Which Antibiotic?: With all the different kinds... - CLL Support

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Which Antibiotic?

GrapeGrower1 profile image
11 Replies

With all the different kinds of infections we all get, how do we get to be more versed on the many antibiotics that can be taken including the pluses and minuses? One of the problems I had was joint inflamation. I had no idea that was possible from an antibiotic. The most recent was a very presistent yeast infection, which until recently I also didn't even know men could get. So does anyone know of a good source of information that could give me a general overview of antibiotics.

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AdrianUK profile image
AdrianUK

If you want specific information about a specific antibiotic a doctor is recommending you should look at either the patient information leaflet or the Summary of Product Characteristics (the latter is aimed at doctors but well informed patients can make sense of it).

I am not sure where in the world you are from (helps to addd your country to your name or profile (e.g. as I have done with Adrian UK). But if you are anywhere in Europe then the UK website which hosts all SPCs is probably a good place to get the information: medicines.org.uk/emc

The CDC have some guidelines on antibiotic use which are of interest, though of course where they talk about watchful waiting that may not be appropriate at times for us see cdc.gov/antibiotic-use/comm....

Couple of other general points from my own experience and have worked through with my GPs over the years so far (so these may not apply to everyone else and it is important to explore with your own doctors what is appropriate for you).

1. Use broad spectrum (ie. to cover a range of bugs) rather than too narrow since you certainly don't want to wait for a swab result before treatment). So for example my GP prefers to give me CO-AMOXICLAV for throat or chest infections rather than a penicillin as the addition of clavulinic acid means that you cover more bugs. Depending on where the infection is your doctor may have a different idea, but certainly asking if it is broad spectrum or specific is a good question to ask.

2. Have a low threshold for treating since an infection can get worse and travel (so a throat infection might not seem like a big deal but if it moves to the lungs it an become pneumonia

3. Consider treating for longer than with a normal patient. I had a string of recurrent throat infections which kept coming back and each one didn't respond to the firstline treatment but did respond to second line. This led us to realise it was probably the SAME bug...so we treated for two weeks not the usual one. And for months I didn't have another thoat infection. Where a healthy person's immune system can finish off the last few bugs maybe we can't, so longer treatment is sometimes indicated to have greater confidence that it has gone. Similarly for thrush./yeast I had a recurrent problem with this until we decided to give a whole MONTH of fluconazole (which is actually what the SPC recommends) and guess what? Despite taking antibiotics several times since then I haven't had a recurrence since.

4. Understand that antibiotics generally work quickly. If you are on an antibiotic you can reasonably expect a really fast response or at least for that response to BEGIN rapidly. So for example I had breathlessness, a temperature and runs of tachycardia as seen on my apple watch from a chest infection ten days ago. With the very first dose my temperature began to drop and was normal. The increased heart rate gradually reduced over the next few days tho the breathlessness took a bit longer. Basically if you have no improvement at all within a couple of days go back and have another antibiotic added or switched.

5. If you have regular infections discuss with your doctors whether it is time for ongoing prophylactic antibiotics (I currently take azithromycin, cotrimoxazole and acyclovir) If you are on prophylactic antibiotics you may still need treatment as they do not prevent all infections nor are they at treatment doses. If you still get regular infections despite prophylactic antibiotics, it may be time to consider IVIG.

6. Look at other methods to reduce your risk of infections: Hand washing (see nhs.uk/Video/Pages/how-to-w... NOT using hot air driers to dry your hands (they contaminate...), avoiding people who are sick, using a clean towel each day, careful food hygiene, etc etc)

7. Be aware of the times that you need to go STRAIGHT to ER/ A and E and say "I am a patient with blood cancer and I am immune compromised. I have the following symptoms and feel we need to rule out sepsis". You might not be the sort of person to want to make a fuss. But even before treatment we are at increased risk of sepsis and sometimes the symptoms we experience from an infection might be less prominent than you might expect so we can in fact sometimes be sicker than we look if that makes sense?

So for me the times that it can be reasonable to go to an A and E include (but not exclusively) and note that only ONE of these need be the case:

---- any time a temperature goes above 38C or 100.4F

----fast heart rate over 90 bpm even when you are sitting down.

-----`any time you become unable to complete a sentence due to breathlessness

----fast breathing rate

----rigours / tremors

----any time your mobility becomes suddenly or significantly reduced due

---any time you feel like you are becoming more "muddle headed"

---any time you have a sense of impending doom or just feel so dreadful but you can't put your finger on why "I feel like I might die...."

---Any other symptoms potentially of infection that concern you, especially if you can't get quick access to a GP appointment (do NOT sit on an infection over a weekend in the hope it will probably get better...what if it DOESN'T?)

For more information on sepsis see sepsistrust.org/wp-content/...

mrsjsmith profile image
mrsjsmith in reply toAdrianUK

Just a quick point Adrian,

If you click onto the avatar before you reply you will often see where the person is from. Grapegrower is in the US.

Colette

AdrianUK profile image
AdrianUK in reply tomrsjsmith

That comment really made me scratch my head Colette because I did click on their avatar...anyway suddenly twigged you might be talking about on the desktop rather than an app and sure enough. You can find someone’s country that way but only if you aren’t using the app...wish they’d make the app features match the desktop more! I assumed the UK or Europe because he’d spoken about a GP

In previous posts which I’ve noticed

Americans often don’t (talking about primary care instead)...feels like we need to be a detective sometimes!

mrsjsmith profile image
mrsjsmith in reply toAdrianUK

Far too technical for me Adrian,

I use an iPad and when I clicked onto the avatar the bit on the right that says User info sometimes has the country. It would have saved you writing about the NHS and Scott’s daily trips to ER 🤔

Colette

AdrianUK profile image
AdrianUK in reply tomrsjsmith

Hey those yanks can learn from the NHS anyway! Lol. But on the iPhone app there is no user info displayed.

GrapeGrower1 profile image
GrapeGrower1 in reply toAdrianUK

Funny, I had to look up NHS to see what it meant. I'm way up in northern USA. Our culture up here is much closer to Canadian than mainstream US. Of course some Canadians would take offense to that. Like you and a lot of other people on this website, I'm a constant researcher, thus the confusing acronyms.

Big_Dee profile image
Big_Dee in reply toAdrianUK

Hello Adrian

In the old days we in the US called them GP (General Practitioners) , the hospital may have given them a raise and hospitals ask who is your Primary Care doctor :)

GrapeGrower1 profile image
GrapeGrower1 in reply toAdrianUK

Thanks so much for the response. That is way more than I expected. The concept of longer treatment makes sense to me. I have not gotten over any infection for several years without getting a second week added on. I have mentioned it to my GP the last few times I've been in but he doesn't change anything but the particular perscription. He admits he doesn't know much about CLL. He's been my GP for almost 40 years but maybe it's time to find another.

mrsjsmith profile image
mrsjsmith

Scott,

Naughty boy 🤭

Colette x

AdrianUK profile image
AdrianUK

I should have said new onset of rapid breathing and muddle headed ness Scott!!. We NEED you on here more than ever Scott these days. You brought a smile to my face for the first time today. Thank you!

W00dfin profile image
W00dfin

While in hospital with cellulitis I was treated with 3-4 IV antibiotics before they tried doxycycline which did the trick. Sometimes trial and error may be the best method.

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