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calm

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Posts: 113
Reply with quote  #16 
That is so shocking about the young man who died because of this horrendous drug, it is appalling and scandalous that is still being prescribed
The cost to health service in the complications caused by this drug alone should be enough to motivate change. I was rarely at the gp's and had good health till I was prescribed cipro. The cost for me and those close to me emotionally, finacIally and ofcourse physically is massive. I had no idea in 2006 when it was prescribed to me that these side effects were possible, no warning was given to me . I trusted my gp, that he was going get me better from a uti. I know that somepeople have been ok on cipro but my feeling is if there is a risk it should not be used. How is anyone to know how they may react if they are taking it for the first time? Well one time was too many times for me, and I have said before I will do everything in power ,when I am better ,to expose this link widely as possible. Nobody should end with ic, or worst dead from an antibiotic!

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Susan
Icy

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Posts: 428
Reply with quote  #17 
One has to remember that there is a big difference between being allergic to medicines, having some side effects that one can get over  (diarrhoea, headache, stomach upset, itching rash, dizziness etc)  but when a medication can be responsible for such devastating and serious side effects as Ciprofloxacin and the fluroquinolones do and to such things as collagen, tendons, muscles and the whole central nervous system.... then it is time for the drug companies to accept that they can no longer put people in such danger.

There are so many people all over the world that have suffered from the fluroquinolones and the drugs carry a serious black box warning now. These antibiotics do not work in the same way as other antibiotics - they have a dramatic effect on human DNA and tamper with cellular structure of existing healthy cells. Consequently they can cause serious side effects immediately, sometimes  months later and even  years after they are stopped. The delayed symptoms are as a result of the cellular structures not being able to replicate and repair (as in tendons and nerves). 

Every person who is offered these should be told by their doctor or consultant what the risks are, and not just in the hope that they will look at the leaflet inside them.  But doctors will never do that.  It is too late once one has taken these and side effects often do not come on straight away.

In my case I had these for a whole 6 weeks and it was not until the 5th week my body went into serious meltdown and I ended up in A and E. Many, many years later I still suffer the side effects which came on 2 months after having them.  I was horrified to find others had had the same happen to them.

This is just not acceptable. I never needed these in the first place as I had no infection and that is why they did not work. All they did was made me sicker and with permanent things now that I never had before. The drug company were not interested when I expressed "official" concern over these and I wrote a personal letter to the doctor and to the Health Authority. Everything went very quiet. I late found out that many people had done the same.

There is much documentation about the dangers of fluroquinolones. The drug companies have a moral duty to withdraw these drugs until they have assessed each and every person that has had serious side effects from them. They really are too risky. 

I have lost count of the numbers of people I have read about and liaised with that have had permanent tendon rupture and problems and are left with CNS symptoms after having been prescribed these drugs.

All pharmaceutical drugs have side effects and of course that does not rule out that one can get side effects or symptoms from some natural preparations too,  but anything that can be responsible for such awful damage and death should not be given out as freely as it is.

 There will come a time when these are banned as there is so much pressure on now about them and so many cases of serious damage. Fortunately the Daily Mail featured this fairly recently in the last year. It does not make sense that an overburdened NHS should then be having to treat people for other side effects from these drugs. Until their safety can be guaranteed then it is important that doctors think very carefully about prescribing these.
Eva

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Posts: 265
Reply with quote  #18 
I also had a bad side-effect from Cipro. After 2 wks of taking them I woke up one night screaming in pain - my right arm felt as if it was broken. I had to wear a sling for a while, luckily it got better gradually and the tendon didn't rupture, it has never recovered 100%.
calm

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Posts: 113
Reply with quote  #19 
Thank you so much for describing this so eloquently. It is clear you have researched this thorougly,and I wholeheartedly agree with what youhave said. I am very keen like you for these drugs to be banned it is awful that doctors are still allowed to dish out something so dangerous. If you want to email about this matter, I would really welcome that. Together we can hopefully make a change and stop things like this ever happening again. Thanks again for your posts.
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Susan
pburneside

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Posts: 62
Reply with quote  #20 
The fluroquinolones are some of the most dangerous antibitoics out there.  The damage that has been caused to people long term is truly horrendous. In the States there are various organisations who has spoken out about the dangers of these drugs. This is a USA organisation but there is a representative in the UK - Geof Robinson   http://www.saferpills.org/?page_id=266.

Think there should be a pressure group set up here in UK to get something done about these as the numbers damaged long-term and permanently by these drugs are growing daily. 

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petra
Ashdown

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Posts: 40
Reply with quote  #21 
http://www.amazon.co.uk/gp/product/0007350740/ref=pd_lpo_k2_dp_sr_2?pf_rd_p=103612307&pf_rd_s=lpo-top-stripe&pf_rd_t=201&pf_rd_i=000728487X&pf_rd_m=A3P5ROKL5A1OLE&pf_rd_r=1MGZDPEEGK1ADP07TX8F

A new book out about the pharmaceutical companies and relationship with doctors.

Ashdown
Sel

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Posts: 162
Reply with quote  #22 
So far this year I have taken Cipro twice, finished a 5 day course less than 2 weeks ago, and once two years ago, and possibly before then but  can't remember.
Of course I have read the leaflet inside the packing but wasn't aware of the extent of the damage this antibiotic may cause until I came across this thread. Phew!!!

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Suffers from IC, BC and overactive bladder.
star77

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Posts: 7
Reply with quote  #23 
I'd like to chime in on this Cipro thread.  I was prescribed 3 days 2 x 500mg a day, 6wks ago.  I am now suffering with widespread tendonitis, joint popping and cracking, tingling and buzzing sensations, anxiety, slightly blurred vision, green/yellow stools ever since.  The list goes on.  I have NEVER had any tendon or joint issues, neuropathy or digestive issues in the past.  My GP admits that it is the Cipro but has no idea if and when I will get better.  PLEASE avoid fluoroquinolones if you can, they are POISON.  And it didn't even get rid of the problem which is now suspected to be IC.  I am only in my 30's and I now feel like an old woman because of Cipro, my body feels like a wreck and I can only hope it will get better. 

I am so angry about this as my prescribing GP said the only thing to worry about was 'nausea' .....I did read the insert, phoned up to query the GP but again she said not to worry that Cipro is 'well tolerated' and effects are 'rare'.  I've since found out, going by the forums dedicated to these awful drugs, that these side effects are all too common.  DO NOT TAKE CIPRO!!!!!
Icy

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Posts: 428
Reply with quote  #24 
Hello Star 77,

I am very saddened to hear of your situation after taking Ciprofloxacin - and you only had a very short time on it.  I had 6 weeks worth and that tends to be a standard prescription. They are the most appalling drugs ever.

First, you must go to the GP and ask to fill in the yellow card system (I think this is the one in the UK). It is to register a complaint about a medication. You need to get a response from the drug company (not sure if this is Bayer?) and you need to write to them. They know jolly well what these drugs are doing. Also you could write to the Daily Mail and other news as these drugs were already featured because of the damage they are doing.

You could also contact the people below and I think the representative for UK is Geoff Robinson.  I don't know if there is a group set up for this in UK but in view of their being so many distressed people who have been "floxed" as it is known, there has to be some representation.

http://www.saferpills.org/ 

It is a complete scandal that these drugs are being prescribed and because everyone who is taking them is an individual in isolation, GPs are getting away with saying "they are safe".  They are NOT safe - they are extremely dangerous and damaging. 

It is high time that there was some justice going on for those who are subjected and end up with long-term problems from these drugs. The side effects can be permanent, stay for years and actually you can develop side effects later on, years later on.

Tendonitis which does not repair well, peripheral neuropathy, tinitus, central nervous system problems, brain disturbance and total damage to the gut flora are some of the side effects.

I am sure in years to come these will be banned, but most people cannot wait that long and something should be done now.




Taz

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Posts: 103
Reply with quote  #25 
Hi, I haven't posted in a long time as I don't have IC now (whether I am in remission or cured, I don't know, I just know I have been sympthom free for 18 months now). This post got my attention as I was never fully certain what triggered my IC back in 2010. But I know I was definitely on ciproflaxin (one of five antibiotics I was put on for what seemed like a UTI that wouldnt just go away) for about 8 days and I do remember that my bladder got much much worse after it and stayed like that for almost six months.
This is so shocking, reading what other people have gone through and how we all have this one antibiotic in common.
Lwoods66

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Posts: 3
Reply with quote  #26 
My daughter has IC she was put on cipro 3 years ago for a misdiagnosed uti. After taking cipro she got 100 times worse by day 4 it was awful. She was eventually diagnosed with IC. I have often thought the cipro caused this. She still suffers from other side effects from cipro. How many peopl on here got worse after cipro?
calm

Registered:
Posts: 113
Reply with quote  #27 
I am so sorry to hear about your daughter, I was the cob member who started this thread, my IC was caused by cipro and am very keen to get this medication banned from UK, it is already banned in other countries and has black warnings in several states of US.
I would imagine there are loads of people with IC who's condition was caused by cipro but many of them perhaps don't realise .
Cipro destroys the gut bacteria and I now have a very seriously high oxalate level in my body because the cipro wiped out the bacteria needed to break down oxalates that are found in many foods. I had my oxalate level tested privately earlier this year and it was over 400 times the normal level. High levels of oxalate can cause inflammation and pain. The vp  society has a lot info about oxalates as they are linked to vulvodynia as well as IC.
Your daughter may want to get her levels checked, do push for  the test from nhs as they can do it, I am awaiting results of a 2nd oxalate test done by nhs to see if level has decreased after following the low oxalate diet for several months.
I am making progress with my IC pain by using amitryptiline and specialist IC acupuncture. My intention once well is to expose this link with cipro as widely as possible as would hate to think that innocent people in future could develop this awful condition because of this dangerous antibiotic. If you want to email privately about any of this info please do, my email address is  smallaker@yahoo.co.uk
really hope your daughter feels better soon
best wishes
Susan

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Susan
Eva

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Posts: 265
Reply with quote  #28 

FDA released this warning about these type of drugs, including CIPRO, last month: 

Safety Announcement

[8-15-2013]  The U.S. Food and Drug Administration (FDA) has required the drug labels and Medication Guides for all fluoroquinolone antibacterial drugs be updated to better describe the serious side effect of peripheral neuropathy. This serious nerve damage potentially caused by fluoroquinolones (see Table for a list) may occur soon after these drugs are taken and may be permanent. The risk of peripheral neuropathy occurs only with fluoroquinolones that are taken by mouth or by injection.  Approved fluoroquinolone drugs include levofloxacin (Levaquin), ciprofloxacin (Cipro), moxifloxacin (Avelox), norfloxacin (Noroxin), ofloxacin (Floxin), and gemifloxacin (Factive). 

http://www.fda.gov/Drugs/DrugSafety/ucm365050.htm


Lwoods66

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Posts: 3
Reply with quote  #29 
Quote:
Originally Posted by calm
I am so sorry to hear about your daughter, I was the cob member who started this thread, my IC was caused by cipro and am very keen to get this medication banned from UK, it is already banned in other countries and has black warnings in several states of US.
I would imagine there are loads of people with IC who's condition was caused by cipro but many of them perhaps don't realise .
Cipro destroys the gut bacteria and I now have a very seriously high oxalate level in my body because the cipro wiped out the bacteria needed to break down oxalates that are found in many foods. I had my oxalate level tested privately earlier this year and it was over 400 times the normal level. High levels of oxalate can cause inflammation and pain. The vp  society has a lot info about oxalates as they are linked to vulvodynia as well as IC.
Your daughter may want to get her levels checked, do push for  the test from nhs as they can do it, I am awaiting results of a 2nd oxalate test done by nhs to see if level has decreased after following the low oxalate diet for several months.
I am making progress with my IC pain by using amitryptiline and specialist IC acupuncture. My intention once well is to expose this link with cipro as widely as possible as would hate to think that innocent people in future could develop this awful condition because of this dangerous antibiotic. If you want to email privately about any of this info please do, my email address is  smallaker@yahoo.co.uk
really hope your daughter feels better soon
best wishes
Susan
Lwoods66

Registered:
Posts: 3
Reply with quote  #30 
I don't know what oxalate is. I am trying really hard to find a way to help my daughter she has so much pain some days it is terrible. She had a bladder distention back in April and a lot of expensive medication and she has no insurance. I really think cipro caused this. She has a lot of other pain as well. Spinal pain, tendons,tingling and something going on with her vision the list goes on. She had been given multiple antibiotics for 18 months and then cipro . She got worse after the very first pill but we didn't put it together. By the time she took pill number 7 on day 4 she could barely move it was horrible. The dr said it couldn't be the cipro and keep taking it. I did some research and in less than 5 minutes found out how bad that drug is and she didn't take any more but the damage was already done. I got all her medical records and she never tested positive for a uti but still kept giving her antibiotics. I am so angry that they poisoned her . She was a very healthy athletic girl and now she's not. I also really want to do whatever I can to keep this from happening to anyone else. I know that cipro has helped some people but it seems to have very long lasting and debilitating negative side effects.I will be getting in touch with you by email Sharon and thank you for starting this thread. Laura
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