Has anyone else been told to only take oral steroids for there asthma? I do not wheeze or cough so I have been changed to oral steroids only.
It feels really weird after endless years
of inhalers. It does kind of make sense that if it only muscles that are tight inhaled steroids will not help but it feels mega weird.
Hmmm that really is weird. Was this a GP saying this? What reason did they give - when you say muscles being tight, are they saying it is your chest muscles? Or the smooth muscles in airways which tighten in asthma?
Oral steroids cn be necessary but I'd very much question taking them as first line or only drug without a really good and evidence based reason! Maybe call the AUK nurses and discuss with them?
Endocrinologist specialist. I am actually steriod dependant so take steroids daily anyway. I think the plan is to get me obviously on the lowest dose of steroid possible. Off to GP now for a discussion to settle my anxiety.
Was this the endocrine nurse you mentioned in another post? I don't think I would trust any endocrine specialist on asthma even if this advice wasn't from her. I hope your GP can advise and is helpful.
No endocrine doctor. GP says goes with endocrine doctor as i am doing so well...............
Is this a long term measure as not good to be on oral steroids long term due to the side effects. I've never heard of being just on oral steroids and not on inhalers. Oral steroids are just usually given during an asthma exacerbation or infection. I'd be questioning it with a respiratory specialist. Why do you see an endocrinologist if you don't mind me asking?
I totally agree. The only time I'm put on oral steroids is when my wheezing becomes really bad and my lungs get fluid. "Normally" I'm on an one week regimen along with an antibiotic (Z-Pack). If it's really bad, my GP will have me go a second week, but then you have to taper off the prednisone which adds another week. The side effects are TERRIBLE for me if I go longer than the one week: 8-10 pounds weight gain, flushing, sleep problems, etc. The last time I was on the two-week thing I had edema (swelling of my legs, face and feet) and I ended up taking diuretics and potassium pills. It also messed up a test of my heart functions and I was told I had chronic heart failure!! It turned out the test results were wrong, but I went through hell thinking I had had heart failure. Long term steroids? Think twice about it and discuss the possible side effects with your doctor and pharmacist. Good luck. I'd prefer the inhalers ANY DAY.
because I am steroid dependant. So I have to take oral steroids for life. If I stopped them I would die very quickly.
Truly worrying. If you do not wheeze or cough do you have asthma? Do your smooth muscles in your lungs stay contracted?
Yes you do need to see a proper endocrinologist if indeed you must take steroids which are pseudo hormones and wreck your own hormone production giving those awful side effects as well. Surely you could get something else, taper off the cortico steroids, They cause instant ageing. Catabolic.
The veins in my hands were up higher than a matchstick and clear with plasma at the top and red blood cells st the bottom of the veins. I was lucky I had initiated other things so although my skinks thin and my flesh eaten way, there are not blood spots under my skin.
I got a hormone test at my insistence 6 months ago and found that I was around zero in some really important hormones because of the drug. That year after year willfully ignorant or vicious medicos said things from seratide is good for you to denying what I saw happening to my body to telling me I was the problem, I read the internet and I had no right. Actually I did triple the endocrinology that doctors did in their course and shared the lectures they took at uni of Sydney.
Point of this, your own body depends on you in the first instance to do your best to look after it.
My great news is first a middle eastern doctor in Canberra was very disturbed by my medication history and gladly got me the hormone test. Then I had an appointment with a respiratory allergy specialist with asthma hives and hay fever himself who was wondeful and really interested in getting solutions. He has referred me to am endocrinologist.
He was not all upset at my careful and effective self medication and pleased to follow it up for himself as it was not information he as an allergy specialist knew.
Meanwhile I have been self medicating carefully and my hand veins are toned and mostly out of sight. I have been taking much much smaller dosages in one product than recommended by doctors for example their dose can cause heart muscle overgrowth....
I was invited to try a Biologic (Monoclonal Antibody - MAB) for severe Eosinophyllic Asthma. I decided to decline, and to instead take Regular Oral Steroids, which are a recognised option for severe Asthma.
However, I have adopted a very low dosage regime, averaging 1.25mg Daily. While this may sound rediculously low to some, it needs to be kept in mind that Pred is (sort of) a Cortsol Substitute and that, as I understand it, typically a person will produce around 7mg of Natural Cortisol a Day. So, taking 1.25mg Pred Daily still (sort of) represents around a 15% Daily Addition to the amount of Natural Cortisol a ‘normal’ person ‘should’ be producing. (Personally, I think 15% is a big enough daily increase to - initially - try).
The assumption that triggered my medication decision is that either (a) I’m not making as much Natural Cortisol as a ‘normal’ person or (b) I’m making the ‘same’ amount as a normal person - but require ‘more’ than the ‘normal’ level of Cortisol (or ‘Cortisol Substitute’) to keep my Asthma under control. Either way, I need to top-up with a synthetic (Pred). As you may know, one action of Pred is to reduce Eosinophils (a few of the MABs do that too).
What I’m actually trying is 2.5mg Pred ‘every other day’ BUT (as with any ‘Frequent’ Pred Regime) this will need close monitoring. i.e. Periodic Tests for Blood Sugar, Vision Impairment, 9am Cortisol Production and (once or twice a year, maybe) a DEXA Scan
Its too early to form a view as to effectiveness, but so far, so good, plus a reduction in daily dose of Fostair.
I’m not a medical professional - nor am I advocating this approach - just clarifying that it ‘might’ well result in a permanent reduction of Inhaler use and - conceivably - ‘zero’ inhaler use (which would then put me in the same position as you’ve mentioned in your Post).
If the regime I’ve adopted ends up eliminating the need for higher dose Pred Bursts several times a year, my total ‘annual’ Pred Loading might even reduce. (If I’m on Pred Bursts I take 7 Days at 40mg then reduce by 5mg a Day down to Zero over the subsequent 7 Days. Multiply that 4 or 5 Times a Year and compare to 1.25mg Avg Daily for my new regime). The Arithmetic also needs to factor in that I’m also hoping to adopt ‘Pred Breaks’ for two to four weeks, once every few months, Those Pred Breaks might necessitate a temporary return to greater ‘Inhaler’ Usage during ‘Pred Break Periods’, to compensate for coming-off Pred for a while every now and then.
Thank you for your reply.
Just finished a re-edit of (plus some ‘additions’ to) my reply to your original Post. Hopefully the changes I’ve just made, clarify and elaborate a little on my initial response.
Pred is about 27 times more potent that cortisol, so 1,25 mg of pred is 33,75 mg of cortisol. So everyday routine of low dose pred can totally shootdown your own cortisol very quickly.
Hi Alex
Thanks for your response (much appreciated). If you’re correct, then I may certainly need to re-consider my approach. May I ask where the information you kindly provided was sourced from? I’m not challenging your statement, merely wishing to look into the matter further, as I’m reluctant to consider abandoning my regime without first probing a little deeper.
You are better off on hydrocortisone if you want a lower amount of cortisol.
Oral Steroids
Are oral steroids a good substitute for preventer inhalers ?
Finally started the short course of oral steroids
