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Neurologist Warns About Quinolnes Antibiotic Groups For Eds Patients


Maxine
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Those of you that have EDS with your ANS dysfunction, this information might be of some value.

When I went to the CC the neurologist said this group of antibiotics can affect EDS. The Quinolone group.

It appears that many have been taken off the market for clinical use, but Cipro hasn't.

Here's a link that gives more information on the different types;

http://en.wikipedia.org/wiki/Quinolone

Maxine :0)

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I AM SO GLAD THAT YOU POSTED THIS INFO!!!. Before I knew what was wrong with me, I took a drug from this group last fall and had my first trip to the er. My BP bottomed out and I was in shock. I had hives for 3 weeks. I feel like you solved a mystery for me b/c i though that I had an anaphlaxis (SPELL) reaction. Thanks for sharing MAXINE :rolleyes: Oh but I dont have EDS just POTS although 6 years ago I tested positive for some kind of connective tissue problem.

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Yes, I told my whole family to never take any of them as I ended up in the Er and my blood work came back looking like I had run a marathon... Also there is something in Cadudet that did the same thing to me... Funny although I live in chronic pain I always know when something is up and I'm usually right on.

I'm so glad you alerted everyone here. They can cause serious muscle damage. :rolleyes: this was before my dx. but I was a sick chick trying to find out what was wrong with me...

BellaMia~

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Thanks------ B) ,

My sister in law doesn't even have EDS or POTS, and she said her body was in serious pain all over when she was prescribed this antibiotic.

I can't remember why it was prescribed.

I thought it was pretty decent that the neurologist at the Cleveland Clinic was kind enough to give me this information.

I've had some pretty bad reactions to antibiotics, and the only one I'll take now is ceftin. I don't know what I was given during and after my cervical spine surgery, but that one didn't seem to bother me too much. I dread getting an infection because this affects my POTS, and so do the antibiotics--- :o A double whammy........... :rolleyes:

Maxine :0)

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Thanks for posting this.

I have probably had POTS my whole life, but it was extremely mild and didn't really interfere with my life. I was given Avelox (one of these drugs) and had an incidence of pounding heart, insomnia, and eventually a resting heart rate in the 160's that occurred within an hour or so of my first dose. My life was never the same after that night.

I was given Levaquin a few years later, and was not able to sleep for over 24 hours after one dose. I refused to take quinolones from that point on. I will now make sure my kids' medical charts (they have EDS as well) specify that they never are given Cipro or any others that may be on the market.

I did mention my suspicisons to my doctor at one point several years ago, but he was not aware of the link.

Carolyn

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Levaquin was one of my first major antibiotic anaphylactic reactions... Cipro wasn't long after that...

I have some type of unidentified heritable collagen defect--in the family with EDS.

Nina

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Wow talk about timely! I was given interavenous levaquin last year when my colon popped. When I went on the oral version after getting out of the hospital I started having terrible pain in my hands and feet, and still have a lump in my palm.

A few weeks ago I had a relapse infection in the colon and they gave me cipro instead. After about 5 days my whole body was in severe pain and simple trying to pick up my purse, my shoulder felt like it was going to tear. I didn't finish taking the rest. Then I read the warnings on the info sheet and right there plain as day, it says not to be taken with anyone who has nerve problems or neuropathy, as it can cause irreversible neuropathy. I recently found out that I had small fiber neuropathy, so I should never have been on it. I'm going to have to be really careful for a while, cause it can cause tendon ruptures up to a year after treatment.

So, I have a question? This week my gastro doc and I were trying to figure out which antibiotic I should take, we haven't heard back from Dr. Grubb yet, and I need to stay on the antibiotics until I have my colon surgery in a few weeks. We decided on augmentine. Any one with neuropathy causing their dysautonomia have any experience with it? I'm going to start it in the am. If anyone knows a good broad spectrum one that works on the bugs in the colon, that would be good to know too! Thanks

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Maxine, I looked back through my medication log (yes, I keep one!) and I had been on Levaquin less than a month before my rotator cuff tear. My Dad had told me to take it easy due to the increased risk of achilles tendon tear, but I never thought of my shoulder. I'm beginning to wonder about EDS again after what my PT is saying. sigh

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thank you for that! i had a reaction to an antibiotic last year a couple of day after i became dysautonomic. i had gone to the ER and they had said you have a UTI (though the cultures or testd never showed that.....this was my first experience of ER and their 'get you out of the door asap policy')

i took one antibiotic there and another the day after. the day after i had immiediate diareah and a huge invrease in HR & adreniline. it would not go down and i was pacing the house i felt so full of nervous energy. anyway i got my sister to drive me back to the ER and they took my pulse and asked if i had ever suffered from anxiet....stupidly i said yes (even though i knew this wasnt anxiety) anyway they made me sit in the waiting room for 8 hours before giving me a valium and sending me home. by then my HR had calmed down some.

i dont know the antibiotic namebut i still have the box though its at my parents house.....im going to have to check it when i go there. i wonder if this was some kind of reaction to the antibiotic.......

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I'm sorry I didn't reply sooner. The antibiotic that worked well for me was ceftin, and I dind't experience any significant side affects.

Wow, I didn't realize so many people have had adverse reactions like this. I shouldn't be surprised, as people who don't have POTs have had trouble.

The information I read about this type of antibiotic is pretty disturbing.

I remember taking antibiotics when I was younger every time I had a dental procedure because I was diagnosed with MVP. However they say I don't have MVP now. I remember having to take four antibiotics before the procedure, and fout after. It was crazy! I would get so dizzy when I took them. I thought I was nuts.

I can't remember what antibiotics gave me bad reactions, but I remember being so sick with tremors, tachycardia, and nausea------------I thought I was nuts too. I thought this can't be happening from and antibiotic. I remember asking my husband to take me to the ER, but I was afraid to go in telling the Er docs of my reaction to an antibiotic because I was sure they would think I was nuts. We circled the parking lots of the hospital debating weather or not to go in. We ended up not going in, as we didn't want to risk the old "dear looking at the headlights look" from the doctor.

Maxine :0)

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I FEEL KIND OF SILLY ASKING but what is EDS? I CAN'T FIND IT WHEN I GOOGLE IT? :unsure: I have have reactions to all antiobotic..

I can only take zithromax and even then I'm pappy... :huh: then we have to stop them.

bellamia~

xxxx's

"Have You Hugged A Potsie Today?" :):)

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You can add me to the list too. When I took cipro for a UTI I thought I was dying. My heart was racing and pounding wildly, I was shaking all over from the adrenaline, and my chest felt tight and hurt.

Unfortunately, I can't take very many antibiotics either. I seem to be allergic to Penn., and many others make my heart race and make me wheeze ( I have asthma).

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EDS is Ehlers Danlos Syndrome. There's been many posts on here about it, and quite a few POTs folks have EDS also.

"Individuals with EDS have a defect in their connective tissue, the tissue that provides support to many body parts such as the skin, muscles and ligaments. The fragile skin and unstable joints found in EDS are the result of faulty collagen. Collagen is a protein, which acts as a "glue" in the body, adding strength and elasticity to connective tissue.

Ehlers-Danlos syndrome (EDS) is a heterogeneous group of heritable connective tissue disorders, characterized by articular (joint) hypermobility, skin extensibility and tissue fragility. There are six major types of EDS. The different types of EDS are classified according to their manifestations of signs and symptoms. Each type of EDS is a distinct disorder that "runs true" in a family. This means that an individual with Vascular Type EDS will not have a child with Classical Type EDS."

EDS just took a very close friend of mine on Aug. 25th. Her aorta ruptured. She went to Three different emergency rooms, and each time the doctors were dismissive. At one visit to the ER she called me right around midnight. It was warm that night, and she had been outside. She started to feel really bad, so she went home and took a cool shower, but her heart started pounding, so she went to the ER. she wanted me to come to the ER and advocate for her----but she called 5 minutes later and said her BP and heart rate went down and she was going home. Her aorta wall was so thinned that it ruptured. Did the high BPs cause an already vulnerable aorta to rupture---------------probably. I'm still so angry about this, and it's pretty sad this woman of only 41 years old wasn't taken seriously.

She was diagnosed with hypermobile EDS. Hypermobile and Classical EDs can have vascular complications also. It's more likely with vascular type EDS, but crossovers of one type of EDS with hypermobile and classical can happen, and NIH is currently having studies on this, and other issues with connective tissue disorders. I was in the NIH connective tissue study Aptil of last year. What I learn was very valuable, but unfortunately doctors don't take it all that sriously STLL. CRAZY!

Maxine :0)

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Maxine,

I remember reading about that post about your friend. I am so very, very sorry. My heart goes out to you and her family. You must be really hurting right now, I wish I could reach right through my computer screen and give you the (((Biggest Hug))) right now. Also, thank you for thaking the time to educate me about this terrible thing. I wish I could take your pain away Maxine.

I once heard someone say forget all the terrible memories that happened and bring all the happy memmories back and cherish them. What a Gift it was that this person chose you to be one of their special friends. Having lost a special friend last year one way too young, 29 my cardio's blood work person. Oh did I love this special person! and did I take it hard!!!!!!!! My doctor told me we are all but hanging by a thread, anyone of us could be taken out at any moment. She had sooooo much life to live and I have such a crappy quality of life to live and I told him I wish it had been me..... She looked like one of my own kids and I told her she could be one of mine. We laughed, cried, and hugged and I did get to tell her I loved her. I know she is dancing from cloud to cloud now and watching over all those she knew and loved. I call her an angel... she looked just like one.

We need to live each day like it is our last and tell everyone we love that we love tham as we never know if we will ever see them again.

Life is so very precious.

My thought s and prayers are with you Maxine....

I'm here if you need another friend...

I also noticed you have added a guitar at the bottom in memory of your brother.

I'll say a prayer for him also.

You do a nice job inserting pics.

Hang in Maxine, we get by with a little help frome our friends....

love,

BellaMia~

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Thank you so much BellaMia-------------I appreciate all the support I receive from all of you.

I'm sorry you had to lose a special friend so young, it's especially hard when their young isn't it...... :)

BIG HUG TO YOU BellaMia.

I do feel quite alone in my stuggle with losing my friend. I haven't really had much of a reaction from family or other friends. I don't bring this up as a topic of conversation, but when it came up the response was dry and cold. My husband has been supportive, and his family hasn't really said much but they are usually supportive. My family has been distant and cold throughout all of this.

I truly appreciate the support of those of you who have responded, and the EDNF (ehlers danlos national foundation) have been very nice. They posted her obituary on their website. It's almost like some people are repulsed by these disorders---POTS---EDS----the spine instability. This is how it seems---but it's not just me, it seems a lot of you, along with my friend dealt with the same thing. This is just how some people look at you.

Only we can understand the way our bodies betray us, and how any little change can affect us so differently.

Thanks again for your thoughts and prayers.

Maxine :0)

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Thanks for the heads up! I think I have heard of this before, but not sure... I haven't had much of antibiotics since I have had any idea what was going on with me.

From the list I think I only have had Avelox before. I can't remember my reaction... I know that it was one of several antibiotics for a very stubborn upper resp./strep type infection I had for at least three months. I want to say that the Avelox proved to not be my friend for stomach reasons or something, but I can't remember...

I will have to remember this for the future!

:)

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Thanks for the heads up! I think I have heard of this before, but not sure... I haven't had much of antibiotics since I have had any idea what was going on with me.

From the list I think I only have had Avelox before. I can't remember my reaction... I know that it was one of several antibiotics for a very stubborn upper resp./strep type infection I had for at least three months. I want to say that the Avelox proved to not be my friend for stomach reasons or something, but I can't remember...

I will have to remember this for the future!

:)

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Thanks for the heads up! I think I have heard of this before, but not sure... I haven't had much of antibiotics since I have had any idea what was going on with me.

From the list I think I only have had Avelox before. I can't remember my reaction... I know that it was one of several antibiotics for a very stubborn upper resp./strep type infection I had for at least three months. I want to say that the Avelox proved to not be my friend for stomach reasons or something, but I can't remember...

I will have to remember this for the future!

:)

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