Plaquenil (Updated) 1 month, no relief!

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Lord_Walters_Lady_Bug<3
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Date Joined Oct 2008
Total Posts : 257
   Posted 7/11/2009 12:18 PM (GMT -7)   
Hello all. My doctor has finally decided to start the plaquenil since my symptoms aren't getting better with the naprosyn alone. She is keeping me on that as well however. I am wondering what to expect with the plaquenil though...I know it can take a while to work but I was wondering how long? and side effects(I know about the potential eye problems) and anything else anyone has input about would be greatly appreciated :)
I also am having bad burning leg pain especially at night from my knees into my hips and back. I was wondering if any other lupies have this problem and what kind of treatment you are getting for it? My rheumy is sending me to a new neurologist at Johns Hopkins for a full EMG and Nerve Conduction study. I had one back in march on just my legs so i know they hurt! ehh.

Thanks and hope you all are feeling well! *hugs* -Brittanee

Post Edited By Moderator (Lynnwood) : 7/30/2009 1:39:22 PM (GMT-6)


sjkly
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Date Joined Dec 2007
Total Posts : 2113
   Posted 7/11/2009 5:06 PM (GMT -7)   
Well, for me plaquenil completely changed my life. I should say I have an odd form of RA not Lupus-but, for me plaq completely eliminated the daytime fatigue, random fevers and the almost constant feeling of having been recently hit by a bus. I needed additional medication to reduce inflamation.
Plaq is slow-it may take two months for you to notice a difference. It may also be subtle-I have known so many people that thought it wasn't helping until they decided to go off of it and then they couldn't function without it.

Side effects-well, I had more then most. I felt motion sick for two months and almost completely lost my appitite-but sinse I had been on it previously and had to stop taking it because of the same side effects-I knew how well it worked and was willing to put up with those effects. They do go away.
Eating carbohydrates with the plaq helps and I split my dose one pill in the morning one with dinner and that helped as well.

I hope you feel better soon.

jhmom
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Date Joined Oct 2004
Total Posts : 2244
   Posted 7/12/2009 2:48 PM (GMT -7)   
HI Brittanee, the first improvement I noticed was my fatigue got a little better. I really didn't notice anything else until my rheumy wanted me to try to come off it, then I could feel how it was helping my joint pain too.

Plaq can take up to 6 months I've heard but I could tell a difference within a couple of days. Each person if different. I hope it works well for you!
Stacie
Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Lupus, Sjogrens, Raynaud's, Hashimoto's and Celiac Disease
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid, Folgard OS (B12), Vitamin D-50,000 IU, Tramadol (as needed) and magic mouthwash (for mouth sores)


sjkly
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Date Joined Dec 2007
Total Posts : 2113
   Posted 7/12/2009 4:20 PM (GMT -7)   
It looks like you are in the DC/VA/MD area-is your rhuemy fabulous?
If not I can tell you one who is.

Lord_Walters_Lady_Bug<3
Regular Member


Date Joined Oct 2008
Total Posts : 257
   Posted 7/15/2009 9:37 AM (GMT -7)   
Well I have not gotten a diagnosis from my rheumy which I believe I should have due to my criteria but if you are serious id love to know who :) And yes I live on the eastern shore of maryland :)
*Wifey & Mommy*


Lord_Walters_Lady_Bug<3
Regular Member


Date Joined Oct 2008
Total Posts : 257
   Posted 7/15/2009 9:38 AM (GMT -7)   
I started it monday and I take 2 200mg tabs in the morning. The pain meds always made me nauseas too if i didn't eat so i take them together after breakfast. I have had a few headaches and not sure if it was just dizziness yesterday or if it was messing with my blood sugar because I had to have someone else drive the first time because i got dizzy and my palms got sweaty and i was nauseas and the second time i started feeling weak and dizzy and actually checked my sugar and it was 66. I dont have diabetes or anything but have had some low sugars in the past so im not sure if its the meds or not. I do know the plaquenil can make diabetics sugars a little whacky so i emailed my dr about it and well see what she says. I am still not getting any relief from the higher dose of naprosyn but maybe I need to wait it out a little more. Hope you all are well. *Hugs* -Brittanee

As for the burning pain nothing helps me either. The naprosyn isn't really helping the ache much at all as well but im trying to wait it out. Is that considered peripheral neuropathy even if it doesn't show up on the emg/nerve studies on the muscles and nerves? I am still waiting for an appt with a jh neuro as well. I also had a uti months ago which caused spotting and lower back pain but i have the lower back pain at times anyway so never knew it was a uti because i didn't have the burning with urination at all like most people. I emailed my dr about that and asked her if i should get a urinalysis because i have had it for a few days. I know the kidney aspect of lupus can be a silent killer so i am trying to be cautious about that... of course if i did have that it would give me my diagnosis of lupus so its a win/lose situation...ehh...
*Wifey & Mommy*


lucysgd
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Date Joined Jun 2008
Total Posts : 669
   Posted 7/15/2009 11:27 AM (GMT -7)   

You might try splitting the Plaq dosage - half with breakfast and half with dinner to see if that helps a bit.  The Naprosyn can be hard on your stomach, (it certainly was on mine) and I may be mistaken about this, but I don't think it's the kind of thing that takes awhile to begin working.  You should be noticing improvement from it by now - and if it's not working - I'd see if your doctor would try something else. 

As for your spotting and back pain - please don't just chalk that up to random UTI's.  I had a friend do that for a couple of years because her doctor just wasn't concerned.  Mostly she had bleeding and some back pain, but not typical burning, etc.  She eventually had a series of tests that turned up a serious bladder issue.  Had her doctor referred her to a nephrologist/renal specialist for a cystoscopy (simple procedure) she'd have been given an answer right away.  Not trying to scare you or add to your stress - but don't ignore those symptoms if they keep returning and can't be explained by your GP. 

Hang in there - Hope you start feeling better soon.
Lucy
diagnoses:  mono 1972; postviral CFS 1997; fibro 1998; UCTD 2007
meds: Plaquenil 400 mg, occasional low dose xanax for sleep aid, artificial tears w/ ointment at night, Advil/aspirin prn
 
 


sjkly
Veteran Member


Date Joined Dec 2007
Total Posts : 2113
   Posted 7/15/2009 2:15 PM (GMT -7)   
Dr. Emma DiIorio
Arthritis and Rhuematism Associates
Rockville Md

Dr. Di is on the medical advisory board for the Lupus association. And, more importantly she returns phone calls personally the same day I call her.
If the office says she is not taking new patients try again later when someone else is answering the phone that often works.
She is smart and she never gives up until she knows "exactly" what is going on with a person.

momto3
Veteran Member


Date Joined Nov 2006
Total Posts : 1331
   Posted 7/15/2009 6:12 PM (GMT -7)   
Please make sure you get a baseline eye exam before starting on your plaquenil.  I loved Plaquenil and it helped my RA immensley, however two years into it, I had to stop since is was damaging my vision. Because I didn't get a baseline, we have no idea how much damage was really caused by the Plaquenil itself.  I know the odds are slim of anything actually happening but its a good idea just in case.  Be patient and I hope you see wonderful results with it.

Lord_Walters_Lady_Bug<3
Regular Member


Date Joined Oct 2008
Total Posts : 257
   Posted 7/20/2009 9:55 AM (GMT -7)   
I got a baseline before starting my plaquenil momto3 and my vision is fine minus having to get reading glasses for a lazy eye. So if anything turns up we know its the plaquenil. As far as the other doctor, I will def keep her in my address/phone book. I will give this dr some time to figure things out and see if any of the meds help if not i believe i will give her a call. Thank you so much for the support. nothing has improved as of yet. my migraines came back and i have had one the past 3 days. i have had to take excedrin migraine for them even though i am not supposed to take any added pain pills because the pain pills arent working for pain. I also called the pharmacy about my low blood sugars and they said its probably the dexamethasone nasal spray i am on for my allergies so i have to call my dr and see what were gonna do about that. The plaquenil has caused loss of appetite and the naprosyn makes me nauseas if i dont eat so its a vicious cycle but i am still hoping it will work before i go back to college in sept since i am in good spirits. I wish you all well and hope that you feel ok! *hugs* -Brittanee

And as far as the uti, i started my period yesterday so i will have to wait until that is over to see what happens. It almost seems like some things are worse than before but if not worse than def no better...gotta love the "loopy" world of no dx.

P.S. If plaquenil doesn't work what do the drs usually go to next as far as treatment if you dont have a diagnosis yet?
*Wifey & Mommy* -In the "loop" of a diagnosis-They wont even consider it UTCD!- 
Plaquenil- 200mgs x2 in the mornings; Naprosyn- 500mgs twice a day; Dexacort(dexamethasone) Nasal Spray- once daily; One-a-Day womens vitamin- once daily; occasional excedrin migraine.


Lord_Walters_Lady_Bug<3
Regular Member


Date Joined Oct 2008
Total Posts : 257
   Posted 7/21/2009 10:50 AM (GMT -7)   
Hey all. I am not sure what is causing the headaches. I have had them for months but last month they kind of went away for a while and then after i started taking the plaquenil they came back. They are migraines. Either pressure or pain or both and nothing takes them away but excedrin migraine which im not supposed to take with my other pain meds. Suggestions?? I had something called mastoiditis come back on my mri in my brain so im wondering if its that causing the headaches or what. I will have to ask. Any remedies for insomnia? My dr wont give me anything because they treat the short term not the long term. ehh. Well take care all and ill get back to you! *hugs* -Britt

Oh and she also had me stop the dexamethasone spray for a few days to see if it stops the low sugars. Well see!
 
 
*Lupie Britt*
 
-In the "loop" of a diagnosis-They wont even consider it UTCD!- 
Plaquenil- 200mgs x2 in the mornings; Naprosyn- 500mgs twice a day; Dexacort(dexamethasone) Nasal Spray- once daily; One-a-Day womens vitamin- once daily; occasional excedrin migraine.


boxergirl
New Member


Date Joined Jul 2009
Total Posts : 4
   Posted 7/21/2009 2:15 PM (GMT -7)   
Hello all, I am new to the forum.  I have a mixed connective tissue disorder, RA/Lupus crossover...anyway, I started Plaquenil about a week ago and have had explosive diarrhea since the day after I started it...has anyone had this side effect and will it go away?  I haven't had any of the side effects that you describe, though.  Hopefully, you won't get any GI symptoms.

cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 7/22/2009 9:59 PM (GMT -7)   
Boxergirl. I have liver disease and get that side effect from many meds, though not plaq. My docs explained to me that when your gi tract does it, its your liver kicking out what it thinks is poison. If I stick it out despite the diarrhea, I develop the full allergic rash and breathing problems. Then next time when I take it, it happens right away. In my case, my liver can't metabolize the med that well and it backs up in my system and I kind of "od" and the liver sees it as a toxin and kicks it out and eventually a histamine reaction starts. If I take alower dose of the med from the start, I can avoid ths, but once I get the diarrhea, even taking less doesn't work for me becase my body already sees it as an allergen. I would talk to your doc. You might have better luck than me. If you know you are sensitive to meds, which I am, I make sure to letthe docs know to give me the "hepatically impaired" drug. My docs tell me they can't predict what will set me off, it depends on where the liver is damaged and how the drug hits it.
Love, Marji
Ills--Sjogrens-Lupus cond., AI polygland. dysfunction 2, hyper/hypopigment, scoliosis,kyphosis,stenosis, deg.,O.A.,spine surgeries, salivary/lymphectomies, NASH, COPD, RLS, UT/GI bleeds, hystero, brain/nerve damage,TB
Meds--INH,Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, HRT and Lidocaine patchs, Voltaren gel, Klonopin, Vicodin, Restasis, Albuterol, steroids


boxergirl
New Member


Date Joined Jul 2009
Total Posts : 4
   Posted 7/24/2009 3:13 AM (GMT -7)   
Well, I talked to my Rheumy and I was told to stop the plaq for 2 days then restart with one pill a day.  I am supposed to restart it today, but I don't know if I am going to.  Thanks for the info, Marji. 

Lord_Walters_Lady_Bug<3
Regular Member


Date Joined Oct 2008
Total Posts : 257
   Posted 7/24/2009 11:24 AM (GMT -7)   
Hey. I actually dont have that symptom but it really bothers my stomach as far as cramps/bloating etc. Other than that I have been on it since the 6th of july and its not working so far. I am in another flare now too and getting another ulcer eck. I started my dexacort nasal spray back up too because I stopped taking it for 3 days and still had low sugars and this morning it was 73 so I resumed it with my other pills this morning after I checked and wrote my dr about it. I also may have to get a CT of my head to check the mastoiditis in my brain because of the headaches but she seems to think its from lack of sleep which she wont prescribe anything for so what do i do?? lol I am tired of feeling like this too. I wish you all the best hope you are well. *hugs* -Britt
 
 
*Lupie Britt*
 
-In the "loop" of a diagnosis-They wont even consider it UTCD!- 
Plaquenil- 200mgs x2 in the mornings; Naprosyn- 500mgs twice a day; Dexacort(dexamethasone) Nasal Spray- once daily; One-a-Day womens vitamin- once daily; occasional excedrin migraine.


redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 7/25/2009 2:53 AM (GMT -7)   
plaquenil takes at least 6 weeks to begin working and can take 6 months to a year for full benifits.
Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sj√∂gren's, damaged periphrial nerves 2007, exema
Tx: plaquenil, Enbrel, Tramadol, Singulair, Skelaxin, Baby Asprin, Imuran, Prilosec, lasix, Evoxac, Celebrex, Darvocet when things get too bad, prednisone again, various vitamin/mineral supplements, cozar


Lord_Walters_Lady_Bug<3
Regular Member


Date Joined Oct 2008
Total Posts : 257
   Posted 7/30/2009 12:22 PM (GMT -7)   
That is awful. I have been on Plaquenil and 500mg naprosyn which was uped from 375mg after 2 weeks because it didn't touch anything. I am still not getting any relief and in fact my rashes and this flare seem to be worse. I have been doing a lot of outside activities and having trouble resting due to insomnia and pain, not to mention my son was sick and had a high fever for 6 days and I had to get up at night to give him meds so he wouldn't seize like he has in the past. I am ready to feel better but it's not happening...I guess im just looking for someone to lend an ear and share their experience! Hope you all are feeling well. -Brittanee
 
 
*Lupie Britt*
 
-In the "loop" of a diagnosis-They wont even consider it UTCD!- 
Plaquenil- 200mgs x2 in the mornings; Naprosyn- 500mgs twice a day; Dexacort(dexamethasone) Nasal Spray- once daily; One-a-Day womens vitamin- once daily; occasional excedrin migraine.


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7020
   Posted 7/30/2009 12:29 PM (GMT -7)   
Plaquenil takes a while to take effect, plus it is kind of a "stealth" med -- usually we don't think it's doing anything until we try to get off of it and realize it's doing a LOT!

May I suggest that rashes & flare might be worse due to the number of outside activities you are doing? Sun is NOT good for lupus, and is well-known for draining all the energy out of us, giving us rashes, and often starting flares. Even in the shade, outside activities do need to be somewhat limited.

Insomnia is also a big issue with a lot of us -- we end up missing the "restorative sleep" we need, thus our already-depleted reserves never get re-filled. This is something you might want to ask your doctor about, and perhaps try a mild sleep aid. There are lots of OTC meds, but always be sure they are okay to take with your other meds!

Hope your flare calms soon -
Lynnwood, Lupus & Sjogren's Moderator
Life is far too important to be taken seriously. - Oscar Wilde, 1882


lucysgd
Veteran Member


Date Joined Jun 2008
Total Posts : 669
   Posted 7/30/2009 12:44 PM (GMT -7)   
There may be a connection between the Naprosyn and your skin problems.  Check out Lupus.org (lupus foundation) and find their web chat transcripts (click on "community")  Their latest one was about Lupus and the skin.  One of the questions raised had to do with incr skin rashes and the only meds being taken by this person were Plaq and Naprosyn.  The doctor indicated Naprosyn can increase photosensitivity - and was the probable source of her incr problems.  Just a thought.  With your extra outside activities -those two things might be working overtime against you.
Lucy 
diagnoses:  mono 1972; postviral CFS 1997; fibro 1998; UCTD 2007
meds: Plaquenil 400 mg, occasional low dose xanax for sleep aid, artificial tears w/ ointment at night, Advil/aspirin prn
 
 


FW
Regular Member


Date Joined May 2007
Total Posts : 477
   Posted 7/30/2009 4:25 PM (GMT -7)   
Brittanee,
First off, I hope you are feeling better. These illnesses are so frustrating!
Everyone has given great advice.
I can attest to the fact that the Plaquenil doesn't seem to work - until you stop it. After being on it for a couple of years, I thought it wasn't really working any more and told my doc that I wanted to stop taking it. I think I made it about 2 months. My symptoms worsened considerably. Luckily, the med kicked in relatively quickly once I started taking it, again.
Also, I swear by my Ambien CR. If I skip it, I don't sleep nearly as well. And when I am tired, I always worsen.
It took quite a few years and visits to many doctors before I received a firm diagnosis. And, now, seven years later I see 4 different doctors a year to handle the various illnesses and symptoms.
The sun does make everything worse!
Please hang in there - it will be worth it once you find the right combo of meds to make you feel better.
Take care,
Fran

Dx: Lupus, sjogren's, celiac, severe allergies.

Daily Meds: Plaquenil, Zyrtec. Aciphex, Nasacort, Prozac, Ambien CR.
7-11-09 Started CellCept - so far it's like I've been given my life back!
7-21-09 Last day of CellCept for now - allergic reaction - darn - and it was working!

Daily Supplements: Calcium, B-100 Complex, Daily Vitamins.
As Needed Meds: Epinephrine, Benadryl, Proventil, Xopenex, Tylenal, Darvocet, Prednisone.


Lord_Walters_Lady_Bug<3
Regular Member


Date Joined Oct 2008
Total Posts : 257
   Posted 8/1/2009 12:48 PM (GMT -7)   
hi again and thank you all for the support. I actually mentioned to my rheumy about having trouble sleeping and she said she doesn't recommend sleep aides to patients because the short term benefit doesn't help in the long term. I figured it would be a good idea at least until the plaquenil kicked in but I guess idk anything cuz im not a dr lol Dont get me wrong I love my dr but I just dont get that. Anyhow, FW I see you have severe allergies?? I was jw what that consisted of for you. I have taken flonase for a year and it stopped working and I had to bouts where I thought I had sinus infections they were so bad. I was recently put on dexamethasone spray for 21 days because it cant be taken for long periods of time. I am now back on the flonase but was told if I have problems again I will either have to get another prescrip for dexamethasone or see an allergy specialist....more drs ehh. I already have to go see a new neuro at the johns hopkins where I see my rheumy to get my burning pain evaluated. I have to have a full EMG and nerve conduction study done. Well I hope you guys are feeling ok! *hugs* -Brittanee
 
 
*Lupie Britt*
 
-In the "loop" of a diagnosis-They wont even consider it UTCD!- 
Plaquenil- 200mgs x2 in the mornings; Naprosyn- 500mgs twice a day; Dexacort(dexamethasone) Nasal Spray- once daily; One-a-Day womens vitamin- once daily; occasional excedrin migraine.


lucysgd
Veteran Member


Date Joined Jun 2008
Total Posts : 669
   Posted 8/1/2009 2:00 PM (GMT -7)   

Hi Britt -  You say in your signature that "they" won't even consider UCTD as a dx?  Just curious - since that is my current dx - why - and also why, in that case, you're being treated with Plaquenil?  Also confused by no med for occasional sleep aid.  Seems counter-intuitive. 

Lucy


diagnoses:  mono 1972; postviral CFS 1997; fibro 1998; UCTD 2007
meds: Plaquenil 400 mg, occasional low dose xanax for sleep aid, artificial tears w/ ointment at night, Advil/aspirin prn
 
 


FW
Regular Member


Date Joined May 2007
Total Posts : 477
   Posted 8/1/2009 7:50 PM (GMT -7)   
Hi Brit,
Hope you are feeling better. Severe allergies for me is to so many things. Flonase is one of them! Many meds, foods, chemicals. The insurance just stop covering my Nasacort (which worked). So I am trying Nasanex. No allergy problems, but it doesn't seem to be working as well. I am severely allergic to aspirin which is naturally occurring in many things - I am always becoming aware of new problems!

I hope you get a handle on things, soon. It does get easier!
Take care,
Fran

Dx: Lupus, sjogren's, celiac, severe allergies.

Daily Meds: Plaquenil, Zyrtec. Aciphex, Nasacort, Prozac, Ambien CR.
7-11-09 Started CellCept - so far it's like I've been given my life back!
7-21-09 Last day of CellCept for now - allergic reaction - darn - and it was working!

Daily Supplements: Calcium, B-100 Complex, Daily Vitamins.
As Needed Meds: Epinephrine, Benadryl, Proventil, Xopenex, Tylenal, Darvocet, Prednisone.


Lord_Walters_Lady_Bug<3
Regular Member


Date Joined Oct 2008
Total Posts : 257
   Posted 8/3/2009 10:37 AM (GMT -7)   
Actually she told me it was looking like lupus but she didn't want to call it lupus yet and that it appeared autoimmune as well but I dont have a firm diagnosis of anything. I had seizures when I was 15 and I believe they were connected to my disease but my dr said she cant say because she wasn't there at the time. So anyhow, because I have been dealing with this for almost a year and no dr had tried to help me at all she felt I was due for some treatment and since plaquenil is the least invasive you could say we started with that after trying 375mg of naprosyn twice a day with no relief at all. I am still not having relief and read in a book updated to this year about lupus that even those without major organ involvement that only have a 50% relief in symptoms after 6 months, you can try a low dose steroid and/or switch to something like mexotrethate. I really think the plaquenil is not going to help completely. I am severely photo and sun sensitive so it causes a lot of problems with flares etc. I hope this helps you lucy! I am here if you ever need a friend! And thank you FW for your comment :) I will prob have to see an allergy specialist...we "lupies" have so many of them lol *Hugs to all* -Britt
 
 
*Lupie Britt*
 
-In the "loop" of a diagnosis-They wont even consider it UTCD!- 
Plaquenil- 200mgs x2 in the mornings; Naprosyn- 500mgs twice a day; Dexacort(dexamethasone) Nasal Spray- once daily; One-a-Day womens vitamin- once daily; occasional excedrin migraine.


nona43
Regular Member


Date Joined Jul 2009
Total Posts : 42
   Posted 8/3/2009 2:10 PM (GMT -7)   
Hi Britt, I also have severe burning pain in my legs nothing helps, sorry you have to do EMG I know ive been there those do hurt alot.
I am getting a MRI on th 11th to see if it is my back . do you have any kind of back problems or osteopsorosos also this disease will suck the vitamin D right out of you my doc said it could be a symtom of vit D deficiancy anyway hope you feel better soon and get the diagnoses you need to get on the track to getting better good luck too you Britt.....nona
dx Lupus,whith  brain, kidney ,heart invovment
Rhumitoid Arthritis ,seizures ,autoimmune hepatitis.
Meds-planquanil, lamictal ,lopressor ,imdur ,nitro, vtaminD ,metformin,
synthroid, lortab, phenergan, xanax ,prednisone ,kenelog injections
cytoxan, remicade
 
  Never Give Up!
                          nona

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