Was doing so well!

[HoppyNurse]

So after managing to stay home for the last 9 weeks - here I am again having been admitted. Not Covid, or at least I don’t think so - have been swabbed so will soon find out. The good old pred that I’ve been taking in high doses since October and been weaning slowly over the last 8 weeks has left its lasting mark on my body! I’m in adrenal crisis 😩 I’ve got zero energy, even the smallest task hard to complete and makes me out of breath, my heart is going like crazy and the dizziness is horrible! At least it’s not an “asthma” admission however it’s because of the asthma that I’m having these issues now, hey ho another medical complaint to add to the ever growing list!

[HoppyNurse]

Although the heat has made me more wheezy and tighter than usual nowhere near enough to need admission

[Tengudreams]

Oh wow, you are suffering I am sure. I am so sorry and I can only imagine how scary it must be. I have never experienced what you are experiencing, but I can only admire and hope I have that level of strength. I wish I could offer something more substantial, but this is useful for me when I am in difficult positions. Listen to it on your headphones and it can maybe help calm you and comfort you. Goodluck and check in!

m.youtube.com/watch?v=rQ3LO...(Not working as expected?)

[Poobah]

You poor thing, you've really been through it. I hope that your respiratory team can find a resolution to ease your ongoing symptoms. Do you qualify for biologic treatment?

[HoppyNurse in reply to Poobah]

I’ve been on benralizumab for the past 4 months! The difference compared to before is so noticeable hence the 9 weeks at home and weaning the pred! It’s definitely helped me for my asthma, although still get wheezy some times but they are manageable at home.

[Poobah in reply to HoppyNurse]

Well, I really do hope the team can get you back on track. All the best. 🤗

[EmmaF91 Community Ambassador in reply to HoppyNurse]

Glad the benras been so good for you!! 🎉🎉

[ninelives]

So sorry to hear you are back in hospital sampling the delights of NHS cuisine.

Do hope that you get better soon.

Sending a virtual hug and very best wishes

[EmmaF91 Community Ambassador]

Sorry to hear this! Hopefully the endo team will be good and help you get settled and sorted ASAP and be really supportive! *hugs*

[Lysistrata Administrator Community Ambassador]

Ugh so sorry to hear this! I also have AI from steroids, so happy to help with totally non-professional but fellow sufferer advice if it would be useful!

Have you been referred to/seen anyone from endocrinology to start managing this going forward?

Hope you feel better and escape soon.

[watergazer]

Sorry to hear of your troubles- seems that one condition leads to another because of meds. Take care. Hopefully you'll be home soon. x Anita

[hilary39]

Oh wow, I am so sorry. Terrible asthma and an adrenal crisis at the same time is pure hell, I have been there. Please take it easy on yourself, your poor body is doing the best it can but it sounds like it's struggling right now. I'm glad you are under the supervision of professionals. Make sure to push for a clear dosing schedule for hydrocortisone to help you recover from the crisis as quickly as possible. You may need to updose for awhile.

Take good care and let us know how you are doing!

[HoppyNurse]

Thanks everyone for you comments. I’m home tonight and starting my life with hydrocortisone! I nearly just got sent home with nothing, the second came to me and said all my bloods were ok and my x-rays are ok so I could go home and slowly continue to wean the steroids! I questioned her asking what my cortisol level was today etc and she went away and came back after speaking with endocrine, with the plan for hydrocortisone and clinic follow up in a few weeks. It’s fortunate that I have the knowledge and the courage (I am a nurse) to question the doctors plans, otherwise who knows what would have happened.

[EmmaF91 Community Ambassador in reply to HoppyNurse]

Glad you questioned that!!! Well done (cause it’s not easiest to advocate for yourself even when you know you’re right) and hope things calm down now!

[Lysistrata Administrator Community Ambassador in reply to HoppyNurse]

I agree with Emma - it's not always easy to do for yourself even if professionally you can for your patients/other people - but glad you did! I have sadly found that being knowledgeable and assertive is particularly essential for the adrenal stuff, since endocrinology seems to panic many drs and they do some really odd things. (I think my endo nurse specialist knows this too judging by what she said at my first appt).

Hope you start feeling better and get on ok with the hydro. If you're on Facebook there is a useful group called the Adrenal Diseases Support Group which I found helpful starting out - some good information there about AI and practical things like medic alert bracelets. (Though you may already be more knowledgeable from your professional life!)