Hello,
I've been ebbing colomycin for a couple of weeks now and overtime I have it I feel really really nauseous, to the point of retching occasionally. Has anyone else suffered from this? I've researched the side effects but this doesn't seem to be listed but it really makes me suffer and not want to have it! TIA
I'm taking it at the moment too and I am quite breathless and have a lot of pain in my chest. I'm not sure how much of this is the condition and how much the medication ? I don't think it's causing nausea but because I'm taking Cipro as well right now, I've upped my dose of Omeprazole. But if you are sure that your nausea is being caused by the Colomycin, you should have a chat with your doctor.
I'm on cipro too which is playing havoc with my joints and skin 😓 Definitely the colomycin as its almost straight after the first 'puff' and last for about 20 mins after I've finished nebbing. Thankfully I'm not breathless, that must be awful for you. The gp is very noncommittal with anything the cons has put me on!
Doctors are always unwilling to acknowledge that patients actually do suffer from side effects, even if they are well documented and known to be common. This is my third full week on Cipro, as I'd been on a two week course just before the pseudomonas apoeared. Now, I think my legs are beginning to ache a bit but I'm trying to ignore it unless it becomes very painful, in which case I'd probably have to stop. But it's a catch 22 situation here and if I cant't tolerate the treatment I'll have to go into hospital for 14 days IVs. So I'm trying to stick it out for the month I've been asked to take it.
How about you ? How long are you on this treatment and are you also being treated for pseudomonas ? Good to have someone to share the misery with. 
I've been on colomycin nebulizer for about ten years because of pseudomonas morning and night I'm know getting leg stiffness I've stopped it to see what happens
Kiki, I forgot to ask you how much Colo you are taking. I take 2 of the 1.000000 units twice daily. That's 4, 000000 units per day.
I'm on 1mu twice a day so 2mu in total with Cipro at 750mg twice per day. It's supposed to be a six week course and I'm three weeks in. Had a lot of swelling in both ankles after a week and spoke with resp nurse who spoke to cons and then came back to me. I was told to see how it goes and take nurofen, which is actually contraindicated for Cipro!, and go back to GP if symptoms continue. I've dealt with it for 2 more weeks but I'm in so much pain today.
Cipro has been stopped now but I have to continue with Colo for the next three weeks and then see cons at my routine appt in Nov.
I can only offer you some sympathy, it must be awful. Hang on in there. Perhaps Cofdrop will be along soon. I believe she's suffered this way.
Wishing you well, Peege
Hi Kiki
I was fine at assessment with nebbed Colomycin and my reactions came over a couple of weeks. I did not have the same effects as you seem to be having. Just because it is not listed doesn't mean it is not caused by the drug. Agree with Billiejean you really need to check this over with your doc, probably your consultant. Hope it gets sorted out for you soon.
HI Billiejean
I would keep a close eye on the breathlessness hun - please don't let it get out of hand. Over the 2 weeks of nebbing Colomycin I gradually became more breathless until I could not string a sentence together. My GP called an ambulance from listening to me over the 'phone. I was silly as they told me to call 999 if I had this reaction but I couldn't get into the next room to use my neb and so just puffed on my b'dilator all night. Stopped even being scared just took my chances. They kept me in 5*. I know what you mean though not knowing sometimes if it's the condition, other drugs or this particular one. It may not be the Col but please take care with the SOB.
I'm on my fourth cycle of 28 days nebbed Tobramycin and I have intermitent SOB but struggle when it's there. I also have a fluctuating low grade raised temp. Con last time said he thought it was an ab induced elevation in temp. Bloody nuisance 'cos as you say you are never sure whats what. Should take my own advice and contact docs. Effects are limiting what I do quite a lot but not having to take so many orals has improved the IBS. Sometimes you feel you can't win.
Sorry Kiki this has turned out to be a me me me. Trying to illustrate I think how we struggle far too long with these side effects.
Let us know how you get on. I hope it is not to do with the Col and improves but if not please seek help.
love cx
Thanks Cofdrop! It's really helpful to hear what has happened with you and others, as you say we struggle on with the side effects as we want so much to be 'better' and forget that sometimes the side effects are damaging. I'm putting up with swollen ankle joints and sore tendons (with the odd knee and elbow pain thrown in!) as I really don't want to have IV again unless absolutely necessary - it's not easy being admitted when you have two young children 😒. I also have a low grade temp about 50% of the time but who knows what it is! I've been told that if it goes over 38.2 (v specific, huh) to go into go or A&E if out of hours.....
How are you getting on with the Tobra? Any side effects from that?
Hi, I talked about the Tobra probs with Billiejean above. Sorry I realise it's a bit longwinded.
Very difficult for you with 2 young children. I wasn't nebbing when my daughter was little but found the physio regime wasn't easy, so I appreciate just how difficult it must be for you. What does you con say about the constant low grade temp. It's very difficult to figure out if you have an infection if it is ab induced. I agree so much with your comments and can understand totally you not wanting to go back on IVs. Can you do home IVs in your are?
love cx
I don't know if home IVs are possible here. I'm quite new to all this as only had diagnosis in May (but have been through a lot since!). I think I will prob have to go to GP soon about the Cipro causing so much pain so I will prob mention the Colo nausea then too.
Not seeing cons again until mid Nov so I will check with her then but my sputum is still a pale green so could be that the cipro/Colo are just keeping it at bay 😒
Colomycin makes me feel nauseous too and it causes fluid retention in wrists knees lower back giving me stiffness and pain in joints, and muscle weakness, and it makes me sweat.No side effects are listed that I can find other than Bronchospasm.I took it for 2 years and I suffered so much I now only take it when my sputum gets thicker and darker in colour then I neb it for at least a week. The rest of the time I neb saline and that seems to control the Pseudomonas .
That's really interesting Fern as I had put the joint pain and swelling down to the Cipro.. Hadn't thought that it could be Colo. I'm in so much pain today in my ankles that I can barely walk 😫 Speaking to GP later so I'll see what he says. Thanks for the reply xx
If the pains at the back of your ankles, in your Achilles, you need to stop the ciprofloxacin. If your Achilles tear that's a serious injury. I had great pain there after a lot of cipro, could hardly walk, Dr said stop immediately before they tear, it took months to get back to normal. I researched this and many who've had repeat courses of cipro have said the same. Robin
Kiki sorry I concentrated on the nebbed meds but Robin is so right. I and I know of others cannot take Cipro because it can cause tendonitis and I would suggest you need medical advice.
Good luck and let us know how you get on.
love cx
I took it for 10 months last year Fern and was constantly sob, aching and feeling wretched. Like you, I'm prepared to use it for short periods but will never go on it longterm again.
Cofdrop and Robin, you are so right about Cipro but again, unless you categorically state that you have pain in the Achilles Tendon, doctors tend to make little of complaints about leg or joint pain.
C, I am keeping a close eye on the sob. On the advice of the consultant, I'm nebbing Ventolin twice a day, before taking the Colo. it has helped a bit but I'm sob on the stairs and even small exertion like getting in and out of the car etc. What's hardest is at night, when my chest is so tight it's really hard to get enough air into my lungs. This is despite my best efforts at breathing correctly etc. It's all a big chore but I'm trying to keep it up for a month to eradicate the pseudomonas.
When you say 'cycle' of nebbed Toby, do you mean you go on and off it for set periods ? This sounds much more sensible then taking it all the time.
Yes it's 28 days on and 28 days off. I am getting SOB which is a struggle but the effects are not as dramatic for me as they were with Col but I am not sure if Tobra is the answer for me. Sadly there isn't much else I can tolerate either. Maybe there will be something in the pipeline with the trials on inhaled abs over the next 5 years.
Hope the colo kick the pseudo into touch. Normally you would, as your con has stated, nebulise a bronchodilator, followed by saline if you normally neb it, physio then your nebbed ab.
Fingers crossed for you.
cx
Thanks everyone. GP has advised to stop the Cipro and got in touch with resp clinic. Resp nurse has just called back to say to just stay on Colo for the remaining time and see how I go!!! If I spike a fever, I can get in touch with the GP or call Resp nurse back though 😳.
Got a routine appt in Nov for review so we'll see what happens.
I'll have to put up with nausea from the Colo as I have a feeling that the pseudo is not gone and now I have nothing else to back it up......
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