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Sunday Morning (61): From Infection to Inflammation
This morning I looked at my medication cabinet, from where I run my little home pharmacy.
Suddenly I noticed a shift. The left section of the closet where I keep my anti-inflammation drugs, had advanced up to the middle of one shelf. And complementary, the right section where my antibiotics (anti- infection) drugs reside, has receded down to the middle of this shelf. How fascinating!
I clearly remember times where I stored and regularly ordered and used many types of antibiotics. Simple antibiotics, like doxycycline ad macrolides, to be used continuously for keeping the bugs compliant. More heavy antibiotics, to be used at times of exacerbation, to be used to kill the bugs when not compliant any more. Fluoroquinolones (like Ciproxin), amoxicillin with clavulanic acid (Augmentin), flucloxacillin (Floxapen), cotrimoxazole (Bactrim). At times I nebulized tobramycin or other inhalable antibiotics. And even occasionally I needed IV antibiotics, the real poisonous stuff like piperacillin/tazobactam (Piptazo/Tazocin), Cephalosporines (ceftazidime – Fortum), or meropenem (Meronem/Merem). There was even a difficult period where I needed an IV every two months.
And in those times, I hardly used any anti inflammatory drugs, only beclomethasone for my nose to prevent polyps from growing back after many ENT surgeries.
But times changed, and the notion increased that infection and inflammation are two sides of the same coin, so one cannot just pull on one string, but needs to address both sides of the equation. After all, infection is just the start of a cycle, and it is mostly the inflammation that causes us to experience the signs of it; inflamed tissue is also more susceptible for (re) infection, so this is a vicious cycle that needs to be addressed at both entrances of the process. Enter Zen from there.
In CF, it is often the (innate) inflammation where the problems starts, which attracts bugs to start a party of infections, which increases inflammation etcetera.
I began to inhale steroids as well, Becotide or Seretide. I started using a small dose of oral prednisone daily, which also improved my energy by elevating the blood sugar mildly. I discovered by accident (literally, I broke some ribs and needed a painkiller for a couple of months) the strong anti-inflammatory effects of Diclofenac in 2015, which I use daily in a low dose. This enormously decreased my need for antibiotics (no more IV’s since). I discovered that a low dose of levocetirizine (Xyzal – anti histamine) every other day also calmed down my airways noticeably (I have no hay fever by the way, but still it worked). And recently, because of Trikafta, my eyes became slightly inflamed and I upped the doses of levocetirizine (Xyzal) and added anti histamine eye drops to the equation, which helped reasonably well.
All in all, the focus to control the irritation of the airways due to CF shifted from anti-infection drugs (antibiotics) to anti-inflammation drugs considerably. So much so, that presently I don’t use any antibiotics anymore since Kaftrio (trikafta), but the need for anti inflammation is still there or even increased. This also improved the susceptibility of my airways to antibiotics, so when I need them, they work swiftly, even in normal doses for shorter courses of the standard stuff. Since starting Kaftrio in August 2021, for eight months I only had one mild exacerbation (only fever, no airway trouble), which easily receded after taking a two weeks course of Bactrim. This I think is an improvement by all standards. Fortunately, medical science has also seen this development and the number of available anti inflammatory drugs is slowly increasing, and many more are in the pipeline, specifically tailored to the needs of pwCF, where inflammation works in a very peculiar way because of the faulty electrolyte balance in the cells of the body.
What are your thoughts and experiences with this development? Perhaps we can share our expertise, that could be interesting and helpful!
Cheers, have a quiet Sunday,
Paul
Ps if we answer to this thread by one reaction per day, we can keep this subject in the picture of this forum and prevent it from being drowned away in the current #31DaysOfCF tsunami (just an observation, not a judgement).
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21 Replies
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Yes: Inflammation and infection do go together. Infection without inflammation is generally harmless. Normal Flora is just that. Bacteria that exist in a commensual way. Inflammation is the body’s reaction to a foreign substance/organisism. The body may react appropriately, inadequately or excessively. If inadequate the organism may not be controlled and antibiotics be required. If excessive and anti-inflammatory may be required. Even it appropriate either or both may be required. The bodies immune system is complex. may be overwhelmed, too weak or just right. It may go off in a tangent such as when Sjogrens Syndrome occurs. All very complex. With Trikafta we can expect fewer infections an thus less stimulation causing inflammation, thus less need for antibiotics and therefore lower risk of bacteria becoming resistant (a serious problem).
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Use of antibiotics is almost nonexistent for me but as mentioned here, when I do need to use them, the results are quick! In January 2020, we were able to successfully treat a small spot of pneumonia with a dose of oral antibiotics. Later that year, another course for a sinus infection that began to move to my lungs. But I don’t believe I’ve needed to take any since then! (A realization I’m only now having.) I also find that my lungs are easily irritated and chronically inflamed, but I don’t need to take NSAIDs for inflammation and aches in my body or sinuses nearly as much.
Regarding susceptibility to antibiotics, this is one of the coolest things about Trikafta to me! Previously, I cultured staph (sometimes MRSA, sometimes not), and three strains of pseudomonas, two of which were colonized. In recent cultures, there has been much less growth (only one detectable strain of pseudomonas) and much lower antibiotic resistance. It feels a bit like wiping the slate clean.
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Good to hear you are having similar experiences with antibiotics, Jenny.
I remember we talked earlier on the forum about your new trikafta dosing, but can’t find the post and don’t exactly remember on what dose you are right now. Would you mind enlightening me? I am currently trying a lower dose too, which is every other day I take only 1 trikafta in stead of 2. But so far this didn’t change anything yet, my eyes are still as sensitive. Fortunately, my airways still feel as good as with the full dose.
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Paul, I take half the morning dose each day (just one pill) plus the regular evening dose. It seems to be a good balance for me right now.
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Ah yes I remember now, Jenny. This sounds like a good scheme, and more regular than skipping one trikafta every other day. I always try to use medication evenly spread to not confuse the body, so that it can accomodatie to an even situation. Perhaps your scheme is what I will end up with as well. I will keep us posted.
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What is the difference between the morning pill and the evening (blue), the way they are working?
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Morning, why are you trying to lower Trikafta? Thx. For my self after a year of T my health it is all over i don’t know what to do, i find i need to restart to zero and relearning everything. 😢
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Anyone would have good guidelines for me where and how can i start please? I’m pretty lost and discourage. Thx
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Hi i also have pseudomonas that causing some pain in my lungs I’m curious what antibiotic you guy’s used to help control it? My CF Dr. thinking to give me nebulizer antibiotic all year round, i just tried Cayston but i developed a allergic reaction (joint & muscle pain, low grade fever) anyone option working with you?
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Yes. With most drugs reducing the dose is better than skipping doses. Various factors need be considered such as how long the drug is active in the body and the levels at any one time. The former is generally reported as the ‘half life’ – that is the time it takes for half the drug to disappear. The other is usually reported as a curve and also as the time above the effective level and the peak level. These factors determine the amount and frequency that a drug should be given. A drug may be repeated after the level falls below the effective level or before to maintain the level in an optimen range. I am not sure what these factors are with Trikafta (TK) but an example from another old drug is Digoxin: it has a very long half life of about 5 days and a quite narrow space between effective and toxic levels. It is often given as an initial loading dose followed by daily or even twice daily smaller ‘top-up’ doses to maintain the levels in the optimal ranges. With TK much is yet to be learnt and the optimal dose may vary from person to person. Of the 3 drugs in TK Ivacaftor has a shorter half life that the other two and so is given twice a day.
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Paul,
Thank you for the information. I am a 54 year old male with CF. My health has been relatively stable up until recently. I currently am not eligible for CFTR modulators due to my rare mutations. I am coming off of two back to back hospitalization, (December and late January). It seems I am resistant to just about everything. I will be taking part in a clinical trial regarding phage therapy hopefully in March or April.
My challenge is trying to stay healthy until the trial begins. I have mentioned ant-inflammatory meds to my doctor and am considering mentioning the Diclofenac, Becotide and Xyzal to them as options. Have you experienced any unusual side effects with any of these meds?
Any advice or guidance from you or anyone would be greatly appreciate.
Thank you
Jonny
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Jonny,
I take xyzal for my allergies and when I started they did make me tired (I’d recommend taking it at night) however, after a week or so my body adjusted and I was fine.
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That’s good to know, thank you. I was debating switching from Claritin to either Xyzal or Allegra. I may just try both to see if I feel a difference.
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Hi, Thank you for your post it is really informative. I’m on the path of finding a way with my CF Dr. to control my lungs inflammation since on TK. Advil working great for me but i can’t take it on a regular basis cause my kidney level is high 🙁 and my puffer Zenhale causing my more inflammation pain in my lungs so i can tolerate 1 to 2 puff daily. I tried Reactine and it cause me joints pain so ill try the one you mention or Claritin or Aeruis. I’m on or Lyrica and that’s help with the pain but not enough.
ps i lost my older CF brother Marc and he was great to help me with my CF, but this cite you guy’s make me feel like i found him again and other older brothers :).
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The drugs you mentioned are quite varied: some are anti-inflammatories and some anti-allergy . Both have their place – we have found low doses of Ibuprofen do improve breathing. Usual dose is 2x200mg 4x a day but we find just 1 capsule once of twice a day is adequate. It is a Nonsteroidal Anti-inflamatory (NSAID). Need to watch kidneys & Liver with NSAIDS. Aspirin can help but again need to watch side effects as also Panadol.
Re: Anti-allergy drugs there is a plethora of Antihistamines and the like for Asthma – all have their peculiarities/side effects – some worse /some better than others. Most relatively safe.
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Thx Tim, very good info, I’m seeing my CF Dr. tomorrow and we gonna talk for those options
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Hi J-P,
Lyrica (Pregabalin) is a rather strong pain killer that works best in neurogenic pain. Was originally developed for epilepsy. Needs reasonable supervision with a particular check for suicidal ideation. Otherwise is very good but can be addictive.
With all drugs we should read the Product Information sheets. In Australia we have 2 forms, a CMI which a consumer Information sheet that should be either in the packet or supplied by the Pharmacist when dispensing and a much more detailed PI (Product Information). Both can be accessed through the TGA (Therapeutics Goods Administration) – Australia’s controlling organization in the Health Department. Search TGA Australia. It can be a bit daunting searching for the information but I usually go through the public TGA Information. You may have to tick a consent box or so. The US has a similar source of Info.
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What about Aspirin? would it help
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Aspirin (Acetyl Salicylic Acid) is an anti-inflammatory and reasonable pain killer, but not usually classed amongst the NSAIDs and is not a steroid such as Prednisolone and Cortisol are. It is an extract from the bark of the willow tree. It has many benefits but also like all drugs some issues. it is irritating to the stomach and can cause bleeding. In low doses (100mg a day) does reduce clotting and the propensity for heart attacks.
I once had a dog with severe gastric bleeding – a colleague had put him on Aspirin and the naturopathic Willow Bark Extract together. At I knew how much Acetyl Salicylic Acid was in the Aspirin tablets – How much more was in the WBark Extract was the unknown. This is why I am wary of naturopathic/alternative medicines. I like to know what I am taking and how much!
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Hi JP, Yes TK is a gamechanger and we don’t know all we need about it. A lower dose is adequate in some people and reduces side effects. Side effects are not well understood – many seem that it is doing its job too well. Damage in the lungs has been progressing in most pwCF for years and some anti-inflams may be warranted. The new Phage therapy is exciting (But it is not new – phage therapy has been round since the ’50’s – the East Germans made good progress post WWII). Do keep talking to your CF Physicians and do not get toooooo discouraged.
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Thank you 👍, i see my Cf Dr. next week. It is making sense what you are say about TK and our body need to adapt, so that’s why Cf ppl are lower TK to help with side effect but at the same time TK keeping doing the job, wow! nice to know. What look like to be a balance TK? How can i figure out what is for me? Sorry for all the question
Phage therapy look interesting, Do my CF Dr. know who to contact and how proceed
Thx have a great day!🌞
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