It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Lupus Message Board
Post New Thread   Closed Thread
LinkBack Thread Tools
Old 08-08-2008, 02:21 PM   #1
Senior Member
(female)
 
Join Date: May 2006
Location: england uk
Posts: 141
topsy123 HB User
HYDROXYCHLOROQUINE, please explain???

hi everyone,
I went to see my consultant today, he said after running ALL blood tests for Lupus etc, they came back negative apart from the Shrimers test, that was positive. However due to my symptoms he want to start me on one asprin a day and a drug called Hydroxychloroquine. (I made him write it down), I have no idea why he wants to give this to me as the tests came back negative, also what will this do for me. Even though as I say again, negative tests, he does want to see me again. I asked him DO I HAVE LUPUS....he couldnt really say yes but I kind off got the feeling he want saying no either....bit confused here.
Has any else had this drug, how does it work, what is it for?.....Thanks..

 
Old 08-08-2008, 07:14 PM   #2
Facilitator
(female)
 
Join Date: Feb 2004
Posts: 4,934
VeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB User
Re: HYDROXYCHLOROQUINE, please explain???

Topsy, hi. Hydroxychloroquine (Plaquenil) is a first-tier med (meaning lightest) taken for lupus where there's no major organ involvement; it's also used for Sjogren's syndrome, and (I think) also for mild RA.

It doesn't suppress your immune system (good news!). Instead, it alters the pH balance (acid/base ratio) in your cells, which diminishes the production of damaging autoantibodies. It helps rashes, mouth ulcers, hair loss, joint swelling & pain, fatigue, brain fogginess, dry eyes & mouth, etc.

It's considered much safer than earlier drugs in its class. And since the stronger meds, steroids & immune suppressants, can have profound side effects, anyone "eligible" for this lighter drug is very lucky.

It can take upwards of 3-4 months to reach full effect.

Eye problems (pigment buildup on retina) are VERY rare but thought to be almost always reversible if the drug is discontinued. Most users have eye checkups every six months, just in case. My rheumie's practice (big & in huge city) has never seen a single instance of Plaquenil-induced eye damage, which really quelled my initial fears.

Dry Schirmer's test is for Sjogren's syndrome. But I think the most definitive test for Sjogren's is a lip biopsy.

As to why your dr. prescribed hydroxychloroquine: You didn't list your symptoms or cite other test results. You could just ask your doctor to tell you on what findings he based his decision.

Another thought: has your dr. tested you for the anti-Ro autoantibody? I ask because it's seen in Sjogren's, in SLE, and in SCLE (a "subset" of SLE). I was positive for anti-Ro & was Dx'ed with the SCLE "subset" of SLE; but I also had years of an SCLE-specific rash on arms/torso, so my Dx was easy (once I found a really competent rheumie, that is). Plaquenil has helped me a LOT; it's given me my life back (no exaggeration).

In addition to talking to your doctor, you could read. In the U.K., Dr. Graham Hughes is probably the top author for lupus & related conditions---and your local library probably has at least one of his titles.

I hope above gives you some initial ideas for questions for your doctor, etc. Post more when you can, OK? Best wishes & a big hug, from Vee

Last edited by VeeJ; 08-09-2008 at 04:25 AM. Reason: content

 
Sponsors Lightbulb
   
Old 08-12-2008, 10:05 PM   #3
Newbie
(female)
 
Join Date: Aug 2008
Location: Columbus, MS
Posts: 1
Ellycat HB User
Re: HYDROXYCHLOROQUINE, please explain???

My sister was diagnosed with Lupus about 5 years ago and is now in full remission after taking Plaquenil. She does however need to keep taking it as maintenance in order to keep it dormant. I was recently prescribed Plaquenil for my RA because I have so many side affects from the chemo drugs for RA. I can really tell it helps the joint pain and my overall feeling. I also have Lichen Planus, an auto immunne skin disorder. I am really not sure if this is another side affect of Orencia or just another parallel disease to my auto immune problems. Either way, Plaquenil is suppose to help it too. From what I've read and heard over the years, RA and Lupus can sometimes be hard to diagnose. Its good your doctor has put you on Plaquenil now to head off any future problems if you do have Lupus.

 
Old 04-14-2011, 09:30 PM   #4
Newbie
(female)
 
Join Date: Apr 2011
Location: adamsville tn
Posts: 5
psychiatric nur HB User
Re: HYDROXYCHLOROQUINE, please explain???

topsy123, the common name is plaquenil and it is for the pain of Sjogrens. The ANA will show inflamation and the Schrimers test will show positive for Sjogrens not Lupus. Sjogrens effects the mucosal membranes and soft tissues, mouth, eyes, intestines, kidneys, heart. You need to be consistent with seeing an opthamologist for testing your eyes, it can cause some damage. Only use eye drops that are preservative free. I take a low dose of Plaquenil daily and the pain has lessoned but some days the pain is unbearable usually due to stress. Although there is little known about Sjogrens it is a very common autoimmune syndrome usually brought on by a virus. The symptoms vary with everyone but some very common are dry mouth, tooth loss, dry eyes, and a rash. Hope this helps.

psychiatric nur

 
Old 04-29-2011, 11:06 AM   #5
Senior Member
(female)
 
Join Date: Mar 2009
Location: Jersey Shore
Posts: 201
Fibrobugsme HB UserFibrobugsme HB User
Re: HYDROXYCHLOROQUINE, please explain???

Quote:
Originally Posted by topsy123 View Post
hi everyone,
I went to see my consultant today, he said after running ALL blood tests for Lupus etc, they came back negative apart from the Shrimers test, that was positive. However due to my symptoms he want to start me on one asprin a day and a drug called Hydroxychloroquine. (I made him write it down), I have no idea why he wants to give this to me as the tests came back negative, also what will this do for me. Even though as I say again, negative tests, he does want to see me again. I asked him DO I HAVE LUPUS....he couldnt really say yes but I kind off got the feeling he want saying no either....bit confused here.
Has any else had this drug, how does it work, what is it for?.....Thanks..
Hi Topsy, I have recently started taking this medication myself along with Prednisone. My Rheumy who practices in a major city university hospital isn't sure after several visits and lots of tests if I have seronegative RA, if it's Lupus or some other connective tissue disease so he put me on these two drugs saying that he would begin treatment for any of these 3 with this combination. I did great on high doese of Prednisone but now at lower dosages not that great. I have been on Plaquenil for about 6 weeks now so it hasn't fully kicked in yet. I have been to my eye doctor for an exam and a "field test". If you're going to spend any time on this medication they need to monitor your visit closely. Not sure how long I'll be on it but it's best to be safe than sorry. I have only two side effects from Plaquenil and neither are pleasant but if it helps I'll lean to deal with them. One is sweating. It's like hot flashes but I've never had them. I just feel overcome with heat and sweat from the top of my head straight down...the other is GAS. Too bad I can't fill my car with it. HOLY COW!! But, like I said, if I can get relieve from my inflammation and other symptoms I'll gladly put up with the sweats and gas. I hope you're doing well on your medications.
Take care,
Sharon

 
Old 04-29-2011, 03:28 PM   #6
Facilitator
(female)
 
Join Date: Feb 2004
Posts: 4,934
VeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB User
Re: HYDROXYCHLOROQUINE, please explain???

Fibro, I heated up, too, one hour after, like clockwork. Persisted about a year, then stopped. I felt bilious at first: luckily that faded much faster. Hope you settle in soon. Take care, Vee

Last edited by VeeJ; 04-29-2011 at 03:29 PM. Reason: typo

 
Old 04-30-2011, 07:50 AM   #7
Senior Member
(female)
 
Join Date: Mar 2009
Location: Jersey Shore
Posts: 201
Fibrobugsme HB UserFibrobugsme HB User
Re: HYDROXYCHLOROQUINE, please explain???

Quote:
Originally Posted by VeeJ View Post
Fibro, I heated up, too, one hour after, like clockwork. Persisted about a year, then stopped. I felt bilious at first: luckily that faded much faster. Hope you settle in soon. Take care, Vee


Veej, how long did it take for you Plaquenil to take effect for you? I'm just over 6 weeks into it and I don't think it's kicked in just yet. I started out with Prednisone at 20 mg and it was working extremely well. I felt great!!! Best I've felt in over 20 years since I first started to get sick. Then after a month he cut the dosage in half and wanted me to go down to 5 mg. He suggested a 10 mg one day and 5 the next and sort of back and forth until I can stay at 5. It's not working out too well and I'm feeling pretty much like I did before Pred. It's sad. That month was really great while it lasted. My doctor is leaving the practice and I'll be seeing someone new. I don't go back until June 28th. I have a huge problem with inflammation and I'm wondering if Plaquenil will effect that? Did it for you?
Take care,
Sharon

 
Old 04-30-2011, 10:54 AM   #8
Newbie
(female)
 
Nibor52's Avatar
 
Join Date: Apr 2011
Location: Nashville, TN, USA
Posts: 1
Nibor52 HB User
Re: HYDROXYCHLOROQUINE, please explain???

I take this for SLE (lupus) it is the generic for •Plaquenil. I use it for being extremely tired. I do know that it is used for other disorders. Do a search for it on the internet and it gives a lot more information. Hope this helps.

 
Old 04-30-2011, 02:09 PM   #9
Facilitator
(female)
 
Join Date: Feb 2004
Posts: 4,934
VeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB User
Re: HYDROXYCHLOROQUINE, please explain???

Fibro, I felt effects quickly, then quite a bit by 2-3 months. Since then, I've been on a plateau. I still hurt & get tired episodically, but to subtantially lesser degrees than before. I'm actually more weather-sensitive now, but that may also be age (I'm 11 years older now). Best of all, some of my worst problems completely disappeared (migraines, chronic urinary & GI problems, neuro-like tingling, anemia).

I imagine Prednisone gave you a bigger "boost". I never took it, so I never got to compare the effects of Prednisone vs. Plaquenil. That may explain the sense of let-down you're feeling...?

Plaquenil is definitely supposed to help inflammation. If it's not helping fast enough, you could discuss with new rheumatologist. Maybe he'll consider a slightly stronger dose of steroids, or maybe suggest that you augment Plaquenil with just OTC NSAID's. Why not call his office & ask? Beats being msierable! Wishing you faster improvement, Vee

 
Old 04-30-2011, 03:10 PM   #10
Senior Member
(female)
 
Join Date: Mar 2009
Location: Jersey Shore
Posts: 201
Fibrobugsme HB UserFibrobugsme HB User
Re: HYDROXYCHLOROQUINE, please explain???

Quote:
Originally Posted by VeeJ View Post
Fibro, I felt effects quickly, then quite a bit by 2-3 months. Since then, I've been on a plateau. I still hurt & get tired episodically, but to subtantially lesser degrees than before. I'm actually more weather-sensitive now, but that may also be age (I'm 11 years older now). Best of all, some of my worst problems completely disappeared (migraines, chronic urinary & GI problems, neuro-like tingling, anemia).

I imagine Prednisone gave you a bigger "boost". I never took it, so I never got to compare the effects of Prednisone vs. Plaquenil. That may explain the sense of let-down you're feeling...?

Plaquenil is definitely supposed to help inflammation. If it's not helping fast enough, you could discuss with new rheumatologist. Maybe he'll consider a slightly stronger dose of steroids, or maybe suggest that you augment Plaquenil with just OTC NSAID's. Why not call his office & ask? Beats being msierable! Wishing you faster improvement, Vee
Hi Veej. I started Prednisone in February and for a month I felt on top of the world. I've been sick for so many years and there has been NO relief at all. Finally the doctor put me on Pred at 20mg. Took about 2 days for me to feel better and I was a different person. I could move without too much trouble. I left alive again. The results were dramatic but after the month was up he cut the dosage in half and added Plaquenil. He had blood work done before I started Pred and then two weeks later. It had dropped my SED rate by about 30 points but it was still high. I felt sure he would leave me on that dosage for another month or so waiting for Plaquenil to kick in but he cut the dosage and now wants me to go to 5 mg and he said to do 10 mg one day and 5 the next... This is just killer. I'm thinking what I might do is call the office and leave a message or send a fax or something and ask if he can raise the dosage for another month or two until I can feel the effects of Plaquenil. Don't know if he will or not but I'm in a bad way now. The OTC things quit on me years ago. I have Hydrocodone and it helps to some degree. My joints all hurt again...spent the day today in bed. I'm just back to square one and I hoped I was on a better road than this after that one month when I felt so good. It's just not fair. By the way, I'm on 400 mg of Plaquenil...is that an average dosage?
Take care,
Sharon

 
Old 04-30-2011, 06:20 PM   #11
Facilitator
(female)
 
Join Date: Feb 2004
Posts: 4,934
VeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB User
Re: HYDROXYCHLOROQUINE, please explain???

Hi. I think a typical Plaquenil dosage is 200 mg twice daily for 1-2 years, then dropping to 200 mg daily. I had a year of mindless crippling pain as a teen & will never forget it, ever. UGH! Let us know how you make out when you discuss w/dr. Good luck, sympathetically, Vee

 
The Following User Says Thank You to VeeJ For This Useful Post:
nitateaches (07-10-2011)
Closed Thread

Similar Threads
Thread Thread Starter Board Replies Last Post
please help me... littlek13 Anxiety 5 01-22-2009 08:43 PM
Hydroxychloroquine and itchy skin Angie10 Lupus 6 08-23-2007 04:12 PM
In search of help/advice. Please read faydid1 Mental Health 2 05-06-2007 08:01 PM
Hydroxychloroquine/and other meds and Lab tests? kare4me Lupus 0 02-12-2007 09:26 AM
Your input please... (Long) EightyOne Bipolar Disorder 2 03-18-2006 05:45 AM




Thread Tools

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off
Trackbacks are Off
Pingbacks are Off
Refbacks are Off




Join Our Newsletter

Stay healthy through tips curated by our health experts.

Whoops,

There was a problem adding your email Try again

Thank You

Your email has been added








TOP THANKED CONTRIBUTORS



VeeJ (172), ladybud (43), AngelicBrat (16), luca689 (7), ksp (6), neveragain444 (6), luvinmusiq (5), brooklyngirl (4), Daisygrace (4), AgedFlowerChild (3)

Site Wide Totals

teteri66 (1180), MSJayhawk (1004), Apollo123 (903), Titchou (847), janewhite1 (823), Gabriel (759), ladybud (754), sammy64 (668), midwest1 (668), BlueSkies14 (610)



All times are GMT -7. The time now is 06:20 AM.



Site owned and operated by HealthBoards.com™
Terms of Use © 1998-2014 HealthBoards.com™ All rights reserved.
Do not copy or redistribute in any form!