severe asthma , adrenal insufficiency

[Mark-f]

hi everyone

I’ve not posted here for ages , I’ve just been ticking by ..

I have severe asthma, so bad I was on prednisone steroids continuously for nearly 5yrs 20/30mg every day ..

I was on xolair, mepolizomab and now Benralizumab for the last 3/4 yrs which I self administer..

The long term pred has ruined my body , osteoporosis at 45 , teeth falling out and I now have adrenal insufficiency, my body has stopped producing cortisol (steroid) so I’m now classified as steroid dependent and can never come off ..

I carry an emergency injection of cortisol (steroid) in case I go into an adrenal crisis

It’s a very rare condition, 20k patients at my gp surgery and I’m the only one , they don’t fully understand the condition , very frustrating

[Homely2 Administrator]

Your main need appears to be getting decent day to day medic support.

My gp asthma nurse does not really understand complex asthma, but she knows this. So I am looked after by a hospital asthma nurse as well as my gp asthma nurse. I can contact either.

Can you either get more day to day help from the hospital where your gp surgery is out of its depth, or can you change gp surgery.

[Mark-f in reply to Homely2]

I’m with the complex asthma team at the royal Brompton and have been since 2014

[risabel59 in reply to Mark-f]

Hi Mark, Just interested to know, do you find it easy to get in touch with RBHT complex asthma team?

[Mark-f in reply to risabel59]

Yes. It’s fairly easy , I have a direct line number to the nurse lead biologics team …

But I tend to just manage my conditions on my own as best I can .

6 complex medical conditions and counting

[PPxwoods in reply to Mark-f]

rideable

??? the complex asthma team

Is this a consultant led group which can review all aspects of the asthma symptoms

[Cavmad]

Wow Mark that sounds very challenging. Have you found any relief with any treatment

[Lysistrata Administrator Community Ambassador]

Are you under endocrinology, Mark? I found it very helpful to be seeing the endocrine nurse specialist when I had adrenal insufficiency. I would see her every so often and she could also advise in between when needed eg I asked her for an emergency injection before I went abroad and she gave me an extra session to show me how to use it and inject myself. I also got in touch with her after I had an adrenal crisis, and she gave me her contact details if I needed her while I was admitted. (I got the impression she didn't have a huge amount of faith in the knowledge of the average medic about AI and she was right - unless they were endocrinologists doing the medical rounds they were absolutely terrible with it, and made so many mistakes with hydrocortisone).

Sometimes asthma teams try to manage AI by themselves but they really shouldn't IMO. Mine were not great with it but luckily they referred me pretty quickly.

If you're not under endocrinology, can you ask to be referred? From memory based on what friends have said, if you're at RBH it's usually Chelsea & Westminster for endocrinology, but don't know what they're like.

[Mark-f in reply to Lysistrata]

Hi , yeah .. I’ve been with an endocrinologist since I was diagnosed AI nearly 3yrs ago now .. my Hc dosing 10/5/5 never seems enough and I suffer with chronic fatigue and headaches ..

I’m 6ft 2 , 16 stone construction worker ..

It seems strange that’s it’s a one size fits all with endocrin dosing for AI ???

I usually have to updose most days

10/10/5/5 suits me better but don’t tell my endocrinologist!! Hahah 😝

[MikeWhite]

There are quite a few of us on here with AI a consequence of longterm high dose prednisolone prescribed for our Asthma.

I’m on 15/7.5/10 HC

Yes it can be challenging at times but follow the surgical guidelines & sick day rules

I’m under the Brompton for my asthma - I am up there today but with my local hosp for Endocrinology - steroid induced diabetes, thyroid & testosterone,

Steroids have caused issues with my teeth & thinning skin which tears easily bleeding profusely, I’ve also had problems with my eyes glaucoma & high bp.

Perhaps the most worrying was spinal neurosurgery this year to remove the lamina ie rear bone section of two vertebrae .

As I say keep the sick day rules in your mind - I didn’t once when I had food poisoning and ended up with adrenal crisis. Acute kidney injury & sepsis

I learnt my lesson - I also have found that you have to be on top of the surgical guidelines too if you require a procedure as it’s not well known about in hosps

I think I’m on 25+ medications now to rectify the steroids side affects but I’m still here

Chin up & look forward to a normal life expectancy - challenging at times but we are where we are.

There is a good charity website for AI btw

Mike

[Evie3]

😥

[Loveducks]

Hi Mark

I'm also under the RBH ironically about the same amount of years as you. I have been on Prednisolone permanently for 5 or 6 years now. I hadn't made the connection of the thinning skin and bleeding until I read Mike mentioning it. My teeth have been really hurting recently also, so am going to keep an eye. RBH have suggested I reduce by 1mg once a month after currently being able to get it down to 15mg. I am now on 12 and was feeling exhausted, so what I have decided is to take vitamin D along with K2 and Magnesium (not oxide not much use) and I'm taking a B supplement, this does appear to be helping with the tiredness.

I'm changing my diet as well, to try and ensure I get as much vitamins naturally. Apparently there are foods that mimic steroids so trying to kick start your own steroids to produce again but this is early days for me and all a trial. Are you taking Vitamin D with K2? as this is always suggested if you are on steroids, but admittedly only recently have I started taking them due to feeling naff. My daughter has recently been seen by a specialist and he has put her on 5000mg of Vitamin D to help with her bones. You may have to build up to that amount, I am tolerating 2000mg Vitamin D at the moment as it can give you an upset tummy, but the brand I am on now seems ok.

I hope you are able to get this under control, it's a such a difficult one, I had to stop thinking of steroids as my enemy as they keep me alive but the side effects are awful as we all know that take them and sadly it has impacted your bones, hopefully you can find something that works for you and stops it processing. Take care

[Karenjaninaz]

I’ve been in steroids since 2015 for polymyalgia rheumatica not for my asthma save for a reaction after the flu shot. Highest dose was for PMR - 15 mgm. When I went to the hospital, after the flu jab, they gave me very high doses with a taper down.

I am actually tapering, very slowly, under the care of an endocrinologist. I am on 7.5 mgm prednisone tapering 1/4 mgm about every 6 weeks. Fatigued but skin is OK and fat coming off. I am 81. A doctor recommended I take Vit A - it did help.

I have the emergency shot.

Retired nurse anesthetist USA.

[Kekememe1]

I'm in exactly the same boat. Severe allergic asthma. Taking Dupixent but not seeming to help my allergic asthma. On prednisone now for about 6 years. I need to check my cortisol but that's am 8am test. I think I can never come off prednisone either. I've been taking 20/30mg every day for the last 4 years or so. I'm also diabetic (uncontrolled) because of the Prednisone which I need in order to breathe!!

[Mark-f in reply to Kekememe1]

Hi .. unfortunately a cortisol blood test will be incorrect if you’re on anything above

3-5mg of pred ..

It took me a whole year to wean down from 20-30mg daily ..

it’s a tough ask , I know and it took me many attempts .

I’ve now been switched from pred to hydrocortisone which is more alike to the body’s own cortisol production .

I still take pred if my asthma flares up though ..

Hope you can get off prednisone, it ruined me but also saved my life , more than once

[hilary39]

I'm so sorry, it is so hard to juggle all these conditions. I have difficult to treat asthma and adrenal insufficiency from all the pred, too. It's exhausting managing both. Sending a hug.

[ccccc]

I have severe asthma and was diagnosed with AI in 2020 after taking lots of Prednisolone that year after I caught Covid. I can't tolerate hydrocortisone tablets as they trigger my asthma (I seem to be the 1 in a 1000 people who this happens to...) so I am stuck on Pred. Was on 5mg a day but took some high doses lately for an asthma flare up and found I have to wean down (currently on 10mg.) I feel like garbage every day due to the Pred, can't work due to the dizzy spells and fatigue, endo team basically have just washed their hands of me so I am waiting to see a specialist team at Imperial/Hammersmith who can do Pred day curves - they seem to be the only ones in the country who do this - to see how much I am absorbing and how much I actually need and *hopefully* wean me off it completely. I have osteopenia and have to take alendronic acid. I find even on higher doses I feel lousy, I don't know if that's just the steroid or whether I just absorb it really quickly. I try to stay positive but it's a really punishing illness.

[Patk1]

I'm waiting for results of short synachen test.i do have symptoms of adrenal fatigue/insufficiency. I've never taken continuous oral steroids but had frequent courses + hi dose inhaled steroids