Still struggling, really need some answers!

[Hannah125]

Hi everyone!

Once again I have some questions to ask! I know I've been posting quite often on this site but I found it to be very useful (I learned many things that I wouldn't have otherwise! So I thank everyone who took the time to answer my previous questions!)

I've started a third course of oral steroids and I'm on my second day (40mg). I still had some tablets at home and because I felt like there was a lot of inflammation in my lungs I decided I would start a new course because I can't handle this anymore. But as I expected, I still feel horrible (inflammation and tight chest, struggle to breathe). Now my sats are 97-96 most of the time except if I try to take a deep breath (which is really hard) but I almost never wheeze and don't cough. I struggle to do very simple things and I definetly can't go out. My specialist has now moved and is working in another city, I tried to phone him but he is only working in two days. Doctors at the hospital have made it clear that if I don't wheeze and have good sats they will dismiss it as anxiety so there is unfortunately no point in going to see them only to be sent home in the same state. Yesterday afternoon my lungs were like on fire and I really thought I was going to die and it lasted the whole night and only started to feel a little bit better when I woke up. But right now I'm struggling again.

I've been using ventolin a lot lately and yesterday in particular (30 puffs I think) and I find that it doesn't seem to work well anymore. I'm afraid I've developed a tolerance to it and I would like to know how long it will take to reverse that tolerance ? Does anyone know long I should go without using it for it to start working again ?

Also, how long does it take for oral steroids to settle a flare ? Shouldn't I start to feek better by now or is it too soon ?

Thank you!

[Js706]

Hi Hannah,

Sorry you’re still struggling 😞 I’ve had a real good look online to try and find an answer to your question about reversing tolerance but can’t find anything definite (I think it’s something they only properly realised recently). I found a fair few studies saying that the tolerance can set in with a week of regular use so would assume it would be a similar amount of time for it to reverse? I’m seeing my consultant next Friday so I’ll ask him if he knows then!

Oral steroids normally take 3-5 days to make an impact I think. I told my consultant that it normally takes 48 hours or so to start making any difference in me, but I normally notice a decent improvement after around 3 days - which he said was pretty typical.

I know you’ve had bad experiences at hospital before but if you’re really struggling and not getting relief then you should go and get checked out. Or at least make sure you see your GP or similar.

[Hannah125 in reply to Js706]

Thank you very much for your help! I've been doing some research too about tolerance to ventolin but like you I haven't been able to find anything. I'm really scared about this because in case I have a severe attack with actual wheezing (and I'm sure this could happen anytime) I doubt the ventolin would work. I'll to see a GP this week if I can but most of them don't really know anything about asthma.

I was planning to take the steroids for only 3 days (I just wanted to get some relief from this inflammation if only for just a day!) but I already know that when I stop taking them the inflammation will just resume. I'm thinking about changing my preventer to something else but not sure which one to try. I also don't know if it would be better for me to take a combined inhaler or simply a steroid only inhaler.

[Js706 in reply to Hannah125]

I’ll let you know if I manage to find a more definite answer somewhere.

It’s definitely worth trying to see a GP! If you’re worried about their treatment of asthma you could try either printing off some stuff from the AUK website (like action plans or about the different medications available) or just make some notes on the stuff on those pages to talk through with them - if they don’t think something is appropriate (eg prednisolone) get them to explain why they think it isn’t to you.

Technically going to a steroid only inhaler from a combined one would be a step down in asthma treatment - something they normally only recommend once you’ve been stable for 3 months.

You’ll have to remind me - have you tried any other medications for asthma other than the couple of courses of prednisolone , nebs/ventolin and the combined inhaler you’re on?

[Hannah125 in reply to Js706]

I tried Fostair for something like 4 days before I had to stop due to the dry powder making my symptoms worse. And I'm not sure if it's related but a week after I stopped taking it I had two big asthma attacks out of the blue (with loud wheezing and extreme shortness of breath) and I'm now thinking that it may have been caused by Fostair. Two puffs of ventolin got rid of the loud wheezing but the inflammation remained as well as my other symptoms. I believe it is one of the side effects of this drug.

I've also tried Pulmicort for two weeks but at a low dosage.

[Js706 in reply to Hannah125]

Some people do find that they don’t get on with certain types of inhaler! Like I get on fine with the MDI aerosol type ones fine, but one of my friends really struggles with those and she needs a DPI version of the same one.

Have you ever talked to any of your doctors (either GP or specialist) about trying montelukast? It’s really good for allergic asthma and I remember you saying you had a raised IgE - so you might well have that.

[Hannah125 in reply to Js706]

A specialist did prescribe Montelukast but I didn't take it because I've read a lot of negative thing about it like suicidal thoughts. I'm just too scared to try it and some peopke say that it doesn't even make any difference. I really want to avoid taking it but if everything else fails maybe I'll give it a try!

[Js706 in reply to Hannah125]

It is listed on the side effects but it’s down as rare to very rare in the BNF (so less than 0.1% of people are affected by it). And it won’t make a difference in everyone, but that’s mainly because the evidence says it is best for either allergic or exercise induced asthma - so if they don’t have that sort of asthma it’s unlikely to help.

If you’re cautious about trying more drugs you could ask your GP/specialist about respiratory physio if you haven’t seen them? It might at least help make your symptoms a bit more bearable while you get more on top of things and help you manage to do a bit more day to day. I was pretty sceptical about it but they did really help me!

[EmmaF91 Community Ambassador in reply to Js706]

The physio/pulmonary rehab really is a good idea. I know when I picked up a breathing dysfunction the physio really helped calm it down (thusly the irritated lungs reduced too) and gave me methods of coping when I do flare. It really is worth looking into as a support.

[Jandm in reply to Hannah125]

I’ve been taking montelukast since 2008 and have only suffered from the more common side effects. I think at this stage it’s probably worth a go if your not getting any relief. Personally I don’t get any relief from steroids until well into the second week and sometimes longer, so i’d say they vary from person to person and how much inflammation there is in the airway.

A GP visit may help in discussing what other options you have with regards to your inhalers and hopefully give you something to get you over this rough period

[twinkly29]

Is there another hospital you can go to? Or be referred to?

[Hannah125 in reply to twinkly29]

There is a good hospital I already went to (I had an appointment there with a specialist) but it's more than one hour away from where I live. I'll try to ask for another consultant if I have to return to the hospital in my city. The thing is that I never know what to tell them when they try to convince me that no wheeze and good sats mean no asthma.

[MrsCMK]

Hey Hannah! I empathise with you so much! You sound like exactly how I’ve been since April, except (despite it being a struggle) I’m still able to do the essentials such as work etc. Like you, I’ve been using a worrying amount of Ventolin and found that I was needing to use around 8 puffs in one sitting to get some form of relief (I was averaging about 16 puffs a day).

My GP kept throwing pred at me because my I was waiting to see the specialist but the pred gave me horrific reflux which exacerbated my breathlessness and (exactly like you’ve just said) my lungs felt like they were on fire! My specialist was horrified when I said how long I’d had it and prescribed me Omeprazole 120mg a day and Ranitidine 300mg a day for a month to calm things down. She also referred me to Gastro too.

I think it’s so unfortunate and super frustrating that, because you don’t wheeze, you’re not being treated correctly. I don’t wheeze either but I kept fighting and kept reminding every doctor that I saw that “no-one cares as about my asthma as much as I do” and that I would not give up but the fight is equally as exhausting as the asthma itself.

I’d strongly advise you trying to get a second opinion from someone and wish you all the best 🤞🏽🤞🏽🤞🏽

[Hannah125 in reply to MrsCMK]

I'm sorry you had to go through something similar! About the pred making reflux worse, I did notice every time I took steroid tablets that my symptoms tend to worsen the first two days (lungs burning and extremely irritated, feeling like I'm suffocating all the time). Also, when my lungs feel too inflamed I sometime feel like the air I breathe in is cold, I'm not sure if it's related to asthma though.I didn't know if it was only reflux or just my asthma that was becoming severe after the flu.

I'll try to see another doctor this week but based on my previous experiences with doctors, I don't expect anything from the appointment (except being told once again that it's just anxiety!).

[Tugun]

Hi Hannah,

Do you think you have any infection?

[Hannah125 in reply to Tugun]

I also thought about an infection but I'm not sure since my chest x ray and blood tests were normal.

[Tugun]

You seem to be trying a multipronged approach which is a good idea. You could try extra vitamins or have an intravenous vitamin C. They are expensive and you need to see a alternative medicine doctor but I did find it helped to relieve my lungs just a bit. Too many intravenous Vitamin C can cause problems with hormones and potassium levels but one injection should let you know how your body responds. Google - New Zealand Vitamin C and swine flu. Near me there is a health retreat that is run on somewhat economical grounds (It's still expensive) where we can do a 10 day cleanse. For me it didn't work so well but others found it very helpful. I think I needed thirty days! Each person is different. try to find out what works for you to build up your immunity.

Regarding stress - it makes the body work to send out many more chemicals into our blood stream and body. I've always felt that a healthy body has the reserves of nutrition to produce these chemicals. However a sick body has no reserves. The energy and reserves that the body needs to react to this stress depletes it. If there are no reserves the body then doesn't have what it needs for daily living and starts breaking down. So see what you can do to build it up.

Wishing you the best.

[Hannah125 in reply to Tugun]

Yes, since meds have a lot of side effects I've been trying to boost my body with vitamins. Actually lately I've been taking Vitamin D as I read that it could be good for asthma but I didn't know about Vitamin C. I'm also taking iron supplement since I suffer from iron deficiency too.

[Js706 in reply to Hannah125]

There’s lots of evidence for vitamin D being really good for respiratory problems. In the UK they like people with resp issues to be well into the normal range - so it’s worth getting your levels checked.

There’s some potential evidence for vitamin C in asthma but nothing is definite yet.

The main thing with vitamins is that unless you’re actually deficient in them there’s very little point taking supplements. The body is really good at only extracting what it needs to use and getting rid of the rest as most vitamins can’t be stored in the body. So most of these vitamin IVs actually just give you really expensive urine!

[Tugun in reply to Js706]

Hi,

I understand your point with vitamins. Vitamin C is useful in iron absorption so, too much can also cause too much iron. I'm not on any intravenous Vitamin C at the moment as I don't need it and it would probably be harmful to be taking large doses at this stage. However I have had intravenous C for 2 different reasons. In both cases I'm glad I had it. It definitely helped. However if I hadn't seen any improvement then I wouldn't have gone back for a second dose. Each person has different needs but I have found it is also vitally important to look up whatever you are having - vitamins, minerals and pharmaceutical medicine - as it is important to know any ramifications of what you put in your body.

[Hannah125]

I would like to thank everyone for your advice. Respiratory pulmonary rehab seems like a great idea! I'll have to check if it exists near where I live. Also, I've been thinking about bronchoscopy but I'm not sure if it's a good idea for an asthma flare up. But I thought it could help see exactly what level of inflammation I have in my lungs and maybe also take samples to see if there is an infection or high eosinophil count. But I don't know if it is safe to do it while having so many symptoms. Has anyone here ever been through a bronchoscopy for their asthma ?

Thanks!

[AFC11]

Hello Hannah

Sounds like an awful situation. Very sorry!

Have you tried a complete elimination diet. I am able to keep my sons breathing completely under control, by having worked out the foods that after a few consecutive days start to cause breathing problems. We are what we eat, and this is being proven more and more. So I would start immediately by keeping a food diary, cut out wheat and dairy and look at what else you are eating. It isnt a simple fix but if you stick with it, it can be life changing. You need to cut something out totally, not a drop for just 3-4 weeks to see the difference. There is plenty of alternatives in the supermarkets, but dont choose soya alternatives as they are a common trigger for asthma.

[Hannah125 in reply to AFC11]

Thanks for your advice! I do eat a lot of dairy products and I did read that they could increase inflammation in the lungs. I'll definetly try to cut them out.

[hilary39]

I'm so sorry and I totally empathize. I'm in a really bad flare and on day 5 of max steroids (50 mg a day) and still struggling. It's so scary and disheartening. The advice above is good and I don't have much to add other than to maybe get a home nebulizer if you don't have one. They can help disperse the ventolin better than inhalers. Take good care and get some rest if you can.

[Hannah125 in reply to hilary39]

Thank you! I've been on two other oral steroids courses and I was really hoping that they would put an end to my flare but so far they haven't really helped for me. I only took 40mg though so maybe I need a higher dose. I do have a nebulizer at home but I try to avoid using it because I've learned that you could develop a tolerance to the drugs. But right now I can't live without it!

[hilary39]

Isn’t it scary to be on the max of everything and still feel horrible?? I’m really struggling with this flare in particular realizing just how bad my asthma has gotten. Make sure you keep an eye on your cortisol levels as that much prednisone can wallop your adrenals (I just had an adrenal crisis a few months ago after months on and off prednisone and I feel like no doctors have ever really talked to me about that!) take good care. You’re not alone!