Hi, just starting Plaquenil

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tory2457
Regular Member


Date Joined Jan 2007
Total Posts : 380
   Posted 8/14/2007 1:04 PM (GMT -7)   
Hi to all,
 
I'm from the Lyme board, and just starting Plaquenil. I was curious if anyone here can tell me if they found it helped.
 
I was also curious if their doc suggested a Visual Field Eye exam as mine did.
 
This is new to me and any replies are greatly appreciated!
 
Many thanks,
tory

hunnybunny
Regular Member


Date Joined Jun 2007
Total Posts : 21
   Posted 8/14/2007 3:29 PM (GMT -7)   
Hi, I have been on Placquenil for about 3 years.  It has helped me a great deal.  I do get dry eyes, which I have been prescribed drops.  I have to get eye tests every six months.  I haven't had any problems except the dry eyes.  Every once in a while the Dr. takes me from 2 pills a day down to 1 pill a day.  I have MCTD which is like RA.  Hope it helps.  Hunnybunny

CaMama
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Date Joined Mar 2005
Total Posts : 1884
   Posted 8/15/2007 10:00 AM (GMT -7)   
Hi, I have been on it for 2 years now. It works great for me. My doc recently added Arava as I was having a severe flare that wouldn't let up and the plaquenil just wasn't enough.  The plaquenil slowly starts working over a few weeks or months - it can be very subtle, then all of a sudden, you realize you feel great! I have had to stop it here and there - and boy do I feel it! So, I feel it has been well 'tested' for me and proven to work. 
 
I go in every 6-8 months as well for eye exams.
 
Good luck.
***
 


tory2457
Regular Member


Date Joined Jan 2007
Total Posts : 380
   Posted 8/15/2007 10:54 AM (GMT -7)   
thank you both for sharing your experiences.

I'm not really concerned that I will have an eye issue; just thought I'd ask the question.

It's nice to hear that your both finding success..
I have MS and am now treating it as Lyme Disease. In these past few months I have "really" bad knee and ankle soreness and numbness!

yikes, I can really feel for all of you that suffer....:(

My script mentioned Plaquenil is used for RA's....just like when I was on Minocycline..same thing the prescription mentioned used for RA..

Has Mino been a regular med for you? I scratch my head when I see some of these meds good for other illness; how do docs determine,,,I will prescribe for this one, I won't for that one?

anyway a BIG
Thanks again, :)
tory

CaMama
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Date Joined Mar 2005
Total Posts : 1884
   Posted 8/15/2007 6:06 PM (GMT -7)   

I don't recall having been given that particular med, so I am unfamiliar with it.

Plaquenil is an old medication - as many, like methotrexate, are.  I think sometimes these meds are for one thing, but they find over time that they do help other ailments. I don't know if it plaquenil or azulphidine....or what, but it was originally a typhoid medication. They learned that patients who also had joint pain/issues were feeling better while taking the typhoid medicaiton....long story short - it is now given as an RA drug.

How they determine which TYPE of RA it helps makes me laugh since, in my experience, no 2 doctors can agree on WHICH TYPE of RA I have! tongue Take care.

****
 


tory2457
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Date Joined Jan 2007
Total Posts : 380
   Posted 8/16/2007 8:44 AM (GMT -7)   

How about it, I couldn't agree more!

Sounds just like Neuros...some say you MUST have a Spinal Tap for a MS diagnosis,,,other say not needed, not very reliable!

Yes, Plaquenil is for malaria. But in conjunction with an antibiotic the Plaq actually helps when the bugs pushes out the antibiotic; making it ineffective. The plaq aids in the acidic environment and kills the bacteria. yeah My swollen ankles and feet and toes are feeling better already! but then again it comes and goes! my doc says it neurological and could take some time!

thanks again! and I sure wish you good health!

KrissyNTexas
New Member


Date Joined Aug 2007
Total Posts : 4
   Posted 8/16/2007 12:10 PM (GMT -7)   
Yes, I have a regular eye doctor visits after using Plaquenil.  And yes, Plaquenil does help.  Best wishes.

blukygrl
New Member


Date Joined Aug 2007
Total Posts : 4
   Posted 8/16/2007 9:02 PM (GMT -7)   
I have been on plaquenil since December for RA. At first it caused some embarrasing gas, but that didn't last too long. I started out with 2-200mg pills a day, now I take 1-200 mg every day except Thursday and Sunday and I take 2 on those days.

It took about 3 months to notice a difference. It seemed I wasn't as fatigued and my foot pain got better. There were some stubborn joints that had to be injected. Now, after almost 8 months, I will be adding methotrexate or Arava soon. I still flare regularly, but I am so much better than I was. I don't mind adding to the plaquenil, but I don't want to give it up.

I am required to have an eye exam every 6 months with a visual field test included. The only eye thing that I've noticed is that I am way more sensitive to light. I have never worn sunglasses before, but I have to have them even on cloudy days. I don't mind, that is a small price to pay.

tory2457
Regular Member


Date Joined Jan 2007
Total Posts : 380
   Posted 8/18/2007 4:27 AM (GMT -7)   

thanks KrissyNTexas

blukygrl-

my doc did mention I could have GI issues; luckily for me the bugs didn't take up residence there..

My minocycline script mentioned it's used for RA...have you ever tried it? If so, it would be important to not take steroids.

 


blukygrl
New Member


Date Joined Aug 2007
Total Posts : 4
   Posted 8/18/2007 9:58 PM (GMT -7)   
I've never tried minocycline. I take prednisone, plaquenil, piroxicam, prilosec, and tramadol. I'm still having problems and will most likely add methotrexate or arava in Oct.

tory2457
Regular Member


Date Joined Jan 2007
Total Posts : 380
   Posted 8/19/2007 6:07 AM (GMT -7)   
I found it interesting that a script would say Minocycline for RA.
 
Quick story: a relative of mine has suffered from RA, Fibro for years; she did get a ELISA lyme test and it was negative (of course).
Her son was thinking if she had lyme, he'd cure her with "eating" right. Good offering,,but nothing was changing.
 
I mentioned Mino to him, he eventually took her to a Lyme Doctor, she tested through a lab that specializes in Tick-Borne Illnesses, again tested negative but with specific Lyme bands positive. She did however test positive for Babesia...a co-infection to lyme. another words, you can't have babesia without having lyme!
 
I'm mentioning this because Mino is to kill bacteria! and the script led me to scratch my head..
 
the other crazy thing is if there is an infection: steroids are not recommended. It's the bacteria's food.
 
Wishing you success,
tory

CaMama
Veteran Member


Date Joined Mar 2005
Total Posts : 1884
   Posted 8/19/2007 8:11 PM (GMT -7)   
That's good to knwo about the steroids and w/infection.
 
I take plaquenil and arava now - I don't know if I mentioned that already.  The plaquenil works great (2 1/2 yrs now), but I was starting to have flares and problems I haven't had in 15 years! The addition has helped quite a bit!
 


tory2457
Regular Member


Date Joined Jan 2007
Total Posts : 380
   Posted 8/20/2007 6:19 AM (GMT -7)   
CaMama,

If you're having a flare, maybe you can talk to your doc about adding Minocycline?

again, making sure to eliminate the steroids.

Hoping you feel better.

CaMama
Veteran Member


Date Joined Mar 2005
Total Posts : 1884
   Posted 8/20/2007 7:41 PM (GMT -7)   
If that is the antibiotic RA treatment, we have discussed it. I know there were some pros and cons with it....but he is not against trying it. I need to research it again and decide. If Arava ends up not working or causing my health to fail again (like the last that could affect the liver) that very likely will be the next step.  I don't take steriods....I can't tolerate them and in the past I felt so rotten on them, I don't even know if they helped! Thanks for bringing it up and reminding me about that option.
***
 


tory2457
Regular Member


Date Joined Jan 2007
Total Posts : 380
   Posted 8/21/2007 5:25 AM (GMT -7)   
no problem!

It's sometimes frustrating when I notice people give antibiotics a try; yet continue steroids...they rule each other out--

Also, if you begin feeling lousy if you try an antibiotic,,don't throw in the towel. That's common. Remain on the abx, and record how you feel.

Then perhaps jump over to the lyme board and tell your story!

curley
Veteran Member


Date Joined Mar 2005
Total Posts : 4305
   Posted 8/26/2007 12:53 AM (GMT -7)   
I'm on Plaquenil and yes my Doctor told me that I would have to have my eye's checked every six months.The last exam I had done my changed enough to were I had to have stronger glasses.
Curley
.........
 


tory2457
Regular Member


Date Joined Jan 2007
Total Posts : 380
   Posted 8/29/2007 6:14 AM (GMT -7)   
thanks for that Curley,

as I read about Plaquenil it's a low percentage of us who actually have any vision problems. and this after yrs on it

my doc said it's a good idea to have a "base" a starting point when I begin with the Plaq. in order to watch if there are side effects.

How long are you on Plaq? I guess needing only a stronger prescription isn't a negative side effect?

babyplace
Regular Member


Date Joined May 2007
Total Posts : 499
   Posted 8/29/2007 6:55 AM (GMT -7)   
Hi guys,
Tory, was wondering how the first doses of plaq went for you? My doc just gave me a script for it yesterday, and am going to start it Friday with dinner. I'm a little sensative to meds, and have just been on mtx and nsaids up to this point. Any suggestions?
Thank you,
Jody

tory2457
Regular Member


Date Joined Jan 2007
Total Posts : 380
   Posted 8/31/2007 11:34 AM (GMT -7)   
Hi Babyplace,
 
I'm on Biaxin and Plaq for almost a month now.
 
I am having really good results: my knees feel soo much better and my numb toes and feet and ankles are also improving.
 
With LD we can't take steroids, so I can't comment on "how" you'll feel.
 
My doc said that extra gas, and some itchy-ness can occur. I had itchy legs....
 
I hope Plaq works for you; I never had such knee pain like this before so I really feel for all of you who live with this!
 
the best,
tory
 
 
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