Posted 6/11/2007 10:04 AM (GMT -7)
dbab said...
You may be right Jen. I didn't take that into consideration. I have been on anti-anxiety medication for a couple of years now so it may be taming a lot of what I got through anyway. I am tapering and dreading on one hand and excited on the other to go to a PRN basis.

If you don't feel that your Lupus is mild, than that is all that matters. Just because you don't have more than 5 criteria, doesn't mean that one of the criteria is not disabling to you. I would definitely see what else your doctor can do for you, I just hope that you can find one med that doesn't give you too many problems.

Take Care

P.S. I miss wine :-)

Is wine a med?...hehe! It should be :-)
 
Over 10 yrs ago I was on xanax daily for 3 months. I stopped it w/out weening myself off. No one told me not to and I went through the worst withdrawl. But once I weened myself off properly, I was SUPER FINE!
Don't worry about getting off of it. What happens on any anti-anxiety meds is it redraws the map in our brain to think a different way. Once u get off, that map still remains.
Physically, you will notice some difference, but that goes away.
I take a half oa .25 now as needed. I once went 2 yrs w/out taking anything and I have a busy and stressful life. It's all a matter of practice.
But on Plaq.......oh brother my anxiety is rampant.....My next life, I come back as one of my cats who have it made :-)
Good luck with that.....you'll do great :-)
 
Jen
Posted 6/11/2007 10:46 AM (GMT -7)
Hi Jen--
Sorry the plaq hasn't worked out. It has been a Godsend to me. I know when I have allergic reactions to meds or intolerance to them, anxiety and depression and stomach upset are awful. I'm sorry it didn't work. For some reason, I'm able to tolerate this medicine but not most others, maybe because it is broken down more by the kidneys. I used to take xanax but switched to Klonopin because it works better. Its just as addicting, it's a benzodiazapine, but I don't get the depression and anxiety hangover like I do with xanax, works for my restless leg syndrome, and is a mild antiseizure med. Actually, it perks me up more the next day more than anything. I hope they can find a treatment that works for you and is not horribly strong, like killing flies with a sledge hammer.
Love, Marji
--Doctors are men who prescribe medicines of which they know little, to cure diseases of which they know less in human beings of whom they know nothing.--Voltaire (1694-1778)
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Klonopin, Soma, Ultram, Vicodin, Restasis, Albuterol,steroid injections, Protopic & Triamcinolone Acetonide ointments

Posted 6/12/2007 6:59 PM (GMT -7)
you need to talk to your doctors...there could be some underlying issues. They need to know....There are other issues with this lupus...it may not be from the plaq. For me, I had some mental issues just because I couldn't walk anymore or do anything...I went into a depassing state, becuse I felt I had lost so much in my life. My legs hurt and I was so tried, I couldn't get out of bed. Please take care....Frank
PLAQUENIL, FLEXERIL, CELEBREX - UCTD, BENICAR - HIGH BP, SINGULAIR - ALLERGIES, REQUIP RESTLESS LEG SYNDROME, LEVITRA, AND METROGEL FOR ROSACEA 
Enjoy what you can today and leave the rest for another day.
 
Frank
 

Posted 6/13/2007 2:52 AM (GMT -7)
There is also the fact lupus can affect the central nervous system. It can actually cause mental illness or at least symptoms of such. You may need to be on something for anxiety because the lupus is attacking your brain or your brain chemistry may be off because of the lupus. IT really messes with you big time. It has caused me no end of problems. Actually funny thing- I notice an aweful lot of us have anxiety issues. I wonder if that is caused directly by the lupus. Dx:fibromyalgia 2002, systematic lupus 2005, psoriasis 2006, rheumetoid arthritis 2006, early sjogrens 2006, low positive anti-phospholipid antibodies/lupus anti-coglutant 2001-2004 and 2007, osteoarthritis 2005, Migraine 1994, Compression fracture 2001, Disk problems 2006, Multiple allergies 2006, Post traumatic stress disorder (PTSD) 2007, Bipolar type II 2007, possible siezures 2005, probable lupus CNS involvement 2007 Tx: plaquenil, Imuran, Enbrel, Celebrex, Tramadol, Norco , Singulair, Skelaxin, Evoxac, Clonazepam, Zonisamide, Baby Asprin, Relpax, Copper IUD
Posted 6/17/2007 7:07 AM (GMT -7)
redrose77 said...
There is also the fact lupus can affect the central nervous system. It can actually cause mental illness or at least symptoms of such. You may need to be on something for anxiety because the lupus is attacking your brain or your brain chemistry may be off because of the lupus. IT really messes with you big time. It has caused me no end of problems. Actually funny thing- I notice an aweful lot of us have anxiety issues. I wonder if that is caused directly by the lupus.

Hi.....My Rheum believes I've had Lupus for over 12 yrs (undiagnosed) and yes I have always suffered anxiety and panic. But since taking this plaq, I've become ultra sensitive to anxiety. I feel like I'm "out" of my body.
I am 101% sure it's the plaq that is causing this since I was fine (mentally) b4 starting it.

On Friday I had to stay home from work b/c I have such brain fog and weakness. A flare? Not sure, but I've been feeling like hell since Friday.
I did not take the plaq last night. I may not take it again, but I am worried about withdrawal. Are there any withdrawal from plaq that anyone is aware of?
I'm at my wits end! I feel like my life is out of control since taking this drug.
The ringing in my ears (started 3 days after the plaq) is enough to drive anyone nuts.
I also now have horrible insomnia. I cannot miss anymore work due to lack of sleep. I need to sleep to heal and getting 3hrs of sleep a night and working 10 hr days is KILLING me!
 
Ugh.....help!
Posted 6/17/2007 11:11 AM (GMT -7)
Your pharmacist or doc would be the best person to tell you if there would be any withdrawls. I don't recall reading anything about withdrawls when I read about plaquenil. From what I've read from some of the people here who have quit it, their lupus symptoms flared, but they didn't mention withdrawls like from some other meds that can be dangerous to stop cold turkey. Since you probably can't reach your doc today, you could call a pharmacist just to make sure. It does sound like plaq did not agree with you and hopefully your doc can figure out an alternative and effective med for you. Let us know what you find out. Take care Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985 Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Amitriptyline 25mg; Neurontin 200mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Restasis eye drops   Clickable:   LUPUS INFORMATION & LUPUS RESOURCES . Please allow HealingWell to continue helping others by donating: https://www.healingwell.com/donate/   Co-Moderator: Lupus and CFS Forums
Posted 6/17/2007 1:01 PM (GMT -7)
I'm with hippi -- I haven't heard of withdrawal symptoms from plaquenil, BUT lots of people have reported that when they come off of it they realize it was doing more to help the lupus symptoms than they realized. So it is quite possible that what you are experiencing are lupus symptoms rather than withdrawal symptoms. Cheers, Lynnwood, Co-Moderator: Lupus Forum SLE(’00), Sjogren's Syndrome, Raynaud's Syndrome, SAD, Depression, Herpes Simplex 1 Piroxicam, Plaquenil, Cellcept, Prednisone, Xanax, Trazodone, Fosamax, Wellbrutrin SR, Valtrex OTC Daily: Multivitamin, Calcium, B-12, C, D; As Needed: Ibuprofen, Tylenol Sinus Allergies: All Sulfa-based medications; Levofloxacin,   Levaquin DIAGNOSING LUPUS (4 of 11), LUPUS INFORMATION , LUPUS RESOURCES , Donate to HealingWell , Drug Interactions
Posted 6/17/2007 1:02 PM (GMT -7)
Hey Hippi...thanks for the input.
I think my alternative will be natural. I am not one to take meds so when I do, I get a reaction.
If stopping the meds makes me "flare", I can handle a flare anyday over how plaq is making me feel.
I'm thinking that many of you handle the plaq well b/c you were prob terribly ill before and anything was better than that. Though I get sick a lot, the flares were more managble for me than some of you (I believe).
I will call my doc tomorrow for sure to advise him I am not taking plaq any longer and will refuse any alternative.

I think one more night of insomnia and another day of insane panic will put me in the loonie bin. I need to sleep.

ugh......thanks

HUG
Posted 6/17/2007 4:54 PM (GMT -7)
Well, I will never came off of plaq again.... I did that in went almost a year then boom. I went from 50 to 0 in no time. I couldn't move, my legs hurt so bad. I WAS OUT OF WORK FOR A MONTH.
PLAQUENIL, FLEXERIL, CELEBREX - UCTD, BENICAR - HIGH BP, SINGULAIR - ALLERGIES, REQUIP RESTLESS LEG SYNDROME, LEVITRA, AND METROGEL FOR ROSACEA 
Enjoy what you can today and leave the rest for another day.
 
Frank
 

Posted 6/17/2007 6:25 PM (GMT -7)
I did not have many symptoms before the plaquenil, I was mostly just exhausted all the time. So I don't think it is saved for people who are awfully ill. I've never had reason to try to get off of it, so I have no idea what might happen. Everyone has to measure the trade offs for themselves -- it seems we all come to different conclusions for our individual manifestations of lupus. Lynnwood, Co-Moderator: Lupus Forum SLE(’00), Sjogren's Syndrome, Raynaud's Syndrome, SAD, Depression, Herpes Simplex 1 Piroxicam, Plaquenil, Cellcept, Prednisone, Xanax, Trazodone, Fosamax, Wellbrutrin SR, Valtrex OTC Daily: Multivitamin, Calcium, B-12, C, D; As Needed: Ibuprofen, Tylenol Sinus Allergies: All Sulfa-based medications; Levofloxacin,   Levaquin DIAGNOSING LUPUS (4 of 11), LUPUS INFORMATION , LUPUS RESOURCES , Donate to HealingWell , Drug Interactions
Posted 6/18/2007 4:18 AM (GMT -7)
Lynnwood said...
I'm with hippi --

I haven't heard of withdrawal symptoms from plaquenil, BUT lots of people have reported that when they come off of it they realize it was doing more to help the lupus symptoms than they realized.

So it is quite possible that what you are experiencing are lupus symptoms rather than withdrawal symptoms.

Cheers,

Hi...this weekend's aches and pains for sure were my lupus. I've been sick with this for 12 yrs and can identify the difference from the meds and the lupus.
Since taking plaq, I have slept less than 4 hrs a night, have intense anxiety, horrible period cramps, sore stomach all the time, severe heart palpitations (which I never had in my life) etc.
The worst is the insomnia which I have never had before. So the obvious conclusion is the plaq.
I've been on it 2 months now and cannot imagine another 1-4 months on it to see if it MAY work for me.
Many of you take other meds to offset insomnia and anxiety. Maybe this is why many of you can handle the plaq.
In my 40 yrs, I think I've been on meds twice for an infection. My body just cannot adjust to meds.  
Yesterday and went back to many old posts and saw a few other ppl that got off the plaq for the same complaints as I have.
I truly felt better before the plaq and believe me, I've been suffereing from "lupus" symptoms for a long while. But at least I was able to sleep which made handling it so much better.
I was still able to get to the gym 3 days a week and swim. Now I try to walk and I my heart races out of control.
I'm missing a ton of work also.
 
Thanks all for your input. It's awesome that this drug worked for you. I wish my outcome would have been as successful.
 
Jen 
 
 
Posted 6/18/2007 4:24 AM (GMT -7)
Lynnwood said...
I did not have many symptoms before the plaquenil, I was mostly just exhausted all the time. So I don't think it is saved for people who are awfully ill. I've never had reason to try to get off of it, so I have no idea what might happen.

Everyone has to measure the trade offs for themselves -- it seems we all come to different conclusions for our individual manifestations of lupus.

I totally agree, we all have to measure the trade-offs.
You're only symptoms of lupus was exhuastion?
You have many other ailments and take many other meds also?
Could it be it was diffictult to determine how plaq was making you feel since you are on so many other meds?
Or was plaq the first med you took than others followed?
Posted 6/18/2007 5:02 AM (GMT -7)
Me not sleeping was caused from the lupus not the meds. My doctor put me on flexial which help me to sleep really well. Now, I am able to sleep w/o it. If, you can't get the sleep you will feel exhausted..you have to keep you doctors updated about your needs.
PLAQUENIL, FLEXERIL, CELEBREX - UCTD, BENICAR - HIGH BP, SINGULAIR - ALLERGIES, REQUIP RESTLESS LEG SYNDROME, LEVITRA, AND METROGEL FOR ROSACEA 
Enjoy what you can today and leave the rest for another day.
 
Frank
 

Posted 6/18/2007 5:16 AM (GMT -7)
phndoc said...
Me not sleeping was caused from the lupus not the meds. My doctor put me on flexial which help me to sleep really well. Now, I am able to sleep w/o it. If, you can't get the sleep you will feel exhausted..you have to keep you doctors updated about your needs.

I was fortunate enough to never have severe insomnia. I mean I had a few nights a month where i could not sleep a full 8 hrs, but now I sleep 3 hrs a night. My body is like a live-wire!
I will call my doc today to inform him I've stopped it. I will not ask for meds to help me sleep since more meds (for me) is not the answer.
Posted 6/18/2007 6:44 AM (GMT -7)
peacesoul, I think you bring up a good point that everyone responds to meds differently. Some meds that most people can tollerate like SSRI antidepressants, I have a terrible reaction to and I can't take them. Some meds I just seem to be super senstive to and others I can take just fine. You know your body best. I'm glad you're calling your doc to let him know - it's important that he knows how the plaq affected you. Take care and I hope you are able to get back to the gym soon. Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985 Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Amitriptyline 25mg; Neurontin 200mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Restasis eye drops   Clickable:   LUPUS INFORMATION & LUPUS RESOURCES . Please allow HealingWell to continue helping others by donating: https://www.healingwell.com/donate/   Co-Moderator: Lupus and CFS Forums
Posted 6/18/2007 7:34 AM (GMT -7)
peacesoul said... I totally agree, we all have to measure the trade-offs. You're only symptoms of lupus was exhuastion? You have many other ailments and take many other meds also? Could it be it was diffictult to determine how plaq was making you feel since you are on so many other meds? Or was plaq the first med you took than others followed? Yes, my only huge bothersome original symptom was exhaustion. I'd sleep 18 hr days and still be tired. I had some other symptoms (feet going numb while running, unexplained muscle/joint pain), but that was 7 years ago and I don't remember them as being that troublesome. I was totally med-free for years before my initial lupus diagnosis. I took only Plaquenil and Feldene for the first period -- it was at lest several months, if not over a year. I didn't have any side effects at all. Lupus is quite often a progressive illness, it certainly has been in my case. Plaquenil and Feldene were my first meds, as that didn't quite control my symptoms, and as other symptoms came along, Prednisone was added. The Prednisone necessitated the Xanax and Trazodone so that I could go to sleep and get quality sleep. Lupus reactivated a previous tendency toward depression, thus the Wellbutrin. Nystatin is because I started getting thrush and yeast infections, those are partly attributed to lupus and partly to the immuno-suppressant qualities of Prednisone. Valtrex is because the lupus fevers reactivated my previous oral herpes. Cellcept is because I developed some very significant cognitive dysfunction. I simply could not think anymore. We tried Imuran for quite a while, but it didn't seem to do much, so we switched to Cellcept in October. It has given my back my brain, which is truly miraculous. I hope that answers your questions. Cheers, Lynnwood, Co-Moderator: Lupus Forum SLE(’00), Sjogren's Syndrome, Raynaud's Syndrome, SAD, Depression, Herpes Simplex 1 Piroxicam, Plaquenil, Cellcept, Prednisone, Xanax, Trazodone, Fosamax, Wellbrutrin SR, Valtrex OTC Daily: Multivitamin, Calcium, B-12, C, D; As Needed: Ibuprofen, Tylenol Sinus Allergies: All Sulfa-based medications; Levofloxacin,   Levaquin DIAGNOSING LUPUS (4 of 11), LUPUS INFORMATION , LUPUS RESOURCES , Donate to HealingWell , Drug Interactions Post Edited (Lynnwood) : 6/18/2007 1:21:36 PM (GMT-6)
Posted 6/18/2007 12:14 PM (GMT -7)
Lynn, one thing just led to another for you it seems. I wonder how much more my lupus will change or progress?!
Thanks for the explaination.

Hippi, I will try my best to get my butt back to the gym. I was just saying to my boyfriend today, I wonder how worse off I would have been or how progressed my lupus would have been had I not been working out the whole time.

I'll let u know what my doc says when he calls me back
Posted 6/18/2007 12:29 PM (GMT -7)
PS. I was working out until January of this year, ie for the first 6.5 years of having lupus. Initially I was a marathon runner, in the best shape of my life. I had to slow down as the lupus progressed and the fatigue was more easily triggered, but didn't stop doing at least 30 min aerobic & 30 minutes weights. Once the Cellcept improved my brain, I tried to go back to work (Feb), but that made me too tired to work out. I tried work for 8 weeks, but couldn't work more than 25 hrs/wk without exhaustion returning. Since then I just haven't made it back to the gym, and am currently having muscle weakness and shortness of breathe. I don't know if that's a drug reaction, a lupus symptom, or an out-of-shape issue. I'll be finding out soon!! (I hope.) Anyway, I have no idea how much different my lupus might have been without working out as long as I did. I suspect it would have been roughly the same, but have no solid evidence regarding that. I'm pretty sure the typical prednisone weight gain would have been a lot worse without activity, and I'm sure my mood would have been worse! I hope we can both get back to it soon! Cheers, Lynnwood, Co-Moderator: Lupus Forum SLE(’00), Sjogren's Syndrome, Raynaud's Syndrome, SAD, Depression, Herpes Simplex 1 Piroxicam, Plaquenil, Cellcept, Prednisone, Xanax, Trazodone, Fosamax, Wellbrutrin SR, Valtrex OTC Daily: Multivitamin, Calcium, B-12, C, D; As Needed: Ibuprofen, Tylenol Sinus Allergies: All Sulfa-based medications; Levofloxacin,   Levaquin DIAGNOSING LUPUS (4 of 11), LUPUS INFORMATION , LUPUS RESOURCES , Donate to HealingWell , Drug Interactions
Posted 6/19/2007 4:20 AM (GMT -7)
Lynn, that sucks that you had to stop working and working out. That is my fear!
Funny you say you were out of breath b/c once I started the plaq and would go work out, I would get heart palpitations and lose my breath so quickly. I knew it was the plaq b/c I never had that before.

Was your exhuation all day or mostly in the mornings?
Did u notice more flares after working out?
Posted 6/19/2007 8:40 AM (GMT -7)
Exhaustion all day. When working out starting feeling worse (not exactly falres but felt bad after) I cut back what I was doing till I had a level I could tolerate. Maybe you are having stress/nervous reactions to some things? Sometimes anxiety attacks make us feel like we're having heart palpitations when if we take a pulse we find out it's just a feeling. Lupus an cause anxiety by itself; it can also be associated w/prednisone. I haven't heard of it associated w/plaquenil, but ya never know. Lynnwood, Co-Moderator: Lupus Forum SLE(’00), Sjogren's Syndrome, Raynaud's Syndrome, SAD, Depression, Herpes Simplex 1 Piroxicam, Plaquenil, Cellcept, Prednisone, Xanax, Trazodone, Fosamax, Wellbrutrin SR, Valtrex OTC Daily: Multivitamin, Calcium, B-12, C, D; As Needed: Ibuprofen, Tylenol Sinus Allergies: All Sulfa-based medications; Levofloxacin,   Levaquin DIAGNOSING LUPUS (4 of 11), LUPUS INFORMATION , LUPUS RESOURCES , Donate to HealingWell , Drug Interactions

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