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Old 08-27-2009, 06:10 PM   #1
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Gypsylady HB User
newbie just saying hi

Hi everyone, I'm Gypsylady from Brandon, MB. Canada.....I was DX with SLE 5
years ago along with Sjogrens Syndrom now included in the DX....I am very frustrated and very alone up here with no support group for lupus....just started taking Plaquenil today....after trying so many other drugs that did nothing at all to help I am only going to give this drug 3 months to show some kind of improvement then will try natural intervention....
any chance that any of yous are following that path & how is your lupus now?

 
Old 08-27-2009, 06:40 PM   #2
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Re: newbie just saying hi

I've been on plaquenil for almost 9 months now. It has helped me tremendously, along with a low dose of meloxicam to help with the inflammation. It took about two months to start working, but once it did, it's been a blessing.

Good luck and I hope the medication helps you as much as it has me.

Tricia

 
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Old 08-27-2009, 07:58 PM   #3
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watoozie HB User
Re: newbie just saying hi

I was diagnosed with Lupus and Sjogrens 4 1/2 years ago. I have been on Plaquenil as long and it took 4 months to reap the benefits from it. I sure wouldn't want to be without it. It has helped me so much, I just wouldn't want to feel like I did before. I have had a couple flares, but not near as bad. I think you should give the Plaquenil at least 6 months or more, as sometimes it takes awhile to get into the system. You may be pleasantly surprised!! Hope you feel better soon.

 
Old 08-28-2009, 08:54 AM   #4
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Re: newbie just saying hi

Gypsylady, hi & welcome. I've taken Plaquenil for 9+ years. It kicked in fairly quickly, and it's kept me at a much better level. I still have pain & fatigue, but less than before; and considering what it's quelled, that makes me LUCKY.

Did you have specific tests (like Dry Schirmer's or a lip biopsy) to prove you have Sjogren's in addition to lupus? I'm only curious because I'm an "anti-Ro" lupus patient, but I don't have Sjogren-like symptoms, only lupus symptoms. I'm very photosensitive & must take big sun precautions (alas).

I hope Plaquenil works as well (or better!) for you as it has for me. Let us know how you're doing, when you have the time. I'm glad you found us here. Sincerely, Vee

 
Old 08-29-2009, 08:44 AM   #5
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Re: newbie just saying hi

Hi VeeJ,
TY for your reply....I am not sure why they said I tested positive for Sjogrens without them doing the tests that you mentioned but they did confirm it with blood tests....I am still very confused by this whole lupus DX & the newest DX of Sjogrens....my ANA test came out very high they said it was >1280 (Abnormal)....WBC is 3.4giga/L(Abnormal)....nuclear AB is abnormal speckled pattern 1:2560....many of the other blood tests came back abnormal too....They dont seem to have any real answers except a list of "Here....try this drug....if it doesnt work then we'll try another drug" I feel like a guinea pig....with no end in sight which is why I am leary of this Plaqenil....but as I said I will give it a try....you have taken it for soooo long is there any chance you could go off it?? I am scared to be on it for a long time because of the possible eye damage.

 
Old 08-29-2009, 08:52 AM   #6
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Re: newbie just saying hi

Hi watoozie,
TY for the reply, I hope that this Plaquenil works too....I have tried Pred....Viox....Celbrex....Imuran....wit h absolutely no results only made me feel worse....maybe I am too impatient & expect a miracle intervention for an overnight relief from these symptoms....6 months is a long time to wait for some kind of relief....hopefully it wont take too long!!

 
Old 08-29-2009, 08:56 AM   #7
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Re: newbie just saying hi

Hi Triciah614,
Ty for your reply, glad to hear that this Plaquenil helped you so quickly....does give me some hope that it will do the same for me....wont hold my breath though....I have suffered with this ongoing fatigue & muscle weakness for so long....headaches....swelling....joint pain....the list is almost endless....the list of drugs I've been prescribed has been just as endless....such a frustrating journey that I just wish for one day of no symptoms so I can feel what that feels like.....

 
Old 08-29-2009, 11:46 AM   #8
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Re: newbie just saying hi

Gypsylady, there are some excellent lupus hardcovers in many libraries & bookstores that cover lupus, conditions like Sjogren's seen in conjuction with lupus (or all by themselves), and conditions that can be hard to distinguish from lupus. One I like especially is by Dr. Daniel Wallace; and two other excellent authors are Dr. Robert Lahita and Dr. Graham Hughes.

I believe ANA is only a threshold test & may be positive in various conditions, incl. lupus & Sjogren's. ANA is often quite high in Sjogren's, I've read.

I mentioned the specific anti-Ro autoantibody because it's seen in both lupus *and* Sjogren's. Dr. Wallace lists at least 16 autoantibodies, complement levels, etc. possible in lupus; and he conveys a lot of info about the tests used to sort out one Dx from another. He also discussed Sjogren's at length.

About the potential for Plaquenil eye toxicity: Dr. Wallace covers this thoroughly, too. It's apparently very rare and *almost* always reversible if the drug is discontinued, *if* the drug has been administered in proper relation to the patient's weight. Before I started the med, what Dr. Wallace wrote quelled my fears, and I've never looked back. I do have a field vision (eye) exam every 6 months, at my rheumie's request (no problems in all this years). So I really hope you can find this book & read various sections, esp. the one on Plaquenil & eyes, as I think you'd gain valuable insight (no pun intended ).

Obviously I'm just a patient, so please read above in that light! Hope something above proves helpful to you. Bye for now. All my best, Vee

 
Old 09-06-2009, 05:47 AM   #9
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Re: newbie just saying hi

TY again VeeJ, I will look into the books that you mentioned....I only have some pamphlets from the Doc's office right now but have been online researching until I go crosseyed.....LOL.....but have gotten some good info online for all my efforts....although some of the sites are now very in depth it does seem that there is a fair amount of info.....just wishing that it was all on one sight instead of having to surf so much....About the Anti-Ro test....not sure if they did this one or not....I see the Rheumy on this tuesday so will ask....I had another round of labwork done aug 25 so it should all be in....will ask for a printout then I can research what the numbers all mean & compare to labs done 2 years ago....again TY for your help & support....take care....CIAO for now

 
Old 09-06-2009, 06:08 PM   #10
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heidiclouser HB User
Re: newbie just saying hi

hi gypsy....glad you found us. I've been on plaquenil for 15 years....not a miracle drug for me but i'm sure it contributes to my overall "wellness". i have undifferentiated connective tissue disease with symptoms of lupus, sjorgren's, scleraderma...i also have lymphoma as a result of immunosuppresent meds. 3 weeks ago i had the tendons in my left wrist repaired due to scarring from the inflammation. get your eyes checked regularly and take the plaquenil. it's low risk IMHO

 
Old 09-07-2009, 08:19 AM   #11
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Re: newbie just saying hi

TY heidiclouser....for the info & the welcome on here....twas by chance that I stumbled onto this site....glad to hear that the plaquenil has helped you out....but I question the longterm neccessity of taking it....are you ever off this drug? I will get my eye exams done on a yearly basis but for now I have just started the plaquenil....today is one week on it....how long did you take the immunosuppressants? I took Imuran for 6 months....it did absolutely zero to help me....what is IMHO???

 
Old 09-07-2009, 05:22 PM   #12
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Re: newbie just saying hi

gypsy....IMHO=in my humble opinion.

I took cellcept for about 5 years....it made me feel almost normal. after i stopped the cellcept due to the lymphoma i tried imuran....made me violently ill. now i'm trying methotrexate but that doesn't seem to be doing much either. i think the plaquenil will be a forever med. it doesn't seem to have any long term side effects and the vision side effects are rare.

 
Old 09-07-2009, 05:23 PM   #13
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Re: newbie just saying hi

gypsy....pick up the wallace book....it's everything you ever wanted to know about lupus. do you have a good doctor?

 
Old 09-08-2009, 06:25 AM   #14
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Smile Re: newbie just saying hi

Hi Heidiclouser,
TY for that info....it is likely that I will pick up that book this week...so I can read it this weekend....as for a good Doctor well....my rhuematologist is very good except that he thinks he is a god or something....and that his word is gospel....so if I question him about something he usually dismisses my question with a "well why do you come to see me if you dont want to listen to what I say or take my advice or take the pills that I prescribe?" I wonder about my GP also because she said that if I dont follow her orders (like take the pills perscribed) then I should find another doc. I am very frustrated with them as of late because I HAVE tried the meds that they want but if time goes by & I get feeling worse on them or they do nothing then I quit taking them.....somewhere on my charts it does read that "this patient is unwilling & unco-operative" LOL but ya know....I do give the meds some time to "do their thing" but get very bummed out when they just dont work because I am tired of the pain, exhausted from the fatigue, sick of the constant IBS/GI issues and the kidney troubles....I think that alot of the drugs that they write RX for actually cause more issues for me....which is why I am looking for an alternative treatment....I usually say NO to drugs including prescriptions because many of them are more toxic and will cause more long term problems with liver & kidney toxicities than an herb or root or tree droppings will

 
Old 09-08-2009, 06:33 AM   #15
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Gypsylady HB User
Re: newbie just saying hi

Quote:
Originally Posted by heidiclouser View Post
gypsy....IMHO=in my humble opinion.

I took cellcept for about 5 years....it made me feel almost normal. after i stopped the cellcept due to the lymphoma i tried imuran....made me violently ill. now i'm trying methotrexate but that doesn't seem to be doing much either. i think the plaquenil will be a forever med. it doesn't seem to have any long term side effects and the vision side effects are rare.
IMHO=in my humble opinion KK got it LOL
the cellcept is what? I too was on Imuran....an immunosuppressant that made me violently ill also....methotrexate well.....just the name of that one scares the beejeepers outta me.....only been on the plaquenil for a week so I guess that time will tell....a friend of mine has been on the methotrexate & folic acid for almost 2 years now & is being weaned off....he had something that they think was triggered by a shingles outbreak (which is triggered by the chicken pox virus) he is doing better now but at age 64 it sure took its toll on him....anyhoos....that methotrexate doesnt help everyone who takes it.....IMHO if they dont know what causes SLE or many other illnesses then why do they continue to prescribe these drugs that MIGHT work?

 
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