I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: Henry P Snicklesnorter on August 15, 2011, 08:21:50 PM
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So good to see and hear from you but WOW! How dreadful!! This is terrable news. I (to my knowledge) have never had that drug but i have experienced the bouncing vision, vertigo, and the 'town drunk' walk. It's horrible and debilitating. I don't know what caused mine, and i still have vertigo at times, but i can sympathize with you horribly. I wish you wellness and health and that once that stuff is completely gone from your system and you have time to recover, you are over those effects. That is so wrong and I'm so sorry :'(
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OMG, I just can't imagine!
What causes gentamicin toxicity? Why would you get it and not someone else? Do they know? I'll go and have a look at the links and maybe answer my own questions!
Could you explain more about the rehabilitation routine they have prescribed for you? That sounds interesting.
Is it difficult for you to type on the computer? I guess if you hold your head perfectly still while typing, perhaps there's not a problem?
I have suffered from motion sickness all my life, and it's worse the older I get. So, what you are describing is my idea of pure hell.
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Henry, that is awful. In the UK that is what they give us, but I never thought you could get things like this. I feel for you and I hope that thinks get better. Some of these meds they give us have a lot to answer for. Please keep us informed, I wish you a speedy recovery.
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Oh my gosh! Could they have used a different antibiotic? Too late now. We are at their mercy. If untreated you die. What do we do.
I hope you beat the odds and recover 100%. :pray;
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Henry, I am very sorry what you go through
and I do hope that you are lucky
and the side-effects of “Gentamicin”
disappear and you recover fully.
Thank you for alerting us to the side-effects of “Gentamicin”,
it is very much appreciated.
I send you my best wishes, Kristina. :grouphug;
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:grouphug;
I hope all your treatments work quickly and well! :cuddle;
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This is very upsetting and I am just so sorry to hear what you're going through.
Thank you for taking the time to warn others.
I hope you come out ok and recover - best wishes to you. :cuddle; :cuddle; :cuddle;
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That drug made me feel weird, also it made my palse vibrate like a thrill.
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Henry, so sorry to read about all of this. :cuddle;
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Gentamicin toxicity may occur because of an individuals susceptibility, but more often is a result of inappropriate dose rates and/or length of treatment.
Before I got ESRD, I had gotten chronic sinusitis (which I still have).
Doctors used to prescribe Gentamicin topically (nasal irrigation) to treat sinus infections. They had to stop when even topical Gentamicin caused these neurological symptoms. Even though it was just being sprayed into the nose, enough of it got into the bloodstream to cause problems.
If you have a life-threatening infection, you take the risk.
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Just as everyone else, I feel so badly about what has happened, but thank you for posting this. Neurological disorders are the worst. I take Mirapex (not on D, a spouse) and I know how those disorders feel. Vancomyacin seems to be a pretty popular antibiotic as it a "broad spectrum" antibiotic. Gos, I hope there is something down the road they can do to help you out. Also, this shows the importance of keeping clean. As you said, your home is very clean but it takes only one little, teenie,tiny bacteria.Do you use gloves? We are a in in-center, but I imagine that is recommended for PD, or do they get in the way too much? You did the right thing on your part, sorry this happened too you. Thank for sharing and it most likely going to be helpful to someone who may eventually come across who may be given this.
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Henry, I wonder how you are doing ?
I do hope you recover well and I send you my best wishes,
Kristina. :grouphug;
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Glad things are improving Henry. Keep up the exercises. :clap; :clap;
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Hello, Henry,
I am so glad that you do your rehabilitation-exercises
and I do hope they become easier with time and you get great results.
Your situation reminds me of the time when I suffered the stroke and was half-sided paralyzed;
I could not speak, was unable to care for myself and was put in a wheelchair.
I was then told by doctors that nothing could be done anymore to improve my situation.
Of course, what they told me was not true and all I needed was rehabilitation-exercises to have a chance
and get out of the wheelchair and further rehabilitation-exercises to restore my languages as best as possible.
Of course, it was not easy and took a very long time, but it was possible.
I think if we put our mind to it, we are always in with a good chance.
I wish you the best of luck and I do hope you recover very well.
Best wishes from Kristina. :grouphug;
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Gentamicin toxicity to the inner ear (vestibulotoxicity) is an old story. Not everybody is sensitive to it; evidently there's a genetic mutation that makes some folks (like yourself) more sensitive to it.
BTW, gentamicin is also known to be nephrotoxic. If you have ESRD but can still make urine, gentamicin could deliver the coup d'grace and wipe out your residual kidney function. And if you get a kidney transplant, gentamicin could hurt it.
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I have just been reading that “Gentamicin toxicity to the inner ear is an old story...”
and I wonder why Gentamicin is still used on patients
when it has been known to be the cause of such misery?
I do not comprehend. Is there an explanation?
The reason why I am so concerned is, that, whenever in the past I have been admitted to hospital,
I certainly was not well enough to be alert enough to check-up the medication I was given,
so I had to rely on the goodwill and integrity of doctors at Accident and Emergency.
Since “Gentamicin toxicity to the inner ear” is such an “old story” why then is it still in use
and has not been withdrawn from medical usage?
How can anyone be safe at their most vulnerable when they can be given a medication
which is known to be the cause of such terrible suffering and misery?
Is there a logical explanation?
Thanks from Kristina.
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have just been reading that “Gentamicin toxicity to the inner ear is an old story...”
and I wonder why Gentamicin is still used on patients
when it has been known to be the cause of such misery?
I do not comprehend. Is there an explanation
If they pulled every prescription drug that ever caused a serious reaction or death we'd not even have Tylenol and we'd all be dead. It is just a very sad thing when someone has a severe reaction to a drug, but with so many people in this world and so many different genetic makeups we are bound to hear terrible stories about drugs.
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What you say is interesting and I note the points you make. But, please consider this.
Let me take a medication I know about called “Istin” (antihypertensive medication).
This is an expensive medication and is not normally prescribed on the NHS (National Health System).
This medication contains the basic ingredient which controls the blood pressure,
but it also contains other ingredients which minimize to a large extent side-effects.
This medication obviously succeeded the trials it had to go through before being made “legal”.
It then becomes possible to take away one or more of the additives
in order to reduce the cost and therefore make it available under a different name to the NHS.
This new medication did not have to go through any trials.
So, we have a new medication on the market and we have no idea of its side-effects
and what damage, if any - long term or short term - it is causing to the patients who take it...
I am extremely interested in this because I suffer from multiple drug-intolerance
and I have had many allergic reactions to many medications,
and the most important medication I have to avoid is Penicillin
because it could kill me if I was given it.
I always have to keep a list of the medications which I am intolerant to.
I was very concerned when I read about Henry’s problems because of "Gentamicin",
because I have heard of someone else whose hearing in one ear was very badly affected
from taking a heavy antibiotic and it makes me wonder whether all this would have happened
if a more expensive brand would have been prescribed,
which had the ingredients to possibly minimize or avoid problems occurring ?
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I have just been reading that “Gentamicin toxicity to the inner ear is an old story...”
and I wonder why Gentamicin is still used on patients
when it has been known to be the cause of such misery?
I do not comprehend. Is there an explanation?
There are some infections that are resistant to other antibiotics.
There aren't as many oral antibiotics that work on so-called "gram negative" infections like Pseudomonas. Gentamicin is particularly good on gram negative infections.
I had a Pseudomonas urinary tract infection once. The culture showed that this particular strain was resistant to every antibiotic except IV imipenem or IV gentamicin. Nothing else touched it.
I'm allergic to penicillin, so there was some question if I could tolerate imipenem. If I couldn't, then I would have been forced to try gentamicin. Fortunately my immune system didn't "notice" how similar imipenem is to the penicillin class, and I was able to take that.
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Thank you Rightside for this interesting post.
I had not thought that there may be antibiotics so similar to Penicillin,
that there may be a chance that my system may “notice” its similarity
and perhaps react as if it is Penicillin.
I don’t know if such an antibiotic would react in me the same as Penicillin,
but it is well worth knowing this could be a possibility.
I am so glad you mentioned that because I had no idea
and no one medical ever told me that, thanks again.
Henry, I send you my good wishes
and I do hope you recover well.
Best wishes from Kristina. :grouphug;
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I thought you were still off bashing the wilderness Henry. Turns out you're having mad adventures right there at home. I hate to hear about it, it sounds bad and yet as usual you sound ... unconcerned. You're a tough one.
Now that you can drive again, does that mean you're back at work?
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I entirely agree with you, Henry.
Here is my example to back this up.
A specialist put me on Retuximab-Infusions because they thought
it might stop the Lupus/SLE/MCTD-flare-up
which they thought might be contributing to my kidney failure.
The specialist never mentioned any side-effects of Retuximab-Infusions.
Naturally, I went ahead, not least because I was desperate to save my kidneys.
What I found out later was that Retuximab-Infusions
can cause very serious brain-damage and/or death,
so, the specialist never gave me the choice.
If he had mentioned the side-effects of Retuximab-Infusions,
I would have had a chance to consider other options.
But he denied me that chance.
I was very lucky that it did not cause me brain-damage and/or death.
But I did suffer very bad side-effects from these Retuximab-Infusions,
in the form of a very bad and unusual type of Lupus/SLE/MCTD-flare-ups.
The flare-up repeatedly hit me in short bursts in a variety of forms
which is not the usual type of Lupus/SLE/MCTD-flare-up for me,
and this went on for almost two years before my body calmed down.
When one is prescribed medicines which are issued by the chemist
there is always a pamphlet in the medicine which explains the side-effects,
and so one has the chance to be informed about the side-effects.
I agree with you that more should be done to inform patients
about the side-effects of proposed treatments.
I wish you very good luck, Kristina. :grouphug;
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Henry, keep at it.
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Thank you Rightside for this interesting post.
I had not thought that there may be antibiotics so similar to Penicillin,
that there may be a chance that my system may “notice” its similarity
and perhaps react as if it is Penicillin.
I don’t know if such an antibiotic would react in me the same as Penicillin,
but it is well worth knowing this could be a possibility.
In particular, you should be careful when taking the earlier antibiotics in the cephalosporin class, such as Ceftin. Part of their chemical structure is similar to penicillin, and there's a chance that if you react to penicillin, then your immune system will react to the Ceftin too.
The newer cephalosporins are so different from penicillin that the chance of this is minimal.
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The last and final bout with peritonitis that ended J's PD was exactly pseudomonas infection. He was treated with Gentamicin cause no other antibiotic would knock it out! He had no side effects but was monitored by an infectious specialist continously.
Dont know how I missed this thread, but hope you get through this Henry! This was not right in what "they" failed to do! Good Luck!
lmunchkin :kickstart;
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Thank you Rightside for this interesting post.
I had not thought that there may be antibiotics so similar to Penicillin,
that there may be a chance that my system may “notice” its similarity
and perhaps react as if it is Penicillin.
I don’t know if such an antibiotic would react in me the same as Penicillin,
but it is well worth knowing this could be a possibility.
In particular, you should be careful when taking the earlier antibiotics in the cephalosporin class, such as Ceftin. Part of their chemical structure is similar to penicillin, and there's a chance that if you react to penicillin, then your immune system will react to the Ceftin too.
The newer cephalosporins are so different from penicillin that the chance of this is minimal.
Thanks for the tip, Rightside, that was very kind of you.
I shall make a note of this !
Thanks a lot again from Kristina.
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Doctors are known to be reluctant to discuss side effects of meds with patients in advance. They're afraid of a placebo-type effect where if they tell the patient it can cause a certain symptom, the patient will believe he's experiencing that symptom.
And clinical trials of these meds have proven that. When they've give the med to some patients and they give the placebo to other patients, it's amazing how many side effects the patients got from the placebo!
For example, in clinical trials of Gabapentin/Neurontin vs. placebo, the following side effects were reported from the placebo: 7.5% of patients reported dizziness from the placebo, and 5.3% of patients reported drowsiness from the placebo. Now that's a highly potent placebo. ;D
A smartphone is a good investment. You can call up information on a med's side effects anywhere you happen to be. Even in the hospital, if they let you use your smartphone.
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Thanks for your concern Henry, but this was in 2009, when he was doing PD. He is now doing Home hemo (NxStage) and all is well in the NxStage land. Glad that you are slowly recuperating! We were told of the side affects, but took the chance, cause the alternative could have been worse, Possible Death.
Actually, J. has had some of those symptoms long before the P.Peritonitis. But God is good, and all went well with J afterwards. Just hope & pray that you get better!
God Bless,
lmunchkin
:kickstart;