Antibiotics allergies

[angie26]

I am feeling pretty miserable, it’s just one thing after another. I have copd bronchi ecstasies, emphysema and I regularly grow pseudomonas, I am also intolerant to most antibiotics. my troubles started after I had tb a few years back. 3 months ago I was using my emergency cipro but was not improving so sent a through a sputum sample that proved that the cipro was not working and I had to be admitted to hospital for IV Tazocin which they gave me for a week, inflammatory markers were down and I was sent home. As Tazocin is one of the few antibiotics I can take the short dose was thought to be the way forward, however, 10 days later pseudomonas rears it’s ugly head, inflammatory markers raised again, sent for ct, nothing remarkable!! My consultant together with microbiologist decided that I should start a course of a month of merependem highest dose 3 times a day at home. 2 weeks off and a month on Tazocin I kept saying how awful I felt and was told that it’s the infection and it’s a very strong dose, I am only 9 stone and I believe it was too much for my body to take. After 2 1/2 weeks I asked them to stop, I started itching and had red rashes all over my body, I had a sore throat couldn’t eat and nearly lost my voice I had the worst thrush ever, my head ached continually, I spent the next 2 weeks without sleep getting up 3/4 times a night to put my feet in a bucket of cold water to stop the itching, what hurts is I was asked by a nurse if I had changed my washing powder!! Also my consultant who didn’t even enquire about the effects asked me if I had ever tried merependem!!! I have no faith in my consultant and have mentioned this in the past to my GP but fell on deaf ears! I am now in the position where I can’t walk around the house without becoming extremely breathless, my consultant knows this as he made me walk the corridor to gauge how I was and my days dipped to 86 and pulse rate went well above 100 I did recover and normally my sats are 96 ish I know I have these illnesses but never have I been so out of breath. My consultant at my request is sending me for an Echocardiogram! Has anyone else had anything like this? So very sorry for the long post

[Hidden]

Hi angie26. The trouble all started when they didn't give you enough taz at the beginning. Then overloaded you with mero and taz. I often get rashes on cipro and IV. If it starts I take one antihistamine each day. Both my consultant and GP have been happy with this. For the oral thrush they should be giving you nystan drops on repeat and if it is really bad they can give you anti fungal tablets to take whilst you are on the abs and until it clears up.They don't look at the whole situation and whoever treated you first was treating your copd and forgetting your bronch. I am on my 5 day of taz atm although don't think my pseudo was the cause of the bleed in my lungs. Am supposed to go home today but as temp suddenly went up last night and this morning someyhing else may be going on. Get on their case. You can feel better than this with simple solutions.

[angie26 in reply to Hidden]

Hi little Pom thanks for speedy reply, I did have an antihistamine but it brought me out in hives! Hope you feel better soon x

[Hidden in reply to angie26]

That's funny. It's supposed to stop the hives! 🤨

[angie26 in reply to Hidden]

Yes I know but a couple of days into the hives I read the leaflet and it says can produce hives and itch and swelling and so my GP said to stop and a couple of days later hives went down , still a bit itchy here and there!

[Hidden in reply to angie26]

But not itchy from the abs then?

[angie26 in reply to Hidden]

Yes but not hives, my skin had an all over red rash and my feet were so darn itchy but no hives, I had breast cancer some years ago and was given flucoxacillin and ended up with 6 months jaundice and itched all over!

[Hidden in reply to angie26]

How horrible

[angie26 in reply to Hidden]

Xx

[Aingeful]

I too am allergic to most antibiotics. I have learnt this the hard way and once ended up in A&e after one of them. They are listed on my medical records .Its a nightmare! I have just had a course of Flucloxacillin for an infected cut and apart from feeling sick so far so good!

[angie26 in reply to Aingeful]

I’m sorry to hear you too suffer, I’m being told every time I see a consult that they are running out of options for me!

[cofdrop-UK]

My heart goes out to you angie26 as I too am a queen of allergies to medication and not just abs.

I am a little confused though. I am wondering if this is the first time you have grown pseudomonas. If so I can’t for the life of me understand why you had such a short dose of Tazcin. Normally at the first episode f pseudo they would try eradication but in the main pseudo lurks within the lungs but doesn’t cause problems unless it comes out to party, although it can show up in a sample.

You don’t say if you were in hospital when you had Meropenem. It is a very strong ab (bleach we call it) but can be very effective. It all seems like an overwhelming load not to be monitored in hospital. Was the dose 1g or 2g.

When I do my own home IVs we are always given an emergency pack with instructions on how to use them, containing ant-histomines, dissolvable steroids and 2 epipens. My team tells me not all hospitals do this and to be honest I wouldn’t do them at home without. It gives me reassurance and they are only a phone call away.

Do you also have an allergic reaction to nebulised abs used as prophylaxis or have they not tried this route. I do unfortunately.

Just a thought and it’s so simplistic it must have been thought of. As you have an allergy to fluxocilin and it looks like it’s the meropenham (both in the penicillin family), I wonder if you have had penicillins without problems in the past.

I know we bang on about it but has your consultant got a special interest in bronchiectasis, believe me it makes a huge difference.

I hope you get some answers and effective treatment which is tolerable.

Please let us know how you get on.

Love cx

[angie26 in reply to cofdrop-UK]

Thank you cofdrop, I regularly grow psdeomonas and they tell me it’s colonised? I am unfortunately intolerant of nebulised , abs too, I had merependem at home 3 times a day 2 mg horror of horrors, I could only last 2 1/2 weeks I had to ask them to stop, I was desperately ill, why did no one else see that!! Your emergency pack seems like a good idea, I was give antihistamines after the effect, much to late and they brought me out in hives I had to stop them. It’s difficult to tell if my consultant is a bronch as there is no where to check this that I can find and the nearest place for me is the royal Brompton which is a very long way for me. Now I am left feeling hopelessly breathless and totally miserable, sorry cofdrop this is not usually me but I feel so helpless, my consultant doesn’t want to see me for 3 months!!

[Suzie42 in reply to angie26]

It doesnt matter how far away Brompton is, they are not seeing any out of area patients at the hospital. I have been under them since being diagnosed in June and dont expect to go there for months, i have video consultation next April. My point is that i get brilliant back up from them, i can call or email anytime. Good luck with it all

[angie26 in reply to Suzie42]

Yes I rather thought that might be the case, nice to know they take care of you x

[cofdrop-UK]

I know it’s not the normal you. You are overwhelmed and feeling unsupported whilst feeling poorly. Anyone would feel miserable and thee is no need to apologise - it is totally understandable.

You might want to telephone your consultant’s secretary and explain and see if your appointment can be expedited, or better still if you have their email or the team who deal with your IVs.

If you wish you could pm me with your cons name and hospital and I can try and see for you. Some hospitals are more transparent than others. Also an area you can get to easier. Brompton don’t have the monopoly (although excellent) on bronch specialists.

We don’t take the antihistamines unless we start to have problems.

I know that feeling of running out of options. It’s a horrid feeling. Mero used to work well on my pseudo (FEVs went up by 10%) but not now. It could work at some time in the future. Aztreonam has worked better but I’m not sure it’s available for BE everywhere.

Your team need to know if you feel so unwell. Personally I would be reluctant to struggle on for 3 months and would get in touch with them.

Love and hugs

Cx

[angie26 in reply to cofdrop-UK]

Thanks I felt so bad over the weekend and today I have spoken to the hospital at home team who are going to speak with my go and consultant xx

[cofdrop-UK in reply to angie26]

So relieved to hear this angie. I hope you nw get the help you need. Please let us know how you get on.

Love cx

[angie26 in reply to cofdrop-UK]

I will thank you x

[HungryHufflepuff]

I hope things start to improve for you soon 🐑

[angie26 in reply to HungryHufflepuff]

Thank you x

[Alberta56]

Best wishes- I hope things start to improve soon. There are some very knowledgeable people on this site whose advice is always worth listening to. Alberta xx

[angie26 in reply to Alberta56]

Thank you x

[Patk1]

Perhaps test for covid

[Izb1]

How rotten for you Angie, I do hope you get some help soon, best of luck x