Could anyone help with my puzzle please? I've been on Septrin Forte 960mg 3 per week, since January 2007 when WG was diagnosed.

[braindamage]

The last meeting I had with my Rheum. Consultant suggested I'd be on it for life. My Nephrologist, 2 weeks later suggested it be stopped as he thought it was causing my extreme fatigue but said He'd discuss with my Rheumatologist! He also told me that my red blood cells were very large and he reckoned it was causing my fatigue and my very low B11 results. Phoned my GP this am and he said carry on but wondered why I'd been re prescribed Septin? He was surprised that I'd never had it stopped! I'm confused.

[SandieB]

Hi there iwas put on it over a year ago 960mg everyday and supposedly for 6mths as i was getting bad chest infections and iam still taking it with no side effects up to now. I get very tired at times but its due to the WG and i have had this awfull distructive disease for many years now.....

[Hidden]

HI Brian. I've copy and pasted my response from the V-UK Facebook page for the benefit of any non-subscribers here. The poll referred to can easily be found by the menu above.

There appears to be a divided opinion on the use of Septrin. David Jayne at Addenbrookes placed me on 960mg per day some years ago and advised to stay on it 'for life'. From a survey on the V-UK HealthUnlocked there were only 50% who had been prescribed the drug. 5% had been taken off the drug for a variety of reasons. It's unknown why the drug has benefits as it's too low a dose to be an effective antibiotic per se. The suggestion from Addenbrookes is that it acts on an up or downstream process which benefits vasculitis patients. I must admit I've never heard it blamed for fatigue or enlarged red cells and it's counter intuitive that it would deplete B11. It's clear there's contradictory beliefs between clinicians and all I can say is that I personally have had no reason to stop taking it.

[kath12341]

Hi I am alsos on septrin and have been since diagnosed ifeb 2007. My consultant said that it was to stop lung infections which I would be more suceptable and will be on it for life I take 2 every day. i guess we dont have one since fits all treatment regime

[Kenneth]

I have been on Septrin since 1996. As far as i know, I do not suffer any side effects at all. I was first prescribed them by Dr. Martin Lockwood at Addebrooks & I am now under Dr. Jayne, who has kept me on the prescription. I was originally told,I was on septrin because I had had WG which effected my lungs but also to keep away further crustiness in my nose.

[braindamage]

Many thanks to you all for your replies. I guess the confusion will continue! All the best to you all