Plaquenil anyone?

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elcamino
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   Posted 4/6/2006 4:29 PM (GMT -7)   
Hi all.  I saw my rheumatologist this morning and had a real heart-to-heart with him regarding my mother, who died from MCTD, and how strikingly similar my current symptoms are to her early symptoms.  In the past I haven't tested positive for the specific antibodies unique to lupus or MCTD, but neither did my mother for several years.  He agreed that it is a possibility for me, especially since I have raynaud's in addition to the joint pains, and he's adding plaquenil to my current mix of medications (Enbrel, Aciphex).  Plaquenil is often used for lupus-arthritis in addition to RA because it will slow the course of lupus if you take it long enough (I guess).   Also, if I don't feel substantial improvement in the next six weeks, he's taking me off enbrel because he said that combined with the Humira that I took for 3 months I should have felt a cumulative effect from both drugs by  now.   Have any of you taken plaquenil for RA, or other related problems?  If so, how long before you felt any difference?
 
Thanks!  I hope everyone is doing well.
Elcamino

CaMama
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   Posted 4/6/2006 10:21 PM (GMT -7)   
ElCamino - I have been taking Plaquenil for almost a year now and have had amazing results. it is one of the few drugs I have actually SEEN and FELT a HUGE difference with besides Remicade and Azulphidine. In fact, it works much better than azulphidine did and I'm not having the reactions I was having w/Remicade - all in all, I am very happy with it. I saw the opthamologist a few months back and he said the "eye sight" warning is just a precaution. To attempt to quote him, "with the amounts they give these days, the eye problems are pretty much non-existant....I have never seen anyone with a problem from it."
 
I have been diagnoses with psoriatic arthritis and rheumatoid, but suspect I have Lupus for various reasons (but doctor dismissed talking about it when I asked him the possiblity.)
 
You might get some mighty tummy rumblings for a few days - but it goes away. If you stop taking for whatever reason for a short while and start up again, expect the rumblies in your tummy again.
***
 


starrnr
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   Posted 4/6/2006 10:29 PM (GMT -7)   
When I was first diagnosed with RA about 12 years ago, my doctor put me on Plaquenil. It was the best thing since sliced bread as far as I was concerned. Of course, this is way before all of the current stuff. It took about 2 weeks (if I remember correctly) to really take effect, but my hands stopped hurting, I could use them as if nothing was wrong and I felt fine. The problem (back then) was that they were very expensive and my medical insurance (Kaiser at the time) didn't cover them - they prescribed it, just didn't cover it. I just couldn't afford it back then, so I quit taking them. It didn't take long for the pain and stuff to return and boy o boy, did it return. If RA was all I had now, I'd gladly take it.

Go ahead, take the Plaquenil - it can't hurt, might even help you. I believe there are some tests they need to run regularly, although I don't know what they are - I'm sure someone will come along and fill you in on that.

Good luck, Sherree

erin.K
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Date Joined Mar 2005
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   Posted 4/6/2006 11:19 PM (GMT -7)   

cool  hi elcamino,

did they ever give you a definitive DX of RA?  i know who've some sort of IBD, but which one again?  my apologies for not remembering, but i do remember however your dealing with a definitive diagnosis.

ya know...you can never go wrong with a medication that has been around A LONG TIME!  i say go for it! 

yes, you do have to go for regular BW to check liver enzymes & i think they still do regular every 6 month eye exams. but those are good to do anyway.

i have to ask you something.  i'm not doubting your docs practice or theories, but to me it seems like giving these TNFs only a few months time to see if they work a little hasty?  6 months is a short time.  is it you decision to stop and switch meds?

when i was on Enbrel a few years ago, it took about 4 to 5 months to feel effects that were beneficial. 

good luck with the plaquenil!  when do you start?

the best to you!

erin 


Active, Severe RA. Crohns Disease. Chiari Malformation & Right Brain venous anomoly. AS. Emphysema. Rheumatic Lung. MVP and Tricuspid prolapse. Had Lymes disease for 10 years.
Meds: Humira 40mg every 4 days; pred; Pentasa; Imuran; dilaudid; diazepam; Avinza 30mg; MiraLax & too many others.


elcamino
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Date Joined Sep 2005
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   Posted 4/7/2006 4:59 AM (GMT -7)   

Thanks for the info.  Good to know about the tummy rumblings.  My rheumy told me to take two plaquenil/day, but start off with one a day for about a week so as not to upset my system.  Perhaps he was referring to the GI issues related to plaquenil.

Erin, I do have an official dx of RA.  But neither my rheumatololgist, my GI doctor, nor myself actually believe I have RA.  I have a positive RF with the symmetrical joint pain and raynaud's.  No swelling or deformities that are typically associated with RA.  I also have bad upper GI problems.  In the past, I've had lower GI issues, which led to a colonoscopy last August.  They found ulcers throughout my colon, but biopsies were negative for IBD.  Nevertheless, IBD is also a possible issue--hasn't been ruled out, despite the fact that my most recent colonoscopy (Feb) was clear.  GI doctor and rheumatologist feel that the medicines I've been on (sulfasalazine and Humira) would have taken care of the ulcers.  We just don't know what caused the ulcers to begin with.  I've always suspected that I was experiencing early lupus or MCTD (the polymyositis associated with MCTD can cause GI inflammation), but my bloodwork has not caught up with my symptoms yet.  My mom had a positive RF and a negative ANA for years before being diagnosed with SLE. 

I've also read, Erin, that enbrel can take up to 6 months (in fact, my rheumatologist has told me that).  I didn't question him further about taking me off it in another 6 weeks, but I suspect that maybe my bloodwork isn't optimal (perhaps not abnormal, but borderline), and continuing with the enbrel, if it's not doing anything, is probably not worth the risk. 

Quite honestly, it freaks me out to think I could be developing the same thing my mother died from (not that I would die from it, but when you grow up seeing your mother in and out of ICU, you might get that impression).  The only person I can really talk to about my fears is my husband (and he is wonderful).  My siblings are even more freaked about the possibility of my having MCTD/lupus than I am, and I would never in a million years mention it to my father.

I feel like I'm getting too caught up in this diagnostic stuff, though.  Truly, as my rheumatologist reminded me yesterday, the bottom line is I don't feel well.  I would do better to place my energies in symptom reduction than trying to figure out what disease I'm developing (although that certainly is important in the long run).

Oops, didn't know I turned this into a huge vent.  Sorry--and thanks if you've bothered to read this!

Elcamino


erin.K
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Date Joined Mar 2005
Total Posts : 3148
   Posted 4/7/2006 8:27 AM (GMT -7)   

oh, i understand.  sounds very very complicated.

but overall, i do hope you find some relief with something at least.

hang in there,

erin


Active, Severe RA. Crohns Disease. Chiari Malformation & Right Brain venous anomoly. AS. Emphysema. Rheumatic Lung. MVP and Tricuspid prolapse. Had Lymes disease for 10 years.
Meds: Humira 40mg every 4 days; pred; Pentasa; Imuran; dilaudid; diazepam; Avinza 30mg; MiraLax & too many others.


CaMama
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Date Joined Mar 2005
Total Posts : 1884
   Posted 4/7/2006 8:50 AM (GMT -7)   

Well, it does sound like your rhuemy is wanting to help you and make you feel better and that is awesome.

I can understand your fears and how all this can stress you out. I hope you find good results with plaquenil. I can't remember how long it took for it to kick in with me, I don't think that long - but eventually, I "tested it" by not taking it for a few day, and by day 4 I was MISERABLE and soon as I went back on it, I was better after a few doses.

**
 


missie1227
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Date Joined Nov 2005
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   Posted 4/7/2006 10:16 PM (GMT -7)   
i would like to know how this med actually helps a person to feel better? i take it is not a nsaid or anti -inflam like predisone is it?
how does it help and doesd it mask the symtpoms or stop the disease from getting worse?
9-02 crash w/ C-5-6-7 anterior/posterior fusion in neck w/11 screws and 4 metal plates. multilevel HNP at T & L section. FMS, PA in dec 05. SSI approved after 2.5 yr wait. sezuires, CTS, etc. on norco, xanax etc. i dont know what else is wrong with me and neither does anyone else!!!


CaMama
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Date Joined Mar 2005
Total Posts : 1884
   Posted 4/7/2006 10:29 PM (GMT -7)   

I  believe it is a DMARD. My rhuemy, who is waiting, trying, and pushing to get me on Enbrel (not that I'm against it completely, but my health just doesn't seem to want to cooperate - long story) SAYS that, though it is helping, it does not stop the degeneration process like a TNF inhibitor does (remicade, enbrel, and humira - I think a 4th one recently came out on the market as well.)

I still get flares, have to watch it, and am still affected by weather and what not, but usually in a much more tolerable manner and I"m often better with my swelling, stiffness, and pain on a more regular basis.  Which, in turn, makes me feel better, sleep better, and you know how that domino effect works.  When I "tested' how well it worked, my joints very noticably and quickly stiffened up and slowed down, then pain followed soon afterwards. 

**
 


elcamino
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Date Joined Sep 2005
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   Posted 4/8/2006 5:28 AM (GMT -7)   

Oh, so you're currently taking plaquenil, Camama?  I think if enbrel starts working for me, my doctor will leave me on enbrel and plaquenil at the same time.  I read somewhere, not sure where now, that enbrel doesn't work as well for lupus arthritis.  Plaquenil, on the other hand, does.  Enbrel works better for rheumatoid arthritis.  Given that RA is more destructive than lupus arthritis, they're both inflammatory arthritides.  Not sure why enbrel would work for one, but not the other. 

I know that orencia was just approved for RA, and my rheumatologist told me there's another one that was approved at the same time.  Both orencia and this other drug are IV transfusion like remicade, though.  He wanted me to exhaust the injectables first (humira, enbrel, and kinaret).  He said we would try kinaret next, but the drawback is that it is a daily injection, as opposed to weekly.  I'll think positive, though, and maybe plaquenil will work just fine by itself.

I still hurt today, but I'm in better spirits!

Elcamino


CaMama
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Date Joined Mar 2005
Total Posts : 1884
   Posted 4/8/2006 7:34 AM (GMT -7)   

Keep up those spirits! It helps!

Yes, I'm still on plaquenil. I started last April, I believe.

I have the 50mg, 1 time a week shots for ENbrel sitting in my fridge waiting to be started. Partially, I'm nervous to start because I had a serious problem with my health after being on Remicade. Partially I'm just waiting for my health to (G-d willing) stabalize, it seems I can't go 2 months w/o getting some form of sinus, lung, etc. infection.

Kids calling...gotta go.

**


 


dbab
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Date Joined Jan 2004
Total Posts : 4151
   Posted 4/8/2006 4:08 PM (GMT -7)   
I'm really happy I saw this thread. I'm currently debating whether to go on Plaquenil (recently dx'd with Sjogren's) and I'm not sure if I should. I'm currently on #5 anti-inflammatory try and not getting much relief from the pain in my back. Wondering if Plaquenil will help better. Doc hasn't mentioned it yet but I really don't want to have to go through the 55 or so different anti-inflammatory meds before I find the right one if that will happen anyway, not to mention its killing my pocket book. I'm glad to see that you are having relief, I think that I will bring it up on my next rheumy appt and see what he thinks.
Hugs, Des
Co-Moderator ~ IBS Forum
 
~My reality check bounced
 
 
Please help Healing Well continue to help others by donating  http://www.healingwell.com/donate
 
IBS 1989, Diverticulosis 2004, UC 2005, Sjogren's 2006


CaMama
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Date Joined Mar 2005
Total Posts : 1884
   Posted 4/8/2006 4:33 PM (GMT -7)   

Well, I will contest that NSAIDs did NOTHING for me. Plaquenil is only one of 3 meds that I actually could witness the difference - and they were DMARDs and a biological. Everyone reacts differntly, as you know, to meds - but, I hope you find it as helpful as I have.

I will say, because I now have issues with the muscles and tissues as well as the joints, I take Motrin and it helps with that - and that can be taken as-needed rather than the Rx anti-inflammatories that need to be taken daily in order to be in your system and work.

Good luck.

***


 


Nursesrool
New Member


Date Joined May 2007
Total Posts : 1
   Posted 5/20/2007 4:18 PM (GMT -7)   
Hi everyone. I'm new to this site but not new to RA unfortunately. Besides RA I also have been diagnosed with secondary Sjorgrens, fibromyalgia and a severe vitamin D deficiency. I just started Plaquenil this past week with a little stomach upset but I'm getting through it. I'm hoping there will be a big improvement with my pain and stiffness. I take Flexeril low dose at night for my fibromalgia and 50,000 IU of Vitamin D weekly for my vitamin D deficiency. I also am on Mobic, Aciphex and Micardis for high blood pressure and have been on these for a couple of years. I am so happy to have found this site. It helps to have others to correspond with that have had similar problems. My question is do any of you remember how long it was before you felt some relief with Plauenil? Also, last week when I saw my rheumatologist again for the report of my lab work he discussed with me the finding of my extremely low vitamin D level and the effect it could be having on pain in my joints and muscles. I am wondering if any of you that have RA have an associated vitamin D deficieincy? Thanks for any help you can give me. Take care.

momto3
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Date Joined Nov 2006
Total Posts : 1331
   Posted 5/20/2007 5:12 PM (GMT -7)   
Hello,

I have been off and on plaq for about 6 months and I usually see improvement in about a month. It does help the fatigue! and joint pain as well. However I did go in for my eye exam and it showed some degeneration, so please make sure to get in and have a baseline as soon as possible because you are on the plaquenil. Right now the plaq is no longer enough and I have since started on methotrexate. I have never been tested for a vitamin D deficiency, that is very interesting.

I too have the dry eyes/mouth but have never been diagnosed.

CaMama
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Date Joined Mar 2005
Total Posts : 1884
   Posted 5/20/2007 6:06 PM (GMT -7)   

WELCOME!

I'd say the same, about 4-6 weeks before I was sure I saw an improvement. It was about 6 months before I realized how much better I was doing and decided to test the med and go off it for a week. I was in pain within 4-5 days. Once I went back on it, it did kick right back in within a week or so.  The stomach upset was gone within 2 weeks.

I believe I've been tested for deficiencies in vitamins and they were not found. I could be mistaken, though.

Good luck. I'm glad you found us. This is a great group here.
****
 


curley
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Date Joined Mar 2005
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   Posted 5/20/2007 8:59 PM (GMT -7)   
I was just taken off of this because we were not seeing the results like we had hoped for.I was having more side effects from it and was not helping.the only thing that it did was cause my eye's to get worse.I hope that you do well with med.Please let us know how you do on it.
Curley
.........
 


elcamino
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Date Joined Sep 2005
Total Posts : 1744
   Posted 5/21/2007 5:54 AM (GMT -7)   

Well, I've been on plaquenil for almost a year now.  My bloodwork appears to be pretty normal now; however, I doubt whether plaquenil had anything to do with it.  I was on enbrel, and added mtx, as well.  Perhaps it was a combination of all three?  Now I'm off the enbrel, and just on mtx and plaquenil.  I miss the enbrel terribly (my joints are definitely hurting), but I'm grateful to still have the mtx and plaquenil.  Who knows?  Maybe the plaquenil is doing more than I think....

 

Elcamino


Current dx: Rheumatoid Arthritis
Suspected dx: UCTD/Early Lupus
Current Meds: Enbrel, Plaquenil, Aciphex, Ultracet, Zyrtec, Allavert-D, Zantac, Tylenol PM
Past Meds: Relafen, Vioxx, Mobic, Voltaren, Sulfasalazine, Entocort, Prednisone, Humira, Reglan


CaMama
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Date Joined Mar 2005
Total Posts : 1884
   Posted 6/1/2007 8:43 AM (GMT -7)   
Well, I think I mentioned that I wasn't sure how much Plaquenil was actually helping (thinking I might just be having a 'good' moment at the time) and tested it twice (6 month apart) by going off it for about a week. Let's just say, never again will I doubt my faith in the drug and what it does for me.
***
 


breezybrenda
New Member


Date Joined Nov 2006
Total Posts : 5
   Posted 6/2/2007 9:17 AM (GMT -7)   
I have been taking placquenil ( the generic equivalent now) for about 15 years. It really helped me for years and I didn't have to take any other medication. It took about 2 weeks to a month to start helping me. I have had no side effects from this drug except when I first started taking this drug, I was on a higher dose and had some anxiety (laughing attacks would you believe.) When I cut to one pill a day, I was fine and the medicine worked well. I did have some decline over the years but I stilled functioned very well until I went through menopause. The placquenil wasn't strong enough and the doctor started me on Humira. The humira worked great in the beginning. It seemed as if the placquenil wasn't working anymore and the doctor took me off the placquenil after the Humira started working. I was fine for about 3 months and then I started having the worst flares of my life. The doctor was going to start me on 2 additional drugs, but I asked him how long it took for placquenil to leave the body. He said about 3 months. Instead of the other stronger drugs, I started taking the placquenil again (along with the Humira) and I got better in a couple of weeks. Seems that the placquenil was still working.

Don't be afraid to go on placquenil. The side effects for most people are the least of all the DMARDs. I'm so glad that it worked so well for me so I avoided having to go on other drugs for over 13 years.

NanMac
Regular Member


Date Joined Mar 2007
Total Posts : 71
   Posted 6/2/2007 10:31 AM (GMT -7)   

Breezy,

Your words are very reassurring. I am to start Plaquenil soon. I have read that that the side effects weren't as bad the other DMARD's. I am waiting 2 weeks until I am out of school for the summer then I will give it a try. Until then I am taking Pred to get by. Do you have RA? I have all of the symptoms but I don't have the RA marker. Does Plaquenil reduced the SED rate and CRP levels in your blood? Do you need to continue taking Prednisone. I really would like to quit taking it.

Thanks!

NanMac


hunnybunny
Regular Member


Date Joined Jun 2007
Total Posts : 21
   Posted 6/4/2007 3:55 PM (GMT -7)   
I have been taking placqneil for about 2 1/2 years.  I do have elevated liver (ALT AST), but not much.  I do have very dry eyes, but they have me on a drop that helps.  I do get my blood work done every 8 wks and my eyes checked every six months.  I have MCTD.  Before I was told what I had the pain was unbearable.  I do still get the pain and swelling in my hands, but about 80% less. 

MysteryB
New Member


Date Joined Jun 2007
Total Posts : 10
   Posted 6/7/2007 8:05 PM (GMT -7)   
This issue varies so much person to person I don't know how helpful I'm going to be. Getting the right "cocktail" of meds can take years. After three years of being in pain, sick, and exhausted, I'm actually in remission - just hang in there kay? (hugs)

Mira
New Member


Date Joined Dec 2007
Total Posts : 4
   Posted 12/13/2007 3:13 AM (GMT -7)   
If your planning to use Humira and your insurance doesnt cover it, I can get you Humira for a very low price. Email me!

ericsmom
Veteran Member


Date Joined Jan 2007
Total Posts : 1042
   Posted 12/13/2007 6:31 AM (GMT -7)   
Hello Peeps

Just wanted to add that when I first started getting ill with R/A I was like a crippled person, cud barely walk, my knuckles on my hands were all raised, etc etc
My pain was so severe, that before it was dx, I thought I had bone cancer, my whole body hurt so bad.
Anyway...I was put on Plaquinal immediately upon dx, and I'm not sure how long it took to start working, I think it was maybe 2 months? but the improvement was gradual so perhaps it started working before that. I had the slight tummy issues, nothing that I cudnt handle..not like MTX.
I would never want to be off of plaquenal now, I rarely have the debilitating pain that I had before taking it. I have been on plaquenil for 11 years now. I hope you are doing well on it by now Elcamino, (I only just saw how old this post was lol) tongue

Hugs
Diane
Fibromyagia, R/A, Diabetes, Atrial Fib, depression

Prednisone(not for much longer I hope), methotrexate, folic acid, metformin, diamicron, bisoprolol, plaquinal, fenofibrate, pantoloc, wellbutrin, propafenone, ibprofen, warfarin


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