I had a bladder infection, so GP gave me a drug called Macrobid 100mg twice a day for 5 days...Ive taken this antibiotic before, no problem...
This time ....I took first pill and all seemed ok...I took second one before bed with some yougurt, and I was ok...But after being up for about an hour in the morning HOLY MOSES!!! I started shivering, massive headache, and I couldn't walk very far...Some of my joints were hurting, and my fingertips were numb and tingling. Also a pain under my ribs left side, came on later... This went on a whole day, and I still feel woozy, but better. Aspirin etc would not get rid of the headache, and it was pretty bad..
Why all of a sudden would this drug not agree with me?
Im suppose to have mild lupus, but Rhumetologist pulled me off the plaquinil since January this year....He is kind of a smartass, goes back and forth on issues..I think he is back tracking...BUT maybe I didn't have a reaction to the antibiotic in the past, because I was on plaquinil also then...? I read somewhere if your immune system is messed, it can think the antibiotic is an invader...
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Lupus makes us more sensitive to drugs for some reason, so just because you were ok before with a particular drug, there is no certainty that it won't cause you problems the next time you use it. Great, huh (not!).
Many of us Luppies have reactions to meds previously tolerated....I personally feel that it's often because apparently to become sensitive to something you first ha e to take it, probably without any issues, the body then 'does it's thing' and decides it's an OK substance or not. In our case our immune systems are in overdrive so many substances trigger the 'its not Ok' response.....goes for food as well.....
GP are not so up on the lupus, so the doc is scratching his head right now about all this...He has got me on amoxicillin now, and so far im ok with this antibiotic.. He is an older Gp too, so you think he would know something...He figures the pain under my ribs was my spleen acting up...I have never felt that weak before, and I live on my own, so was scary...also the headache from hell was yuk! I was shivering and just could not get warm...
Its really very scary...I also live alone and when I am feeling under the weather I do get frightened. I had a bad reaction to some anti biotics this time last year. Given some for tonsillitis and my skin looked like I'd been burnt, and was so sore. Plus GP would not do home visit,had to wait till someone could take me and I felt i could make the journey, so spent over a week not eating or sleeping in real pain from severly swollen tonsils! Hope you get to the bottom of it...
Thanks Jamg3916....been a long time since tonsils for me, but I can remember that feeling, its awful! Being weak like that is rotten...Cant even get your sox that are over there, or the extra blanket etc...Good thing I wasn't hungry either, cause couldn't stand long enough to make it...When I finally did make tea (much later), I had to keep sitting down....was a long long process...
I live alone as well and was so scared I would have to go into care home..as was suggested!Had some hellish days dragging myself about on the floor...had to really improvise on the clothing style...looked like Edna the inebriated woman....had to laugh....good job nobody came to house,lol
yup...I thought about crawling on floor...I should have attached dust mops on my butt, so could have dusted the floor a bit when down there I was so glad my landlord never knocked, that's for sure!!!
I can't take antibiotics or any drugs at all and because, with immune system problems it is so difficult to prescribe the right medication, I think doctors have a difficult time, too, especially as what suits one patient doesn't suit another.
I also find I have to rotate medications - as I said, don't take drugs, but homeopathic and even have to rotate them, so body doesn't react badly.
I think (and have read this, too), that a lack of good gut bacteria can exacerbate immune problems and antibiotics just destroy more of these whilst killing the infection. I watched 'Panorama' the other night on antibiotics and how they are just becoming defunct due to over-use and causing antibiotic resistance, so these lupie bodies of ours being so sensitive could be picking up on this, too, and trying to tell you that antibiotics are not the answer.
It's a mine field and I use muscle testing to find out what my body needs and can take because I wouldn't have a clue and I know doctors definitely don't, where I am concerned.
My doctor called me a very complicated lady, but I think we are all becoming more complicated as the world evolves into an unnatural and damaged environment for the human race and other species, too.
I just keep positive and use as many natural approaches as my body needs and can take through muscle testing.
The expression 'listen to your body' is a good one to remember, but we are all becoming so detached from our bodily needs that it is a really hard thing to do without something like muscle testing or dowsing.
However, I know many lupus patients that rely on this and it works for them and keeps them relatively stable.
Good luck with finding your solution or your way to manage it all. x
Ya ,I have the "mystery woman" label myself....I use to be so healthy, and don't like pills....I am into the natural way of doing things as much as possible.. My rhumetologist is mad at me, because I requested to take less of his drugs...He agreed to that, then 6 months later got mad ,and took me off everything (he had a hissy fit)....That's why Im not on any lupie meds now since January (I think the guy is back tracking actually)...Im just on synthroid for my thyroid, and Ive been doing ok, just some mild to medium stuff...He put me on Vitamin D and I swear it helped!
My rheumatologist is in the process of diagnosing me with lupus. Negative bloods have not changed his mind just wants to dot the i's and cross the t's before committing. I have a terrible relationship with medications, especially antibiotics. Am allergic to penicillin. Got to the point I find the symptoms easier to deal with than the side effects. Was also diagnosed coeliac, through elimination diet only. This was seven years ago at the age of 30.
he has put me down as allergic to Macrobid now...So odd. I could feel that drug was wicked..or powerful going thru my body...The amoxicillin feels more gentle...I know its all antibiotics, but its for a bladder thing...
This has caused a lupus flare I am allergic to at least 10 antibiotics and I got this reaction with at least 5 of them, I was advised to increase my prednisolone until the reaction subsided.
I cant take prednisone...Its like being in the 1960's for me...makes things extra loud, bright and colorful...The only thing got rid of the headache was diclofenac, because aspirin didn't do a thing..
It's not just antibiotics with me. I can't touch NSAIDs. Don't know if this can run in families though. My Dad couldn't touch NSAIDs, neither could my Granddad. I have two brothers and neither of them can touch them either. No one but me has or had a problem with other medications, just the Non-steroidals.
I live in Scotland where prescriptions are free. Was prescribed Arthrotec to try but it made me really sick 😢 Thankfully I am fine on Hydroxychloroquine.
I get some of my prescriptions for free, but only because im on disability...(some of the more common drugs) The newer ones seems like I don't get, or must pay something...Im in western Canada...
My daughter had a reaction to plaquinil that had here in an 8 day drug indused coma. She can only take the prednisone now and that has also eaten away at her bones. Recently diagnosed with Avascular norcrosis in both ankles and knee. She recently went for Kemo and had a bad flare that put her back in the hospital fro 4 days. It is Russian rolette out there with Lupus meds. Before next Kemo she will see all Dx blood Reumy and kidney before hand. Be careful and make sure your body is ready before taking anything to do with lupus. I am a caregiver for lupus 13 years and still trying to get ahead of this horrible disease. Praying and get well.
Its a pretty scary disease...and if people have a check list ,cause certain drugs don't agree or work for them, then it makes it even harder when things go bad, but what can you do?....I must repeat myself over and over to GP, that its thought I have lupus...(its like they don't hear you)...One gp understood, but its impossible to get into him (I was lucky one time)...So I better take extra special care of myself, so not too much happens in future...I don't get colds or flu.,.its been many years like since 2010...:Knock on wood"...My lupus is suppose to be mild....Rhumetologist in July, so we will see what he sees after pulling me off Plaquinil....Thanks stripes1967
Think mine was triggered by taking Clopidrogel...also had just had root canal treatment..been off 6 months now but getting better and hope to go back to work in June. You need to accept what's happening and try and work with it.Stopped the steroid injections and quinoric and only taking co - codamol when it flares but it's not very effective.Been managing to do a bit walking each day and have just been eating organic and sparingly.No Vit d in bod but very high iron levels...does anyone know why that is? Feel like a blinking alien!
Isnt that hemochromatosis...or similar spelling? I think its caused from as a result of a gene thing that causes the body to absorb more than a healthy amount of iron. Iron overload can happen as a complication of other blood disorders, chronic transfusion therapy, chronic hepatitis, or excessive iron ingestion... Is your Gp on top of that? I needed more vitamin D..i was not bottomed out, but low...Maybe the iron overload is just a simple thing too, just never know..
Thanks for that...had pneumonia and swine flu last year and was left with liver and kidney inflammation...still got it and tum looks as if I'm 10 months pregnant!Amazing,given that I'm 61,😯
Swine flu is bad....and I know pneumonia is so bad, because my Mom seem to get that easy (I looked after her often)...but when she was young she had pneumonia too...Wow! so must be liver inflammation in front, bloating you...Drink lots of water.,.or some plain water every day...Ive been drinking more water than I use to...
Got doc on wed...thought they would have taken blood off through transfusions by now....methinks GP'S are not sure how to treat this....I've had more help from here actually and try not to let this thing affect my whole life by dwelling on it...but it's a total nummer when it's really active.
Ya the initial thing of being told you have it, takes a while to sink in...then all seems to be ok for a while and u accept it...Until stupid things start cropping up...
yes this site is totally helpful!!!
I don't see much lupus awareness,..or wear a lupus ribbon etc., as much as you do for other health issues...well over here in my part of Canada that is...I have even written to places I have found, no answers back...So this site is great!!!
I know this post is old but everything you say here regarding antibiotics and your reaction sounds like a major herxheimers reaction. Have you been tested for Lyme? Also you mention you can't take steroids neither can Lyme patients. Uk tests don't show Lyme as the test work on an antibody response and that immune response only happens in the first 8 weeks after being bitten. In the state's the culture your blood so it's 100% accurate. Perhaps it might be good for you to look at the Ilads website (INTERNATIONAL LYME DISEASE WEBSITE)
That's interesting, but to get them to test for Lymes be like pulling teeth....I use to hike lots, so you never know...I don't recall any lumps or bumps like a tick, and believe me i use to check ....I wondered if because i had been on hydroxychloroquine for a while, if it changed something in my body, and thats why the reaction??? Isnt hydroxy or plaquinil a disease modifier...? What if you dont have lupus and they put you on that drug? What would it be modifying in your body then? Arggg...I sure never want a reaction like that ever again...
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I was so glad my landlord never knocked, that's for sure!!!
Lyme and lupus oh my
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