hi
Trying to find out who else takes Co-Trimoxazole?
I have been taking it since August 2021 , I pill daily, along with Prednisolone. I am currently reducing Pred. 1mg per month, now on 6mg. I regularly ask my consultant if I need to keep taking and he says yes. Any comments would be appreciated.
Hi. hope you're doing well.
Yes I'm in that club too, although I have just this week finished tapering off Prednisilone so in 4 weeks I will be coming off Cotrimoxazole. Went right down to 1mg Prep for 1 week before stopping altogether and asked my renal unit pharmacy what else I could stop eg omeprazole (for stomach, will stop this in a week or so but it may leave me with some acid reflux, pharmacist's advice was to push through, effects won't go on too long so will give it a go).
Those are the only 2 I can drop now, but will be good to see the back of the Pred! Welcome return to my chiselled jawbone and goodbye to my moon-face!
hope that helps, keep well.
Steve
I’m on Co-trimoxazole but for me I was told it was due to being on rituximab and that I’d be coming off if they decide to take me off in the future. I’m one year into 4 years of rituximab infusions so plan on being on Co-trimoxazole for at least another 3 years.
I have been on co trimoxizole since GPA diagnosis 5 years ago, haven’t been on preds for 2 years and last rituximab infusion was a year ago. I am still on azathioprine and rheumatologist still wants me to continue co trimoxizole
I take Co-trim since 2016 twice a day and if I try to stop I get sick. I think it’s the reason my EGPA does not get worse…haven’t had any flares anymore.
Hi HappyLung. Good to hear from you. I can only talk about my personal situation which appears to be different from everybody else so here goes I was only on Co-Trimoxazole from Diagnosis (Dec 2019) until they stopped my Cyclophosphomide (March 2020) as soon as I was put onto Azathioprine it was stopped. In November 2020 after Azathioprine was deemed infective and I had my first blast of Rituximab and was not put back on it so hasn't taken it for nearly 3 years.
Please forgive me for going on a bit, and apologies to all you lovely people out there but I think it’s important. Firstly my Consultant is not a Rheumatologist she is a Renal Expert, who I personally think is the most fantastic person I have ever met and should get the Nobel Prize. However she is a no nonsense pill reduction advocate. She explained to me that she took me off Co-Trimoxazole because she wanted me to be exposed to everyday germs ( I know, but please read on) and if needed I could be re prescribed it if I was getting a lot of infections.
Secondly her attitude to Prednisolone is brutal, she wanted me off it ASAP, so after minor relapse because Azathioprine not effective as soon as I was given Rituximab she wanted to taper quickly so from Jan 2021 at 30mg daily it was reduced by 5mg per month ending completely by beginning of July 2021.
So where am I now? So in December 2019 my GPA was “Off the scale” so ANCA marker of +177 with potential Renal Failure. On November 17th I will have my 4th and last (so I am told) Rituximab as current ANCA level 3.8. Steroid free since July 2021, no other meds. Get colds from time to time.
All I can say is it’s worked so far for me. Sometimes taking an axe to things works and it sound all so brutal but before I go let me share with you one event that describes my consultant to a tee.
November 2020 my first Rituximab Infusion: Feeling quite poorly as going through minor relapse and after effects of Azathioprine cause severe stomach pains and in general feeling sorry for myself as wife wasn’t allowed to be with me because of Covid. Consultant on her rounds so in the care of the Renal Nurses who were administering treatment in a private room. I kept dropping off. Only to be woken by the blood pressure monitor every 15 minutes. After about 2 hours the Renal nurse told me she was turning off the BP monitor and the lights to let me rest for an hour. I dropped off, I felt relaxed. In my subconsciousness I heard my Consultants voice in the distance. An hour later I was woken by the nurse upping the dosage and taking my BP and temperature saying “your doing really well Nick” and she then asked did you talk to Dr xxxx (my Consultant) I said no! I was asleeep, has she been in? To which the Nurse replied “she was sat by your bed holding your hand”
I see myself as eternally lucky and privileged. And I know I have gone on a bit and again I apologise but in this world of doom, gloom and chaos there are some nice stories.
Take care all, my life wouldn’t be anywhere near as good as it is if it wasn’t for the fabulous people on this forum
Nick
Hi yes I have been on co Trimoxazole since diagnosis two years ago. I am on 4mf ores which I will soon start to reduce & have now finished my rutuximab. My renal consultant is the main person looking after me & he has said I will stay on the co Trimoxazole as my maintenance drug.
Lots of people are on co trimoxaxole to prevent infections while on immunosuppressive medications. Co trimoxazole is also thought to have immunomodulatory properties helpful for vasculitis. Have been taking it for 7 years with ko major infections.
I am on Co trimoxazole because of sinus damage. I have a 6 monthly Rituximab infusion to maintain remission, though my consultant does not foresee a relapse in next couple of years. I also take statin and blood pressure med; not for the obvious since both BP and cholesterol are normal, but my consultant says there are benefits to my condition. I went from 90-0 mg of prednisone in about 3 months. I am probably going to help trial a new med to reduce the long term impacts of Vasculitis on blood vessels.
I have GPA, mainly ears (deaf), sinuses (damaged) and nose (damage), relapsed on Cyclophosmadine after 9 infusions - heart, lung and kidney involvement. Swapped onto Rituximab, developed peripheral neuropathy in both feet. Managed to come off Pred after 3 years in 2019 but felt really bad - adrenal crisis so now on hydrocortisone for life. As regards Co-Tryimoxizole, I have taken 1 tablet every day since diagnosis in 2016 - was told that it is a preventative antibiotic to guard against upper respitory tract infections which I could be prone to and its important that I have some protection here.
Hi, I've been taking Co-Trimoxazole since Spring 2016, alongside Prednisolone (still) and other immunosuppression until a few months ago. I believe it's to help prevent infection. One consultant at Hammersmith suggested a few years back that I might not need it any more but that I should check with his older colleague - who felt I should continue to take it as it's good at preventing nasal infections (with GPA I have a permanently crusting nose), Not sure if this helps!
Dear HappyLung,
I had a Kidney Transplant, way back- in July 2013- and was 'on' Co-Trimoxazole for about a year. It is actually a, Very Good 'Broad Spectrum Anti-Biotic'- especially if you are allergic to Penicillin. Even if you aren't it IS a Good 'All Rounder', in terms of it's Protection- and is considered 'Safe' for Longer Term use too.
You don't say what your Condition Is exactly but, I strongly suspect a 'Long(er) Term' Lung Problem- probably associated with Vasculitis. It is for this Reason, your Doctor/ Consultant is suggesting you stay 'on' this Medication. I'm 'Tempted' to agree actually.
Do try to Reduce your Medication, in general terms, but DON'T ignore the advice, of your 'own' Doctors though.
Very Best Wishes
AndrewT
iinteresting. I was given co trimox for about 4 months after getting into remission along with just an antifungal ,never felt better .upon cessation sinus problems returned.i would take co trimox again if prescribed though if you read possible side effects you might reconsider.its a sulphonomide especially useful in preventing
I stopped taking steroids about 8 years ago, it took me about 8 years to come off the steroids. I pretty much had a permanent chest infection and had many antibiotics taken in all sorts of ways. Take as usual prescription, take it for two weeks take it for a month. Other combinations of antibiotics were tried I had two bouts of pneumonia eventually we reached an even keel. For long term Care I have taken Co-Trimoxazol Monday Wednesday and Friday for about 12 years and a few years later Azithromycin was added Monday Wednesday and Friday. An admission into local hospital stopped my antibiotics the chest infections returned it was during a routine visit to Addenbrooks Dr Sivasothy re started both antibiotics and told me not to let anyone stop them and I have done that on several occasions. My Churg Strauss at the moment is the best it has ever been and I am happy to carry on until Dr Sivasothy. I have also stopped taken Spireva inhaler.
Is there anyone out there suffering from churg-strauss syndrome which has damaged their nerves?
Does anyone take antihistamines
Does anyone take vitamin/food supplements?
