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View Full Version : Hydroxychloroquine, chloroquine, quinidine, quinine (ie plaquenil) IMPORTANT



giggle
09-21-2011, 07:15 PM
Now I know we are all warned in the beginning that plaquenil can cause some eye problems. We have those regularly checked and feel rather secure in the reassurance we have from our treating doctors that plaquenil is really rather safe to use.

No one at any stage mentioned to me that plaquenil may cause, bring on or worsen further disorders... such as myasthenia gravis. It was no where in any warning on plaquenil that I had read and the only way I came across this information... was when my Neuro mentioned MG. This is common knowledge to MG sufferers! And it should be common knowledge to us too!

Quote from the Myasthenia Gravis Association of WA http://www.myastheniawa.info/

"Chloroquine (Chlorquin™), Hydroxychloroquine (Plaquenil™) - also used in treatment of Malaria. Avoid use if possible.
These drugs from the quinine family are also commonly used to treat SLE. They have been shown to induce MG (with or without anti-acetylcholine receptor antibodies), but can also exacerbate pre-existing MG by interfering with neuromuscular transmission. The effect can be seen with short term treatment (e.g. malaria) or longer term treatment (SLE)."

Drug induced MG may clear up in time, but the autoimmune version which plaquenil can also bring on is just as life long as lupus is. I can tell you now, that if what I have is MG, you do not want to be inducing MG!

Please talk to your health care professionals about this and establish a regular check up for the symptoms of MG. Educate yourself on MG and be smart about it but dont panic. Thyroxine can also exacerbate MG... so I am looking at a difficult road ahead with balancing medications.

tgal
09-21-2011, 07:45 PM
Now I know we are all warned in the beginning that plaquenil can cause some eye problems. We have those regularly checked and feel rather secure in the reassurance we have from our treating doctors that plaquenil is really rather safe to use.

No one at any stage mentioned to me that plaquenil may cause, bring on or worsen further disorders... such as myasthenia gravis. It was no where in any warning on plaquenil that I had read and the only way I came across this information... was when my Neuro mentioned MG. This is common knowledge to MG sufferers! And it should be common knowledge to us too!

Quote from the Myasthenia Gravis Association of WA http://www.myastheniawa.info/

"Chloroquine (Chlorquin™), Hydroxychloroquine (Plaquenil™) - also used in treatment of Malaria. Avoid use if possible.
These drugs from the quinine family are also commonly used to treat SLE. They have been shown to induce MG (with or without anti-acetylcholine receptor antibodies), but can also exacerbate pre-existing MG by interfering with neuromuscular transmission. The effect can be seen with short term treatment (e.g. malaria) or longer term treatment (SLE)."

Drug induced MG may clear up in time, but the autoimmune version which plaquenil can also bring on is just as life long as lupus is. I can tell you now, that if what I have is MG, you do not want to be inducing MG!

Please talk to your health care professionals about this and establish a regular check up for the symptoms of MG. Educate yourself on MG and be smart about it but dont panic. Thyroxine can also exacerbate MG... so I am looking at a difficult road ahead with balancing medications.

It seems like we go down the "plaquenil is evil" discussion every few months. While I will not say that plaquenil does not have some side effects, the majority of the side effects are given for information only. If one person had any kind of problem while taking the drug, whether it was caused the plaquenil or not, it has to be put on the information packet. Also, We have Lupus. Lupus and other AI diseases have many of the same symptoms that you are questioning the plaq. about.

I do believe that we should be very informed about our meds and I think what you are doing is wonderful. I will say, however, you have to be careful where you get your information when it comes to meds. Going the the plaquenil website is only going to give you the pro's of that medicine and going to a website for people that the disease has harmed will just give you that side. When it comes to medicines I think that we need to keep in mind that there is no cure for this disease. I have lived with plaquenil and without. My life is better with. No one is saying that there are no side effects but I am saying that Plaquenil isn't as evil as some like to make out. If someone starts having bad side effects then by all means get off of it. I just think that more people are helped with it then are hurt by it

giggle
09-21-2011, 09:08 PM
hey tgal,

I didnt say it was evil, for most it is still the absolute best medication around for them to take.

But this information is not readily available and it should be, hence why I thought I would post : )
Not even my rheumy was aware, but the neurologist very much was. He has seen cases before.

Of course you cant know whether you will be one of the unlucky ones to have any medication consequence but you certainly should know what could possibly happen. I personally am rather annoyed that it isn't common knowledge to Rheumys and that they dont give more information about the possible consequences. I was not given the opportunity to make an informed choice.

Gizmo
09-22-2011, 01:43 AM
It is good information, Giggle, and I was totally unaware as well. I also agree with Mari that for the vast majority of people Plaquinil provides much more benefit than harm. Every drug has the potential to cause other problems and we have to be aware of what to watch for, but not use the risks as a reason to avoid treatment for a very serious illness.

On a related note, I quit Plaquinil in July because of concerns about eye toxicity. One of the really annoying vision problems has all but disappeared, so I am really happy about that. On the downside, my lupus is getting more active. If it weren't for the drug study I'm in, I think I would be in trouble.

ritzbit
09-22-2011, 04:57 AM
I don't see this post putting down plaquenil at all. I agree that all the problems dont show up with meds. Its good to know all the possible side effects. Do I think I'll get cancer because Im on Cellcept? No. But it tells me its a possiblity on the list of serious side effects. Im thoroughly convinced plaquenil made me stop growing leg and under arm hair because I never had a problem with that until about 2 months after I started it. Im sure most people would beg for that side effect though lol

tgal
09-22-2011, 10:08 AM
Last night I was very tired and having brain issues so I didn't come across the way I wanted. I know you didn't call it an evil med that was taking from the last few threads. My irritation wasn't at you it was at these websites that have no medical people on their board but are giving out information that appears that they do.

I read through the entire site that you posted and there is a page about drugs. Even their own website can't decide what if it is an OK drug or a bad drug. This topic can get really heated and that is what my head was thinking. I am going to try and show a few of the inconsistencies in their own website. I do believe that we all should be made aware of every side effect of the medications that we take. I just believe they should be looked at with from credible sources.


(me)The problem is that the information quoted came from a website that contradicts itself. I could have said it more nicely or gave more information about why I felt that way last night but I was having brain issues (just see the chat scroll from last night) so I wasn't as kind as I should have been but the point remains the same. The majority of websites that put this information out are trying to scare people without good cause

OK.. here is the post from giggle and she took it exactly as the website (http://www.myastheniawa.info/) states it so I am not calling her out but I am calling the website out.

"Chloroquine (Chlorquin™), Hydroxychloroquine (Plaquenil™) - also used in treatment of Malaria. Avoid use if possible.
These drugs from the quinine family are also commonly used to treat SLE. They have been shown to induce MG (with or without anti-acetylcholine receptor antibodies), but can also exacerbate pre-existing MG by interfering with neuromuscular transmission. The effect can be seen with short term treatment (e.g. malaria) or longer term treatment (SLE)."


(me)Now let us look at some information found on another page on the same website. another page of the same website (http://www.bbc.co.uk/go/rss/int/news/-/news/)

Let's look at the top of the page where the first legend is found:


(3 Triangles)
Should only be used in a setting where ventilatory support in a hospital is available.
(2Triangles)
Likely to worsen MG.
(1 Triangle)
May worsen MG but are usually tolerated. Use with caution. Have caused problems in rare cases but are not a problem for the majority of people with MG.
(Blue Square)
Have been shown to cause a temporary form of MG (autoimmune)





(me)Using this legend I absolutely believe this medicine needs to be looked at. The problem is that they change their own legend further down the page.


(3 triangles)
are those which will almost certainly worsen MG and should only be used in a setting where ventilatory support in a hospital is available.


(2 triangles
are those which may worsen MG but are usually tolerated.


(1 triangle)
are those which have caused problems in 1 or a few cases, and are not a problem for the majority of people with MG.


(1 square)
have been known to trigger autoimmune MG. They do not necessarily worsen pre-existing MG.



Drugs with no symbol can be used, but there are clinical factors that need to be taken into account.






Even further down on the same page you will find this

How to minimize the impact of new Medications Most drugs marked (1 triangle or 2 triangle) can be used safely in MG even if they cause a mild deterioration in symptoms. If it is considered necessary to use them, the following measures can be helpful:


Start the new drug at a low dose and increase gradually.
Arrange a review of the effect of the drug at an appropriate time after starting.
Try not to add more than one drug at a time. If the MG gets worse, it will reduce uncertainty as to the cause.
Don’t cut back on MG treatment at the same time.
Try not to start a new drug at the same time as an event likely to exacerbate the MG. For instance, infection may worsen MG symptoms, and whilst an antibiotic may be necessary, it is best to delay commencing other new treatment if possible (say for high blood pressure).
Retrial of a drug which appeared to worsen MG may be worthwhile e.g. a certain antibiotic may be implicated, but it may have been the infection itself which caused the problems. In a subsequent infection, this antibiotic may be the only one that is effective, and so a carefully supervised retrial may be warranted.

BE ALERT: It’s important that patients and health professionals be alert to the early signs of an exacerbation of MG when a new drug is commenced, even if it is not on this list.

As you can see even this one website can't decide what or how we are to handle plaquinel. I get so irritated, not at the people on here, but at the websites that scare people about this evil medicine. Of all the meds we take this one has the least amount of side effects. OF COURSE there are people that have issues and they need to know about the medicines but they need to know the correct information

Here I am posting a link St Luke's Hospital (http://www.medicinenet.com/systemic_lupus/page4.htm) where they discuss meds for SLE and plaquenil is discussed on this page and Drugs.com (http://www.drugs.com/sfx/plaquenil-side-effects.html) actually gives an entire list of possible side effects from the common to the rare. I have NO DOUBT that muscle weakness can be a rare side effect, kind of like the ones in the 3 paragraphs of symptoms that you get when you are picking up prescriptions. I just get irritated at websites that do their very best to scare the heck out of people when plaquenil is one of the few meds we have right now.

I am sorry if I came across as irritated at you personally. I wasn't. I was not feeling really well and this is one of those threads that come up and scare people so they don't try the drug and it is really one of the best we have.

giggle
09-22-2011, 04:23 PM
Seriously nit picking tgal.

Ironically... you say these threads can get heated... you made it heated! I can feel your anger/disdain in your posts... which are directed at me.
If you discredited my source, a simple one line comment ( or even a short paragraph ) on the validity of that website would have sufficed initially, let alone secondly. Perhaps a caution on speaking with health care professionals about any information.
My posts have had no hate towards plaquenil, no ill will towards any forum member or their personal thoughts. I didn't go on a long winded rant about the evils of plaquenil.
I posted because I know I would have liked the information and by posting people can make up their own minds. I thought this was the place to do so, share information with fellow lupies.
Why are you causing stress when there shouldn't be any, over this topic or on this forum?

This wasn't the ONLY website that lists this as a medical side effect or consequence of plaquenil, but it was the clearest and easiest to read. What you nit pick, is a matter of wording and it seems clear to anyone who puts a bit of thought into it, that what they are saying is you need to weigh up the possible side effects with the benefits before taking this drug... it CAN induce MG and it CAN worsen the symptoms of preexisting MG... but it doesnt mean it will... or even if it does, the results may be barely recognizable. But you can't make an informed decision if the information about the possible effects of the drugs are kept from you! Either by your doctor or forum moderator.

On the website itself... it says EXACTLY the purpose of the drug listings...(highlighting by me)

"This article is a practical guide to those drugs which may affect Myasthenia Gravis, with advice as to how to minimise the impact when a decision is made to use one of these drugs. It is intended for use by the treating doctor or dentist, and whilst it will hopefully inform those who have MG, it is not intended to replace professional advice. Each case is different, and only the treating professional can advise in individual situations. "

This is why at the bottom of my post I wrote "Please talk to your health care professionals about this and establish a regular check up for the symptoms of MG. Educate yourself on MG and be smart about it but dont panic. Thyroxine can also exacerbate MG... so I am looking at a difficult road ahead with balancing medications. "

In fact MG QLD, associated with MG WA, works very closely with long term researches and treating doctors of MG. MG WA works with a physician who herself has MG and regularly conducts seminars for patients and doctors alike all around Australia. I did my research, I wouldnt put it up here otherwise. There are quite a few sites around, including medical websites with specific medical cases which quote plaquenil as the direct inducer of MG in those patients. My neurologist says it is rare but does happen! Whether I like his bedside manner or not he has been around for a million years and has seen the related cases. When plaquenil was stopped, the symptoms decreased and eventually complete remission was seen. On a similar note, of the drugs that may induce MG, plaquenil shows the fasted recovery period.

Steroids are demonized constantly, but the second someone THOUGHTFULLY and HONESTLY brings to light a possible side effect of plaquenil you get up in arms!!
What a tirade to go on because I brought up a possible side effect!

Please, anyone with a will to be fully informed, feel free to do you own research. Bring it up with your health care professionals!!! The reason I list the full drug name and immediate drug relatives in the title... is so you can look this up yourself. Hydroxychloroquine, chloroquine, quinidine and quinine... research these with the words 'induced myasthenia' and find your own resources so you can make up your own mind about what to do. In fact, research these drugs by themselves to fully look into their history and development. NO ONE should tell you what you should or should not know or do with your own body. Not your doctor and not your forum moderator. You should know all the facts so that you can make an informed decision... not have someone else keep this information from you and tell you this is the best drug for you thereby removing your choice completely.

Plaquenil has enormous benefits for the right people. It is currently unsurpassed in the basic treatment of SLE and no.. it is no evil drug. But like ALL drugs it has its downsides. Dont let anyone demonize any drug for you, but do be informed about what could happen while on those drugs. Like Ritzbit said... it is good to know what might happen, even if the chances are slim. Eye toxicity isnt the only possible nasty side effect of plaquenil and it is prudent to watch for all possible side effects and have an open dialogue with your treating doctors. They may not even be aware of this side effect, mine weren't, but they are now.

giggle
09-22-2011, 04:33 PM
Tgal... you said drugs.com give an ENTIRE list... but on that page alone in two separate locations it says the list is not complete.

"Please note - some side effects for Plaquenil may not be reported. Always consult your doctor or healthcare specialist for medical advice. You may also report side effects to the FDA at http://www.fda.gov/medwatch/ or 1-800-FDA-1088 (1-800-332-1088)."

AND

"This is not a complete list of all side effects that may occur. If you have questions about side effects, contact your health care provider. Call your doctor for medical advice about side effects. To report side effects to the appropriate agency, please read the Guide to Reporting Problems to FDA."

People should always do their own research into side effects of the drugs they are taking. This thread is a very good example of why. Dont let anyone lull you into a false sense of security... OR scare you completely off any drug.

tgal
09-22-2011, 06:19 PM
Tgal... you said drugs.com give an ENTIRE list... but on that page alone in two separate locations it says the list is not complete.

"Please note - some side effects for Plaquenil may not be reported. Always consult your doctor or healthcare specialist for medical advice. You may also report side effects to the FDA at http://www.fda.gov/medwatch/ or 1-800-FDA-1088 (1-800-332-1088)."

AND

"This is not a complete list of all side effects that may occur. If you have questions about side effects, contact your health care provider. Call your doctor for medical advice about side effects. To report side effects to the appropriate agency, please read the Guide to Reporting Problems to FDA."

People should always do their own research into side effects of the drugs they are taking. This thread is a very good example of why. Dont let anyone lull you into a false sense of security... OR scare you completely off any drug.
It
Giggle I am very sorry that it came out as it did. I will take complete responsibility for the way my posts came out.It really was aimed at the topic but this time you were the one that started it so I see how it felt like it was aimed at you. I am really sorry for that. This topic always gets heated and you are correct, this time it was me. I could tell you what is going on in my life but that is no excuse to make others feel bad. All I can say is that I am sorry

Gizmo
09-22-2011, 09:24 PM
Accurate information is always good, but sometimes the most concise information is on sites that we have to read with a cautious eye. There is no way I'm venturing into this except to say that everyone has valid points, if we can peel away the emotion. Giggle, I appreciate the heads up on MG. Mari, I appreciate that you are so aware of having accurate information posted. Ritz, you are wise beyond your years, as always. Me, I'm just stinkin' tired and am going to bed now.

giggle
09-22-2011, 10:36 PM
We both blew it out of proportion, that'll be that darn chronic illness thing again. ; )

I am sorry I didn't take it well.

I truly do understand regardless of my current hot-headed frame of mind. I can't get angry at my doctors... and this is a sore subject... so you copped the brunt of it rather than a cool headed reply.

tgal
09-22-2011, 10:54 PM
We both blew it out of proportion, that'll be that darn chronic illness thing again. ; )

I am sorry I didn't take it well.

I truly do understand regardless of my current hot-headed frame of mind. I can't get angry at my doctors... and this is a sore subject... so you copped the brunt of it rather than a cool headed reply.

Yes. I believe it is clear that we both had other things on our mind and took it out on each other when that is the last place it should land. Thanks for understanding

kohlfrog
01-10-2012, 09:19 AM
I know this is a dead thread but I was doing research today, and this popped up. Honestly, I wish I had seen it before I was put on Plaquenil. In 2009 August I was prescribed Plaquenil for my recent diagnosis of Lupus. It was great, about a month into it I felt good enough to take my dog down to the river, which I started doing on a regular basis. I can't remember the last time I was so AWAKE! That December I started having a LOT of severe muscle fatigue. It was quickly followed by spasms, weakness, etc. I went from being able to do my job (consisted of lifting 40+ pounds regularly) to having to wear braces on my wrists so I could pick up 10 pounds without dropping it in the first 10 seconds. The twitches (from the muscle fatigue) caused me to throw and drop things constantly, and I couldn't grip anything for a long period of time. Opening jars/bottles became near impossible.

I went to my family doctor, she could find no reason for my symptoms, but suggested maybe they were related to the plaquenil as it was a rarer side-effect. After that I went back to my Rheumy, and explained what was happening. He said he highly doubted it was the Plaquenil but we would test it. He removed it, and about a month later the symptoms had gone down, though were still bad enough to affect my everyday life. He said well lets try a half dose, so we did, 2 weeks later it was back full force.

I contacted them, and he had gone on medical leave, so the remaining docs said to stop the meds, I never went back.

The symptoms have never truly gone away. I have not been diagnosed with MG, however, ever since taking Plaquenil I have had intermittent muscle weakness, pain, cramps, fatigue, that I had not had prior. (though I have always had very weak muscles, they say low muscle tone, but it doesn't get less weak with therapy or exercise.)

I wish I had read this post prior, not because I would have not taken it (I still would have, desperation for relief) but because I could have known what might have been happening, and ceased the medication when the Doctor decided to be an idiot instead of prolonging it.


EDIT(also forgot, to manage the symptoms he put me on Clonazapam for the muscle symptoms which did help, but did not banish them)

Desleywr
01-14-2012, 12:04 AM
Clonazepam .... I know it is used for conditions like ours, my son was put on it as a child as a complementary drug with epilim for epilepsy. I found his whole personality changed which yes could have been from the fits but many drs have said it was from clonazepam. I believe it is a cousin to Valium and is addictive. Hope this helps!