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Diagnosis, finally!

So I had my first injection 2 weeks ago, the side effects have just been similar to what I had with steroids. Not the most pleasant but my chest has settled a lot with this alongside my 3 inhalers!

I finally got a diagnosis of severe refractory eosinophilic asthma, which is something considering for the last 6 months they've never been exactly certain as to what's been going on other than the narrowing of an airway. Has anyone else got this too? I'm scheduled for another CT scan and full blood count. My consultant wants to see what damage has already been done to my lungs and if any more tests are needed.

I should hopefully get the decision as to whether i get the new injection soon too.

I feel incredibly emotional and just down about the whole situation. I know it's probably just side effects talking.

Sorry for ranting, as usual.

Any advice or experiences are welcome and I'm extremely grateful for any ☺️

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Hi what injection are you getting? It sounds like you have been through a tough time so go easy on yourself. Asthma is exhausting and going to GP, hospital appointments and scans is tiring and frustrating. I'm the Mum of a severe asthmatic (with my own moderate asthma) and I find it hard enough! It does sound however like you are getting somewhere with your condition and if things continue will be on the way to recovery. Medics seem to be pulling out the stops with scans etc (may seem too little too late but can take much longer) and if I'm guessing correctly the injection is monoclonal antibody treatment? Let me know as have experience of Xolair. You can search for my reply to previous recent post. Good luck and fingers crossed. No point worrying about CT scan. It might be fine...my son's lungs were shown to be in surprisingly normal! Steroids must have helped though not without side effects.

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Hello! It's triamcinolone acetonide at the minute which is basically just a steroid injection, but I'm waiting to be approved for the mepolizumab injections which my consultant thinks i will be. Thank you, i find it's draining the life out of me most days and then there's things I want to take my 3 year old to do like trampolining or wacky worlds that I can't because I know my lungs won't be able to handle it.

I think I spoke too soon, I woke up yesterday morning wheezy and my chest tight but I suppose it's something to feed back to my consultant when I get my next injection in 2 weeks. It seems to do this, get a lot better and then plummet downhill very quickly. I'm just glad that now they're trying more things and hopefully will find something that works long term.

Yeah I've found that, it's taken a lot more seriously now and scans/tests are almost rushed through. I will have a look thank you!

I bet it's difficult to manage your sons asthma and your own! Is he having injections?

I hope so, i think it's just when I think about it all I start worrying but hopefully it will be fine. That's good! Oh of course.

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Fantastic that you look to be on course for mepolizumab. Please, please push to get this ASAP. Firstly get them to confirm again that you are a really good candidate. Ask why any delay? Say you are not controlled on triamcinolone, or anything else and desperate to get better especially as you have a dependent young child. Be strong, angry, cry, whatever you need to get across that you need a change. May help if there is an asthma nurse there and if you can have a relative or friend with you. People tend to behave better when others listening and also you can get them to remind you what was said. Get them to take notes or at least look like they are! None of this may be necessary but it won’t hurt. My son has been on Xolair for 4 months. It literally worked overnight with the odd little blip. I think mepolizumab could arguably be an even better treatment for a good candidate. Please do look up my other post on adrenal insufficiency. I really don’t want to scare you but at the same time I feel telling his ‘story’ might stop it happening to someone else. My son has adrenal insufficiency as a result of all the steroids he has taken. This occurred over a period of two years, most of those under Consultants. I think it was prednisolone courses that did most damage but he also had high doses fluticasone in inhalers everyday (that can do it) and finally two injections triamcinolone. The first one worked really well for both his asthma and other symptoms which we now know were due to low cortisol. The triamcinolone was replacing this. It wore off and they gave him another dose, really to bring IgE levels down further so they could reduce the amount of Xolair he would need. It didn’t work at all, IgE went much higher, bad asthma and was getting sicker. I asked about adrenals in June, they were tested in November once second injection out of system and found to be very poor so he now needs hydrocortisone tablets three times a day. He still gets stomach aches, headaches, feels sick, dizzy, tired etc etc especially after strenuous exercise but now that asthma controlled his body is under less stress so everything is better. Sorry for the essay!!! It’s still very raw! Ask about getting your cortisol levels tested too.

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I'm really hoping I get it. The appointment I had when he told me about putting me forward to get it was rushed as my son was also in hospital with a lung infection at the time, so I didn't get to ask all the questions I wanted to. I just got a leaflet and told that he'd contact me when they made a decision. I think when I go for my second triamcinolone injection I'll just explain then that it's only working for a short period of time and then my symptoms are just going back. I have an emergency pile of pred but I don't think I'm supposed to use it whilst on this. I hate steroids in all honesty, yes they do the job but after being on 40mg for 5/6 months, the side effects are dreadful and the minute I stop taking them it just goes back to how it was. Thank you, I will do. I used to ring my nurse at least twice a week if not more because I was struggling that much. I will do thank you, sometimes I feel like I get looked at as a child still.

That's good, it's like a sigh of relief finding a treatment that just works after spending so long on different things isn't it? Of course, I've been reading up on it and it's definitely worth trying. It will be for the foreseeable future, being reviewed every 4 years.

I have just read your post, your son has been through so much bless him, as have you! I can't imagine how difficult it has been. Oh my gosh, how long was he on pred for? I have 3 inhalers alongside the steroids and now injections. 2 steroid and then a reliever. It's worrying to hear about things like this that can happen from taking a medication that is supposed to help! But I know it happens unfortunately. How did you find out about this? Did you ask for the test to check the levels or did they just do it? That is so awful, I honestly hope they find the right treatment for him and that it all gets easier for you both. No don't apologise!! I can imagine it being, it's never easy and to see your child go through that must be horrendous! My son has been in and out of hospital since he was 3 months old with his chest. Literally the same time of year, every year and then twice this year already and once over Christmas with lung infections that just didn't clear. I am starting to wonder whether he is going to end up in the same boat I'm in but they wouldn't even diagnose his asthma because of his age, he got a reliever inhaler and that was it. It's hard to watch your children go through something you can't do anything about, so my heart goes out to you - you're doing a fab job. Sorry for the essay also!

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I think prednisolone was the main cause of the adrenal insufficiency but Can’t discount the fluticasone in his Seretide inhaler ...he ended up on a high unlicensed dose 1mg inhaled a day when 0.4mg can cause adrenal insufficiency. I gather it doesn’t stay in the lungs as much as first thought. Then add on 35mg a day pred. in usually 5 day courses. He started getting symptoms we now think as due to adrenal insufficiency after around 4-5 months of being on and off pred. This was mainly stomach pains around belly button and headaches.

He was referred to food allergy. He’d been there before due to egg allergy as a baby and subsequently nuts, prawns, various fruits. Blood tests added on wheat allergy, other legumes. He’s been on diets excluding all this but made no difference to stomach pains. Also saw Gastroenterology who did little but exclude coeliac and crohn’s and try sodium cromoglycate as tablet which did nothing.

Over time he was getting this more frequently with headaches, dizziness, nausea and vomiting, tiredness, poor sleep and looking more and more pale. He seemed to crave sugar too and was weeing more so I worried he had diabetes but negative. The weirdest thing was reaction to temperature as he often felt cold even on hottest day of the year. Often asthma symptoms were followed by the rest. Probably as stress on body needed more cortisol that he didn’t have. The stomach pains etc were actually worse than the asthma as nothing made them better. Last summer was back and forth to GP with course after course pred which wasn’t working. Even saw same GP for a change until he retired and saw the asthma nurse. She was the one who talked about it not being good to be on so much steroid. I know steroids should be used with care (I used to work in drug safety!!!) but you get desensitised to it and the Respiratory, Food allergy and Gastroenterology Consultants and G.P.s never actually raised side effects from steroids. If I ever did they’d say he is growing well in height even though weight was up and down. I think measuring height clearly isn’t enough!!! So in the end I raised concern about the steroids and lack of tapering etc in June and Respiratory consultant said would do cortisol stress test. It took until November before it was done as he was on triamcinolone. The second triamcinolone injection additionally caused necrosis of fat layer in skin so he has a 3cm crater in bottom where injected. The injection is supposed to go into muscle but can be a kind of backdraft, It hurts too. You need fat on your bum for sitting down! He needs plastic surgery but they are reticent to refer him and say he will be very low priority. When finally had test the cortisol levels were about 20% of what should be. I think the main improvement in his general health is from being on Xolair and asthma controlled andbody being under less stress. Hydrocortisone tablets weren’t doing a lot before this except for worse symptoms.

I don’t know how common adrenal insufficiency is. I get impression from adrenal consultant that his experience with steroids was quite extreme. However I also feel that symptoms came on quite quickly but were not recognised for 18 months. He must have seen 4 Consultants, same number registrars, 5 different GPS and same number of nurses and had 2 admissions. Every steroid has drug information concerning the risks of adrenal insufficiency. So much of the time with Drs in spent with them inputting information into computer medical records but I really question when these notes are read and studied so two and two can be put together. I have asked why cortisol levels aren’t measured more routinely. Slapped down as not reliable but better than nothing! Rant over

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Sorry to hear about your son And these infections. I think this has been a really bad year for viruses causing chest infections. Is it the early viral part of cold that causes breathlessness or once he has a bacterial infection (green yucky stuff). Do you get respite in the summer when less colds? Do you ever go on holiday and find he is better? Mountains and beach are good for us. My asthma is different from son’s. For one thing he only wheezes when very bad and rarely coughs. He is much more allergic to loads of things but dust the worst, (had eczema as baby, food allergy) I’m more from infections. Mine is much better than when a child though. Possibly because lungs grow and inhalers have improved. Your son may not be diagnosed with asthma but if he is at least he will have an expert as his mother! Fingers crossed for both of you. My son is so much better now in every way.

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