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anyone use plaquenil

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Posted 8/21/2013 1:58 AM (GMT 0)
My dr. wants to prescribe plaquenil for me even though I don't have RA or lupus or malaria. He thinks I have inflammatory arthritis in my hands even though my sed rate is normal and my blood work doesn't show inflammation. I am very confused. Yes,my joints hurt and my hands swell.At first a hand specialist thought I had carpal tunnel syndrome as I had all the symptoms. I have had cortisone injections in both wrists twice. It worked each time for about 6 months each. Now the symptoms have changed. I am afraid of the plaquenil because of the side effects.

I just want to lead a normal life. I don't want to have to stay home because I have constant diahreahha (sp). Has any one had experience with this med? Or is there something less harsh that will help? Right now I am on a course of prednisone, 10 mg per day for a week to reduce swelling. It has helped but I can't stay on it.

I would appreciate any information I can get. I can't decide whether to live with swollen hands or endure the awful side effects of a medication I really don't want to take. Is there another med that will work besides ibufrofin?

I can't take that every day as I have acid reflux. I am 67 and never had any problems before this past year. Please help.

Aurora

Posted 8/21/2013 4:24 AM (GMT 0)
I take plaquenil.
I've been on it for 3 years now.

I suffer from no side effects and I get the 6 months eye check it requires.
No problems have appear.

You do need to eat with the med to avoid gastric issues.
Posted 8/21/2013 12:22 PM (GMT 0)
I've been on plaquenil for 15+ years with no side effect. I also get the eye exams which have all been clear. I was put on it before a clear diagnosis but I did have some inflammatory arthritis going on. I have since been diagnosed with RA and along with various other meds I have stayed on the plaquenil with no problem.
Posted 8/21/2013 7:53 PM (GMT 0)
Other than food aversions and weight loss when I first started the plaquenil I have had no side effects.  Plus, I think they will have to pry it out of my cold dead hands to get me to stop taking it.
Posted 8/22/2013 1:38 AM (GMT 0)
Thank you all for your helpful replies. I did not mention before, but I have glaucoma and had surgery in each eye this spring. I am fine now. I understand that plaquenil can cause retina problems. I know it is rare but I feel I don't want to take any chances. I will check with my opthomalogist to see what she thinks. Also I read it can take 6 months for this med to work. What do I do in the meantime? I can't just stay home in pain till it works. Has anyone used cortisone injections to help? I have had them and they were great, I just don't know how many more I can have in my hands. I have had two in each wrist over a year's time, each 6 months apart. Could this be a solution?

I am just so tired of taking so many meds. Any advice appreciated.

Aurora

Posted 9/23/2013 5:15 AM (GMT 0)
I am sorry to hear about the pain you are in.

I have many of the symptoms you have but mine are due to Lyme disease and a couple of co-infections, Babesia Duncani, and Bartonella.

I was prescribed Plaquenil for the anti-malarial properties, along with the IV Clyndamycin I am on to kill the Babesia. I have found that it does help with my inflammation, but it helped me within a month of taking it.

I can understand your concern regarding eye problems. I make sure to have my eyes checked frequently, (more than I probably need to), but so far so good. This medication has really helped me and I went ahead and paid a higher co-pay for the brand name just to be safe. Others may be able to tell you which generics have worked for them.

But when I started having fatigue, joint pain, headaches, neck stiffness, depression, and the list goes on, I originally thought it was because I was Pre-menopausal. It's a long story but if it weren't for my son's pet parakeet getting sick and all of us thinking we had Psittacosis (Parrot Fever), I may have never known I had Lyme Disease. Our doctor put the grown ups on Doxycycline and my children on an age appropriate antibiotic. Lyme wasn't even on my radar. But the bird just had an upper respiratory infection, and I felt better after being in the Doxy.

But when I finished my doxycycline prescription, I slowly started to go downhill again and a year or more later I googled "doxycycline and all of my symptoms" and that's how I started to begin my journey learning about Lyme disease. I knew I had something in me the doxy was killing- but I just didn't know what.

But I have been in treatment with a Lyme Literate Medical Doctor and am slowly but surely getting my life back...it's definitely a marathon and not a sprint.

If you do decide to take the Plaquenil, I would take it with food as the others have suggested. And I stay upright after taking it. I didn't realize that it would not only help kill the parasites, but also help with my inflammation.

I wish you the very best. I will keep you in my prayers.

And on a side note, I have heard great things about Low dose naltrexedone...I am pretty sure that is what it is called. It is suppose to help our immune system. I am going to ask my doctor about it. You may have already heard or know about LDN.

Best wishes! I hope you feel better!
Posted 9/23/2013 5:20 AM (GMT 0)
I forgot to ask if you have been checked for C. Difficile... It causes terrible diarrhea and is a bad bacteria in our intestines that can get out of hand- when we are exposed to someone with it, or on antibiotics without taking probiotics in between doses.

Please make sure you are staying hydrated and if your diarrhea doesn't get better, I would ask your doctor for a stool analysis.

So sorry you are going through this. Sending you healing wishes!
Posted 9/24/2013 8:18 PM (GMT 0)
Aurora,

I have been on plaquinel for over a year now.  Thank goodness with all the other meds I have to take it is working smoothly for me.  No side effects either.  I was put on it for fatigue from the RA.  It has helped me so very much.  I too would just about fight someone if they tried to take it away from me. I was very scared to take it due to the potential problems with the eyes... we only have one set of those...lol  but I have had no problems as of yet.  My optomologist said that rarely happens.  But I was afraid i would be the one it did. Good luck and I hope you feel better soon.

Hugs

Peggy

Posted 10/19/2013 8:05 PM (GMT 0)
Hi Aurora,

i'm sorry to hear about the possible side effects from the Plaquenil. I've been taking the medication for about 7 months now. Although i do not suffer from diarreaha, i have a stomach ulcer and recently had a flare up. I haven't had a flare up in 6 years. I'm not sure if there is a correlation but i have to take prescription pepcid twice a day to help with the ulcer/acid reflex. i don't take ibuprofen because of that reason. I usually carry Tylenol for me to use but that doesn't do too much but numb the pain a little. It won't do much for the swelling. Because i have RA, I don't like to use ice for swelling because it hurts worst to apply cold. I use heat for everything. I currently struggle with it being really cold in my office at work so i have a heater at my desk and i wear gloves to help with the pain/stiffness since i am at a computer all day.

Hope everything gets better for you.
Posted 10/22/2013 7:02 PM (GMT 0)
Hi Aurora,

I have been on plaquenil for 2 months and waiting for it to work which may take up to 6 months.  I have only had weight gain from it.  I was on prednisone 10 mg along with plaquenil and had a severe flare up this past weekend.  good luck and plaquenil is one of the lowest side effect drugs you can take.  I will keep you posted on my RA soon!

Good luck!

Tammy turn

Posted 10/22/2013 8:56 PM (GMT 0)

Rosy30 said...
I use heat for everything. I currently struggle with it being really cold in my office at work so i have a heater at my desk and i wear gloves to help with the pain/stiffness since i am at a computer all day.

I have one of these in my home and work offices:

http://www.americanfloormats.com/heated-floor-mats-heavy-duty-boot-warmers/?gclid=CMior9Kpq7oCFbFxQgod1iIA2A

It's wonderful for the days that my feet are hurting.

(I'm not sure how to post a link, so I apologize if it doesn't work.)
Posted 10/22/2013 10:03 PM (GMT 0)
Thank you Carole for that link. I didn't even know this was out there! There is so much I don't know. I've only been diagnosed 2 yrs ago so I feel like I have lots to learn. Ty
Posted 10/24/2013 9:58 AM (GMT 0)
I have been told I have RA. I have no pain but my left ankle swelled up every day for months so the Rheumy put me on Plaquenil. Within a couple of weeks I had pain in my sciatic nerve and it happened to be right at the time of my Rheumy appt. He gave me a shot for it and within a couple days the pain was gone. Two weeks later, I had gone for a long walk on the boardwalk with my hubby and the next day I woke up with such pain in my lower back but I could walk and didn't think much of it. Back to the Rheumy for a follow up and I told him how wonderful the shot was and because I had not had the pain in my lower back at the time I forgot to mention it. The very next day I was coming in from my backyard and was wiping my feet on the mat at the door and the pain that shot up from my lower back to my right shoulder was SCARY. I hobbled to the medicine cabinet, took a few ibuprofen...but on a heating pad and sat for the rest of the day. The next day I woke up and my vision was blurry. That is when I decided to look up the side effects of the Plaquenil. Two of the side effects that are listed as "serious" are back pain and blurred vision. I called the dr but he had already closed for the weekend so I took the meds until Sunday when I woke up with a pain under my right shoulder blade...by that evening the pain was so excruciating that I could barely breathe (my blurry vision came and went that one day). I stopped taking the meds and called the dr the next morning. It took me 2 weeks before I felt I was back to my old self. I didn't even realize that I had a terrible case of the blues as well....now I'm back to no pain and a swollen ankle at the end of every day and happy to be me again. I go back to the Dr next month....I think I'm leaning towards some natural ways to deal with this until the day (if it even comes) I have pain (that is not caused by side effects of meds).
Posted 4/7/2014 8:23 PM (GMT 0)

sjkly said...
Other than food aversions and weight loss when I first started the plaquenil I have had no side effects. Plus, I think they will have to pry it out of my cold dead hands to get me to stop taking it.

OMG, thank you for this post, the last sentence gave me my laugh for the week....:)

my doc just put me on Plaquenil, in addition to methotrexate...I am hoping for no side effects!!!and hopefully i too will feel the way you do, Im kinda like that with my meth because I know it amd know what to expect from Meth.....the Plaquenil is an unknown...just took my first dose.
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