Struggling with eosinophilic asthma

[bowbelle]

Here's my conundrum, maybe you'll think I'm being a bit pathetic. I have eosinophilic asthma, and I'm finding it hard to walk anywhere, I have to stop every eight or ten houses to get my breath back. It's an unpleasant experience going anywhere. I am taking a lot more Ubers. I work at home so there is a temptation to stay there, but I can't be a recluse, it's not healthy. What are your suggestions? If I push myself I end up exhausted and on the verge of a full blown attack, especially in this cold weather.

[EmmaF91 Community Ambassador]

Hi

As weird as it sounds are you always like this or is it a new development due to infection/weather etc? If it’s got an obvious cause I’d suggest seeing your GP/cons and discuss prednisolone/ABs or short term drug change to get through the weather (if you’re normally well controlled). If not (and this has been a gradual, long decline of control) are you under a specialist hosp, your local hosp or just your GP? If it’s your GP it’s definitely worth asking for a referral to a cons! Have you had any discussion about biological treatments such as mepolizumab or reslizumab etc?

I have severe eosinophilic and atopic asthma and at my worse I was in a similar situation (a&e/admitted every week or so etc) but since starting mepolizumab I can ‘forget’ I have asthma if I’m not ill... about to swap off of it for something else (not sure what yet) due to side effects but my lungs are brilliant!

I’d definitely advise seeing your doc but possibly more towards your consultant end than GP. Hope that helps and that you start to feel better soon x

[bowbelle in reply to EmmaF91]

Hi Emma,

I've been like this for a while, more than a year. I'm supposed to be with Guy's Specialist Asthma Unit but their appointments are months and months apart. They offered me a meeting with the consultant next August, tis was in November!!! I'm thinking of paying to see him. I worry about what is more unhealthy, to stay at home and feel relatively OK, albeit very tired, or to make myself go out and really struggle. No one seems to have any ideas about this. I'm taking high does of Flutiform and Ciclesonide, and occasionally self medicate with Prednisalone, but it only gives me brief respite.

What are the side effects you've had with Mepolizumab? No one has offered it to me yet. J

[EmmaF91 Community Ambassador in reply to bowbelle]

It may be worth getting your local to prompt Guys to see if they can speed things up a bit... sometimes a doc get through the system faster (sometimes there no diference). If you have an email for Guys or the asthma team there it may be worth messaging them and unloading exactly what’s going on. If you can afford it tho it probably will be easier/quicker paying privately for the initial and transfering to NHS once your there if you’re not under them yet!

Have you tried theophylline/aminophylline tablets? I know that was a godsend when I was waiting for RBH.

I always struggle with the ‘in and ok or out and wheezy’ question, but will usually go for the out if I can, even tho that has lead me to resus/admissions a few times 😅 - I’m sensible but refuse to put my life on hold and go stir crazy if I stay in for too long!🤪

Mepo has been brilliant for my asthma, but I’m getting a lot of migraines (3 a month instead of 1 every 3 months) and all my old injuries hurt (and I have a lot of them) which is creating problems work wise as I have quite a physical job 😒. On top of that I’m also nauseous a lot of the time. However I do know a lot of people on it with no side effects, and the asthma improvement I’ve had has seriously made me debate about switching/stopping even with all the side effects! Definitely worth a try if it’s offered to you!

[strongmouse in reply to EmmaF91]

Wonder if going out with a mask might be helpful? One which filters pollutants and allergens? Ok it doesn't look cool but under a scarf at this time of year it wouldn't be noticed. If you live in an area near to traffic or pollutants going out might well aggravate breathing problems.

With regard to the consultant appointment, I have found speaking to the Consultant's Secretary can be quite useful in terms of being seen earlier if you need to be. Just ask to be put through via the hospital switchboard or check on your appointment letter. Sometimes, when we are put on the list, other people don't realise how urgent a problem is.

[LDloveslattecoffe in reply to EmmaF91]

EmmaF91 has your GP said these are side effects or is that what says are side effects with patient leaflet for drug?

You said increased your migraines and old injuries.

Have you had fibromyalgia checked out or osteoarthritis?

Could it be you need to check out change migraine meds?

Have you had blood pressure checked as this can affect your migraine and strangely enough since I've been on BP meds the frequency of my migraines are less.

Honestly some meds I have looked at side effects and thought I would not know if its a side effect or just already existing condition.

[EmmaF91 Community Ambassador in reply to LDloveslattecoffe]

The migraines and soreness are relatively common issues with mepo according to RBH staff, and as it started the day after my first injection and worsens after each new one the correlation is quite strong so shouldn’t be OA/fibro as before the mepo I only had ‘normal’ soreness from sports etc (at 27 I hope I don’t have OA too bad!).

I don’t have migraine meds as previously bad ones were relatively rare and resolved in 48hrs. My BP varies with my asthma, when I’m well my BP is fine, when I’m symptomatic it goes quite high, but as that’s normal with asthma and it self resolved not getting BP tablets.

[LDloveslattecoffe in reply to EmmaF91]

Ah right, didn't know what mepo was or that was an injection.

Hope they find you something else as effective then.

[EmmaF91 Community Ambassador in reply to LDloveslattecoffe]

That’s fine! Mepolizumab is a (relatively) new biological treatment for asthma, which can only be given as specialist hosps, where apparently they’re starting to see a correlation between the injection and muscle soreness.

Thank you! I hope the next one is just as good for my asthma, with less side effects!

[Sparkimoore in reply to EmmaF91]

Hi!

I’ve been on MEPOLIZUMAB for 22months now ( I was the first in uk as Jersey was able to get the drug a few months early) My prof in Sou said that severe headaches/migraines are the no 1 side effect & some people have them so bad that have to stop the medication. Also, the other v bad side effect is utter utter exhaustion & esp bad within the first few days of taking the injection. Sadly the Mep has had little effect for me, but I haven’t had any signnif headaches so it’s certsinly not the case for everyone. Really hope they settle down.

Good luck to you both! If you do need to stop it, Reslizumab is now available & works in a similar way. It looks like I’m down to try that next. Fingers crossed!

Bestest wishes

Rose

[Sparkimoore in reply to Sparkimoore]

Meant to say, I have the wretched exhaustion, & im starting to notice muscle pain tho strange that it should start after so many injections. Maybe down to something else.. who knows?!!

[EmmaF91 Community Ambassador in reply to Sparkimoore]

Oh the fatigues a big pain in the bum! Getting through the day with caffeine which isn’t great for the headaches but need to work so 🤷‍♀️. My cons trying to decide between reslizumab and benralizumab atm so don’t know where I’ll end up 😅.

My reaction to xolair didn’t start until after 6/7 injections so maybe it’s a delayed onset/build up reaction 🤷‍♀️.

Hope the reslizumab works better for you x

[bowbelle in reply to EmmaF91]

Thanks guys for the information, which has been very helpful. I already have 'chronic fatigue' fir whatever reason, so tiredness would be a complete no-no where side effects are concerned. The side effects do sound really serious in these drugs, wonder whether they are still using people as guinea pigs? I will try some of the suggestions here, and try to be a bit more pro-active where the Guy's helplines are concerned. I feel like I'm giving up hope - I'm 66, and this has completely turned my life around. I'm very sorry for you Emma, having all these problems at 27, I hope they can get the meds right for you.

[strongmouse in reply to bowbelle]

Hi Bowbelle, it is hard when you accummulate more than one illness. Especially if you feel you are just managing and then bam get knocked back. I have had ME / CFS for over 20 years plus allergies (food, inhalants, pets, moulds...) and have had GORD for longer. Then asthma diagnosed over 10 years ago which got worse two years ago after 'flu. It is incredibly hard at times to stay positive.

In my experience I try to focus on one area of my health to improve which I think will male the most difference. It can be hard going out at this time of year, but even a short walk gets the circulation going and helps the endorphorphins which lifts your mood. There are times when I am at home a lot and can't get out - this summer with very high pollen levels was difficult. It is important then to have some enjoyable things which you can manage at home. I found that learning about Pacing really helped me. Find your level where you can do something without any ill effects. Stay with that and then very gradually increase. Go back to base line if you become worse. You will find your own level. Good that you can work from home.

Above all be kind to yourself. You are managing the best that you can.

[Sparkimoore in reply to EmmaF91]

Have you been tested for EPGA/Churg Strauss Syndrome?? I have that.. & the severe esophilic asthma is a small part of it. ( I saw it on Sky Mystery Diseases & told them!) Im potentially for Ben .. whatsitsname if Reslizumab doesn’t work. Mepo dose tripled is an option too, or Ritoxumab if they decide to go down the EPGA only route.. Guinea pigs but I’m just thankful there’s some new drugs to try.. JUST in time for me as Pred & Mycofenalate stopped working suddenly..

[bowbelle in reply to Sparkimoore]

Hi Sparkimoore - I'm sorry you have EPGA, it sounds like a lot to deal with. I looked it up, but have none of the symptoms except the coughing, shortness of breath and fatigue. I was reading about recent research which links chronic fatigue to the immune system, and as eosinophilic asthma is very much an auto-immune problem, I think that is the area I think I'm in. My initial post was really about my worries about staying in: I work at home, and like being at home, so it is easy for me to persuade myself that I should be there rather than forcing myself to go out, which is an unpleasant experience. But I worry that I will just become more and more unable to walk, just by being at home. I worry about shorting my life by being housebound.

[strongmouse in reply to bowbelle]

Yes there is more research recognising the link of ME / CFS with the immune system. Stick with what you can manage and only gradually try to do more. Dr. Darell O Yo Hen Yo wrote a book on better recovery from viral illness, and although I have never recovered (the ME / CFS for me occurred after a viral infection) it gave me some good strategies for managing ill health, including pacing.

All the best, and hope you find what works for you. We are all different and manage as best we can.

[bowbelle in reply to strongmouse]

Hi strongmouse: thanks for your advice, which was very sympatico and helpful. I have bought the book, as the pacing idea appeals to me. It's difficult when friends suggest things you should be doing - training for 5K run was one of them! At the moment I don't find pushing myself where walking is concerned, works, it is just a longer bad experience. At the moment (I live in London E3), there is cold air and also the normal pollution to deal with, and just making it round the block is difficult, have to stop more and more as I go on. I am overweight as well, and after a lifetime of dieting, I can't do that any more. I know I sound feeble, but as you know, it takes a certain amount of girding up your loins just to face each day. CF is something that is hard for other people to understand, they think it's like normal tiredness.

[strongmouse in reply to bowbelle]

Yes it is a very definite illness way beyond 'tirdeness'! I think it can be likened to a battery that has run down. With rest it may be possible to 'charge' the battery a bit more, but then it can quickly run down again. I find that if I go beyond my limit then it takes me a lot longer to recover. Infections, stress etc all take a toll aswell. It is still a misunderstood illness, but there is slowly some good research emerging (e.g.ME Research is funding some.) Not all of the book may apply to you so go with what works.

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If you’re not wearing a mask, get one. Not one of those wimpy surgical masks but one that will seal completely around your nose and mouth. You will breathe warmer air and that might help.

[ALUK_Nurses Partner ALUK Asthma Nurse]

Hi, It sounds as though you have been really struggling recently. From reading through I can see that you are having some issues with your care and appointments. I agree that you might want to try contacting the team at Guy's hospital to make them aware of the situation. You could do as has been suggested which is to call the Consultant secretary. I think it may be worthwhile contacting the Respiratory Specialist Nurses. If you do not have their number you could try going through the main switchboard. The level of symptoms you are experiencing and the length of time you have been struggling with this is of concern. It is important that you are able to talk this through with someone and have the situation reviewed and you action plan updated. I hope this gets better for you very soon

[bowbelle in reply to ALUK_Nurses]

Thank you for your advice - I'll get my act together this weekend and ring next week.