How many take DS Bactrim daily?

[Nancy]

Hi Everybody!!
I have been on daily bactrim DS for many years. It does not affect the Wegs directly but is highly protective - primarily against Pneumocystis Carinii (PCP) most frequently seen in immune supression with HIV/AIDS pt's. The Bactrim prevents potential Flare ups by reducing the potential for sinus infection - killing off bad nasal bacteria - which has been know to stir sinus to pulmonary or systemic reaction/flares... I am not certain why people are taking 2 Bactrim daily - especially over a long period of time.. You are just potentially depriving yourself of a quality "cheap" antibiotic if needed for other issues ( i.e. urinary tract infections or even Methicillin Resistent Staph Aureus ( MRSA) which due to decreased immune status - all of us could be susceptible to if in a Long-term care home or hospital environment... The studies that I have reviewed show that one Bactrim daily is effective. I do not have a doubt that the every other day routine is good as well...but daily doesn't bother me... Old drug, cheap and effective... So rare with the WEGS treatment plans as discussed... I am with you Jack - my Grandfather used to spend 3-4 months year in Europe traveling on the rails. He got sick and was well treated in London for a Kidney issue - I wish that we were more focused on preventative medicine versus arguing about who will pay to pick up the pieces... We do less with each dollar spent than many other countries although we provide good medical care...
I agree with Sangye about the use of immune boosting foods and drinks. I know that I used to grow my own wheatgrass and other sprouts for salads... Then when I saw the level of bacteria that could result and the possible transmission - I now even avoid sprouts, etc on salad bars, etc...Good for others - not for WEGs compromised immune status issues. Interesting always to hear what other people are doing for treatment..

[flana]

Raj, I agree. That's just not right for you to be on ctx that long. Either it works within the first few months or it doesn't.

Jack, I think higher doses of ctx were killing too many people. That took care of the Wegs, but the price was a little steep!

I agree with y'al... my primary rheumi replied that he did not believe in ANCA's... I am now planning on switching to my secondary rheumi @ stanford. He seem to be of the same camp as you all... Will see when I can get an appt with him... hopefully soon...

[Sangye]

That's good to hear, Raj. Your primary rheumy was right about ANCAs, though. They're not reliable. My JHU doc rarely orders one--mostly just out of curiousity but never to measure Wegs activity.

At any rate, I'm glad you're not continuing with a doc who doesn't follow standard of care medicine. No one anywhere advocates keeping patients on ctx that long. It's universally accepted that they should wean you off within a year at the very latest.

[pberggren1]

My new doc says only 3 months of ctx.

[brocky99]

When i saw dr on monday at hospital it was the usual hi lisa how r u so my immediate reply was yeah im fine thanks. So off he goes with the consultation saying he his going to take me off most of my tablets including the bactrim so i was quite happy because i know most of the tablets i take were to counteract the result of my kidneys failing, and he was going to reduce pred as well, then at the end he asked have u any questions to which i told him about the rash and nose bleeds so then he said forget what we have just discussed for last 15 mins and continue with everything. I was gutted but still it was my own fault. xx

I only did 3 months of cytoxin when i relapsed then went onto aza daily.

[Jack]

I think he made the right decision there! Any Wegener's symptoms should not be ignored or you can end up in big trouble. Remember that activity is not always reflected in the blood results so your own bodies reaction should always be considered first. Maybe increasing your meds would have been the better move.

If I was in a position to reduce medication, coming off Bactrim would be one of the last to go. It seems to be very effective and carry few side effects if you are not allergic to it. Some people stay in remission on Bactrim alone.

[JanW]

I agree with Jack and think that any doc should be asking a question more specific than: "how are you feeling?" anyway. That should be followed up with: any new symptoms? What about your old symptoms? I see my guy every six weeks and thats always the first questions.

My ENT just makes me take a deep breath in and out, and that's good enough for him (I had a stenosis repair done by him in March).

[brocky99]

I know right decision was made and my rash was one of the first symptoms when i was first diagnosed so I know deep down something isnt right. I think replying to the question r u alright with a yes im fine is a typical weggies thing i say it so often because we dont look very ill so if u say no im not ok they look at u as if u have 2 heads. im sure u all know what i mean. Anyway the dr was a dr I have never seen before in clinic because i now dont have to go to clinic at the hospital where i was 1st dignosed because they hold a clinic at the dialysis centre every 6 months but he told me he wanted to see me every 4 weeks, so he his keeping a close eye on me. I have seen him on ward rounds before now when i have been in hospital but never really spoke to him directly one to one so it ois just a case of us both getting to know each other if that makes sense. They took more bloods last night so hopefully will have some answers by friday.

[elephant]

Brocy it is better to be safe than sorry. When you get your kidney transplant you will be on the simular drugs we are on now. It may keep your WG quiet.

[brocky99]

The drs have mentioned that. the problem is the dr i saw last monday didnt seem hopeful of a transplant if wg doesnt go into remission so its a waiting game at mo. They r going to look into it again in feb next year which will be 12 months from last flare but if i am having a flare now it will be 12 months from now before they can look into a transplant.