Mamici's... BELIEVE it or NOT!

Much of yesterday’s late morning and early afternoon was spent on the couch writing that retrospective rant, “One Year Ago Today.” (Thank you all so very much for reading it and for your kind and generous comments!)

I was reluctant to mention this at the time, because it’s always freakin something with me, isn’t it? ...but my early morning was spent at the GP’s and the local Pharmacy!

“Yes," again and “No,” it wasn’t the PMR, GCA, Neuropathy or the knee! (Oh! ...the knee is feeling pretty damn good since Monday’s aspiration and injection!)

Yesterday’s GP visit was of a more urgent nature, as I had been self treating, what I believed might be an oncoming UTI. You know the drill; drink lots of water & cranberry juice, take probiotics, extra Vit-C… I thought I had it at bay, until I woke up yesterday morning and “OH BOY,” it was NOT at bay!

The Doc confirmed, a full fledged, bona fide, raging UTI. A quick trip to the pharmacy to pick up something called Macrobid® and I’d be good to go… right?

Wrong! OMG! What is this poisonous venom, in the pretty blue and yellow capsule?

About an hour after I took the first dose, my face and chest became hot and flushed. It felt like I had a fever, but I didn’t. I developed a ridiculous headache and the back of my neck and shoulders were killing me! (Are you freaking kidding me?) I was overcome with exhaustion (like in the early days of PMR & GCA!) and could do nothing, but lay on the couch.

As the afternoon wore on, I became more lethargic and just laid there, like a log, watching the late afternoon sun, change the way everything in the living room looked and felt. It was like a not so good acid trip! I realised around 6:00 (after I had been laying there, motionless, for about 3 hours) that this was EXACTLY how I had spent November 13th, 2017!!!

Deja f**king vu!

Seriously… me, the couch, my “sick” duvet, the headache, the feeling like crap, watching the light in the rom change; between moments of consciousness and moments of drowsiness.

Was this a reminder? A test? A warning? Had I somehow manifested this recurring nightmare?

Don't you think it odd that two days, exactly one year apart, could be so exactly the same? Maybe the Macrobid brought it on, but it's true, it happened.

Mamici's Believe It or Not!

PS - I went to bed immediately after taking the second dose, so no harm no foul. ...but wish me luck, as I’m getting ready to take my third dose of this poison cure from hell! 🤞🏼

[Twopies]

It's nasty stuff. There are far better antibiotics for Utis...you have to find the right one for you. I won't take macrobid ever again. Best wishes.

[Hidden in reply to Twopies]

You're right Twopies... It is vile! I will never take it again!!

[Primarose]

Oh mamici1 that's horrendous, I would ring your surgery and report the side effects. They gave me metronidazole once after a surgical procedure and I ended up in A & E.

[Hidden in reply to Primarose]

Thanks Primarose, Read today's update... it gets better!!!! 🤣

[Primarose in reply to Hidden]

Thank goodness for that, I was worried that you might end up in A & E.

[Longtimer]

Oh dear powerful drugs methinks...last year my son took antibiotics for something (can`t remember) he woke up hallicinating and wandering about, my daughter-in-law was so worried about him they called 111, who sent out paramedics....they were very good and told him...no more!....wow it`s a trade off sometimes....I have a friend who can take any drug chucked at her...we are all different....who it eases soon.....

[Hidden in reply to Longtimer]

Wow! Bummer. Sorry to hear that LT. I remember taking antibiotics as a kid... no big deal! You took them and you felt better. These modern day concoctions are lethal!

[Longtimer in reply to Hidden]

Too right they are, shame we have to take them to find out!...as I keep saying....we are all guinea pigs!...hope you are feeling better?

Years ago a doctor I had, liked to use old fashioned remedies, and when I had a couple of UTI`s he prescribed Mist-Pot-Sit....it turned urine I think from acid to alkaline (or other way around) and it worked for a few years, then went in hospital and had my bladder stretched....never had a problem since....fingers crossed!

[Hidden in reply to Longtimer]

Cool ... it's still around!

Mist Pot Cit - also known as Potassium Citrate Mixture. This medication is used to make the urine less acidic.

[Longtimer in reply to Hidden]

If I was prone to them now, think I would keep a bottle handy just in case, might halt it getting worse...worth a try...very miserable UTI's as you have found out.....all the extra things to put up with, amazing really what our bodies deal with.....

[PMRpro Ambassador in reply to Hidden]

I wondered if mist pot cyst and D-mannose can be mixed/used together. I found this:

uqora.com/pages/uqora-scien...

I can't find a UK listing - except Amazon. But either getting the separate substances or trying to get it seems worth a try.

[Hidden in reply to PMRpro]

You are a resourceful little minx aren't you! Thank you so much!!!! xxx

[PMRpro Ambassador in reply to Hidden]

[peace_lover]

Sounds like a medicine I have to add to my "ask for an alternative" list. Not going to ask how you knew it was like a bad acid trip..... I know you have an active imagination so I'm giving you the benefit of the doubt

[Hidden in reply to peace_lover]

Indeed peace_lover, indeed. And... Ummmmm... yeah, active imagination... that's it! 😉

[PMRpro Ambassador]

Nitrofurantoin is a FOUL antibiotic!!

rxlist.com/macrobid-drug.ht...

You may or may not want to read the side effects - they are comprehensive and include up to and including psychotic reactions! I emphasise these are more likely with long term use - the thought of taking it for months makes me twitchy!

How long are you taking it for? If any of that happens again I think consideration of an allergic reaction should be on the cards.

[Hidden in reply to PMRpro]

Thank you PMRpro, See today's update... I was supposed to take for 5 days, but I have stopped the course.

I just read the link you sent and this jumped out at me: Peripheral neuropathy, which may become severe or irreversible, has occurred. 😱😱😱😱

[PMRpro Ambassador in reply to Hidden]

Quite - and that was part of the reason I said most would be more likely with long term use rather than just a few days. But given you already have peripheral neuropathy it seemed a bit dodgy using it.

[Hidden in reply to PMRpro]

Really!!!!

[powerwalk in reply to PMRpro]

I've been given a strong dose of Keflex - having got another UTI while even on a preventer dose of Augmentin!! Then GP is saying if this clears it and the results from the lab say its the proper antibiotic - she will put me on a preventer dose of this one!! Not amused as I find Keflex very tiring and yuk generally!!!!

[PMRpro Ambassador in reply to powerwalk]

Have you seen a urology specialist? Yes, the UTIs are due to bacteria - but often there are mechanical reasons for it.

[powerwalk in reply to PMRpro]

A few years ago I did. Its gettin really out of hand - I had posted about it recently if you remember. I can only think the steroids and calcium might be playing a part. Literally no end to it. Can't bear to think what its doing to my insides!!!

[PMRpro Ambassador in reply to powerwalk]

Try reducing the calcium - to 1 instead of two - and drinking more. But above all, insist on a referral rather than just continual abx.

[Canygirl61]

I just had a UTI and completed course of Macrobid on Saturday. I felt awful for over a week, but chalked it up to the UTI. Never considered that my headache and general feeling of being unwell could be from the antibiotic. On Sunday, I spent several hours on the couch with my cozy blanket and my ever faithful heating pad watching old movies. Still have a headache— for days!

[Hidden in reply to Canygirl61]

Hi Canygirl61, I didn't feel too bad before I started the meds... I mean I was uncomfortable and knew I had a UTI, but NOTHING like I felt a few hours after taking the antibiotic. My last dose was yesterday at around 10:00 and my head is still pounding!

[Mks9558]

What the heck! Now I am afraid to take a bath! I’ve always heard that you are more susceptible to UTIs if you take a proper bath rather than a shower and I so wanted to soak last night but just didn’t have the energy to get it all set up( plus I the tub needed cleaning🤨). I have a lovely new bath bomb also just sitting there begging to be tossed in the tub. So I took a pass and come to find your timely warming this morning. Is it true there is some type of relationship between these diseases and UTIs? Or is it the prednisone and UTIs? It is all starting to run together.

Today I plan on working on lists/ which are symptoms and which are side effects- so I can study for the upcoming test!

At any rate, I hope today is more comfortable for you!

Best,

/mk

[Hidden in reply to Mks9558]

Yup, I hear ya MK!!!! I do not know if UTI's are related to PMR?GCA, the Pred, or what. I haven't had a UTI on 30 -40 years and I am not sure what brought this one on? Although I do enjoy a good long soak in an Epsom Salt bath.

Please share your list with us so we can al study!!!!!

[Whippetygirl in reply to Mks9558]

Do not use the bath bomb.

[SheffieldJane]

STOP TAKING IT! Your body and mind have given you a clue, it’s not for you. My bladder irritation all disappeared when I stopped ADCAL.. strange anniversary of when it all began though.

[Hidden in reply to SheffieldJane]

I have SJ, just a little later than I should have... I thought the Pharmacist should know better than my gut... WRONG! xxx

[Rose54]

Just lots of hugs and repeat advice of others

[Hidden in reply to Rose54]

Thanks Rose54! I needed that!

[Valnvaughan]

Try Mannose.

[Hidden in reply to Valnvaughan]

I'll check it out.. Have not heard of it before. Thanks

[Valnvaughan in reply to Hidden]

I started taking Mannose 5 years ago after a year of one UTI after another. Near York, UK I met the lady running the company who after years of UTIs and antibiotics searched the world for help and packages and sells Mannose. Mannose is a sugar, similar to glucose, so safe. It acts like a catalyst, the bugs are attracted to dips in the structure of Mannose, a bit like settling on a sofa. Drinking lots of water then flushes the Mannose and bugs from the body. In practice, I carry Mannose with me everywhere! At the first tingle / discomfort I take a tablet, and again at next wee, repeat. If it goes away I reduce to one or two a day for a few days. You can even safely take one every day as a preventative dose.

I’m not on a cut of profit in case you’re wondering. I buy mine in bulk on line.

Comfort in that department is such a relief.

Valerie

[Hidden in reply to Valnvaughan]

Thank you Valerie! Good stuff!!!!! I have not had a UTI in 30 years but don't want another one!!!!! I will look into this and the info PMRpro sent:

uqora.com/pages/uqora-scien...

Cheers.

[coda123]

I hope you feel better soon, xoxo

[Hidden in reply to coda123]

Thank you coda123.

[patriciawhite]

Euuuurrrrggghhhh not the medicine for you then !!!!!!!!!!!!!! What a nightmare . Is there anything else you could have instead of this one.Ring the doctors and see what else you could have ,that sounds horrendous .

[Hidden in reply to patriciawhite]

Hi patriciawhite. It is/was horrendous! See today's update, I'm taking a different approach.

[MamaBeagle]

B____Y H_LL, mamici - I hope you've read all these dire warnings before you even think of taking the next dose! Note for future - always read side effects of of any new drug before taking it!!! Hope the side effects didn't get any worse - LOADS of water to flush everything out of your system methinks.

[Hidden in reply to MamaBeagle]

Thanks MB, I stupidly took the 3rd dose yesterday morning, but NO MAS! Cheers.

[powerwalk]

I've been given this tons of times for UTIs - I had severe abdominal pain in work and very swollen stomach - but when I went home the whites of my eyes had turned yellow!!! Yikes!! So I'd say my poor liver was screaming at me. So now I can't take it and I'm battling a ton of UTIs that I just can't get clear of. It is good for UTIs if the side effects don't get you. But then its a matter of being on the right antibiotic for that particular strain of infection. People think antibiotics are just that - just antibiotics - we don't realise the affects going on in the background. Good luck with the UTI - hope it clears up.

[Hidden in reply to powerwalk]

Many thanks powerwalk... Maybe if they took a freakin culture they'd know what they are dealing with and could advise accordingly... instead we use the shotgun approach.