Greetings. Septrin was part of the medication I started at the commencement of Ibrutinib. I take 1 tab 960 mg evey alternate days. Have been on it for about 6 months now.My question: is it a lifelong medication just like Ibrutinib?
Thank you
Oldscores 1
I was also give Septrin for the duration of my Ibrutinb & Venetoclax treatment (nearly 3 years). It’s an antibiotic used to prevent and treat a type of chest infection called Pneumocystis Jiroveci pneumonia. You’ll hear this referred to this as 'PCP' as it was previously called Pneumocystis Carinii pneumonia. This is a preventative antibiotic during treatment I understand but usually is time limited unless there’s other reasons for it to continue prophylactically.
The pharmacists or other Ibrutinib patients on the site may be able to expand on this as I wasn’t on long term Ibrutinib so am unsure how long it continues. In terms of impact on my gut biome, I was glad to finish it. I’d assumed it was given to cover a risk period.
Best wishes,
Newdawn
I think the poster said he was only on Ibrutinib? I've seen others here being treated soley with Ibrutinib for CLL, who were given an anti biotic as well. Perhaps this had something to do with their particular risk of bacterial infection? If so, they should have had this explained to them. I was never treated with an antibiotic for prophylactic reasons while on Ibrutinib.
Yes I did see that the poster was only on Ibrutinib. Looking back at previous posts on this subject it does seem to be dependent on Consultant/hospital practice because not all members were given prophylactic antibiotics just as some weren’t given Acliclovir (I wasn’t). Septrin was part of my clinical trial protocol on Flair.
Clearly the best advice is to discuss this with the Consultant including intended duration because it doesn’t seem to be a standard procedure.
Newdawn
Thanks for your responses. Am concerned since it's an antibiotics. I will have to check with the consultant as suggested
I understand your concern about long term antibiotics, but if you are considered a higher risk, it is warranted. Areas of the world with higher humidity tend to have more risk of fungus and molds in the air than drier areas. If your immunity appears to be impaired, your doctor may want you on it. Have you had a series of infections before starting treatment?
And every person is different, some of us have near normal immune globulins and neutrophils and rarely get infections. Others are the opposite. Some have jobs where they are exposed to more potential sources of infection. Some have kids in school which put them at a higher risk.
My comment as a former pharmacist, is that all the drugs used for PJP fungal prophylaxis can cause phototoxicity. So if you don't wear sunscreen, or even if you do but start getting skin rashes, that should be told to your doc.
See if probiotic foods or supplements are OK, those can help normalize gut flora when needing to be on antibiotics long term.
I was given co trimoxazole when I started Ibrutinib 5 years ago. I thought Ibrutinib made us vulnerable to pneumonia.Surprisingly I was taken off Ibrutinib 6 weeks ago. I was told I wouldnt need the antibiotic now.
The reason given was because of joint and muscle pain. I will be monitored and put on a different drug if it comes baçk. Im nervous but do feel better. Anne uk
Like Newdawn says. Prophylactic against Pneumocystis Jiroveci pneumonia.
I took it for 5yrs after chemotherapy because my Lymphocyte count was so low for so long. I stopped when I developed an odd severe mouth allergy which I thought be due to Septrin. It wasn't as it turned out but by then my Lymphocyte count hit 1.0... so I've not continued. 1.0 the cut off number of Lymphocytes for Septrin use.
Incidentally I was also on Acyclovir for shingles and herpes protection. Stopped that too for same allergy reason. Then got shingles. That was a horrible illness.
PJP is also a serious infection.
Anyway, Septrin caused me no problems for all that time.
Long answer... no, probably not lifelong. But ask your Doctors why you are taking it and for how long. You should know that information.
Jig
Hi it is my understanding it is mandatory to take Septrin on the Flair trial as a prophylactic, if you draw any arm with ibrutinib, for as long as you are on it.I stoped at the end of the trial which lasted 6 years.
Ann
Ann is right. I am on Flair trial, taking co-trimoxazole for now coming up to 6 years with ibrutinib. All good thus far!
Hi Sparky when you get to the 6 year mark are you considering Static like me?
Ann
Yes I have asked to be part of the trial. not bothered about is maintained on Ibrutinib or taken off and monitored, Thought best to join to get best attention!
Hi Sparky, me too, I am on the intermittent arm 5 weeks now, so far so good. I agree about the trials, such good care. If you get the intermittent arm on the trial they put you straight back on ibrutinib after cut off points of the trial which are much lower than on watch and wait where any further treatment waits until disease progession. That’s another good reason for staying on trial in my opinion.
Good luck
Ann
Thanks Ann, yes I have a more aggressive CLL and my local specialists suspects it may return faster than most so lets see what happens. Good health to you too Ann, will keep you posted.
Sorry to hear that Marc, and hope your remission is a long one. I have bad markers ( always forget the numbers 17 and 53 ? ) and I had to stop Ibrutinib at Christmas because of suspected AFib. Waiting for Cardiology to discuss me with my Consultant, but so far feeling fine 🤞
Colette
I will keep my fingers crossed for you 🤞.
Good luck
Ann
😊
Hi Oldscores1,
I was on Bactrim / Septrim / TMP/SMZ (Trimethoprim / Sulfamethoxazole) for several months after a trial for idelalisib / Zydelig where I had preliminary signs of Pneumocystis. PCP or PJP
But later my CLL expert doctor learned that the risk of Pneumocystis had been linked to a low CD-4 T cell count in HIV patients, and he used those guidelines to take me off of the prophylactic.
See: ryanwhite.hrsa.gov/grants/p....
ncbi.nlm.nih.gov/pmc/articl...
SNIP: "Adult guidelines
"Adults and adolescents, including pregnant women and those on ART, with CD4 counts <200 cells/mm3 should receive chemoprophylaxis against PCP (AI). Persons who have a CD4 cell percentage of <14% should also be considered for PCP prophylaxis (BII). "
Whether the doctors in your country would follow similar guidelines after testing your T-Cell count is unknown.
-
Len
I take it during the winter months when the risk of catching a cold/flu/covid etc is higher but come off during the summer. That’s my choice as I don’t want to take it year round but my doctor lets me decide. I am on Acalabrutinib for three years and also had Obinutuzumab.
So the prophylaxis antibiotics go along with vaccines & IVIG or is it an either or type situation? I know that we are all individuals but its a lot to digest. I am just trying to prevent nausea with the meds I take now🤦🏽♀️
It seems to me that the 960 mg on alternate days is a large amount compared to what my consultant recommends.
He prefers as a prophylactic 400 mg and only three times a week; so Monday, Wednesday and Friday.
One might however assume that a person with a known medical history of infections gets a higher dose.
Dick
Do you just take one 400mg tablet 3 times a week? I take 2 x480mg 3 times a week and have done since starting acalabrutinib in September 2021.
Yes just one 400mg tablet 3 times a week, since starting Acalabrutinib.
I can only guess that the dosage recommended would depend upon one's prior medical history of any illness that might affect the lungs.
Does the patient suffer with colds or the flu frequently for example.
Of course the lower the dose the better, as too much of this type of medicine can affect the microbiome for some people.
I am on the Co trimoxazole 960 Monday, Wednesday and Friday. I am half way through my O&V treatment.
Many of the protocols I have seen in the US is a Bactrim DS tablet (960mg) three times a week. So you being on a regular Bactrim three times a week is half that dose. The protocols I read were a regular Bactrim daily, or a Bactrim DS 3 times a week.
There doesn't seem to be a standard consensus, the main point being it's a patient specific type thing. Renal function, T cell level, how immune suppressing a treatment actually is on a patient, all play a part. Nutritional status, other things are factored in to a decision to prescribe, and the dose used..
From physician CE training as of 2023:
"Guidelines for PCP prophylaxis in non-HIV immunocompromised patients due to other conditions are not well established........ For patients with hematologic and solid malignancies, specifically patients with acute lymphocytic leukemia (ALL), prolonged CD4 count 200cells/microL or while on chemotherapy. For other malignancies, the risk is not well-established, and usually, it is given for the duration of chemotherapy. For patients suffering from rheumatologic conditions and connective tissue diseases, there are no guidelines, but the general recommendations are to initiate prophylaxis if patients are on long-term steroid treatment or other immunosuppressive therapy.
Other populations that experts agree would benefit from initiation of primary prophylaxis are patients with severe protein malnutrition, primary immune deficiencies, and a persistent CD4 count of <200cells/microL.[8][9][10][11][12][13]"
ncbi.nlm.nih.gov/books/NBK5...
Also, Bactrim DS protects against Nocardia, which is commonly found in soil. So it's doing "double duty" IMO.
My consultant prescribes the Acalabrutinib and Co-Trimoxazole each month.
I’ve been on low dose, long term co-trimox, acyclovir and azithromycin for two years now. The latter for pseudomonas colonisation.
For V+O depending on hospital and protocol the UK NHS could administer Co-trimoxazole :
None (in protocol)
400/80mg (480mg) daily.
800/160mg (960mg) Monday, Wednesday, Friday.
Or it's not listed in the protocol but still given. (Moi! 480mg daily until end of V+O)
It can be for duration of V+O, or for duration of Obin + 3 months after and/or "consider at consultants discretion".
Every protocol is different.
I’ve been on daily tablet of Co-trimoxazole (80/400mg) since starting Acalabrutinib over a year ago. I always assumed it was an ongoing and life long treatment.
I'm currently on V and O and have taken Co-trimoxazole Monday, Wednesday and Friday and Aciclovir twice a day since beginning treatment. I assumed it was standard practice.
I have been following this post regarding Septrin with interest as I have been concerned about the side effects of all my prescribed medication and the difficulties I am suffering.
Early on in my treatment I was referred to the Royal London Behcets Centre of Excellence to establish if my problems were Behcets related or the effects of CLL and Ibrutinib treatment.
The conclusion was that the CLL had dampened down my Behcets and therefore the cause of my problems was the CLL and too much toxic medication.
A review of my medication was suggested and both my haematologist and GP said all was ok.
However I decided to research all my medication myself and was shocked to discover just how many of my symptoms could be attributed to the various medications and as a consequence a number of drugs were withdrawn.
In particular I asked to come off the Co-Trimoxasole but was told that because of my history of chest infections and sepsis I should remain on the septrin.
My Ibrutinib was stopped 4 months ago but I am still on the septrin all in all it’s been 10 years on both.
Obviously I now need to pose the question, do I need to remain on the septrin? And would it make any difference to my symptoms if it is stopped?
I have no educated answer whatsoever but I am sorry to hear about your troubles & even your need to search & find your own answers. I know that we must be our own best advocates & quality of life is my main concern. If I was to take all the medication that I was prescribed it would have such a detrimental effect on my quality of life. I took my pain meds close to my Zanubritinib & was severely nauseated for 3 days.
My feet burn if I stand too long, so I don’t stand too long. I am in horrendous pain when I wake up but after drinking water & walking a bit, it decreases. I take my Symbicort/Nasocort 3X per week but them dam steroids put 40lbs on me!!! I just bought the cutest Rollator Walker by Elenker to get my walking in safely since my Left Hip fracture from 2011 has bone on bone areas & my Right Foot Arch has collapsed & I am waiting for my customized Arizona Boot.
I only got sick 2X, 2 weeks after starting full dose Zanubritinib (denied antibiotics from 4 doctors for 3 months) & 1 week after increasing the dose, so I don’t get frequent infections. So forget about prophylactic antibiotics I couldn’t get antibiotics with a confirmed Pneumonia on CT Scan🤦🏽♀️
I just have to weigh the risk versus the benefit on every single medication & I can not leave that determination to anyone else especially since I seen the push for me was IVIG even though I don’t even qualify with the ‘frequent’ infection criteria. Its too many hidden agendas without quality of life consideration in my 1yr experience.
Yup I made 1yr on BTKIs🎉🎉🎉
H CoachVera55,
It would seem that all of us with CLL have very similar stories to tell especially when it comes to medication and how the side effects can sometimes seem worse than the illness itself.
It becomes even more complicated when you have other illnesses, especially those associated with the immune system which then simply add to the confusion over which is the cause of which symptom etc.
For me personally, the increasingly painful neuropathy and nerve pain is equal to any pain I have suffered in the past 59 year’s including, multiple bilateral leg fractures, deep vein blood clots in both legs, shingles and many other symptoms, such as ulcers and painful migraines associated with my Behcets.
My mobility has suffered further decline since a failed nerve denervation procedure which was performed to relieve the symptoms of my Spondylolisthesis (stress fracture and forward slip of vertebrae) which I have suffered from since the mid 1980’s
My back condition is often misdiagnosed as simply Spondylosis (chronic wear on the spine)
The longterm effects of my deep vein clots for which I was prescribed lifelong anticoagulation have compromised my mobility and the added difficulties related to my spine issues have further reduced my walking ability to a very painful few paces at a time.
As for my CLL well that is a relatively new condition which in all fairness has been effectively treated since diagnosis and my continued IVIG infusions have protected me from any further chest infections.
My best wishes
Aerobobcat
Yes Aerobobcat, I so agree & understand. My CLL over 14yrs have not caused me this kind of pain but I am fighting to stay hopeful. I do not like this grumpy complaining person that I have become because I am usually the designated Encourager🙌🏾
The bone, joint & nerve pain is truly unbearable at times & the nausea I get from pain medication doesn’t help so something has to give. Losing this 30lbs that I gained must help so that’s my focus. May GOD relieve your pain & improve your mobility soon & very soon🙏🏾
CoachVera55,
Yes, as I say we are all singing from the same song book. Take care and thanks for your kind words.
Ibrutinib and Anti-Inflammatory Medications 
Suspending Ibrutinib 
Urgent question: low platelets 
Medical science stumbles on --- slowly.
Medical update with no Ibrutinib 
