Need advice regarding Zithromax (azithromycin)

[ghostrider]

Hey all

Just a quick background about me.

I am 34 yrs old and male. I was diagnosed with ITP when I was 17.

When I was 32 I had to receive medical treatment for my ITP. This was the first time they actually had to treat it as usually my platelet count would recover over time by itself however this time it dipped below 10. Now during all the blood test they discovered I had low IGG counts. 

I was referred to a Immunologist and they diagnosed me with CVID. 

Over the next 2 years I have been going for 6 month check ups and my IGG counts have been getting lower. Recently they have put me on Zithromax (azithromycin). I take 500mg every Monday, Wednesday and Friday. 

Now they told me Zithromax was a antibiotic but I would need to take a ECG before taking it. They didn't tell me why. I will be honest this raised alarm bells. I did my own research and was very disturbed what I found. The only side effects I was told about is that it might cause slight diarrhoea. Well a lot of people suffer from a hell of a lot worse side effects.

The FDA even issued a warning in 2013 that it can cause fatal heart rhythm and there are a number of lawsuits currently against the makers. 

From my research its seems that this drug is given usually to patients who have an existing infections or with those with CVID, where they have a long history of recurring infections. 

This is were I have become even more concerned.

Until I was 32 I very rarely got ill. Other then a case of chicken pox when I was a child, 1 case of bronchitis when I was 19 which cleared up very quickly, shingles when I was a teenager but it was very mild and an ear effect I pick up on holiday one year I can not remember any other time where a doctor needed to prescribe me antibiotics. 

When I was 32 (a couple of years ago) I developed a cough. Over a 6 month period I constantly went to the doctors but was told it was "just a virus" even thou I was losing weight because I was coughing so hard that I would vomit, I was bringing up white phlegm and a white foam substance, they still kept telling me it was just a virus. It wasn't until I become so sick of it I refused to leave the doctors surgery that they agreed they would do a sputum test and lo and behold I had a LTRI. Over the next 12 months I had 4 instances where they gave me antibiotics for the same cough. It would go away and then come back.

Now if they had treated me a lot earlier I doubt I would have the other infections. 

However in last 16 months I have not had any infections of any kind. 

I mean both of my kids had chickenpox not so long ago and I was pretty sure I would end up getting it or shingles with having to cover both of them in calamine lotion everyday to sooth the itching but nothing. 

So with that I do not understand why they have put me on drug which has some very serious side effects, a drug which it seems is only usually given to patients which are still getting infections even when they are on monthly IVIG.

I have spoken to many other people on various forums who suffer from CVID and many people have expressed surprised that I have suffered so few infections. I do consider myself very lucky. 

So I ask, should somebody who is currently not on IVIG, who is not suffering from any recurring infections, who does not have a long history of recurring infections be put on a potentially dangerous drug and one which has so many awful sides effects just as a precaution?  

 

[glowing]

Hi ghostrider.
I'm just welcoming you to the forum to let you know that our boss, Sam, will no doubt be the one to help you in some way. Unfortunately I am unable to, but I can certainly understand your predicament.

Glo

[s162216]

Hi ghostrider and welcome to the forum,

Whilst we can't give medical advice on here, I do have a pharmacology degree and have CVID myself. I started on IVIG right after being very unexpectedly diagnosed as they were concerned about my very low (<3 g/L) IgG levels and the number of infections I would get (~3-4 a year which is apparently more than average) even though I didn't consider myself to get very many. I now only tend to get 1-2 very mild upper respiratory tract infections per year which is a massive improvement - sometimes I almost feel like a bit of a "fraud" running this forum!

The reason that you have to have an ECG when taking azithromycin (brand name Zithromax) is because it can potentially cause prolonged QT interval and other arthythmias. Obviously they don't want to put somebody on it who already has any cardiac rhythm defects as it could potentate the existing problem, but for somebody who does not have an existing problem its unlikely that there will be a problem.

To say its a potentially dangerous drug though is perhaps a bit of an overstatement as there is no such thing as a perfect drug, if you look at the side effects listed on paracetamol for instance there are some very nasty ones if its misued (it actually being the number one cause of acute liver failure - even just accidentally taking a couple of extra tablets can start to cause problems). Any drug can cause side effects, but for many of them the actual chance of them causing serious side effects listed is low.

Have you raised your concerns with your consultant? Talk with them and ask why they feel prescribing prophylactic azithromycin is justified for you, as obviously patients vary massively so other alternatives may be unsuitable. They will have had to have considered the small risk of the azithromycin against what could happen if you were to have more infections and develop for instance bronchiectasis. As your IgG levels are falling then you're more likely to develop infections, which is probably why they've started you on antibiotic prophylaxis, the idea being to prevent the infections before they cause any more problems.

I can understand why you're concerned, and hope you manage to get to a satisfying conclusion with this, but talk with your consultant.

Thanks,

Sam (Admin)