Soprobec 200 inhaler and systemic steroid side effects/withdrawal, help??!

[FoxBrush]

38 y/o female - meds Soprobec 200 at 800mg per day and ventolin as needed.

Hi there, sorry this is a bit long, but I am trying to explain a truly confusing muddle! =/

I have been asthmatic all my life since early childhood. I have been on and off various asthma meds over the years with minimal problems/side effects.

Following moving to a new flat in November 2022, my asthma came back with a vengeance following many years of good control on low dose ICS and no symptoms or need for reliever inhaler use.

It took me months to finally work out that the trigger was cigarette smoke entering my flat from the man downstairs, who is a truly nasty piece of work as well. On several occasions it has been so bad my bathroom has 'fogged up' with it, a bit like walking into a pub in the 90s!.

I have had the council works department out, as it's a council flat, and they have been unable to locate where the smoke is coming in or take any action to prevent it, which has basically left me back on the housing register trying to move from somewhere I really like!.

In Jan this year, following repeat visits to my GP with out of control asthma symptoms, I was put on Soprobec 200, at 800mg per day. This is the highest dose ICS I have ever been on.

One small error they made, probably due to a shortage of staff and time, is they did not explain that this was a medium to high dose ICS, and I would require a steroid card, which I was not provided with and had to make my own.

I believe this dose has caused me some systemic problems. Around April time, my asthma really flared up, and seemed to get worse following taking the Soprobec, so I, foolishly in hindsight, tried taking myself off it for a week. Nobody had explained the significance of the dose, or that I should not stop it abruptly.

I experienced some truly horrendous symptoms during that week, including:

A raging, unquenchable thirst causing me to drink well in excess of four liters of water a day, and wake up during the night to drink a large amount of water. This prompted me to suspect diabetes, as it is in my family. I have been tested for this, and I am not diabetic. My GP was so concerned they ordered an on the day finger prick for type one diabetes as well.

A 'period' only a week after my regular one.

I became so exhausted I could not physically get out of my chair, and was heading towards becoming bedridden. Doing even miniscule tasks left me too exhausted to stand up.

Profuse sweating on my hands and feet, so bad I was needing to change my socks every hour at one point.

Nausea

Diarrhea

Severe muscle weakness meaning I couldn't even lift wet washing or a bin bag.

Involuntary movement of my legs at night, this drove me mad as my legs also ached like I had flu and the constant movement hurt.

During last week and some of this week, up to yesterday morning, when I started this month's new inhaler, I began to experience exactly the same symptoms even though I had not intentionally stopped the Soprobec this time. I now suspect this to be ICS withdrawal/adrenal insufficiency caused by the high dose, and the fact my last inhaler was likely not putting out any steroid during week before it was due to run out. It also began to taste foul, so badly it made me retch when I took it and I had to take it while stood over the toilet!. Also my asthma came back really badly during the same week as well.

I have since found out it is possible for these inhalers to only spray out propellant, and not the actual medicine, as they near the end of their life. Soprobec is the cheapest brand they can prescribe, and I have never really got on with this inhaler.

Once I started my next inhaler on Sunday, the symptoms began to subside very quickly. I am pretty much back to normal now.

I have just had a very comprehensive blood test for things like Calcium, kidney, iron, thyroid etc, all the things that can cause similar symptoms, all returned with no further action needed.

Being as ALL the blood tests came back negative, and the usual culprits of things like excessive thirst have been ruled out.

This leaves me thinking the Soprobec 200 inhaler might be to blame. Has anyone else experienced such things on higher doses of ICS? Everyone in the medical field I have asked says this cannot happen, as ICS do not go systemic. Whilst this is likely true for lower doses, I honestly think higher dose ICS can have systemic effects, including withdrawal.

Is it worth trying to battle for an adrenal function/cortisol level test?.

Thank you.

[Homely2 Administrator]

medicines.org.uk/emc/produc...

I hope I have copied you the link to the patient information on soprobec 200, which talks about that it may be systemic ie unlikely, but it can be. It also talks about adrenal insufficiency, under side effects.

I have had similar confusion on my drug alvesco, the tertiary centre say that they generally regard it as as possibly systemic above 320. While my local consultant says he regards it as unlikely to be systemic at 640 and is much better than prednisone. Net result is I am on 320 with excursions when needed up to 640, from my brilliant GP nurse who has to work it out in practice, rather than theory.

Following on from perspective this my local consultant only uses steroid cards if on prednisone, while medics elsewhere use them for high dose inhalers.

I think you need to know what to say to your GP and your council.

So I would ring the asthma UK helpline on 0300 2225800, office hours, and ask them re

1. Alternatives to Soprobec, which is a new one to me. There are loads of inhalers out there, you need one that suits you. You can then go to your GP with some ideas.

2. Whether you should be referred to an asthma consultant, I was referred immediately my GP nurse felt she could not control my asthma. Asthma can get scary, so you need to be with the correct medic. Though you seem to be with a GP who cares, which is good.

3. Also ask them re cortisol test, which luckily is outside my experience. There are quite a few people on the forum who have had cortisol issues. It certainly is not an issue to ignore as it can get nasty.

Re the council, can you use the angle, that asthma is legally a disability, and they are in their choice of accommodation actively worsening your disability. Asthma kills, so your present situation is creating a risk to you. Can you create a letter along these lines, referencing relevant legislation re asthma being a disability, giving quotes re death rates in asthmatics etc, then send it to the council by registered post, with copies by email. Maybe ask your GP for a supporting letter.

Best of luck with it, but yes, I have also learnt by experience to never vary inhaler dosage without a medic say so, and to never fully trust an inhaler near the end of its time.

[Patk1 in reply to Homely2]

Great advice from Homely2. Ringing helpline is a great idea.id also contact citizens advice.Meanwhile is it possible u cld get an air purifier to see if it helps.depending on Yr budget there are some really gd hepa+ carbon filtered ones on ebay,very cheap.ive 2 little ones + they're v good.

All the best in getting sorted

[FoxBrush in reply to Homely2]

Thank you SO much for this balanced, thoughtful response Homely2. I am in the process of asking my GP for a cortisol test, which initially involves a 24 hour urine and a blood test I think, then the short synacthen test if those results are abnormal . Minor inconvenience for me and for them in order to at least rule this out.

The thirst is possibly the worst health symptom I have ever experienced. I am waking up every night between 2-4pm GASPING for a drink at the moment. I also noticed I am not peeing quite as much, and certainly not often enough to equate to the amount I am drinking!. For example I do not wake up at night to wee, I wake up at night to drink gallons of water. The thirst is so bad it actually causes me to have a dream where I am in a frantic struggle to find water to drink, then I wake up.

These symptoms have disrupted my ENTIRE life. I am unable to go out for long, I must carry at least two bottles of water with me and when I have drunk both, I have to buy more and it's not cheap. I also can't plan anything, because I never know if I will be able to move on any given day. When that happens, it really feels like something has cut off all the power to my muscles, I can't even lift a bit of wet laundry, and my dog, who I am usually fine at handling, almost pulled me over last week. I also started getting dizzy spells just before I had the bloods done as well.

Since starting the 800mg Beclomethasone it feels as if I have less than a quarter of the energy I had before. I struggle to do even basic things now, I tire so quickly. I am having to choose what to do on any given day, and it's choosing between things like doing washing or hoovering, or I can clean a quarter of one room a day before I am shattered. Only before Christmas I was able to do the whole flat in less than an hour!. Now it takes me several days. Everything takes me AGES to complete, like it can take me an entire day to do one bowl of washing up sometimes it's that bad now.

As for the council, they are aware and I am trying to get rehoused. However I have been told they cannot guarantee the same thing won't happen elsewhere!. I only moved in here in November of 22, I like it here and it's incredibly sad.

We've been in touch with the helpline as well, who did not rule out the possibility the high dose beclomethasone might have contributed to an underlying cortisol issue, and suggested I have more tests done.

I was very shocked when all the bloods came back normal. I really was expecting either diabetes type two or thyroid to show up on that, as both of those are in my close family as well.

[FoxBrush]

Well on June 1st, I had my early morning cortisol blood test.

Results came back on June 5th showing my cortisol was 111, only 11 above the level where I would have needed to go straight to the hospital.

My GP was very concerned, and even though she was trying her best not to alarm me, I did ask her how dangerous this was. She warned me to watch out for symptoms like vomiting, severe diarrhea and fever or any sign of an infection, and if I get any of them, to go straight to the ED.

Having discussed this with my GP, she did seem to think that due to my family history of endocrine disorders, and the fact I have had similar symptoms, including the thirst, in the past when not on ICS, that it is unlikely ICS is the main cause of my problem. She said it's possible, but having taken a history from me, it's unlikely. I take all the precautions with my ICS, use the aerochamber spacer and always rinse my mouth after using it. So I am beginning to doubt whether that is 100% responsible for this at this point. GP suspects Addison's due to genetic background and symptoms.

I have been referred to endocrinology and have my triage telephone call next Wednesday.

Due to the severity of my symptoms, I am hoping they fast track me, or if not, we are willing to pay private for the initial consultation.

I am assuming this will be confirmed via the ACTH test, and hopefully I will be started on some treatment, as my symptoms are getting worse. I will stress this when I talk to endo next week too.