Any ideas please..........

[cofdrop-UK]

As some of you may remember I am intolerant to so many drugs,

including many abs. Also colonised with HI and prior to going on

nebbed Tobramycin (and that isn't without probs, although the SOB is

spasmodic and not as dramatic as the nebbed colomycin which ended

in 5*) started with an infection 5-7 days following every course of high

lingthy dose of abs, which the spec was sensitive to. With every course

of abs I have hurrendous stomach pain and have to go to the loo 5 or 6

times with the runs. Sorry to be graphic.

When I first tried Azith a long time ago, shortly after taking 1 tablet I

had excrutiating stomach cramps and the rest. Tried on a few

occasions and it was always the same.

After having the nebbed Tobra I asked my con if he thought as the GI

had improved a little with not having a direct hit with abs should I try

Azith again. He wanted me to try them but 1 twice a week - to try and

control my asthma better as he stated he had never examined me but

what I had a wheeze. Isn't that amazing for such a busy man who

must listen to hundreds of chests to know that - he wasn't looking at

his notes.

Anyway I have had 6 in all. After the first one I had no effects at all

and thought it a miracle, maybe I could have them after all. The next

day it all kicked off. Thought it might settle so battled on. Well now it

is just awful. I have reflux and heartburn pretty much all the time and

some of the time pains and runs and stomach ache. Thing is my chest

and sob did improve. Isn't it a b*****. When my matron came last

week she noted my temp was up and asked if I wanted her to take a

sample. My gunk is just my usual crap pale green and I said no 'cos

my chest felt ok. Temp went down. Tuesday temp went up again and

my chest doesn't feel great. It has been spiking from low grade high to

normal. Gunk not bad colour. I am really not sure if the temp are due

to the GI probs. I feel as though the whole of my GI tract is

inflammed.

Decided not to take my Azith today and concerned chest will now kick

off and I will have to go back on abs. Concerned because I don't feel

my GI can tolerate abs in it's present state.

Doesn't this stuff always happen when you have commitments. My

sister's birthday tomorrow and we are going for a meal (oh the

thought), with the little one and then sis, my daughter and I are going

to see Alfie Boe in the open air. Next week we have a spa day with a

stay over in the hotel and on the Tuesday The Railway Children at the

railway museum in York. Worried I will miss out again!

Next week I have to see the GI dietician, who was going to liaise with

another gi dietician and a respiratory dietician - so see what she comes

up with. After that I am to collect my needles and shrynges for my

next bout of Tobra which starts a week Sunday. I will speak to the

nurses whilst there.

So what to do if lungs kick off and I have to take oral abs. I guess I

will have no choice. Feel between a rock and a hard place.

Sorry to ramble on. Any ideas welcome but if not it is just good to get

it out to folks who understand what I am talking about. It's a lonely

place sometimes.

cx

[freefaller]

Thankfully have never taken Azith and not had such bad problems with antibiotics. So, sorry can't help. You are right things like this always kick off when you have a much looked forward to event coming off. I do hope things settle down for you and you are able to enjoy everything that is coming up for you. Sounds wonderful. Love the Railway Museum in York. Went there last October - my other half hails from Yorkshire so we had a big family get together there staying at a lovely cottage in Helmsley with a view of the castle from the back garden. The weather was brilliant and we all had a wonderful time. Do you live in Yorkshire? If you do I think you are very lucky.

All the best

Love

Sian

xxxx

[cofdrop-UK in reply to freefaller]

Thank you Sian. Glad you enjoyed your break in York. My sister lives in York and I spend quite a bit of time there. Helmsley is a pretty place. Yes the Railway Museum is good. Looking forward (this crap permitting) to seeing The Railway Children as the seating is either side of the track and an actual steam train comes through the tunnel. Think little Freya will love it (aged 4).

Thank you for your good wishes.

cx

[freefaller in reply to cofdrop-UK]

Oh Wow! Do hope everything gets better and you can get to see it. It will be absolutely amazing!

Sending healing wishes to you over the ether.

Sian

xoxoxoxoxo

[Toci]

Hi cof, I am feeling for you. I can offer no advice whatsoever, just sending warm wishes. xx

[cofdrop-UK in reply to Toci]

Still means a lot to me Toci.

cx

[Billiejean_2]

My suggestion would be to take a course of whichever oral ab best hits your HI. If you start immediately, you have some chance of getting to your planned outings. If you do nothing, it's likely that you'll just get worse and miss out. Sometimes a short-term measure is all you can do. I know it won't in any way be a solution but it might just make you well enough to get out for the dinner etc. Hope you don't miss out.

[peege]

Oh my dear Cofdrop. I've been racking my brain but I know any solution I can think of you must know about and/or tried already.

Have you ever tried the help line? On the off chance they have any ideas to get you through the next few days.

I really feel for you and cannot imagine how awful this can be for you.

I do take my Azithromycin 500mg as a cure: 3 consecutive days on followed by 7 consecutive days off (then the same cycle twice so 30 days in all). day 3 used to be horrendous with the gut reaction so I understand a 1/4 of what it does to you.

I'm thinking antispasmodic?

I've not come across anyone on here who takes it in the same way.

You poor love, I so wish I could offer something helpful, just tea & sympathy & a virtual hug.

Thinking of you xxxxx Pen

Just a thought,,,,the first time I took it was 19 Dec 2010 & it was for 5 consecutive days (oh my goodness, always 500mgs) the GP said to take it and it would get me through Christmas etc and beyond because it would remain in my system for about another 10 days

[cofdrop-UK]

Thank you so much Billiejean. You are right I have started the abs. - stomach not pleased.

Pen sweetheart so very sweet of you to try and think of something. I don't really think I kind of expected anyone to come up with something which, as you say, I have not already tried. The thing is it is so helpful to write it down (get it off your chest, so to speak to folks who really understand).

I've not heard of anyone else taking Azith in the way you have to take them either.

I am going to put a little update on a new thread.

Thank you so much to my friends who have replied - it helps more than you know.

love cx