Tapering Prednisone and Adrenal Grands? What is the worst thing that can happen?

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wednesday77
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Date Joined Oct 2007
Total Posts : 345
   Posted 3/25/2010 10:33 PM (GMT -6)   
I have been on Prednisone several times before but am currently tapering dwon from 60 mg - I think I have been on Pred longer than i ever have in the past (about 4 months now) and am afraid of what I have been reading about what can happen if you taper too quickly.
 
What can happen if you taper too quickly?  And what is too quickly for the average person?  My GI doesn't seem to mind if I were to only knock it down 5 mg every few weeks and that is too long for me.  It is wrecking the rest of my body.  I have been going down 5 mg every 5 days/a week or so and just want to make sure other people have been on that same schedule.
 
So questions:
 
1) how quickly is too quickly to taper
2) what are the bad things that can happen if you do taper too fast
3) what happens with your Adrenal Glands when you taper the pred, how soon so they start up producing their own steroids again
4) can you counteract problems by recognizing the symptoms of whatever it is and bumping your dose back up
5) is there any kind of a natural approach to counteracting the symptoms of weaning off pred?
 
THANK YOU in advance for ALL responses!!!  
33 yr old Female
Crohn's Colitis
DX 12/06
 
Currently on Remicade, Humira, 55 30 mg Prednisone, Multivitamin, Calcium, Probiotics, Vitamin D, a few other herbal supplements my natureopath has me on.
 
Eating a Macrobiotic diet, no meat or dairy, trying to cut way back on sugar and white foods.  Trying to focus on a more holistic approach to healing. 
 
 
 


wednesday77
Regular Member


Date Joined Oct 2007
Total Posts : 345
   Posted 3/25/2010 11:06 PM (GMT -6)   
Also, how do you end up with something like Addison's disease?  Can all those things be reversed?
 
 

Grandpato2
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Date Joined Dec 2009
Total Posts : 681
   Posted 3/25/2010 11:19 PM (GMT -6)   
When my GI put me on prednisone at 40 mg/day knowing I was going to be on it for a long term, She leaned across her desk, looked me in the eye and said " Do not stop this drug. You will die!" Answer your question? I'm not going to tell you how to taper thats your dr.'s job but I understand the last 10 mg are the danger point. A few years ago when I was on it friend of mine who knew I was on it was complaining on the phone to me about his girl friend was really sick and very lethargic and couldn't even stand up. He told me 2 days earlier she'd decided she couldn't stand the side effects and decided to quit and throw her prednisone down the toilet. I told him to bring her to my house and gave her her normal dose and enough pills to get her to her Dr.s appointment after the weekend. Boy was she sick she was lying in the car and couldn't even sit up. He took her home and phoned me about 6 hours later and said she was feeling much better and was walking around but still felt tired. My suggestion DON"T mess around with this drug please! Rob


Male, 54 years old with Crohn's since 15 years old, diagnosed at age 46. Terminal ileum resected 2002. 5 months of remission. Crohn's has now been active since early 2003. Had a gall bladder removed Nov. of 2009. Currently on Remicade every 8 weeks, Nexium, Iron, B-12 injection every 4 weeks,5-asa Asacol, Morphine Sulfate as needed for pain. Cymbalta for long term pain control. 5-asa Salofalk, Entecort, Imuran and Prednisone in the past.

Post Edited (Grandpato2) : 3/25/2010 10:28:09 PM (GMT-6)


randynoguts
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Date Joined Jan 2003
Total Posts : 5958
   Posted 3/25/2010 11:25 PM (GMT -6)   
first let me say that you should follow your dr instructions ;0)

now ive done the same. ive gone too fast a couple of times you can get verysick if you taper too quickly. since youvebeen on it for 4 months you body has stiopped making its own cortisone , they need time to restart thats what the tapering is for. you body cannot react to stress in a normal way and you could permantly damge yourself

you may start feeling weak
you may start sweating for no reason
if you have stressfull event like an accident or even as small as a dental appointment your body cannot respond with the cortisone needed , you can go into spontanious shock. your heart can stop, etc... some people adrenal glands never start back up. becoming steroid dependant. your body has to sense the reduction and start up the adrenal glands again slowly, its not just aflip of the switch so to speak. so try taliking to the dr and seeing if he is comfy with you accelerating the schedule in my experiance 5mg very week or 10 days should be adequate . your body needs to adjust with each dose change.
randynoguts 



     http://www.geocities.com/randynogutsweb/


wednesday77
Regular Member


Date Joined Oct 2007
Total Posts : 345
   Posted 3/26/2010 7:59 AM (GMT -6)   
Thanks Randy! 
 
feeling weak?  sweating for no reason?  oh WAIT, that's being on prednisone now! :)
 
I understand the need to taper slowly, and I am, and I have in the past - I was just wondering what exactly happens to your body when you come off the steroids.  The horror stories of "you might die!" don't explain what that actually means and what is going on in your body. 
 
I am tapering about 5 mg every 5 days or so and if I start to have problems I'll probably just stay at the dose I am on for another 5 days or so and see how I feel then, but otherwise I am am having the same side effects I do while on the prednisone - heart racing, etc combined with lethargy, etc so I can't tell the difference with any new symptoms!
 
Thank you so much for responding, I appreciate your input!! 
33 yr old Female
Crohn's Colitis
DX 12/06
 
Currently on Remicade, Humira, 55 30 mg Prednisone, Multivitamin, Calcium, Probiotics, Vitamin D, a few other herbal supplements my natureopath has me on.
 
Eating a Macrobiotic diet, no meat or dairy, trying to cut way back on sugar and white foods.  Trying to focus on a more holistic approach to healing. 
 
 
 


wednesday77
Regular Member


Date Joined Oct 2007
Total Posts : 345
   Posted 3/26/2010 8:04 AM (GMT -6)   
Also, this is the information that seems to come up when I search for prednisone tapering - all these things happen to me anyway when I am having a flare - so I guess I am looking for what happens that is worse than this and what those symptoms look like.
 

Weakness and Fatigue

  • For many people, an adrenal gland failure causes both weakness and fatigue. As the hormone levels decline, the body experiences an imbalance. This imbalance can tap a person's energy, causing him to become unexplainably weakened and fatigued. This weakness and fatigue may also be attributed to the effect these hormones have on both the blood pressure and the blood sugar.

    Digestive Distress

  • Of all the symptoms involving adrenal gland failure, digestive distress is one of the more common. This is largely due to the affect cortisol has on the digestive system, as it helps stimulate the production of gastric acids. As the level of cortisol wanes, the insufficiency eventually impacts digestion. However, not everyone reacts to this deficiency in the same way. For some, they experience nausea and vomiting. For others, they suffer bouts of diarrhea or constipation. Any of these factors can influence appetite and weight, seeing a decrease in each.

    Hypotension and Hypoglycemia

  • Often accompanying this digestive distress are the symptoms of hypotension (low blood pressure) and hypoglycemia (low blood sugar). When the body sees a decline in the amount of cortisol, the blood vessels experience vasodilation, or a widening. This creates less resistance in blood flow, decreasing its pressure and often causing hypotension. With hypoglycemia, the lack of cortisol actually affects the use of insulin and amino acids, resulting in less sugar (glucose) in the blood. Either condition may cause faintness, lightheadedness or dizziness.

    Pain

  • It isn't uncommon for someone suffering adrenal gland failure to experience pain. For some, this pain is isolated to the abdominal region. For others, it is felt within the muscles and joints of the body. It all depends on how the individual reacts to the change in hormones.

    Cognitive Changes

  • Sometimes, adrenal gland failure triggers cognitive changes. Most of which involve a person's mood. The dip in hormones can cause some to become more irritable, agitated or enraged than normal. It can cause others to become more depressed, despondent or emotional than prior to the insufficiency.

    Skin Discoloration

  • An adrenal gland failure can cause skin discoloration. With this particular symptom, a person notices a darkening to the skin as a result of the change in hormones.

  • 33 yr old Female
    Crohn's Colitis
    DX 12/06
     
    Currently on Remicade, Humira, 55 30 mg Prednisone, Multivitamin, Calcium, Probiotics, Vitamin D, a few other herbal supplements my natureopath has me on.
     
    Eating a Macrobiotic diet, no meat or dairy, trying to cut way back on sugar and white foods.  Trying to focus on a more holistic approach to healing. 
     
     
     


    Rider Fan
    Veteran Member


    Date Joined May 2008
    Total Posts : 1434
       Posted 3/26/2010 10:03 AM (GMT -6)   
    There is a poster here, Julia Hill, who I believe has permanent adrenal suppression from being taken off of steriods too quickly in the hospital. She has to take a low dose of prednisone every day now. Be careful.
    33 y/o male. Dx'ed in 1999. No surgeries.

    Current meds: Humira 2/27/09. Proferrin iron pills.

    Tried SCD, didn't work, now avoiding gluten and dairy.


    Go Saskatchewan Roughriders!


    wednesday77
    Regular Member


    Date Joined Oct 2007
    Total Posts : 345
       Posted 3/27/2010 12:08 AM (GMT -6)   
    She has to take a low dose forever?  What is a low dose, like 5 or 10 mg?  Does permanent mean she will be on prednisone for the rst of her life?

    Jen77
    Veteran Member


    Date Joined Mar 2006
    Total Posts : 2171
       Posted 3/27/2010 12:36 AM (GMT -6)   
    My doctor said you can basically die, that's how serious it can be. He gave me a really great taper schedule, since before that I started to feel sick with the tapering I was doing before. And yes, I started to feel bad during that last 10 mg taper. I had to go up a few times, and then go down that final time with his taper schedule. That worked great. I don't think it's something to fool around with, that's for sure! Your body just stops making that stuff while your on the pred, and it's necessary to have it! Tapering the right way for you allows your body to "wake up" and start making it again.
     
    Oh and yes I've heard of people having to take pred FOREVER because of that condition, their body simply will never make it again.


    ~Jennifer
     
    Diagnosed with Crohn's Disease 2/06, and Health Anxiety/OCD 12/08 Taking Asacol, Questran, Toprol XL, and Celexa.


    wednesday77
    Regular Member


    Date Joined Oct 2007
    Total Posts : 345
       Posted 3/27/2010 1:01 AM (GMT -6)   
    this is the 5th time I've had to taper off prednisone - it has been different for me each time.  I was hoping someone could give me their specific tapering schedule (since i have done this before I get how serious it is).
     
    Do people really DIE from tapering 5 mg a week or have to be on pred FOREVER because they are dependant?  I come here to get firsthand information from people who are going through the same thing I am going though.  Has anyone recently tapered off prednisone where this has happened? 
     
    I have a (very long, too long) tapering schedule from my dr,  but if i relied solely on information from my dr i wouldn't need this forum and neither would anyone else here.  I appreciate all input but want to hear REAL information from REAL people, please.  This is a serious and big deal I am going through and know that probably half the people here have been put on prednisone at some point so must understand what I am going though.
     
    I am sure if you just stop taking your prednisone you can face serious health concequences but for people tapering you deal with side effects too.  I guess my question is how serious are the side effects people deal with when they are tapering.
     
     
    33 yr old Female
    Crohn's Colitis
    DX 12/06
     
    Currently on Remicade, Humira, 55 30 mg Prednisone, Multivitamin, Calcium, Probiotics, Vitamin D, a few other herbal supplements my natureopath has me on.
     
    Eating a Macrobiotic diet, no meat or dairy, trying to cut way back on sugar and white foods.  Trying to focus on a more holistic approach to healing. 
     
     
     


    Celey
    Veteran Member


    Date Joined May 2007
    Total Posts : 1284
       Posted 3/27/2010 1:02 AM (GMT -6)   
    A 5 mg taper doesn't sound like it's going too quickly to me... but yeah... Listen to everyone here.... Stopping prednisone can cause death... In case, you didn't quite understand what everyone else was saying... This is what happens...

    Your body, on a natural basis... produces this hormone (cortisol, I believe)... Obviously, your body needs this hormone... it's needed for a variety of processes...

    When you start taking prednisone, the prednisone provides you with extra doses of that hormone... So your body is like... "DUDE! Someone's doing the work for me! Awesome! I'm going to go watch football!"

    So, now your body has stopped making that hormone because the prednisone is providing that hormone for it.... Steroid-dependent as someone mentioned...

    When you taper down at a slow rate, your body gradually realizes... "Hey! What's going on here? Where'd that dude making that hormone go? Crap, now I gotta miss my soaps..." So it gets up off its lazy butt and starts slowly producing more of that hormone...

    If you taper far too quickly... or if you just stop taking the prednisone suddenly... Your body doesn't have time to start producing that hormone.... So, what happens is... it goes into shock... "OH MY GOD! WHO TURNED OFF THE LIGHTS?!"

    And when you go into shock, the systems in your body start shutting down... which, of course, isn't a good thing.... Because your whole body can shut down permanently... i.e. Death...

    So... That's the story... Hope it was informative... //^_^\\
    I think I am being picked on by life, sometimes. But's that okay. Life and I are good buddies... I know life doesn't mean no harm. It just is the way it is. I can accept that.


    wednesday77
    Regular Member


    Date Joined Oct 2007
    Total Posts : 345
       Posted 3/27/2010 1:09 AM (GMT -6)   
    Celey, THANK YOU for your post.  It was just what I needed to hear. :)
     
    I am trying to listen to my body and taper at an appropriate rate.  But prednisione is wreaking havoc on my body and I would like to be off it completely as soon as possible - even though for me at this point means at least another month. It's better than another 3+ months to taper.
     
    Your post made me laugh, thanks again! :)
    33 yr old Female
    Crohn's Colitis
    DX 12/06
     
    Currently on Remicade, Humira, 55 30 mg Prednisone, Multivitamin, Calcium, Probiotics, Vitamin D, a few other herbal supplements my natureopath has me on.
     
    Eating a Macrobiotic diet, no meat or dairy, trying to cut way back on sugar and white foods.  Trying to focus on a more holistic approach to healing. 
     
     
     


    Celey
    Veteran Member


    Date Joined May 2007
    Total Posts : 1284
       Posted 3/27/2010 1:17 AM (GMT -6)   
    Prednisone is a very difficult medicine, I agree.... You will feel so much better once you finish tapering...

    And I'm glad I made you laugh... Laughter is a great medicine, as well... :D... And I often find it comforting and amusing to attach personalities to various processes to my body... I dunno why... *lol*

    I like to imagine sometimes being able to take my disease out of my body and start beating on it like a punching bag...

    You just gotta find ways to make light of things, sometimes... :)
    I think I am being picked on by life, sometimes. But's that okay. Life and I are good buddies... I know life doesn't mean no harm. It just is the way it is. I can accept that.


    Nanners
    Elite Member


    Date Joined Apr 2005
    Total Posts : 14994
       Posted 3/27/2010 8:35 AM (GMT -6)   
    Wednesday I did want to add that each time I go down on my Pred, I will generally have about 2 days of feeling yuck until my body adjusts to the reduction. I will get really achy joints for a day or two until I adjust. I hope that helps. And Celey's advice was right on too. Hugs!
    Gail*Nanners* Co-Moderator for Crohns Disease & Anxiety/Panic
    Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
    *Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

    Christine1946
    Veteran Member


    Date Joined Aug 2008
    Total Posts : 5452
       Posted 3/27/2010 11:38 AM (GMT -6)   
         I  have suffered with ulcerative proctitis for over eleven years.  Since that time I have been on and off prednisone several times but usually able to taper off within a two month period.  May of 08 I was hospitalized, had to stay on prednisone for seven months before full recovery only to flare again in May of 09.  I now consider myself prednisone dependent and trying desperately to get off this &*%$ drug.  Remicade failed after my 3rd infusion.   I started Humira on Wednesday.  Last Monday, the doctor had to increase the prednisone to 40 mgm (I was down to 10 mgm but bleeding like a stuffed hog).  Still bleeding and crampy.  Afraid to decrease the prednisone just yet.
         I wanted to say that I had a close friend who suffered from Crohn's.   She took herself off the prednisone, developed Addison's Disease and died from Sepsis five years ago at age 58.  This is something we can ill afford to take lightly.
         If Humira fails, I am headed for surgery.  Tired of this suffering.
     
    Diagnosed with ulcerative proctitis in 1998 in hospital
    Hospitalized (2nd time) in May 2008 for ten days.
    Remission Nov 08 thru May of 09.
    Flare May of 09 thru Aug of 09.  Very short remission.  Flared again Nov 1st.  Started Remicade Nov 18th.  Felt great after first two infusions.  Suffered a set back after 3rd infusion on Dec 31st. 
    But suffered thru a 4th infusion...nada.  Starting Humira Mar 24th.


    Zanne
    Veteran Member


    Date Joined Apr 2005
    Total Posts : 3763
       Posted 3/27/2010 12:52 PM (GMT -6)   
    My mother was one of the Crohnies who was steroid dependent. She had to take 5mg every day for her life. At this point it is looking like I might also be. I am trying to taper and have been for years, but every time I get to between 8 to 5 mg I start to have issues and have to go back up and taper again. I have been told to wear a medic alert bracelet in case I am ever in any type of accident because I will need extra adrenaline or I will go into shock and DIE. This is serious medicine. I taper by 1mg pills and go down once a month, that is how slowly I take it and still I have trouble. At this point I am at 5mg and hoping that I can stay there for a few months and try to go down again. We'll see. But just wanted you to know that there are in fact many people who are steroid dependent. At 5mg I have no side effects from the prednisone, but it still would be nice to be off it.
    Suzanne

    CD 20 years officially, 30 unofficially. 3 resections '93, '95 '97
    Managing with strict low residue diet, keeping symptoms to a minimum. All test show small amount of ulceration, still have occasional blockages. But still have a great time with my 2 daughters and husband!


    Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....


    Becoming undone
    Veteran Member


    Date Joined Jul 2007
    Total Posts : 927
       Posted 3/27/2010 7:57 PM (GMT -6)   
    Yuppers...my body loves them steroids. Been on the stupid stuff for over 3 years...down to 1mg...just as Nanners said, feel downright HORRID for a couple of days and even weeks/months, depending on the dose and how I'm doing...

    Just a thought, though you may feel tired cuz of them steroids, and if the D and bleeding are a bit in control, if you start and stay slow, you can work out, like forever, and the muscles don't hurt at all, even the next day!!! Helps get rid of that shakey feeling when on higher doses, at least for me...I did the elipitcal...slow, but I could go forever!!! (the happy side of prednisone)
    "The earth laughs in flowers"


    vls
    Regular Member


    Date Joined May 2005
    Total Posts : 166
       Posted 3/28/2010 6:06 AM (GMT -6)   
    Wow. I think you guys have better drs than I have. Everytime I was on Pred. I was prescribed 10mg pills and told to take 4/day, I HATE THEM!! I never was told to taper down to anything less than 10mg/day. And in the hospital a few times on IV steroids..when the IV was removed, no tapering down. I'm really hypoglycemic now, could this be why. I haven't used steroids for a few years now.
    diagnosed 13 days following an MMR vaccination at the age of 44
    tried Colazal, Pentasa, Immuran, Remicade, Prednisone, Cipro, Flagyl, LDN, Osiris clinical study,  accupuncture, began Cimzia 5/2009


    Julia Hill
    Regular Member


    Date Joined Mar 2008
    Total Posts : 495
       Posted 3/28/2010 3:40 PM (GMT -6)   

    Hi,

    Please listen to what everyone is saying here, and really hear it because prednisone is not a drug to take lightly.  I have had crohn's for 30 years and have pretty much been on prednisone all that time minus maybe a year or two all together.  I had surgery in 1997 and my colorectal surgeon took away my IV steroids and didn't replace them orally.  I began to feel worse as the days went by until I finally came crashing down and couldn't even get up.  I was nauseous, had no appetite, was weak, lethargic, etc..  Luckily my surgeon came back on shift after 3 days off and saw me and knew immediately I needed steroids.  I spent another week in the hospital on IV steroids and have been on them orally ever since.  I seem to need 10 mg/day as whenever I have tried to wean down by 1mg/month I just can't function properly.  Of course I have had an ACTH test as well as the glucose test for testing the adrenal glands, and I failed both.  I too wear a medical alert saying steroid dependent as instructed by my endocrinologist. 

    Even all these years later, I have never felt the same as I did before I came crashing down.
     
    Take care,
    Julia
     

    elexis
    Regular Member


    Date Joined Feb 2003
    Total Posts : 93
       Posted 3/28/2010 7:13 PM (GMT -6)   
    I myself was taking Pred for over a year before I got off and I had a hardtime getting off of it...Had to start taking Remicade just to get off the drug..But I BELIEVE that because of the long term use I developed Hypothyroidism....Never had a problem before so One can only guess....But I know trying to get off it I was super tired and drained.

    I wish u the best!
    Dx. w/ Crohn's Disease May 2000
    Meds: Asacol 400MG, Imuran 50mg, RemicadeHumira
    Small Bowel Resection November 2008

    Dx w/ Hypothyroid 2001
    Medication: Levoxyl 88MCG
    Factor Five Leiden
     


    wednesday77
    Regular Member


    Date Joined Oct 2007
    Total Posts : 345
       Posted 3/28/2010 9:23 PM (GMT -6)   
    Julia Hill said...

     I seem to need 10 mg/day as whenever I have tried to wean down by 1mg/month I just can't function properly.  Of course I have had an ACTH test as well as the glucose test for testing the adrenal glands, and I failed both. 

     
     
    Is there a test you can take to see how your adrenal glands are holding up?  What is an ACTH test?  Is this something routine your dr tests you for?

    33 yr old Female
    Crohn's Colitis
    DX 12/06
     
    Currently on Remicade, Humira, 55 30 mg Prednisone, Multivitamin, Calcium, Probiotics, Vitamin D, a few other herbal supplements my natureopath has me on.
     
    Eating a Macrobiotic diet, no meat or dairy, trying to cut way back on sugar and white foods.  Trying to focus on a more holistic approach to healing. 
     
     
     


    trent86
    New Member


    Date Joined Apr 2013
    Total Posts : 6
       Posted 4/26/2013 5:23 AM (GMT -6)   
    New to this forum which looks great, clear advice. Just need to check if I am being overcautious with the reduction of prednisolone. I seem (still not too clear) to have had a severe allergic reaction to something back in March which caused an awful itchy rash pretty much all over. Have had some short courses of pred for a bit which kinda helped. Currently since the beginning of this month have had 9 days at 25mg followed by 4 at 20mg back up to 30mg (on GP advice) which I took for 6 days. I have started to reduce on my own (have to wait a month to see a doctor and they are not easy to talk to0 and now on 20mg for past three days. Intend to stick to 20mg for two more days then five days on 10mg and hopefully off completely Rash still around but improved. Does anyone think this sounds ok? I feel fine so far and dont think I have been on them long enough for major issues but then I am not a doctor so its all trial and error here.
    Any advice would be very welcome.

    NiceCupOfTea
    Veteran Member


    Date Joined Jan 2010
    Total Posts : 5649
       Posted 4/26/2013 10:12 AM (GMT -6)   
    Might want to drop by 5mg every five days instead of 10mg - that's kinda fast. Unlikely to be harmful, but still, better safe than sorry. #cliche.

    trent86
    New Member


    Date Joined Apr 2013
    Total Posts : 6
       Posted 4/26/2013 10:57 AM (GMT -6)   
    Thanks for the quick response, have got this far with no probs and will try to curb my impatience............was just hoping that not having been on them for as long as some people I might be ok

    NiceCupOfTea
    Veteran Member


    Date Joined Jan 2010
    Total Posts : 5649
       Posted 4/26/2013 2:34 PM (GMT -6)   
    Are you having side-effects from them? I supremely doubt that dropping 10mg every 5 days would be harmful, given you have only been on steroids for just under a month and are not on a massively high dose, but I'm just being cautious. It's up to you whether you want to try it.
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