspiratory force necessary to use them, but they hurt my chest and when I'm ill I don't necessarily have that inspiratory force. From what I gather, the Respimat device produces a 'slow' mist (gentle mist? Can't really think of the right word) which allows it to be used effectively without a spacer, which is brilliant; the convenience of a DPI with the usability of a pMDI+spacer. I do my morning meds on the bus to college every day so the fewer things I have to do through the spacer the better!

Do you have any thoughts on the advantages of Spiriva over regular Atrovent? I'd still have Atrovent for before ice time, and as an additional reliever, but is there any difference, really?

Thanks

[Hidden in reply to servewithmintsauce]

I've definitely done better on Spiriva and I think the research has shown it to be superior to Atrovent. I hadn't taken Atrovent for some years (long story) but one real advantage of Spiriva is it's a once-a-day therapy, whereas I was 4 x daily on Atrovent.

[bonvaudeville12]

Hi there,

I'm sorry to hear you're going through this, it sounds utterly frustrating. I wish i could give some advice! But I am working to create a few short films (internally) for healthcare professionals, to understand asthma more and help identify with their patients. I'm looking for people who have severe asthma, on medication, to talk about their story and their daily struggles with it for a interview. (Paid!) Would you be interested at all? It's for a good cause and would be at your own pace.

Thanks very much,

Bonnie

[TuckBox2]

Hi servewithmintsauce,

I was put on Tiotropium (Spiriva) 10+ years ago I was also on Phyllocontin, then they added Formoterol (Axis 6) and Ciclesonide (Alvesco) inhalers, 2-4 salbutamol nebs every day, I was still having exacerbations and ending up in hospital for 4-5 days 5-6 times a year.

In march 2013 they put me on Umalizumab (Xolair) by injection (x4) every 4 weeks as there seemed no other treatment to help me. I was taken off Phyllocontin and the nebs, I had no admissions to the hospital and only 1 or 2 flare ups where I had 40mg Prednisolone 5 days and antibiotics 7 days.

I was doing really well until late last month when my pf dropped, had a really bad cough and bringing up a lot of phlegm. I started my emergency pack and after 2 days my pf was still dropping, so I took myself to A&E they kept me in for the day and gave me Ipratropium & Salbutamol nebs 4 hourly and sent me home with some, as I have my own nebuliser at home and I self monitor my peak flow, oxygen sats, & blood pressure, they said I'd be more comfortable at home. .

My pf stayed flat all over xmas and I took myself back to A&E on boxing day as the phlegm was getting darker and they kept me in for 6 days, they gave me 4 hourly nebs + oxygen kept me on pred & abs another 7 days until my pf started to rise when they sent me home.

I was on a reducing dose of pred and my pf has been back to normal for the last 2 weeks.

Like you I am also on Montelukast I have been on that for 15 years now.

I too am being told to lose weight, but all the meds I am on most advise that a side effect is weight gain, so I cant win. I've argued with the Dr's about this, one says I'm not on enough steroids etc. so my argument to him was to check the side effects of the meds. check my records, as I am weighed when I go to the clinic, and he would see the increases every time they change my meds.