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Hi
I know some of you are on Plaquinil, and I was wondering how they are for you.
I've just started them and I really want them to work. You see I don't easily go on drugs they scare me.
I hope to hear from you soon
many thanks
Rosemary
Can be a great drug I hear. I think that rheumys often do not start at low enough dosages (standard dose is 200mg) and so the usual sturm und drang of herxing can be a bit much.
I started with 200mg and after three weeks I was a mess – full body rash, depressed, digestive trouble. The doctor called it an allergy, and maybe it was, but I think it could have been a herx. I was unfamiliar with the phenomenon at the time and she was a non-believer.That's my experience, but there's got to be somebody out there who knows more!
My six year old tolerates it very well. It hasn't helped her arthritis, but has pretty much cured her lowgrade fevers and stomachaches (go figure) so we are happy to stick with it for awhile.
Mom of teen daughter with Poly JIA since age 2. Current med: azithromycin 250 mg MWF.
Hey Rosey,
You might want to contact Bonnielou because she's had good luck with Plaquenil. Here is a recent post.
http://rbfbb.org/view_topic.php?id=3462&forum_id=1
Take care…..kim
Rosey, I've been on plaquenil now for about 5 months. For me, it took a while to kick in, with some but not spectacular improvement. I do think it is worth a try. You just have to be patient. It could give you gas , tummy aches and loss of appetite and weight loss, but still, worth a try. I really hope you feel better soon!
Hi Rosey–
I know two people who are doing great on Plaquenil. I hope to hear that it does well for you, too–you sure need some relief!!!!
Take care,
Trudi
P.S. I posted this already but cannot find it–so if someone sees it somewhere else… :?!!
Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?
[user=40]Kim[/user] wrote:
Hey Rosey,
You might want to contact Bonnielou because she's had good luck with Plaquenil. Here is a recent post.
http://rbfbb.org/view_topic.php?id=3462&forum_id=1
Take care…..kim
Many Thanks Kim It was very encouraging.
Take care
Rosemary xx :roll-laugh:
[user=442]Trudi[/user] wrote:
Hi Rosey–
I know two people who are doing great on Plaquenil. I hope to hear that it does well for you, too–you sure need some relief!!!!
Take care,
Trudi
P.S. I posted this already but cannot find it–so if someone sees it somewhere else… :?!!
Thanks Trudi.
be well! Rosemary
Hi Rosey — don't be afraid of the plaquenil. It can be a very effective treatment, and for most people, there are very few side effects. My husband is an ophthamologist, and he sees a lot of RA patients — and in all his years of practice he has never had anyone with eye complications from plaquenil. Of course he checks my eyes every 6 months — and they are doing fine.
I did have some stomach upset in the beginning — but I was taking a high dose to get started, and the minocycline, and celebrex — all 3 of those meds can be hard on the stomach. It got better in a few months.
I would gladly stay on the plaquenil and mino forever if I can feel this good — not perfect, but close enough. Give it a try. It's one of the oldest and most benign of the RA drugs. And if it starts to help you, you will be able to cut back on the dosage. Send me a message if you want to talk more.
Bonnie
Bonnie Lou
RA 02/07,AP 10/07
Minocycline 200mg MWF; Plaquenil 100mg 3 days/week
Fish Oil, Ubiquinol, Turmeric, Vit C (2 grams) , MultiVit, Magnesium, Astaxanthin, D3 (5000), probiotics and a daily dose of yoga![user=115]Rosey UK[/user] wrote:
I know some of you are on Plaquinil, and I was wondering how they are for you.
I've just started them and I really want them to work. You see I don't easily go on drugs they scare me.
I hope to hear from you soon
Rosey UK,
Plaquenil was the first drug the rheumatologist was going to prescribe for me after he had redone my initial tests. I had read “Arthritis Breakthrough” a month before the first appointment with him, and had learned about Dr. Brown's preferences. Also, I remembered reading that Plaquenil could cause serious eye damage, and that scared me. I mentioned Dr. Brown's protocols to the rheumy, and he nixed that in a hurry. I left his office that day and never went back. And went to Ida Grove instead, in January 1997.
I just did a search to find information on Plaquenil. You might want to take a look at this site: http://www.drugs.com/pdr/plaquenil.html
Especially, scroll down a ways and read under the two topic headings:
What Side Effects May Occur?
Why Plaquenil Should Not Be Prescribed
Good luck to you with whatever decision you make.
AF
The eye damage is one thing that really scared me the most. After all, what good is life without eyes. Eyes are the most precious gift from Almighty. I believe this drug is the worst of them all. The rest can kill you but plaquenil can move you towards life of darkness. I will take my chances on other drugs than plaq anytime.
Actually, I think there are a lot of blind and low vision folks in our world who would disagree with you APBeliever, and who think that life can still be pretty wonderful and fulfilling even without the gift of sight. Losing your ability to move without pain can also be a serious loss.
Definitely have your eyes monitored Rosemary. I remember reading Maz had some complications. It can happen. But they are rare. As I said above, my husband has been practicing for over 25 years, and he is not at all concerned about my taking the plaquenil. That same website says some pretty scary things about minocycline — but we are all taking it. Medicine has risks. Not taking medicine has risks. You are being careful and thoughtful, doing your research and getting good information. You will be fine.
Bonnie
Bonnie Lou
RA 02/07,AP 10/07
Minocycline 200mg MWF; Plaquenil 100mg 3 days/week
Fish Oil, Ubiquinol, Turmeric, Vit C (2 grams) , MultiVit, Magnesium, Astaxanthin, D3 (5000), probiotics and a daily dose of yoga!I just met recently couple of patients at the Rheumy's office. They said never ever take this drug. Thanks to this drug, they have lost the ability to see. I told them after seeing the side effects, I said no way to the Rheumy when he offered it to me. He gave me MTX which is a stronger drug but no eye damage. Everyone is different bonnie. Some people have different preferences than others. We have to make our own choices.
Rosey,
I've been on Plaquenil since June of this year, and I've had great success with it as well. I don't want to get into a debate about the side effects but, EVERY drug has its own set of side effects–even over the counter drugs like aspirin and ibuprofen. In my case, the damage that Lyme Disease and SD could do was a far greater risk to me than the very low possibility of eye damage. Like anything else, it's important to be working with good doctors, and to be monitored regularly while on any medications. I'm very pleased with my protocol, and 2 of the top Lyme docs in the country and Dr. F in California are impressed with my progress on the protocol. (I'm on Minocin 100mg bid, Omnicef 300mg bid, Biaxin 500mg bid, Plaquenil 200mg bid)
When I was initially diagnosed, my then rheumy wanted me to start on Prednisone and MTX. They may not cause eye damage but, after reading the laundry list of side effects, and being told by my brother who is a surgeon himself to NOT even consider these drugs (and he prescribes them freely to his patients), my choice was very simple. After my Lyme diagnosis came, I'm so glad I didn't listen to my rheumy. Read over all the information you can, get some advice from the wonderful people on this board…then do what YOU feel is the best option for you. Feel free to PM me if you have any questions you'd like to ask me. The best of luck to you.
Maria
[user=1212]APbeliever[/user] wrote:
I just met recently couple of patients at the Rheumy's office. They said never ever take this drug. Thanks to this drug, they have lost the ability to see. I told them after seeing the side effects, I said no way to the Rheumy when he offered it to me. He gave me MTX which is a stronger drug but no eye damage. Everyone is different bonnie. Some people have different preferences than others. We have to make our own choices.
Bonnie Lou wrote: Actually, I think there are a lot of blind and low vision folks in our world who would disagree with you APBeliever, and who think that life can still be pretty wonderful and fulfilling even without the gift of sight. Losing your ability to move without pain can also be a serious loss.
_______________________________________________________________APbeliever, Bonnie Lou, All,
I don't believe we ever need to apologize for most things we share here on the board. Age, individual characteristics, diagnoses, DNA, etc., length of time we've been ill, damage that has been done to our bodies where we've lost inate ability to “overcome” what one younger might still have “body reserves to accomplish” == these and many others can/will definitely determine how our bodies respond to different things, even simple things for others.
Fortunately, when I first became chronically ill (and at that time I don't believe I really had an illness then that could be classified as one or the other; it was a matter such as: “I had run out of resilience apparently, the more medicine I took for each recurring illness, the sicker I got; and the doctors didn't know or tell me about probiotics, etc., which all contributed to my eventually developing a diagnoseable chronic illness). Fortunately, at the end of two years of this going on, I found Dr. Crook's book, “Chronic Fatigue and the Yeast Connection” and I began making a noticeable recovery. By having studied Dr. Crook's books, I learned many basics that are still VERY applicable today to all of our diagnoses.
The above learning period warned me about taking drugs such as prednisone, cortisone, and “unnecessary” abx. In the case of AP, it was a “necessary” abx, for by then, my immune system was simply not capable of defending my body by itself.
About our vision. I came very close to losing my sight, and I believe I would have, if I had not recently to the event found a holistic physician where I live (and after 2-1/2 years I then stopped going to Ida Grove). It had to be one of the darkest periods in my lengthy illness, and I had a hard time dealing with it. It is one thing to think how we would react; it is another to actually have this happening to you.
It was the new MD that told me he believed the methotrexate (that my ophthalmologist & retinal specialist had required me to take… to remain a patient of theirs) would not stop me from losing my sight, but maybe slow it down. Together we decided to see Dr. E. Wirostko who practiced in NY/NJ and not only was a foremost opthalmologist, but was an AP one. I flew up and saw him, he retested everything, told me to get off the MTX, it was undoing everything we were trying to do. The rest of the story was, he followed me through a new ophthalmologist, and soon my eyes were ok, and I lost no measureable eyesight when retested.
All of the above is to say, when we are kicking around a subject of medicines, etc., and sharing our journeys, it is not our responsibility to advise anyone what they should do… or to recommend. It is my belief that it is good for us to share our experiences. Then, with the God-given wisdom in us all, and because we each know our own bodies better than some other person, we then decide what treatment we feel is best for us. But… it is probably helpful to the person having to make decisions about their treatment to gather all the information on a subject they can gather, and at least make an informed choice. My motto has long been: No information is ever wasted.
AF
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