Steroids and antibiotics ..again!

[glowing]

Having a bit of a 'woe is me' moment and just feel like having a moan. What better place to do it than to people who understand, who can't hear me and don't have to read this if they choose not to. It would be nice if somebody does read it as you might be able to relate to it. I have sinus trouble again, causing unpleasant headaches, coughing and wheezing. I am now on my fifth course of both steroids and antibiotics because each time a course ends my condition hasn't improved and I have to have another course. Steroids make my face feel and look bloated they also cause constant hunger pangs (not easy to ignore) and cause thinning of my skin, which is easily damaged by the slightest bump. I'm waiting for an appointment for a lung function test in the hope it might give me a clue to the cause. End of moan.

Okay, so it's not all that serious and could be far worse, but on the other hand I wish it could be far better.

If you've read this, thank you. If you haven't then this won't matter

Glo

[s162216]

Hi Glo,

Sorry to hear that things aren't going too well at the moment, I hope that the antibiotics and steroids help eventually. I've never had steroids (in my memory anyway - I did get them for a short time as a small child), but those effects you describe sound like classic side effects of use unfortunately. Glucocorticoids (steroids) are one of those drugs which can be absolutely life saving and extremely helpful, but at the same time cause other associated effects which can be almost as bad sometimes. I hope you get that lung function test soon as I'm sure you want to find out whats going on!

Sam

[glowing]

Hi Sam.
I didn't mention how grateful I am for my treatment of subgam as in the past I would have been really ill.

Glo

[vegematic]

I'm sorry you are struggling with this Glo. Has your doctor said why she thinks the steroid and antibiotic will work this time if they haven't had any effect yet?
-nancy

[glowing]

Thank you for your interest. The doctors all say that it's standard practise for exacerbation of asthma. I had the same treatment almost constantly for ten plus years before I was diagnosed with CVID. I have mentioned my problem to the immunologist and he told me asthma is different from CVID and that I need to see my GP. I've been going round in circles like that for years. I was told that my main probem is from constant post nasal drip, especially at night, which settles in my throat and upper respiratory area and makes breathing out difficult. (It all sounds so ladylike.) Lately I've been wondering whether or not to ask to see an ear, nose and throat doctor to see if the problem can be sorted. I really don't know what to do but once I have the lung function test I can ask for advice. Whenever I go out or move faster than a sloth, people turn round to see who is wheezing so loudly.

Glo

[s162216]

Any news or improvement Glo?

Sam

[glowing]

Hi Sam. Thank you for asking. My condition has improved in as much as I can move about now and only need to slow down instead of stopping. Friday was treatment day and I think it had something to do with me feeling better Saturday. That's been the best result so far, except for at night, when it's much the same. Laughing sets me off coughing and choking. (As it's usually at my own jokes there must be a lesson there somewhere. I'm on the last day of this round of antibiotics and steroids so I shall find out in a day or two if I'm really on the mend or will have to return to the GP.

I really hate the way the steroids make me feel but it's still better than not breathing properly.

Glo

[glowing]

Hi Sam.
Last week I received an appointment for my lung function test, with two days notice. It was good that I didn't have long to wait. Now I've just got to wait to see the doctor for the results. My appointment is in June.
I'm not sure if I dare say in case things change again, but my wheezing has eased up a bit and only starts when I'm trying to move quickly.

Glo

[s162216]

Hi Glo,

Its great that you've had the lung function test (do you get one every year as all PID patients are supposed to?) and things appear to be improving (even if its slight its better than nothing!)

You should be able to talk with your doctor over the phone at least regarding the results, or I would expect them to contact you if theres something wrong.

Hope things continue to seem to go well!

Sam

[glowing]

Thanks Sam.

Glo x