Do you take Daily Oral Steroid?

[Matman]

If you have been taking Daily Oral Steroids for over 6 Months, I would value your opion on the following.

1. On a scale of 1 (very poor opinion) to 10 (very good opinion) how well do you rate 'Daily' Oral Steroids impact on your Health and Well Being?

2. Would you agree to be switched from Daily Oral Steroids to a Biological Drug (such as Mepolizubab, Omaluzibab etc) the effectiveness of which would not be known until you had tried it for a while?

3. If faced with starting a trial of: (a) Daily Oral Steroids or (b) one of the various more recent Biological Drugs now available, which would you go for? (This is a choice I'm actually now contemplating).

Thanks in advance for your reply and apologies if I'm unable to reply direct to all respondents.

[Emily-G]

Hi, in the last few years I've ended up taking back to back courses of oral steroids. This year my GP decided to try steroid injections. I have ended up stopping the injections and am now avoiding the tablets as bone scan showed I have lost too much bone density. I am waiting to see immunologist to see if there are other options for me. Meantime I am using my nebuliser more.

For me I would try other meds as I have to reduce my need for steroids for my long term bone health.

I would rate oral steroids 9 for helping my asthma and 2 for my overall health.

I hate changing my meds but for me I feel like my choices are narrowing and I have to be open to new ideas.

Good luck and I hope you find a way forward that works for you

Emily xxx

[Matman in reply to Emily-G]

Much appreciated Emily. I've have several Oral Steroid Burst Courses in 2016 and very early 2017. I read an interesting article that made it apparent that when you added up the total mg loading from the Bursts + Tapers and average it over the number of weeks - or months - you took them, folk often find they'd be on a lower dose if taking 5mg or 10mg (sometimes more) every day. Hope you crack the Meds problem.

[Sarah0291]

Hi my son is on daily oral steroids and he now has adrenal insufficiency and he has tried both the treatments you mention and none of them worked, he is only 10 and has tried both treatments

[Sarah0291 in reply to Sarah0291]

He has also had a bone density scan and his bone density is sitting below average but can't reduce his steroids due to the severity of his asthma,he also gets nebulisers busesonide

[Matman in reply to Sarah0291]

Thanks Sarah. Hope things improve for you and your lad.

[emmasue]

Hi, I have been on a daily oral steroid since September last year. I do think that it has helped, but I am not sure the doctor has tried everything else first. I would be open to trying something else because I am only 40 and have had steroids off and on all my life for asthma. I worry about the side effects as I get older. If there is something that would work, but without the threat of bone loss or muscle wasting, I would rather take that. At the moment I am bad again (hayfever, I think???) so I am on an increased dose to try to get past it.

[Matman in reply to emmasue]

Appreciate the response Emmasue. It's a real tricky decision. I seem to recal someone saying that - over a long period of time - they managed to obtain sufficient benefits from Oral Steroids on around just 5mg to 10mg Daily. I think someone else even got reasonable relief by using a low dose on alternate days. Maybe a GP Approved Plan targeting that kind of solution would work for some of us too, but he Bilogicals might be worth a go if they match the Asthma Phenotype.

[EmmaF91 Community Ambassador]

Hey Matman

I haven't had steroids continuously for 6 months but I have been on them more often than not since last October at a higher dose (and most of the academic year 15/16) and basically continually for 4 months with the odd day off from a short term tail off regime (now on a long term tail off regime to either 0mg or maintain at 5-10mg). I'm on a waiting list to potential start the omaluzibab (Xolair) injections and my consultant is hoping that I'll be able to completely.

For me the side effects vs the benefit of the steroids are not great - weight gain, fatigue, heightened emotions, blurry vision occasionally, body aches and pains etc vs little to no benefit at lower doses (below 30mg) and my GP was getting worried about Cushings, ulcers, high potassium levels, diabetes and osteopenia due to the frequency and length I've been at a high dose plus steroid inhaler and steroid nasal drops (I'm 25). (Most of theses issues were at a higher dose than maintenance levels tho). Recently been started on theophylline (uniphyllin) which have been brilliant for my asthma symptoms (much more than pred) however the side effects can be much greater (seizures) so my consultant and I are hoping to remove this med if the injections help.

Having read around the subject I decided to try the Xolair injections, as giving up a morning once/twice a month for me would be easier than popping pills everyday and dealing with the side effects, tho I also need to take into account of expense of travelling to London that often as a student. Whilst on the trial they won't remove any of your medications so if it doesn't work it just means going onto the maintenance pred a few months later so...

I've been informed that if it works it'll only affect the allergic aspect of my asthma therefore weather/exercise etc will still be a problem, however in general it should lower the 'level' of my asthma therefore attacks will be less severe and I'll have a better QoL.

For me I think the trials the right thing to do but only you know your situation and can decide! Hope this helps anyway

Emma

[Matman in reply to EmmaF91]

Cheers Emma

Thanks for your reply. It maybe that the comment I left immediately above for Emmasue will provide food for thought. I have taken several emergency courses of 40mg Daily Pred, and they do seem to provide a great holiday from many Asthma Symptoms (and even temporarily return my sense of smell). I know some of the Biologicals have been around for a few years now, but the fact that Pred has been in use for very many years and brings definite relief (notwithstanding the side effects) seems less risky. Still, it must be said that once Steroid side effects become severe, other options must be seriously considered. Hope your Meds Regime works out well.

[Sarah0291 in reply to EmmaF91]

He has had the omiluzimab injections and didn't work and he has had mepiluzimab and it didn't work either

[HannahForever]

Hi Matman, I can partially agree with the side effects steroids like weight gain, mood swings and slight vision issues. If I tell you the overall impacts they help me in improving my condition.