New to inhaled colomycin.. Anyone had a rash ?& Advice please on best nebuliser?

[Phill1]

will be starting neb colomycin soon.

Had a trial on Monday which went fine but developed a small rash on my neck on the evening.. Which is One of the contraindications of colo .....but was only a small 4" ish rash so ? Just a coincidence... ? Happened to Anyone else out there ?

Also .. The NHS nebuliser I've been given had to hang a tube out of a window which is not very practical for me. So looking to buy one

Any suggestions on best nebulisers ? Please

Someone has posted about the ineb hand held that you use with Promix ( aka another form of colomycin ) which sounds great! but can't find out how to get hold of one . Is that in much use in England??

Also anyone tried the Nebulafix??

Thanks!

[eleanordigby]

Firstly, I think you should tell someone about the rash. I didn’t know it was a contraindication.

I’ve got an Ineb, and agree standing next to an open window is ridiculous, especially in this weather. The Ineb is small, fast and rechargeable and you can use it anywhere. To get one, your gp has to agree to prescribe the Promixin brand of colomycin, which is more expensive than generic, so ask your consultant to write to the gp and request this. He wants you to make the change, after all! Philips Respironics will then loan you an Ineb, free of charge. I think they’re quite expensive to buy.

It’s easy for people with CF to get an Ineb, but as usual it’s not standard provision for us, so to some extent it depends how willing your gp is to spend a bit more of the surgery’s drug budget on you. Given the massive amount you’re saving the nhs as your husband’s carer, I hope you won’t have any trouble.

[Phill1 in reply to eleanordigby]

thanks ! That's Great ..to hear.. I'm still waiting for resp nurse too get back to me.. 🙄will definitely ask about ineb.. won't re-try the colomycin until news heard about rash 👍

[BreatheasyBe]

Hope this helps philips.co.uk/healthcare/pr...

[Phill1 in reply to BreatheasyBe]

thanks! Must admit I do like the look of this.. Is that what you use?

[BreatheasyBe in reply to Phill1]

Hi Phill it’s really convenient but I always travel with the nubuliser if going away for a night just incase I develop an infection as I find the taking a steady long breath in can be challenging at times. During good spells I get by with using the Ineb all summer for example when my health is generally at its best.

[Phill1 in reply to BreatheasyBe]

Hi..can you elaborate? .. What nebuliser do you use when feeling less healthy? .. I'm reading that the ineb isn't so good then?

And does that mean you take colomycin in the nebuliser and then promix in the ineb???

[BreatheasyBe in reply to Phill1]

hi Phill I take all my meds in the Ineb one at a time when I’m my usual health wise… though certainly not great. I have obstructive airflow restriction therefore don’t inhale oxygen deep into my lungs. I’m on ambulatory oxygen so maybe that would give you an indication of my struggles. On the days I have exasperations I struggle to use the Ineb due to having to take a longer breath in , than I would with the normal nebuliser. The normal nebuliser is omitting a mist that you inhaled during your normal breathing rate with a few deeper breaths for good measure. Lots of the medicine is discharged into the air around you.

With the Ineb there’s no mist as such spraying out of the machine it’s just what you inhale in that’s realised into your mouth. I definitely would give it a try as it’s saved me lots of time over the years.

A technician will come out to your home and show you how to use it. It’s not difficult just a different way of breathing to inhale it.

Hope this helps x

[Phill1 in reply to BreatheasyBe]

thanks for clarifying..& sorry to hear of your day to day struggles. Life with lung problems can be hard mentally and physically😞

Just lastly... Do you inhale promix every day?

If you are having a struggling day ...Promix won't work in a normal nebulizer ?

[BreatheasyBe in reply to Phill1]

I take promixin twice a day either Ineb or nebuliser. I use the ordinary nebuliser if I’m struggling. It’s been a great success in keeping down the frequency and severity of infections. Not needed iv antibiotics since I’ve started taking it.

[BreatheasyBe in reply to Phill1]

for clarity promixin is like a brand name of colomycin. Effectively the same drug.

[Phill1 in reply to BreatheasyBe]

👍 thanks!

spoken to Respiratory Nurse this pm & asked if I can be considered for promixin ... Not sure what the criteria would be to get this....but Fingers crossed ! 🤞🤞🤞

[Collienut]

I had a rash come up on my stomach when I started Colomycin the first time, I spoke to my GP who contacted my consultant. I had to stop the Colomycin until the rash went, wait a few days then restart it and see if the rash came up again. It didn't. I would phone your consultant and get advice directly from them. Take a photo as well in case they want to 'see it' at your next appointment. xx

I did the pipe out the window for a long time, but struggled in the winter with the fumes from all the wood burners and open fires getting into the house. I googled the nebuliser, mine was a Philips SideStream Plus and bought the attachment and filters for it instead.

[Phill1 in reply to Collienut]

thanks for replying.. I'll look up the few nebulisers that have been recommended.. Still waiting for response from nurse re rash so haven't tried the colomycin again yet🙄🤞

[Mooka]

I would definitely get advice about the rash. I would also give evergreen nebulisers a call. Pari do a chamber with a filter system but you do have to use filters which I think could work out expensive. I don’t use anything but I do mine in a bedroom that’s not used much. You do find the stuff sticks to windows, mirrors and furnishings. It maybe you could just get a mask with a filter system which would save you buying the whole nebuliser. Evergreen are really helpful though and don’t charge the vat. Just one mention the chambers for Phillips inspire are impossible to get at the moment.

[Phill1 in reply to Mooka]

thanks Mooka... There's been a few suggestions re nebs which I'll look into.. Still waiting to hear re rash so haven't tried colo again yet