NNitrofurantoin Help: aa Dr has... - Pernicious Anaemi...

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NNitrofurantoin Help

mabs79 profile image
13 Replies

aa Dr has prescribed me nitrofurantoin however I am still on my loadin doses an only been on folic acid for 10 days. Has anyone been ok on this. It says don't take use caution if got b deficiencies and low haemoglobinhaemoglobin. I have iron deficiency low folate and low b12 I have done 5 of my loading doses and last one is today. My urine infection is only suspected as they couldn't test my urine but my white blood count was raised I dictating infection.

i have taken 1 tablet in night but didn't think to read the leaflet as I have had them before. Last year. Has anyone taken these and been ok I am petrified now as someone said it would just deactivate all the b12 I have just had and will have to do loading doses all over again?!!

pleade help I'm so scared right now!!

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mabs79 profile image
mabs79
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13 Replies
Sleepybunny profile image
Sleepybunny

Hi,

I'm sorry to read that you're scared.

Could you talk to your GP?

Maybe ring the surgery, explain the situation and ask for a GP to ring you back.

If GP is not available, perhaps you could talk to your local pharmacist who should have a good understanding of the effects of drugs/medicines that they dispense.

If you feel the situation is really urgent, you could ring NHS 111

111.nhs.uk/

I really hope you find someone who can help you.

I'm not medically trained.

mabs79 profile image
mabs79 in reply to Sleepybunny

ii called the pharmacy and they weren't sure but said probably best not to take it as it does say use with caution and I have low folate b12 and iron. So have rung the GP and awaiting a call. Just nervous about my b12 etc as only just starting my treatment journey. I have ordered supplies to self inject just waiting for everything to arrive which may take a couple of weeks.

jusy so nervous of everything at the moment and don't want to jeopardize my treatment I havhave already started for it to be of no use and need to start all over again. Everything is scaring me as my mental state is extremely fragile and feel on the edge all the time. It's hard as no one understands around me just how hard it is and am not getting a lot of support just people mocking me! This makes me feel even worse and more vulnerable. Just wish I was stronger to tell them to f#@k off! SorrySorry. For my going on. I just breakdown all the time and fed up of it all. Seems to be one thing after another.

thank you 😊

Thrones12 profile image
Thrones12 in reply to mabs79

hi Mabs sorry to hear this.I used to suffer badly with atrophy which mimics utis, they gave me so many antibiotics without lab results that eventually I built up allergies to most antibiotics which never helped anyway.

Since having regular b12 shots,I have P.A so self inject too,I no longer suffer with this.I went from every couple of weeks with a “uti” to zero for 4 years now.

It was very bad atrophy I had with fine paper cuts in my undercarriage which stung like hell every time I weed. This is all so treatable it takes a while to get your head around it but you can and you’ll find it gives you that feeling of having control back which wll lessen your anxiety.

Try taking warm water with lemon juice in it first thing in morning and last thing at night,it helps neutralise too much acidity in your urine and lessens the stinging while your trying to heal.

Be careful with acidic foods like tomatoes oranges etc as I found they increased my bladder pain. I cancelled so many holidays over the years because I was so scared of leaking or getting Ill while away,now it’s just a distant memory. My labs very very rarely ever came back infected.Drink plenty water take your multi b vits along with your b12 shots and you take control don't be scared you’ll get plenty helpful advice from the lovely members here.

Best of luck 😉

Sleepybunny profile image
Sleepybunny in reply to mabs79

Many people on the forum find that their mental health symptoms improve after B12 treatment starts, mine did...in fact very quickly in my case.

There are various UK charities who can offer support with mental health issues.

Here's just a few .....

anxietyuk.org.uk/

sane.org.uk/

mind.org.uk/

samaritans.org/

mabs79 profile image
mabs79

ii don't get burning I just have a bad pain in my back that looks like bruising but not banged it and have crampy right side pain with spasms. They couldn't test my urine as menstruating so my white blood cells where at 10.8 so suspect a UTI. However I also have a small Rash on my back near where it hurts and they think it may turn to shingles but too early to tell yet.

i just know it literally feels like one thing after another and am constantly at the drs or the hospital. It took so long to get diagnosed with my b12 and folate deficiency. They just get pissed off with me when I ring.

Sleepybunny profile image
Sleepybunny in reply to mabs79

"They just get p***** off with me when I ring."

That sounds unprofessional to me.

Here's a link to a thread I started recently about Patient Safety.

It has lots of useful links for people who've had difficult health experiences.

healthunlocked.com/pasoc/po...

Technoid profile image
Technoid

I found this 1968 paper abstract on Nitrofurantoin:

"SINCE its introduction in 1952 the hydantoin compound, nitrofurantoin (Furadantin), has proved to be an effective agent for the treatment of many types of organism causing urinary tract infection. Unfortunately, its use has occasionally been associated with sensorimotor neuropathy which usually has developed in patients with impaired renal function. Some investigators have suggested that this complication is a direct neurotoxic effect of the drug or the result of impaired renal excretion of toxic metabolic products. Others have considered that preexisting systemic disease such as diabetes mellitus has caused subclinical neural damage which is aggravated by nitrofurantoin. A fourth hypothesis, also unproved, is that nitrofurantoin might cause neuropathy by acting as a folic-acid antagonist. Supporting this point of view are reports that neural as well as hematopoietic effects may be produced by depleting the body's stores of folic acid."

from : jamanetwork.com/journals/ja...

I gather that these adverse reactions are quite rare though.

Some additional theories are raised in this paper, discovered by FBirder in a previous thread. Extract follows:

"(e.g. Nitrofurantoin) by acting as a Folic acid antagonist. Another hypothesis for a mechanism of neurotoxicity is via Acetyl-coenzyme-A inhibition interfering with carbohydrate metabolism (e.g. Nitrofurantoin). Some other identified or suspected mechanisms are thought to involve an interference with Pyridoxine metabolism (e.g. Isoniazid), interference with Pyruvate oxidation (e.g. the Nitrofurans)"

researchgate.net/publicatio...

There doesnt seem to be any effect on B12 but a possibility exists for negative interactions with regard to folic acid status.

I think its HIGHLY unlikely a single Nitrofurantoin tablet would precipitate any of these adverse effects (notice the paper above talks about "prolonged therapy"). Overall, the negative side effects, although serious, seem rare and confined to longer term use.

mabs79 profile image
mabs79 in reply to Technoid

tthanks technoid GP has changed me to fosfomycin just in casecase. But thank you for all the info

Whoa182 profile image
Whoa182 in reply to mabs79

How did you get on with Fosfomycin? I'm looking at taking it for prostatitis but I'd have to take it for at least 2 weeks, every other day. Maybe longer if necessary.

I've tried Doxycycline and Trimethoprim, but both caused me very bad nerve pains like tingling and burning all over. Used to be able to use both of these without issues years ago...

I think having a deficiency in B12 has made me more susceptible to these antibiotics. And it's funny that I only get one side effect from then, nerve pain.

I do not have PA, but I've been on B12 5000 mcg / daily now for about 18 days and the improvements in neuropathy has been rapid. I got an appointment with urologist on the 19th, so he'll probably give me something then, like Fosfomycin.

I discovered, only after attempting to try Trimethoprim that it can induce a B12 deficiency (from NHS website), as well as folic acid deficiency, quite quickly. And Doxycycline can be neurotoxic to "exposed" nerve cells and can disrupt myelin sheath.

I had no idea why I was reacting to badly to these antibiotics that used to be totally fine... But it appears I may have found the cause.

MrsTuft profile image
MrsTuft

It was nitrofuratoin that caused my huge crash. You’re wise to change it. And keep injecting and upping your folate and iron. And I would wait for a urine culture to see if it is a uti or not, if you can.

Frogit profile image
Frogit

Oh good grief, no wonder my B12 ran out so quickly this time, two courses of nitro curtain before they gave me a weeks worth of the right antibiotic for the infection. I don’t think it has entirely worked either. Thanks for the heads up on that stuff. I will make sure the next prescribers thinks about it!

mabs79 profile image
mabs79

HHiHHiHihi Whoa I only had 1dose at 3dissolvable in liquid.I have had it previously for a urine infection but had 2doses ofbut both times I took it I had no side effects at all.Hopefully the urologist can work with you and set a correct dosing schedule for you.

MattdL182 profile image
MattdL182 in reply to mabs79

Did you have preexisting neuropathy while you were taking it?

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