Just diagnosed with RA and have a question about Plaquenil

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CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 6/6/2010 4:45 PM (GMT -7)   
Hey everyone. I was just diagnosed with RA about a week and a half ago. My rheumy put me on Plaquenil but I haven't started it yet. I am just really overwhelmed by everything and I am already taking medicine for fibro and a few other things as you can see listed in my signature. The Savella for fibro is helping me a whole lot but the stiffness I have been experiencing is still there. I am assuming this is from RA? Anyway, if anyone is on this medication or has tried this, please give me your experiences with it. I am so sensitive to medication and hate starting new ones. Please tell me of any side effects you may have had and anything I should be aware of before I start taking this medication.
 
Thanks so much everyone.
Lyme disease, Fibromyalgia, Hashimoto's Thyroiditis, Adrenal Fatigue, Rheumatoid Arthritis(Just diagnosed)
Prescription Meds: Savella, Tramadol, Hydrocortisone, Plaquenil
Supplements: Thyro-complex, Magnesium, Calcium, Potassium, Folic Acid, Fish Oil, Vitamin C, Probiotics, GI Repair, Vitamin D 50,000IU and Joint Supplement

Co-Moderator Lyme Disease Forum


Cherokee Squaw
New Member


Date Joined Dec 2009
Total Posts : 9
   Posted 6/6/2010 5:48 PM (GMT -7)   
Hi CajunGrl,

So sorry about your diagnose. I also have been diagnosed with RA around 8 years ago. Last December, I went to a Rheumy doc to finally try a treatment. I've been afraid to try anything else, but the stiffness and aching was getting me to the point I was having trouble tending to my grandchildren. She put me on Plaquenil also. I took it for a month or so and couldn't tell any difference. She told me it was very safe. The next visit the first thing she said was to be sure and have my eyes checked often as a side effect could cause eye damage. Needless to say, I didn't refill the next round. The other meds cause immune suppression and I am afraid of the cancer risk. Sorry I couldn't help more!

CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 6/6/2010 5:52 PM (GMT -7)   
Thank you for responding Cherokee. My rheumy talked to me about the eye damage, but told me I wasn't on a high enough dose to worry about it? I'm not sure. I am supposed to take 200mg twice a day. How much were you on?
Lyme disease, Fibromyalgia, Hashimoto's Thyroiditis, Adrenal Fatigue, Rheumatoid Arthritis(Just diagnosed)
Prescription Meds: Savella, Tramadol, Hydrocortisone, Plaquenil
Supplements: Thyro-complex, Magnesium, Calcium, Potassium, Folic Acid, Fish Oil, Vitamin C, Probiotics, GI Repair, Vitamin D 50,000IU and Joint Supplement

Co-Moderator Lyme Disease Forum


sjkly
Veteran Member


Date Joined Dec 2007
Total Posts : 2113
   Posted 6/6/2010 6:20 PM (GMT -7)   
200 mgs twice a day is the standard dose-the side effect of eye damage is extreemly rare and if it is detected you stop takeing the plaquenil and the damage is reversed.

The side effects you might actually experience when starting treatment are nausia, feeling motionsick, and posibly mild headaches. Plaq is subtle, and takes a while. You won't wake up on day 2 and say "WOW I feel better." Instead after two or three months you will leave the house one morning and realize you forgot to take your meds. (Prior to plaq, I used to count the hours between doses and wish I could take more). Then you will realize that you haven't been unusually tired, had morning stiffness, or had an unexplained fever in a while.

You may need additional medications to control inflamation.

CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 6/6/2010 8:53 PM (GMT -7)   
sjkly,

Thank you so much for that post! It encourages me. I don't mind waiting a few months. I've been in severe pain for a year and a half. What's a few months to feel better?

One more thing I want to ask...I didn't know that RA could cause fevers. I get them every month. My rheumy didn't seem to say much about them either. Does RA cause this from all of the inflammation?
Lyme disease, Fibromyalgia, Hashimoto's Thyroiditis, Adrenal Fatigue, Rheumatoid Arthritis(Just diagnosed)
Prescription Meds: Savella, Tramadol, Hydrocortisone, Plaquenil
Supplements: Thyro-complex, Magnesium, Calcium, Potassium, Folic Acid, Fish Oil, Vitamin C, Probiotics, GI Repair, Vitamin D 50,000IU and Joint Supplement

Co-Moderator Lyme Disease Forum


SydneyJo
Veteran Member


Date Joined Mar 2006
Total Posts : 1354
   Posted 6/7/2010 3:47 AM (GMT -7)   

Hi CajunGrl :-)

Sorry you are having to post on here now.

I suffer from fevers when my RA is flaring, I guess its another symptom I have to let me know all is not good.

Good luck with the Plaquenil, I hope its the right med for you.

Keep posting with updates on how you are going.

Jo


Crohn's Disease, Ankylosing Spondylitis
Current meds: Methotrexate, Humira
Bowel Resection Sept. 07
 
Forum Moderator - Rheumatoid Arthritis


CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 6/7/2010 5:58 AM (GMT -7)   
Hey sydneyjo,

How weird is it that my rheumy didn't mention fevers. I guess it's because it's every month for about a week and I also get a sore throat, fast heartrate, my pain worsens(but this is probably from the flare), chills, headaches, head and arm jerks and of course fever(low grade).

I get frustrated because I used to be able to do so much and now I can't. I guess I have to look on the bright side and see that just a month ago, I couldn't do anything. I was in bed most of the time for over a year and now since I've started taking Savella, it's got me moving around again. I think I expected too much though and got let down again. I really hate not being able to do things with friends and family like I used to. I think they all look at me like "the sick one" and expect me not to show up anywhere...which is true, but I don't want to be like that anymore.
Lyme disease, Fibromyalgia, Hashimoto's Thyroiditis, Adrenal Fatigue, Rheumatoid Arthritis(Just diagnosed)
Prescription Meds: Savella, Tramadol, Hydrocortisone, Plaquenil
Supplements: Thyro-complex, Magnesium, Calcium, Potassium, Folic Acid, Fish Oil, Vitamin C, Probiotics, GI Repair, Vitamin D 50,000IU and Joint Supplement

Co-Moderator Lyme Disease Forum


sjkly
Veteran Member


Date Joined Dec 2007
Total Posts : 2113
   Posted 6/7/2010 7:17 PM (GMT -7)   
RA definetly causes otherwise unexplained fevers. It is often discribed as flu like symptoms, fever, fatigue, and that "I have been run over by a bus feeling."

CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 6/8/2010 7:05 AM (GMT -7)   
sjkly,

Thanks so much. I looked up the symptoms, but had to type in "Rheumatoid Arthritis and Fever" for it to say that fever was one of the symptoms. I found a website that listed alot of what I experience including the flu-like feeling and fatigue.
Lyme disease, Fibromyalgia, Hashimoto's Thyroiditis, Adrenal Fatigue, Rheumatoid Arthritis(Just diagnosed)
Prescription Meds: Savella, Tramadol, Hydrocortisone, Plaquenil
Supplements: Thyro-complex, Magnesium, Calcium, Potassium, Folic Acid, Fish Oil, Vitamin C, Probiotics, GI Repair, Vitamin D 50,000IU and Joint Supplement

Co-Moderator Lyme Disease Forum


jeanneac
Veteran Member


Date Joined Feb 2009
Total Posts : 1812
   Posted 6/8/2010 4:40 PM (GMT -7)   
I have been on plaquenil for a few weeks now and so far, so good. I am very sensitive to meds too. I am waiting to wake up one day and feel good again. I do not have RA but have a positive ANA, joint pain, malaise etc.... I had my PCP tell me she wanted me to "exercise"; she said with enthusiasm. I wanted to strangle her young, health skinny little a--. How can you do that when you feel like you have been hit by a bus? I do like that expession b/c that is just what you feel like. You know, I don't wish this on anyone but I do wish some doctors had more understanding. I was fit, athletic and thin before all this crap hit me.

I hope the plaquenil is good for both of us! Good luck.
d 1/09 with colitis sigmoid colon with some diverticular disease as well
IBS, asthma/allergies,  high BP, fibromyalgia, GERD, restless legs and periodic limb movement in sleep, low thyroid, the list keeps growing..........................
claritin, singulair, diovan, progesterone, VSL#3 probiotic, Vit. D, colazal, plaquenil back on cymbalta for pain, nexium for reflux (trying again)
Blood test positive for Crohn's via prometheus ibd serology panel ASCA
Positive ANA rheumatologist suspects mixed connective tissue disease 4/2010
Collitis doing OK for now, it's fatigue and joint pain that are plagueing me right now!!!


CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 6/8/2010 6:41 PM (GMT -7)   
Thanks jeanneac! I've been to a few doctors that don't show much compassion. And yes, it does feel like you've been hit by something. I used to wake up feeling like someone had beaten me up all night. It's a horrible feeling and I feel too young to be going through this. My kids are grown and I am at the right age where I can finally have a little fun with my hubby and maybe travel, etc. Now I'm stuck at home hurting and stiff. I'm hoping the Plaquenil works for both of us too. Good luck!
Lyme disease, Fibromyalgia, Hashimoto's Thyroiditis, Adrenal Fatigue, Rheumatoid Arthritis(Just diagnosed)
Prescription Meds: Savella, Tramadol, Hydrocortisone, Plaquenil
Supplements: Thyro-complex, Magnesium, Calcium, Potassium, Folic Acid, Fish Oil, Vitamin C, Probiotics, GI Repair, Vitamin D 50,000IU and Joint Supplement

Co-Moderator Lyme Disease Forum


TayIsa
Regular Member


Date Joined Sep 2008
Total Posts : 285
   Posted 7/14/2010 9:05 AM (GMT -7)   
Hi, I take plaquenil. 400mg a day. It makes me a bit tired....so I take mine about an hour before bed....in hopes it will help me sleep...hahaha, but also because I find it easier to remember at nite.
My rhuemy says it is an older med. I definitely know the next day if I have forgotten to take it the nite before.... so I have to say it helps somewhat.  I still hurt all the time, and am on pain meds and another anti-inflamatory drug.
I have to get my eyes tested at least once a year for any problems caused by the plaquenil. So far...no problems.But apparently if you do have problems it can lead to blindness....pretty scarey so please get your eyes checked.  I had to get my eyes checked before I started the med, so that the doctor would know what "normal" looked like as compared to while I was taking the plaquenil.
It is definitly worth trying this med to see if it will help you, good luck . (gentle hugs) hope you feel some relief soon.

wearyRAsufferer
Veteran Member


Date Joined Mar 2010
Total Posts : 2329
   Posted 7/14/2010 9:33 AM (GMT -7)   
What we all have to remember when we don't want to (are afraid to) take our meds due to "possible" side effects -is what will definitely happen to us if we do not slow or stop the progression of our very serious disease. Once erosions occur you can turn it back. They cause pain & deformity that will NEVER go away.
I was scared to death of MTX- but not anymore.
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