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rabraham09
02-03-2009, 03:22 PM
How many people have heard of this condition? How many people know that Hydroxychloroquine is also called HCQ and that it is the generic for Plaquenil? And finally, how many people know that there is a recommended safe dosage for Plaquenil (HCQ) that might prevent a patient from experiencing irreversible loss of vision?

Let's have a discussion on HCQ retinopathy.

iseedeadmonkeys
02-03-2009, 03:32 PM
Hello yes i was told about this by my consultant before i took it, he gave me a leaflet on plaquenil- hydroxychloroquine HCQ,

Im sure everyone who takes it was given a list of side affects and what it may do to your retna upon taking it,
Also it is stated on the information sheet that a patient should have regular eye checks

ISDM

rabraham09
02-03-2009, 08:10 PM
Hello yes i was told about this by my consultant before i took it, he gave me a leaflet on plaquenil- hydroxychloroquine HCQ,

Im sure everyone who takes it was given a list of side affects and what it may do to your retna upon taking it,
Also it is stated on the information sheet that a patient should have regular eye checks

ISDM

The drug itself comes with a brochure that describes possible side effects. It does not mention anything about a recommended safe dosage. Just for your information, my wife sustained HCQ retinopathy and lost her eyesight as a result. At the time the drug was prescribed she was assured that the dosage was safe. However, it turned out that the recommended safe dosage indicated that she was using too much. The doctor did not seem to know this because he never taled about a safe dosage until after she had lost her eyesight. Did he know about it before? Not likely. So, based on your comments I would say that you have a lot to learn about HCQ retinopathy.

iseedeadmonkeys
02-03-2009, 08:20 PM
Well there we go, why dont you fire away with it and tell us what the recommeded safe dose is then!

im sorry to hear about you wife, that must be awful

iseedeadmonkeys
02-03-2009, 09:06 PM
Common side effects:
Irritation of the Stomach or IntestinesLess Severe

Infrequent side effects:
Disease of the Retina of the Eye Severe
Blurred Vision Severe
Corneal Scar Severe
Disease of the Cornea of the Eye Severe
Discoloration of the MouthLess Severe
ItchingLess Severe
Discoloration of NailLess Severe
Hair LossLess Severe
Bleached HairLess Severe
Skin DiscolorationLess Severe
DizzyLess Severe
RashLess Severe
Loss of AppetiteLess Severe
Head PainLess Severe
Feel Like Throwing UpLess Severe
Throwing UpLess Severe
DiarrheaLess Severe
NervousLess Severe

Rare side effects:
BronchospasmSevere
Hives Severe
Muscle Weakness Severe
Seizures Severe
Giant Hives Severe
G6PD Anemia Severe
Low Blood Counts due to Bone Marrow Failure Severe
Decreased Blood Platelets Severe
Deficiency of Granulocytes a Type of White Blood Cell Severe
Decreased Neutrophils a Type of White Blood Cell Severe
Blood Disorder Severe
Mood Changes Severe
Mental Disorder with Loss of Normal Personality & Reality Severe
Acquired Abnormally Colored VisionLess Severe

SuperGiv
02-04-2009, 05:26 AM
You have to have regular eyetests to keep an eye out (excuse the pun) for the illness, but I got told it was very rare.
I'm assuming there isn't a safe dose as such because im beginning on 200mg (which i think is the lowest for lupus) and I still have to take the precautions.

rabraham09
02-04-2009, 09:27 AM
Well there we go, why dont you fire away with it and tell us what the recommeded safe dose is then!

im sorry to hear about you wife, that must be awful

I sense a cynical response here but I may be mistaken. My effort is to try to show that a) every doctor has a different opinion about what information the patient should be given because my wife's physician did not see it fit to tell her all about the drug, b) I failed to do my own homework and c) that patient's should take an active role in their healthcare issues.
Sensing your attitude, I would suggest that the Lupus Foundation of America can provide you with the article by Dr. Susan E Marren on Hydroxychloroquine Retinopathy in Lupus. Failing that, I would recommend that you get on to the American College of Rheumatology that published another article on the recommended safe dosage.
What I had wanted to do here was to share my experiences with others but it appears that you have no concern to hear it. Maybe they do things differently in the UK but here, people try to help each other.
I hope this puts an end to this dialog and I thank you for the message.

Sincerely,

Rudy

iseedeadmonkeys
02-04-2009, 09:34 AM
Nah i think you have got me all wrong here, i dint mean anything by the post i wrote, i dont get how ppl read attitudes through what they write?

I was interested otherwise i wouldnt of put up what i found on the matter, i guess no one really gets my sence of humour anymore,

Anyway i do want to hear your story so fire away please? better?



8)

lmangusrn
02-04-2009, 09:59 AM
The first day I was diagnosed my doctor discussed this with me. She explained the side affects of the medicaitons and told me that her standard was for me to have my eyes tested every 6 months. She started me on the Plaquenil and I had one week to get my baseline eye appointment done. She even told me to make sure that whoever I went to knew about the drug, side affects and the problems it could cause. I found a local doctor that has specialized in this and he explained things even more. Every time I see my doctor she asks about my eyesight and also when my next appointment is. I feel she is really on top of things. Maybe I am fortuante to have a great doctor.

rob
02-04-2009, 10:08 AM
Hello all,


Sometimes, people's thoughts, intentions, humor, and ways of expressing themselves here comes across in a way that the person did not intend them to. People from different parts of the world and of different ages have very different ways of expressing themselves. And since we are speaking through the written word here, without the benefits of language inflection and facial expression, there will be misunderstandings from time to time. We need to keep that in mind and remember that we are all here for a common goal-treating, living with, and understanding Lupus. There's no reason to end this discussion over a miscommunication.

Rob
Moderator

rabraham09
02-04-2009, 10:21 AM
You have to have regular eyetests to keep an eye out (excuse the pun) for the illness, but I got told it was very rare.
I'm assuming there isn't a safe dose as such because im beginning on 200mg (which i think is the lowest for lupus) and I still have to take the precautions.

First, keep in mind that I am not a doctor so you should talk to your doctor if I have raised your concerns about this drug. I got into this forum to share my experiences with others. Precaution is the word. I agree that based on my personal knowledge, 200 mg is safe and hardly likely to cause any serious side effects. My wife was started on the same dosage but it was later increased to 400 mg. This was thought to be relatively safe but my wife lost her eyesight after being on this dosage for six years. The question is why did it happen when she was seeing an ophthalmologist on a regular basis? Experts reviewed her medical records.
When she started using the drug she weighed 124 pounds. At 200 mg that was good but it was not when the dosage was increased to 400 mg. Would you believe it that bodyweight may determine the dosage? At 400 mg per day, it would be safe only if her bodyweight was 138 pounds or more but she was only 124 pounds. Further, she was maintained on 400 mg even as her bodyweight dropped to 110 pounds.
The Lupus Foundation of America published an article by Dr. Susan E Marren on Hydroxychloroquine Retinopathy in Lupus which describes the safe dosage. Another article was published by the American College of Rheumatology on the same subject. Both of these may still be available.
One other point. When toxicity starts, it may produce such a subtle change that the eye doctor may not see it in a regular exam. My wife's eye doctor claimed that he did not see a significant change. However, a visual field test indicated significant loss of peripheral vision one year after she had started the drug. He ignored it probably because he did not see a visual change in his examination of the fundus. But the patient was complaining of visual problems. He should have done an angiogram but did not.
I was so convinced that medical mistakes had occurred that I wrote a book about my wife's experiences. She is legally blind but she has lost so much that I have to be her constant guide. I just think that people ought to have more information about these things but I have to be careful not to give the impression that all doctors make mistakes; it is as far from the truth as one can get. Most doctors have a genuine concern for their patient's safety and will provide the best medical care. I am sure your doctor is among the best.

Good luck,

Rudy

rabraham09
02-04-2009, 10:38 AM
The first day I was diagnosed my doctor discussed this with me. She explained the side affects of the medicaitons and told me that her standard was for me to have my eyes tested every 6 months. She started me on the Plaquenil and I had one week to get my baseline eye appointment done. She even told me to make sure that whoever I went to knew about the drug, side affects and the problems it could cause. I found a local doctor that has specialized in this and he explained things even more. Every time I see my doctor she asks about my eyesight and also when my next appointment is. I feel she is really on top of things. Maybe I am fortuante to have a great doctor.

I wish that we had the kind of attention you are getting from your physicians. I do not want to dwell on what happened to my wife or the mistakes that caused this tragedy. My aim is to raise an awareness that we all have to give careful attention to our medical problems. I am my wife's caregiver for reasons that may be hard to explain. I also assist another family member with her healthcare issues, since her husband passed on. I have learned many lessons from my experiences.
I wish to make one point. Doctors like the rest of us do make mistakes. There are good doctors and some that are not so good. Good doctors far outnumber those that are not as good. I am not in this forum to knock doctors only to share my experiences with others and hope they can use it to take good care of their health. Life is a precious commodity.

Sincerely,

Rudy

iseedeadmonkeys
02-04-2009, 10:45 AM
Can i ask what 124 punds is in stones?

Im on 400mg and went up to 400 after a little while of taking 200mg
i do remember the dr looking at me asking me my weight before he said yeah take 400,

rabraham09
02-04-2009, 10:49 AM
Hello all,


Sometimes, people's thoughts, intentions, humor, and ways of expressing themselves here comes across in a way that the person did not intend them to. People from different parts of the world and of different ages have very different ways of expressing themselves. And since we are speaking through the written word here, without the benefits of language inflection and facial expression, there will be misunderstandings from time to time. We need to keep that in mind and remember that we are all here for a common goal-treating, living with, and understanding Lupus. There's no reason to end this discussion over a miscommunication.

Rob
Moderator

Rob,

This forum is about Lupus but somehow I got it shifted to the effects of Hydroxychloroquine which is what caused my wife's loss of vision. I understand what you are telling me but I do not want to be pushed into a situation where people will start thinking that I am a qualified medical professional giving advice. I preferred to cut off that communication because it could easily shift the discussion in the wrong direction. That was an attempt to entice me to become argumentative and I cannot have that. If the gentleman raises another concern in a civil manner I will respond.

Thank you,

Rudy

iseedeadmonkeys
02-04-2009, 11:04 AM
Which gentleman are you actually refering too?

And what is wrong with the questions im asking, i asked a civil question, im sorry that you have read all my posts all wrong,
i dont mean anything by what you think i thought i said, im a bit confuzed about the whole thing :?

ISDM 8)

rob
02-04-2009, 11:24 AM
Hello Rudy,

I was not singling you out, my message was for all in this discussion to read and consider. As far as "shifting" this sites content, the effects of Plaquenil are an integral and important part of the overall subject of Lupus, so you are actually speaking about an extremely important topic and you are speaking about it in the right place. You have made it very clear in your writings that you are not a Dr. and I believe everyone clearly understands that. As I mentioned before in another thread, you story, and your experience is a welcome addition to our group.

Now, EVERYONE in this thread, Please relax, and take a deep breath. No one is at fault here, we simply have a miscommunication. Thanks.

Rob
Moderator

Oluwa
02-04-2009, 11:25 AM
Rudy....

Knowing how the Brits use phrases, slang and etc I think Iseedeadmonkeys intent wasn't to be combative. I am married to a Brit. Some sayings can be perceived as offending. Like Pissing rain, carry on. And my husband knows some American phrases I use aren't offensive words but not being from the culture, he responds sometimes as though I meant it in an ugly way..he forgets.

Even person to person things can't get misinterpret. For me, I find a lot has to do with my reception of ones words be it in a post, face to face.

Our mood, our intention, our thoughts, when we read can alter the outcome as we read it. Times we read it with our anger, with our humor, with our cynicism...skeptism, expectations and etc..which can change one's actual intent, emotion they were conveying....and well, sometimes they if fact meant exactly what you read. Ah, the power of interpretation. Our call or we can ask to re-clarify...

If we find a post, a reply we don't like how it make us feel....me, I don't reply...nor should anyone.

I would suggest.... everyone let it go and let the conversation continue for knowledge of those who wish to learn and not debate their personal reception or the intent of another.

Anyone, participate if you like. Me....I would like to hear about your personal research, Rudy. We are all friends here.

It is a Lupus forum, but we welcome everyone, family and friends of those who have a disease. I, we feel everyone needs support. Lupus affects everyone we love, our family, friends, coworkers...all those who don't have it.

Hey...maybe use the Medication Forum would be a better place to engage in the topic of Plaquenil.

Smile, it is all good...Hugs. Stay....
Love,
Oluwa

lmangusrn
02-04-2009, 11:40 AM
Rudy and all-I think I am lucky to have a great doctor who is on top of things. I to am here to raise awareness and help others through maybe things that I have already been through. Also to find answers or suggestions to those things that I have yet to be through. I thank everyone for their comments, thoughts and suggestions. I am the caregiver for my husband who also has some medical problems and as a nurse have been the caregiver for many. I don't like being sick and rarely have ever been so coping with my diseases now is a whole new ball game for me. One thing I have always taught my patients and their families is ask questions, ask questions, ask questions. When you are not at the doctor write your questions down, take the notebook with you and don't leave until the answers have been given. Also to look up things on the internet. One thing I found that sometimes there is to much information on the internet, ask your doctor what sites they suggest. And last, if you are not comfortable with your doctor and they way things are handled then change doctors. I know this is not always easy but sometimes it is the only answer. I hope this helps a few.

rob
02-04-2009, 11:47 AM
Rudy,

The thing that really strikes me about your story, is that your wife was down to 110lbs and was on 400mg of plaq. per day. For comparison, I am 6'1" 220lbs and I am on 400mg per day and my Dr./Rheumo absolutely does not want to put me on any more than that. Your wife is half my size, but was on the same dosage I am on. That does not sound right at all. Have you ever considered what happened to be a form of malpractice? What happened sounds like gross incompetence.

Oluwa
02-04-2009, 11:57 AM
Rudy,

My experience with Plaquenil....I wasn't given any information from my doctor about the drug at all...not even information on Lupus or Sjogrens.

I received a generic print out from the pharmacy.

And if I recall correctly it was me who found the information to seek an Ophthalmologist every 6 months from my research on the drug. And I do keep my appointments.

I take 200 mg a day and I've even upped it while in a bleak flare to 600 mg for 30 days as per reading it in The Lupus Book by Daniel Wallace, M.D.

I didn't know one's weight played a factor in prescribing a dosage.

I've been on it, three years..forgot. I don't use the generic. Heard the Brand provided better results.

At first I had headaches, nausea and it worked very fast for me..less than two months.

When I stopped dosing to see it I was having a reaction to it, my latest bout with hives, rashes and etc since September...wasn't the culprit. When I resumed dosing the headaches and nausea return...

We make mistakes we learn from them...we try to teach, share through our experiences.

I want to say....Thank you for sharing..your words help us to ensure we are our own best advocates for our care...

Head hugs.
Love,
Oluwa

rob
02-04-2009, 12:28 PM
Oluwa,

I wasn't aware that there could be a difference between the generic and the actual name brand Plaquenil. I've been taking the generic for quite awhile now. In fact, I think I may have been taking generic since I first started the stuff. Is it a difference in quality control?

rabraham09
02-04-2009, 02:05 PM
Nah i think you have got me all wrong here, i dint mean anything by the post i wrote, i dont get how ppl read attitudes through what they write?

I was interested otherwise i wouldnt of put up what i found on the matter, i guess no one really gets my sence of humour anymore,

Anyway i do want to hear your story so fire away please? better?

I did say that I may be wrong but I try to avoid an argument. I think you are seeing things a little different from where you are located. I have given a fairly detailed explanation to another forum member which I am sure you can read. You said that every patient gets this information or something along that line. Unfortunately I did not and my failure was that I took what little was given without question. Think about this. When the dust had settled and my wife was declared legally blind, we had consultations with no less than four specialists. Only one seemed to know anything about the safe dosage theory. If my wife's physician had known about it, he would or should have reduced the dosage, at a minimum, when he learned she was having eyesight problems but he did not. Much later, he claimed to have known about it. If he did and refused to change the treatment or reduce the dosage, then one can only assume that he had reckless disregard for his patient's safety. He was told early enough about the visual field test finding to have reversed the early damage.
Most doctors are good but we have to safeguard against those that are not. Agree with me on this one?

Take good care of yourself.

Rudy



8)

rabraham09
02-04-2009, 02:20 PM
Rudy,

My experience with Plaquenil....I wasn't given any information from my doctor about the drug at all...not even information on Lupus or Sjogrens.

I received a generic print out from the pharmacy.

And if I recall correctly it was me who found the information to seek an Ophthalmologist every 6 months from my research on the drug. And I do keep my appointments.

I take 200 mg a day and I've even upped it while in a bleak flare to 600 mg for 30 days as per reading it in The Lupus Book by Daniel Wallace, M.D.

I didn't know one's weight played a factor in prescribing a dosage.

I've been on it, three years..forgot. I don't use the generic. Heard the Brand provided better results.

At first I had headaches, nausea and it worked very fast for me..less than two months.

When I stopped dosing to see it I was having a reaction to it, my latest bout with hives, rashes and etc since September...wasn't the culprit. When I resumed dosing the headaches and nausea return...

We make mistakes we learn from them...we try to teach, share through our experiences.

I want to say....Thank you for sharing..your words help us to ensure we are our own best advocates for our care...

Head hugs.
Love,
Oluwa

You made me feel good about being on this forum. May I add that not all patients who are on this drug will experience the same problems as my wife. It seems that some people have a low tolerance for the compound, quinoline which is one of the components in Plaquenil. It does not have an adverse effect on most people which may be reason why loss of vision is a rare occurrence. It does mean that we all have to be on our guard that it could happen. My wife's situation is a whole other story because it involved a misdiagnosis, false assessments in other areas and a breakdown in communication between doctors. The symptoms you are having seems to be minor but also watch for skin discoloration. Talk to your doctor. BTW, Plaquenil is one of the best for the treatment or many autoimmune diseases (Dr. Susan Marren's article).

Thank you,

Rudy

rabraham09
02-04-2009, 02:28 PM
Rudy,

My experience with Plaquenil....I wasn't given any information from my doctor about the drug at all...not even information on Lupus or Sjogrens.

I received a generic print out from the pharmacy.

And if I recall correctly it was me who found the information to seek an Ophthalmologist every 6 months from my research on the drug. And I do keep my appointments.

I take 200 mg a day and I've even upped it while in a bleak flare to 600 mg for 30 days as per reading it in The Lupus Book by Daniel Wallace, M.D.

Hi,

I need to add something to what I already sent out. According to what I read in several articles, most patients do not experience a serious side effect until they have been on the drug for five years or more and at very high dosage. My wife was an exception in that she experienced the first sign one year after she had started at 400 mg per day.

Rudy

I didn't know one's weight played a factor in prescribing a dosage.

I've been on it, three years..forgot. I don't use the generic. Heard the Brand provided better results.

At first I had headaches, nausea and it worked very fast for me..less than two months.

When I stopped dosing to see it I was having a reaction to it, my latest bout with hives, rashes and etc since September...wasn't the culprit. When I resumed dosing the headaches and nausea return...

We make mistakes we learn from them...we try to teach, share through our experiences.

I want to say....Thank you for sharing..your words help us to ensure we are our own best advocates for our care...

Head hugs.
Love,
Oluwa

You made me feel good about being on this forum. May I add that not all patients who are on this drug will experience the same problems as my wife. It seems that some people have a low tolerance for the compound, quinoline which is one of the components in Plaquenil. It does not have an adverse effect on most people which may be reason why loss of vision is a rare occurrence. It does mean that we all have to be on our guard that it could happen. My wife's situation is a whole other story because it involved a misdiagnosis, false assessments in other areas and a breakdown in communication between doctors. The symptoms you are having seems to be minor but also watch for skin discoloration. Talk to your doctor. BTW, Plaquenil is one of the best for the treatment or many autoimmune diseases (Dr. Susan Marren's article).

Thank you,

Rudy

iseedeadmonkeys
02-04-2009, 02:28 PM
I cannot even begin to imagine what you and your wife has had to go through with all of this, we here in the UK get given info about the treatment we are started on, my consultant did make me weary of any changes in my eyesight i am to contact them immediantly so they can disgaurd the drug, its really hard to know all the side affects of the treatments and or what the treatment is for, after 4 weeks of me starting on methotrexate only then did i find out it was a chemotherapy drug-that was not on the information sheet i was given about the drug, so yes in answer to your question i do get you on this one.

Where do i find out more info on this? when was your wife started on this treatment?
Can you get any compensation for what you and your wife have gone through? and what is the recommended weight (in stones) do you have to be to be put on 400mg of plaquenil?

Like i said before i am intrested in this thread, and i hope you realise im not an argumentative person,

hopefully hear from you soon

ISDM

rabraham09
02-04-2009, 02:46 PM
Rudy,

The thing that really strikes me about your story, is that your wife was down to 110lbs and was on 400mg of plaq. per day. For comparison, I am 6'1" 220lbs and I am on 400mg per day and my Dr./Rheumo absolutely does not want to put me on any more than that. Your wife is half my size, but was on the same dosage I am on. That does not sound right at all. Have you ever considered what happened to be a form of malpractice? What happened sounds like gross incompetence.

Rob,

We did seek the legal course and the ophthalmologist did acknowledge his mistakes. The rheumatologist who made even more mistakes than he did refused and our attorney chose not to follow-up. Yes, it was gross incompetence but the attorney said that I should let it be. Think about this. She was diagnosed with lupus in 1996 and seven years later this doctor admitted that her symptoms did not meet the lupus diagnostic criteria. He then misled the ophtalmologist by telling him that a MRI of the brain had reported evidence of CNS Vasculitis. She had four MRI's of the brain all negative for vasculitis. Since the ophthalmologist could not see a significant retinal change, he assumed that her symptoms might be the result of cerebritis, another name for CNS Vasculitis. The false MRI report was not revealed until after my wife had lost her eyesight.
Rob, perhaps the greatest tragedy of all is that the State Board of Medical Examiners did not see a serious problem with this doctor. What can I tell you?

Rudy

Oluwa
02-04-2009, 03:10 PM
Rudy,

I am glad you feel better.

I am sorry that the changes in Mrs. Rudy's eyesight was not being heard by anyone. So many of us fall on deaf ears, fall into cracks, get lost in the paperwork shuffle....that upsets me.

I think doctors have changed health care into a business, especially HMO's and those who are in a partnership. Crank 'em out like sausages....sad. Sometimes a customer at McDonald's gets better service.

I find when we pay to see specialist, that is all they treat...intestines, skin or joints and etc and they should be the best, informed and etc.

Like with my recent months with a dermO. All he does was treat skin, day after day after day. Brown skin, white skin, old and wrinkly, tight..sores, rashes, warts, hives... and he couldn't tell that the ultrapotent steroid creams was literally frying my skin.

I am thankful, hopeful my skin will return to normal...least that it has the potential too, I wish your Mrs. Rudy had that chance. I am sorry...head hugs.

Rob....The Lupus Book has an exceptional chapter on the magic bullets...many of the side effects he has learned from his patients in his book are from hydroxy-Chloroquine and rarely Plaquenil...

Chloroquine is a more potent drug. He prescribes it when patients can't wait the 3-4 months to feel well then switches them over to Plaquenil.

It's Hump Day Wednesday...supposedly easier, downhill in a good way starts here. Hope everyone wakes up tomorrow feeling great...

Enjoy this evening...
Hugs,
OLuwa

rob
02-04-2009, 03:16 PM
Rudy,

That, is terrible, there's no other way to put it. I have seen the uncaring, negligent attitude of various general Dr.'s and their associated specialists firsthand, but this takes it to a new level. Like you, I don't want to smear everyone in the health profession as being incompetent, but this is just too much. How can these people do this? When I speak of legal action, I know that no amount of money can bring back what your wife has lost, nor can it ever compensate for the heartbreak you have for her. How do we stop these incompetent people, and change things so this cannot happen again to someone else? I don't know.

I cannot imagine what this has been like for your wife and yourself to go through. We trust our Dr.'s to always have our best interests at heart, we trust them with the most basic thing, our health. I'm sorry this has happened. I applaud you for documenting this story in book form, and for having the courage to speak so frankly about a subject that I know cannot be easy for you to talk about.

Rob

rabraham09
02-04-2009, 06:13 PM
Oluwa,

I wasn't aware that there could be a difference between the generic and the actual name brand Plaquenil. I've been taking the generic for quite awhile now. In fact, I think I may have been taking generic since I first started the stuff. Is it a difference in quality control?

Rob,

I had asked two doctors and then I read something in one AARP bulletin and all have said that there is no difference between the brand name and the generic. My understanding is that when a new drug comes out, the FDA allows that it is sold only under the brand name for seven years which allows the pharmaceutical company to recover whatever was spent in its research and development. After seven years, it goes under the generic at a reduced price. It is the same product but some people insist on the Brand name although most insurances will not cover the cost as long as the generic is available. I have seen the price of some generic drugs go down over time.

Rudy

rabraham09
02-04-2009, 06:20 PM
Rudy,

That, is terrible, there's no other way to put it. I have seen the uncaring, negligent attitude of various general Dr.'s and their associated specialists firsthand, but this takes it to a new level. Like you, I don't want to smear everyone in the health profession as being incompetent, but this is just too much. How can these people do this? When I speak of legal action, I know that no amount of money can bring back what your wife has lost, nor can it ever compensate for the heartbreak you have for her. How do we stop these incompetent people, and change things so this cannot happen again to someone else? I don't know.

I cannot imagine what this has been like for your wife and yourself to go through. We trust our Dr.'s to always have our best interests at heart, we trust them with the most basic thing, our health. I'm sorry this has happened. I applaud you for documenting this story in book form, and for having the courage to speak so frankly about a subject that I know cannot be easy for you to talk about.

Rob

To get all the details and to experience some of what she endured, you might want to pick up a copy of the book. I would have liked to take this to a higher level but there is an attitude out there. Someone said to me, "put the past behind you and move on." He then added, "the doctors will continue to practice and probably make more mistakes." I can't handle that and I don't think most people won't.

Oluwa
02-04-2009, 09:16 PM
Rudy,

We all pick and chose the fights we want to engage in....for you this is one you can not forget nor put behind you. I wouldn't either.... she is your life, your love....

Only on your terms, in your time can you forgive....

Head hugs..
Night, Rudy.
Love,
Oluwa

rabraham09
02-04-2009, 09:54 PM
Thank you for your kind thoughts. We are learning and trying to focus on the future and to do so we must put this thing aside. I don't know how you forget it when every time my wife has to ask for my help, we are reminded of her disability and how it came to be. Before all this happened, I used to hear of serious injury and death due to medical mistakes but I had never really thought of how hard it is for the victim, if he or she survived death but sustained a serious injury or, for the family if it caused death. We might say, my God that is terrible and we are shocked and we try to understand. But then we move on. Now I know what it is like, the trauma and the continuing struggle to live with it. I think that you have to live it to feel it, is the best way I can explain. It may be one reason that I wrote the book. But, in the end I am determined to reach out to others as I have done in this forum and I thank you all for your kind words. It means a lot.

God bless,

Rudy

Oluwa
02-04-2009, 09:55 PM
Rob..

The difference between generic and brand name drugs are in the inactive ingredients, which can and does have an effect on the efficacy of the drug hydroxychloroquine from my reads...or any drug for that matter.

Some people notice the difference, others may not. Plaquenil made such a difference in my overall health I would be afraid to switch to generic at this juncture....


GENERIC...
Hydroxychloroquine sulfate is a colorless crystalline solid, soluble in water to at least 20 percent; chemically the drug is 2-[[4-[(7-Chloro-4-quinolyl) amino]pentyl]ethylamino]ethanol sulfate (1:1).
Hydroxychloroquine sulfate tablets contain 200 mg Hydroxychloroquine sulfate, equivalent to 155 mg base, and are for oral administration.
Inactive Ingredients: Dicalcium Phosphate Dihydrate, Hypromellose, Magnesium Stearate, Polydextrose, Polyethylene Glycol, Starch 1500 Pregelatinized, Titanium Dioxide, Triacetin.

BRAND PLAQUENIL....
Hydroxychloroquine sulfate is a colorless crystalline solid, soluble in water to at least 20 percent; chemically the drug is 2-[[4-[(7-Chloro-4-quinolyl)amino]pentyl]ethylamino] ethanol sulfate (1:1).
Plaquenil (hydroxychloroquine sulfate) tablets contain 200 mg hydroxychloroquine sulfate, equivalent to 155 mg base, and are for oral administration.
Inactive Ingredients: Dibasic Calcium Phosphate, Hydroxypropyl Methylcellulose, Magnesium Stearate, Polyethylene glycol 400, Polysorbate 80, Starch, Titanium Dioxide.

Night, night, Rob
Love,
Oluwa

rabraham09
02-04-2009, 10:20 PM
Can i ask what 124 punds is in stones?

Im on 400mg and went up to 400 after a little while of taking 200mg
i do remember the dr looking at me asking me my weight before he said yeah take 400,

Let me see if I can help. BTW, I am a former British Citizen of a British colony now independent. About weight. If I remember my school days well, it is 14 pounds equals 1 stone, 8 stone is 1 cwt and 112 pounds is also 1 cwt. I hope I am right on this. If you want to convert my wife's bodyweight it would be 8.857 stone for 124 pounds and 9.857 stone for 138 pounds. Let me give you something else to chew on.

The recommended safe dosage is 6.0 to 6.5 milligrams per kilogram of bodyweight. the dosage she was using was 400 mg which is 7.14 mg/kg of bodyweight (56Kgs). Taking the lowest dosage (6.0 mg) it would mean that she was consuming 1.14 mg/kg in excess of the recommended safe dosage.
What you have to calculate is the cumulative dosage. Here it will be 56 Kgs times 1.14 mg which comes to 63.84 mg over the safe dosage per day. Multiply that by 365 days in a year. I hope I got this right but you can take a shot at it and tell me.

Have fun,

Rudy

iseedeadmonkeys
02-05-2009, 02:55 AM
Rudy,

thank you for telling me that, after my brain fog i will try my hardest to sink my teeth into it, may take a while, im not the brightest button in the clothes shop, but i will, i like brain teasers so bare with me,

ciao for now
IDSM

JennM
02-15-2009, 01:33 PM
I was just put on Plaquenil about 2 weeks ago, and my doctor says that it is a low dose and I shouldn't have any problems with it. I am taking 200mg twice a day. I plan on getting a baseline eye exam next week. This is scary for me, like we don't have enough to deal with already! I wish they could create drugs that didn't cause another problem. The good news is that side effects don't always affect u, they just have to list all of the possibilities. Just make sure that you get your baseline and followup on it, I plan to.