Nitrofurantoin

[jajeni68]

Hi I have SLE, DLE and Fibromyalgia. I have a suspected kidney infection and yesterday I was prescribed Trimethorpin but after checking if it was safe to take with SLE I found out it was a sulphar based antibiotic and therefore I shouldn't take it with SLE. I was then prescribed Nitrofurantoin, however when I checked the patient information leaflet alarm bells rang as I appear to have some of the issues this antibiotic can cause. So I haven't started to take it yet and just wondered if anyone had any advice as to whether or not they know if it is safe to take with SLE. I would like to add that all this was done without a gp actually seeing me in person.

Thanks

[PMRpro]

Contact your local pharmacist - obviously your GPs haven't taken any notice of your notes have they! A pharmacist knows far more about drugs and interactions than any GP - but be sure you speak to the pharmacist and not the counter staff.

Did they not even do a dip test on your urine?

[jajeni68 in reply to PMRpro]

Hi and thanks for replying. Yes they did dip my urine and have sent it off. I did manage to speak to a different gp yesterday and was prescribed Cefalexin. Although it took all day to track down where the prescription had actually been sent to! Got there in the end. Many thanks.

[Barnclown]

I agree with PMR

And when my NHS urology surgeon prescribed nitrofurantoin prophylacticly last year I did check first with my fav pharmacist. She reviewed all my meds & gave me the ok to take nitrofurantoin. I take at least 1 X 100mg tab each week and am doing alright. My oral prescription meds are daily:

Hydroxychloroquine + mycophenolate cellcept + prednisolone + amitriptyline

And Adcal-D3

With occasionally:

Mefenamic acid

Oesomeprazole

Also am using a heap of prescription topicals inc steroid-types

Hope this helps

🍀 Coco

PS every now & then my gp surgery tries to give me trimethoprim...I refuse it (luckily, way before my infant onset lupus diagnosis was recovered 5 years ago, I'd proven resistant to trimethoprin...but that was only having taken it repeatedly for what I now know have been "complex persistent pattern UTIs with pyelonephritis"

[jajeni68 in reply to Barnclown]

Thank you for replying. I was also prescribed Hydroxychloroquine but it made me very ill. So then I was given Mepacrine, which also made me very ill. So at the moment I'm not taking anything to treat the SLE/DLE. The trouble is it takes so long to get another appointment with the consultant. Luckily I asked to be transferred to a different hospital, and now next week I am seeing a consultant in a department that actually has a Lupus specialist nurse. I am crossing all my fingers and toes that I actually get some help as so far it has been the most ridiculously complicated journey! I feel like I am wading through treacle most of the time which is most frustrating. Good job I am quite a positive person!!

Many thanks.

[Barnclown in reply to jajeni68]

Congrats: you've done well to stick things out + get this referral🌟🌟🌟👏👏👏

Hope you'll let us know how you get on

🍀🍀🍀🍀🍀🍀

[noonoo52 in reply to jajeni68]

Hi jajeni68, I was pointed in the direction of Lupus UK as you can now get a drug called PLAQUENIL made by Zentiva which was my original drug, I had no problems whatsoever with this one. The original one was discontinued bit now available. I am waiting for a response to get my medication change back to,this one as the QUINORIC gives too many side effects if that is the one you have been on. Ref the Nitrofurination antibiotic I was given this before I was diagnosed with SLE and its usually a two week or sometimes longer course but it makes you very nauseated, good way to lose weight it you need to but very unpleasant, I know several people who have taken it and all couldn't stomach it for more than four days, in saying that everyone is different, it is a drug they use if nothing else is working. Good luck Nx

[LUPUSadmin]

Hi Jajeni68,

Firstly welcome to the LUPUS UK community!

You've got some great responses here. PMRpro is right, if you've got any questions about the compatibility of certain medications then go to your pharmacist and they should be able to answer them. If you feel that you've been prescribed the wrong medication then go to your GP and tell them so.

If you'd like a free information pack about lupus then you can apply for or download one from: lupusuk.org.uk/contact-us.

George

[jajeni68 in reply to LUPUSadmin]

Thanks George. I joined Lupus UK several months ago. They are very informative, although I have yet not managed to get to a local meeting.

[Paul_Howard Partner LUPUS UK in reply to jajeni68]

Hi jajeni68,

I'm glad that you have found our information helpful. Do you have details of your nearest meeting?