HELP! CF MEDICATION

[Jamesmum]

Hi my 28 year old son has CF, Bronchiectasis, Aspergillus and Pseudomonas . He is concerned that he becoming immune to his medication. Can anyone offer any help or support please.

Thank you all x

[sassy59]

Hello Jamesmum sorry to read of your sons problems. If he feels his medication isn’t working as well as it once did then he should speak with his medical professionals.

I hope he can get things sorted out very soon. Wishing you both well. Xxxx

[Jamesmum in reply to sassy59]

You are very kind thank you...we are going o Tuesday, so I will of have a word

xx

[cofdrop-UK]

Hi Jamesmum and a very warm welcome to you. I am hoping James has a very proactive cf consultant and attends an adult CF unit.

So sorry he has aspergillus and pseudo. Many of our members with non cf bronchiectasis harbour pseudo and some also aspergillus. You don't say what medication James is on. There will, I am sure be alternative treatment available as your dear son has cf, as there are more drugs which have been approved for his condition than for folks with non cf bronchiectasis. That is not to say they don't use them for NCFBE patients ever, but they have not been researched specifically for us but have for CF. Hope that makes sense - confuse myself sometimes.

Please let us know how you get on on Tuesday. Hoping your son gets some answers and a good treatment plan.

Love cx

[Jamesmum in reply to cofdrop-UK]

Thank you so much for taking time to respond...the only positive is that James is pancreatic sufficient, so armed with all of our research etc...we hope to get some answers. We have a very good team but as with most illnesses (understandably) research is for the majority, however, James falls into a less than 10% category.

Stay well everybody.

Fingers crossed and thanks again xxx

[cofdrop-UK in reply to Jamesmum]

A mixed bag then J. Good to hear James is pancreatic sufficient but not so great about the 10%. Is James a member of a CF group? I am sure there will be people with cf in the same position as your Son.

Good luck for Tuesday. Will be thinking of you both.

cx

[Jamesmum in reply to cofdrop-UK]

Very much appreciated thank you for your time and good wishes xx

[Hidden]

Hi Jamesmum. I have bronchiectasis, aspergillosis & pseudomonas. I see an Adult CF/bronchiectasis consultant at RBH. Does James have allergic broncho-pulmonary aspergillosis, or an invasive type? What medication is he on and why do you think he's becoming immune? As far as I'm aware, it's the bugs/fungi which can sometimes become resistant, not the person. I nebulise colomycin for the pseudomonas and apparently this rarely leads to resistance. The CF Trust has an adult forum, they might know more.

[Jamesmum]

Brilliant thank you so much for your support it is very much appreciated. Can I enquire who you see at RBH please...we find it difficult to see the same doctor twice there xx

[Hidden in reply to Jamesmum]

Yes of course. I'll send you a message as we're not allowed to put names on the public forum

[Jamesmum]

Oh thank you ...I am so sorry I have only just joined and I am not familiar with the protocol. I don't want to get you into trouble. What do you need fro me n order to send a private message...my telephone number??

xx

[Jamesmum]

Sorry just to let you all know...James is pancreatic sufficient and he takes the following medecines:

Azithroymcin

Calcichew

Promixin & Combivent (neb)

Dornase (neb)

Ipratroprium Bromide

Predisolone

Itraconozole

Omeprazole

And...they are talking about changing his promixin for tobromicin.

Any comments would be greatly appreciated. You are all so fantastic...keep positive at all times..never let this horrible disease control you...you must control it!!

Good luck everybody xxx

[Hidden in reply to Jamesmum]

Oh right, I'm familiar with those except dornase, which doesn't help people with non-cf bronchiectasis. Has James been having problems with the pseudomonas? Just wondered if that's why they're thinking of swapping the promixin to tobramycin. I seem to be ok on promixin so far (which as you probably know is a brand name for colomycin.) I know a lot of cystics end up going onto tobramycin. Those 2 guys I sent you the names of, one is particularly interested in the management of pseudomonas, and the other is researching aspergillosis, so they might make a good team for James.

[Jamesmum]

I can't thank you enough for your help. I will let you know how it all goes, I am so grateful to you xxx

[Ergendl]

Good luck for today, Jamesmum. Hope you get the answers and the treatment your son needs to improve.

[Jamesmum]

How lovely thank you for thinking of us. We have an appt today and another tomorrow so i will let you know.

Take care xx