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Has anyone else had bad side effects?

Woofly profile image
24 Replies

I have quite severe COPD, about a month ago I was given CARBOCISTEINE 350mg to take 2 three times a day. A month later. I noticed I was even MORE out of breathe thank normal ie breathless just going to the bathroom, I also started having dreadful itching so obviously no sleep! My husband suddenly mentioned the new tablets! I said right, I am not taking anymore. I stopped yesterday.

The thing is I am abroad for the next 2 months, so cannot go to my GP. Just wondered if anyone else here has suffered similar symptoms? Have to say I am a bit worried!

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Woofly profile image
Woofly
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24 Replies
soppysokes profile image
soppysokes

Sorry can’t offer much help except to say we were advised 2x3times daily when coughing and mucus is difficult to get up.when improved reduce down to 3 or 4 a day since they can apparently actually increase mucus production when in fact at times that’s not what is wanted. Also to drink a lot of water whilst taking them to help thin the stuff.

Oshgosh profile image
Oshgosh

I find carbocysteine is a godsend.

I take it plenty of water.

Also. I keep my fluid intake up as it helps thin the mucus

Caspiana profile image
Caspiana

Hello Woofly .

Was in those for years with no side effects. But having said that you are not me and everyone is different. If you stop taking them and side effects cease, then in all likelihood it was the tablets. Take good care.

Cas xx 🙋

Carbonatite is prescribed to help shift the gunge from your chest and I find it strange that you didn't even mention whether it worked or not. All drugs have side effects and it's usual to weigh those against the benefits. In my case I found that reducing the dose to one three times a day gave me the benefit with acceptable side effects. I haven't bothered telling my doctor but I'd advise you to give them a ring to confirm it's ok. Take 'em or leave 'em it's nothing to worry about, the worst that can happen is that you might miss out on the benefit that carbonatite has to offer.

Redrum46 profile image
Redrum46

I had a bad time with lots of. Coughing and and very sticky mucus Carbocisteine helped thin it and I would not b with out them for that reason

garshe profile image
garshe

I take them daily and have done for years with no side effects. But everyone is different x Sheila

mrblue12 profile image
mrblue12

Oh my god yes! Carbocisteine made me come out in tiny clear blisters on my arms, armpits and truck. I also had small blood blisters. A few days later I started to itch, and I've been itching since. It's started to get better, but it still hasn't gone away.

I'm waiting for an appointment with an immunologist because I seem to be reacting to everything I eat whether that be food or medicine. I can't eat anything which is high in histamine or my systems get worse again.

I think I have some sort of mast cell activation syndrome, or I've acquired some sort of sensitivity to histamine.

Unfortunately, the waiting time to see an immunologist is about 14 weeks. So, I won't see one until well into the new year now.

Spacecat1 profile image
Spacecat1

I have been on carbestine over 2 years and I dont have a cough I do all the exercise like the huff and with the tablets nothing comes up. Not even when I have a chest infection do I have any phelgm. I dont feel as though they do anything seeing my gp in 2 weeks to ask if I can stop taking them cannot see the point in taking them if after 2 years I still dont cough or bring anything. Maybe take some with you to be on safe side but speak to your GP first before stopping any medication. I will carry on taking them until I see my GP. Take care

I have bronchiectasis not copd. I was prescribed carbo many years ago but it did nothing for me except to make me feel sick and itchy so I ditched it. There are other ways of thinning and expelling mucus such as nebulising saline and working hard with a device which vibrates the airways and loosens the mucus so that breathing tecniques can be used to get rid of it. As with all of these drugs, a godsend for some and a nightmare for others.

wheezyof profile image
wheezyof

It made me projectile vomit. Not a pretty sight.

barbs47 profile image
barbs47

I can’t take carbocisteine they make me feel so ill and week. My doctor couldn’t see anything in the capsules that would make me feel so ill. She came to the conclusion that it could be something in the actual capsules. I stopped taking them. I was given them again when I was in hospital and started going downhill again so stopped taking them. Sometime months later I had another chest infection so my doctor prescribed the liquid form of carbocisteine we both believed I would be ok with this. Unfortunately I had the same reaction it makes me so ill I can’t move. I have not taken it since. I have to say I have very bad reactions to many drugs. Hope this helps Barbs x

Geoff592 profile image
Geoff592

hi Woofly

Carbocysteine made my guts bleed after 6 days of taking them. I found that NAC (N Acetyl Cysteine) from the health shops was a better alternative. Does the same job without the side-effects.

Jaybird19 profile image
Jaybird19 in reply toGeoff592

I used to work in microbiology lab and we used NACcysteine solution to digest the sputum specimens to liquid before culturing a measured amount

. I have also had it mentioned to me by the local health shop .

catpoose1 profile image
catpoose1 in reply toJaybird19

I had LVRS this July and I was given that in hospital after I told them that I couldn't tolerate carbocysteine. I now get it on prescription.

astragal profile image
astragal

Good morning woofly

I have carbocisteine syrup as I have trouble swallowing tablets. 10ml 3 times a day. It did make a significant difference as when I had pneumonia in January I was choking on mucus blocking airways.

I do have very itchy skin and reflux from it, but I am afraid to stop it as for me, the thick mucus was worse.

As others said, there is various strengths of saline which can be used in a nebuliser.

Also there are supplements NAC, quercetin and bromelain which may help.

But before taking any supplements I would consult your doctor and research fully to ensure they are suitable for you, safe to use with your conditions and won’t interfere with other medication.

I hope you find something that works for you.

Best wishes

Kristicats profile image
Kristicats

Have you tried the NAC you can buy online . Ive used the Troo Healthcare ones 600mg twice daily for over a year and they keep my chest clear of sputum. I couldn’t get on with the prescribed ones so I opted for a more natural supplement .

Margot13 profile image
Margot13

Hi

I was prescribed Carbocistine and after taking it a month I had burning, and swelling on my left side of my face, so I stopped them and the condition disappeared.

I was given Nac six years ago but three years the consultant stopped them saying they found no benefit to help the IPF, but I found that while I was taking them the cough and phlegm were less, I requested it again but I was refused them but now after your post I will try to buy them again and hope the Nac will help me again.

Thanks to all for all the interesting information.

Margot

san37 profile image
san37

Hi I have been on carbocisteine 350 for 4 months now and take 2 tabs 3 times daily, and haven’t noticed any major side affects but when I get hot I do get itchy on legs which I moisturise daily after soaking feet in Epsom salts to get rid of toxins.

I am on spriva respimat,symnicort 400 and ventolin, montekulast etc, and taking so many puffs through the day getting worrying with difficulties of not being able to do anything. Two month ago my consultant put me on an old medication called BAMBUTEROL take 2 at night and keeps airways open upto 24hrs, these have made a difference in being more manageable. (Also the sodium chloride capsules for Nebulisers helps relieve too.

I'm supposed to take 2 twice a day, and I did for years. I had n problems with it, but it didn't really help me either.

Frankylad profile image
Frankylad

Hello Woofly. My wife had a bad reaction to the capsules, it was the yellow colour in the capsule that was the problem, it was sunset yellow or E110. She eventually turned to a herbal alternative, Marshmallow Root capsules. For her they were fantastic, but like all medication or herbal remedies, they work for some, but not others.

Woofly profile image
Woofly

Thank you all for your comments, I really appreciate them, it is comforting to know other people have had a bad reaction to this drug, I honestly felt I was on my way out! I am feeling a little better, at least the itching has abated thank goodness!

Keep breathing folks!

ssafa profile image
ssafa

I also take carbocisteine 2 /3times a day it certainly works for me and saves a lot of panic when you are trying to clear your lungs and the gung sticks half way. I now take them everyday.

Lancsrc12 profile image
Lancsrc12

Hi Woofly, I’ve only just seen your post -I have COPD with a chronic cough which was very productive. Saw a consultant a few weeks ago, he asked the amount of phlegm produced and prescribed Carbocisteine to thin the mucus-which I didn’t think I had a problem with anyway, tho I did cough a lot. After a couple of weeks the cough had almost disappeared and phlegm was practically non-existent when I did rarely cough. Found myself forcing coughing cos couldn’t believe my chest was clear-and I don’t believe it is, as I’ve increased breathlessness, two lots of prednisolone and antibiotics since using the carbo, I was so bad Sunday that I had to get the out of hours to source a prescription for steroids etc. I gave up the Carbocisteine after a couple of weeks, but used to take the NAC for a long time-never affected me badly-think it did help to get up the phlegm. I shall go back on it. Must say when I first read all the posts praising the Carbocisteine I wondered what was wrong with me! Hope you’re feeling better after your holiday.

Woofly profile image
Woofly

Well I was a bit better, but had to go o the steroids again👹 there is no way I would go back on Carbocisteine!! What a situation we are all in eh?

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