I was prescribed this yesterday as 5 days of Trimethoprim hasn't completely cleared my bladder infection. Since waking this morning, I have felt very weak and unwell. This may be the infection, although my temperature is fine. Or it could be a Sjogren's flare. But it seems a coincidence that I have just started taking this drug.
Any thoughts?
Kathyx
CALL YOUR DOCTOR - Macrobid, Macrodantin, etc and any sulfa antibiotics as well are contraindicated in patients with autoimmune diseases. They can cause flares, and have also been implicated in many cases of drug-induced Lupus. They make many of us horribly ill (including me). Unfortunately, they are the most common type of drugs used to treat urinary tract infections - but there ARE alternatives.
Google "Nitrofurantoin lupus" or "Nitrofurantoin autoimmune" and you will get buckets of information.
Doctors should know better than to prescribe this class of antibiotics to autoimmune patients, but they don't. You have to look out for yourself!
If you are on methotrexate or other immune-suppressing medications (Plaquenil is not usually a problem), double-check any antibiotics for cross-reactions - usually you have to stop taking the immune-suppressant while you are on the antibiotics, or your kidneys can be severely affected.
Drugs.com has a great drug interaction-checker.
Oh no! My primary is on vacation and I had to see the nurse practitioner who looked at me as if she didn't believe a word I said. I told her that I reacted badly to Levoquin and another drug in the quinolone family and she ordered cipro. She gets on her cell phone and looks it up and says it is ok. I go to my pharmacy and he told me that I should not be taking it so he calls her to change it and what do I get?? The very drug you are talking about in this thread.
I have taken 2 doses so far with no reaction and now am not sure if I should continue the last few doses. I am only on Plaquenil so maybe I will be ok.
Thanks Sleepy in Seattle for the reminder.
Sleepy
Thank you very much for your advice. I've been to out of hours and been told to stop the Macrodantin. The good news is, my sample doesn't show any infection now, so that's good. I just need to get over the effects of the drug, which are quite debilitating.
Cassi, sorry to hear you are in a similar situation.
Back to bed for me now.
Kathyx
Cassi, not EVERYBODY necessarily reacts badly to Macrobid/Sulfa drugs - you might be okay - but a bad reaction is EXTREMELY common in autoimmune patients. I didn't start out being sensitive to them, but became so as my Lupus/Sjs progressed, and now if I take even one dose, I feel AWFUL, so they're all on my "no-no" list now.
I used to get chronic UTIs but those have gotten much better with treatment of my A-I diseases (that's another long story about trigionitis, etc). I also take D-Mannose if I feel even a tiny TWINGE of a UTI, and that is amazingly effective. With one exception, I have not had a UTI or had to take any antibiotics in several years.
If you have trouble with UTIs, search the forums here for "UTI" or "bladder" and you will find lots of really useful information. It's yet another common ailment for us, unfortunately.
Sorry you guys are suffering...I hope things work out well for you soon!!!!
Sleepy in Seattle--
Wow - did your post hit home!
I have been dealing with a UTI for a month! Cipro was the first drug; still infected: sulfa drug while waiting for culture result to came back; results showed the type of infection I have is resistant to these two drugs!! Put on Macrodantin for 7 days. Now 4 days later--urine check showed I still have an infection. Dr. just prescribed augmentin (not sure of spelling). So I"m off to drug store this afternoon for the 4th round of drugs!!
I guess I need to do some research of my own to share with my urologist; any suggestions?
I also noticed my legs breaking out in red bumps, then tiny blisters and now to itchy blotches--possibly a reaction to one of the drugs? But which one? oh my gosh.
Some days it is so discouraging!
Oh,I should mention------ I have an appointment with Dr. Vivino (Sjogrens specialist) on Friday and I will take all this information with me. Curious to hear his take on this, will let you know what I find out.
I use to to get chronic bladder infections, I could not tolerate Macrodantin, am allergic to sulfa and was prescribed Cipro thereafter.
OK, just saw this one today.
UTIs are no fun.
All of the antibiotics (as far as I know) that are used for UTIs can have some rare but dangerous side effects.
I'm glad Katy is OK.
I NEVER felt a thing from the Macrobid (Nitrofurantoin). I however took it every day prophyactically for three months, and then about every six weeks for the next two years.
I now have profound disabling peripheral neuropathy. One of the possible and rare side effects. At least I didn't die. People do.
Would I have taken it had I known of this rare side effect. YES.
Everything, up to and including aspirin, can kill someone who has a violent reaction. Peanuts kill people constantly.
So I don't refuse something that may help me because others have had a rare side effect.
I have also had a septic kidney infection: E-coli in my blood. I don't want that EVER AGAIN.
I had the kidney infection at 63, the first ever, and UTIs started when I was 65, the first ever! I guess I'm a late bloomer.
If I had had a side effect I knew was happening, perhaps it would be a different story.
It is also possible that my PN is caused by my auto immune conditions......even tho' I am never sero positive.
But my Rheumatologist, the one who found my Immunodeficiency, speculates that it may have been the Macrobid.
By the way, I've taken the Macrobid AGAIN since knowing what it may have done. I simply cannot tolerate the thought of a UTI, which are ALWAYS E-coli for me, migrating to my kidneys.
We each choose our own poisons, in many ways.
Some day they may know through genetic and other testing, which drugs we should avoid and which will be effective.
AND I take D-Mannose every day. D-Mannose stops E-coli from binding to the walls of the bladder.
I haven't had a UTI since I started the D-Mannose a year ago.
Do I know that the D-Mannose is keeping the UTIs away? No. But NIH research shows that it is effective, I don't have them now, and that makes me happy.
Hugs
Elaine
Elaine
I second what you say about asprin. That's what triggered my first asthma attack, which was terrifying.
Kathyx
All e coli infections are not created equal (and I am placing a link to a a very informative e coli question and answer paper from Kansas University website).
The very serious strains of e coli that have the shiga toxin can be death defying. It sounds as though Carolina had a tangle with one of those!
Carolina: I have heard how D mannose can really help prevent UTI. All power to ya!
I sometimes wonder if the e coli that (mostly women) can get from translocation to bladder, which would many times be "our own" e coli might not be cause of an autoimmune reaction - if it is our own e coli in the wrong place so to speak then it is attacking self? - just sayin'.
Also if it would be wiped out with antibiotics in our gut, it would affect some of our vitamins. Here is what it says in the link:
.....The presence of E. coli and other kinds of bacteria within our intestines is necessary for us to develop and operate properly, and for us to remain healthy - E. coli, along with other species of bacteria, provide us with many necessary vitamins for example. The bacteria make the vitamins, and we gladly absorb them. We pretty much depend upon E. coli in our intestines for our source of Vitamin K and B-complex vitamins......"
University of Kansas link:
http://people.ku.edu/~jbrown/ecoli.html
We had a 20 minute downpour here so the air is much clearer - after all that smoke it is quite a relief!
I took a load of macrodantin over the years for my bladder issues. My bladder issues were called Trigonitis and you can look this up on the internet. It is basically an inflammation of the tube or urethra that carries the urine from the bladder when we urinate. I swear that it is an autoimmune issue as it affects the little glands that secrete which are located in the urethra.
As far as the macrodantin goes, not everyone has a problem with the drug. I finally quit taking it because I worked long term care and all of us nurses noticed that the patients on this drug were more apt to get pneumonia. We looked up the drug and found out that, indeed, patients on this drug are more prone to have pneumonia for some reason. Irish
Macrodantin did not get rid of UTI; now I'm on AMOX TR-K CLV (generic for augmentin).
This is the 4th med in a little more than a month! Two cultures have been sent away for analysis, should have the results from the second one in the next few days.
I'm going to ask urologist about D-Mannose and Cystex.
Thanks for the information!
I started having UTI's in my late teens and now at 65, still dealing with them. The urologist doesn't question when I call to say I have another UTI! Nurse just says, "come on it and give us a sample." ( no appointment needed)
Hi Quilt, no fun for sure.
The thing is I NEVER had a UTI until I was 65!
And I had my first (and only) Kidney infection at 63.
Just way weird.
And then diagnosed with IC, at 66.
So.....
But the D-Mannose has stopped the UTIs for now.
Still waiting to get started with the infusions of IgG.
Hoping that is a 'miracle cure'. But not expecting that.
Hugs
Elaine