Joint Pain -PLEASE READ ME

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Buckeyeinfl
Regular Member


Date Joined Oct 2006
Total Posts : 114
   Posted 6/10/2008 1:42 PM (GMT -7)   
Hi everyone,
I'm here to ask you to PLEASE read my story so that you are aware that your joint pain may not be Crohn's related, but steroid related.  My daughter was on Prednisone for 4 months trying to get an aggressive flair of UC under control which ultimately resulted in a total colectomy and j pouch creation.
 
A year later, her right knee started hurting with what we thought was osteoarthritis or inflammatory arthritis and it has since stopped hurting.  The x-rays showed nothing and blood tests were normal.  Her rheumatologist decided "on a whim" to do an MRI...that's when we discovered that she has Osteonecrosis, aka, Avascular Necrosis.  This is a silent disease and you don't know you have it until you start having joint pain and that's when it starts to show up on regular x-ray.  After finding a specialist to treat her, he suggested MRI's of all major joints.  We know now that she has it in her right shoulder, both elbows, both knees, and both ankles and she doesn't have pain yet.  Prednisone users are warned of "Joint damage" and of Osteoporosis, but not about the risk of bone death until you have it.  Then, the disclosure is well known and there's not much you can do except wait for joint replacements if you wait too long.  The problem with IBD is that joint pain can come from the medications, or inflammatory arthritis, or osteoporosis, or osteonecrosis.  We are devastated by this diagnosis for her at 21 years old...if you suspect this is going on for you, please insist on an MRI.  With steroid use and AVN, the damage is almost always bilateral, so if you have it in one hip, it's likely in the other and the same goes for other joints. 

From the MAYO clinic:  "Avascular necrosis is death of bone tissue due to a lack of blood supply. This can lead to tiny breaks in the bone and the bone's eventual collapse. Avascular necrosis most often affects the head of the thighbone (femur), causing hip pain. But it may affect other bones as well. Blood supply to the bone can be impaired for a number of reasons, including injuries. Avascular necrosis is also associated with long-term use of steroid medications and excessive alcohol intake. Your doctor might use other terms to describe avascular necrosis, such as osteonecrosis, aseptic necrosis or ischemic bone necrosis. Avascular necrosis is progressive, meaning it worsens with time. Managing the condition is a lifelong process." 

We've been to 3 orthopedic surgeon's and each one attributes this to the steroid use.  Her Orthopedic Surgeon believes that we've caught this early enough for relatively non-invasive surgical procedure to be 80% successful.  It's called core decompression.  We are feeling cheated by the medical and pharmaceutical company for not disclosing this risk.  How many of you have heard of it?  I just wonder how many IBDers who've taken Prednisone for much longer than she has and are walking around with this silent disease in their body. 

 

 

 


20 yo daughter w/ Pancolitis
diagnosed 8/30/06
Step 1 colectomy/jpouch creation 11/27/06
Step 2 takedown 2/9/07
****************
VSL #3 DS
21 yo Daughter diagnosed with right shoulder,
bilateral elbow, bilateral knee, and bilateral ankle AVN
 


Celey
Veteran Member


Date Joined May 2007
Total Posts : 1284
   Posted 6/10/2008 1:57 PM (GMT -7)   
I was told that AVN is actually a rare complication of long-term prednisone use. I've been having joint pain... and my doctor wouldn't order an MRI on me because my X-rays were normal and my blood tests were normal (except for a couple of ordinary Crohn's things like an elevated white blood cell count), too...

However, I have recently had an MRI done... still waiting on the results of that, but I was told by an ER physician that there was nothing severe... just something about a bulging disc...

I am just now starting to taper off prednisone... and I've been on prednisone for almost two years... (At varying doses, mostly 10 mg and 20 mg, but here recently I've been on it for a month or so at 40 mg... and I've done 60 mg before, too...)

Of course... I suppose I could be wrong...
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.


Buckeyeinfl
Regular Member


Date Joined Oct 2006
Total Posts : 114
   Posted 6/10/2008 2:55 PM (GMT -7)   
Hi Celey,
My first thought is my daughter's x-rays were normal as was her blood tests. It didn't show up until they did an MRI. I have to wonder how "rare" it really is because doctors refuse to do MRI's for patients and dismiss it as "arthritis" like symptoms. I'm now a member of an AVN support group and there are many people there with stories similar to mine...and remember, she was only using it for 4 months. I'm not trying to alarm anyone, just inform. If you know what to look for and be suspicious of, and it's caught early, there are treatments to save your joints.

It's good that you have that MRI coming, but remember that AVN generally attacks the hips, shoulders, knees, ankles and some other joints as well. If you have pain in those areas, definately insist on an MRI. Better to rule it out and be wrong, than to let it go THINKING it's medication causing the pain or arthritis, or the disease process of Crohn's or Ulcerative Colitis.
20 yo daughter w/ Pancolitis
diagnosed 8/30/06
Step 1 colectomy/jpouch creation 11/27/06
Step 2 takedown 2/9/07
****************
VSL #3 DS
21 yo Daughter diagnosed with right shoulder,
bilateral elbow, bilateral knee, and bilateral ankle AVN
 


Celey
Veteran Member


Date Joined May 2007
Total Posts : 1284
   Posted 6/10/2008 3:13 PM (GMT -7)   
Yeah, definitely... The thing is... MRI's are very expensive... and doctors don't want to do them... and when I told my doctor I wanted one done because of the possibility of AVN, and he told me it was rare and that there wasn't enough evidence to have it done. So... *Shrugs*

I had to have that MRI done, though, when I went to the hospital... because I could hardly walk... *Had really bad right knee and right hip pain...*

Been having pain in my hips, knees, and ankles for quite a while now... But again... I did have an MRI done... and the ER physician assured me that there didn't appear to be anything severe... somethin' about a bulging disc... (I've read up a little bit on it... and it could be what's causing my pain in my hips, knees, and ankles...)

Dunno how I got a bulging disc, though... I'm not old. I'm 19... and I avoid heavy-lifting because of my tummy pain...
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.


LBJ
Veteran Member


Date Joined May 2005
Total Posts : 511
   Posted 6/10/2008 3:31 PM (GMT -7)   
I'm sure I probably have the same problem. I was on Prednisone for just about a year, 8 years ago. And I'm on it again now.
I have major joint pain, my right knee is totally messed up, and this CD flare has all my lower and upper joints flared.
I just started with a rheumatologist last month and go next week to see him. It's on my list of things to bring up and get
checked out.
Dawn
Living with Crohn's Disease since Jan./2000
But still trying to figure out if I truely have it.
(This is such a confusing disease)
 
Meds I have tried:  Just about everything 
Meds currently on:  Prednisone 40mg
 


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10392
   Posted 6/10/2008 3:36 PM (GMT -7)   
I also developed AVN in my shoulders from steroids. I was on Entocort, which wasn't "supposed" to have systemic side effects. Now they know it does for some of us. I know we have at least one more person at the UC board with this issue, so while it may be uncommon, it's definitely not unheard of.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Avascular necrosis in both shoulders is my "forever" gift from steroid therapy.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
 
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.


Buckeyeinfl
Regular Member


Date Joined Oct 2006
Total Posts : 114
   Posted 6/10/2008 4:09 PM (GMT -7)   
Judilyn,
"I know we have at least one more person at the UC board with this issue"..... but, my hunch is that there are so many more, because MRI's are expensive and IBDers have many other things that they can attribute their joint pain to. Have you had your hips MRI'd? Even though she had a short bout with UC, I feel part of the IBD family because having witnessed her suffering, I feel an obligation to speak up about this.

Dawn, best of luck at your appointment...I truly hope that you don't have AVN, but at least you'll know and if you do, you can begin treatment to halt the progression.

Celey, because you have pain in your joints is evidence enough to have them checked out. And if your doctor won't order the MRI's, maybe it's time to look for a doctor who will. At the very least ask to have your hips checked...a hip can go from painful to total collapse within two years. Again, not trying to scare you, but if you are armed with information, the doctor should listen to your concerns and order the tests to put those concerns to rest. Stand firm...it's your body and you have a right to know.
20 yo daughter w/ Pancolitis
diagnosed 8/30/06
Step 1 colectomy/jpouch creation 11/27/06
Step 2 takedown 2/9/07
****************
VSL #3 DS
21 yo Daughter diagnosed with right shoulder,
bilateral elbow, bilateral knee, and bilateral ankle AVN
 


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 6/10/2008 6:19 PM (GMT -7)   
I would just like to caution everybody against taking an alarmist stance here. Yes, AVN is serious, but it is also (as Celey has said) a rare side-effect of pred use.

We have members here who suffer from health-related anxiety. Please, let's bear this in mind and not exacerbate members' fears.

Buckeyeinfl, I don't mean to diminish the seriousness of your daughter's condition. I would ask, though, that you please not frighten people. Some people here are anxious enough already.

Thanks.

I.
Co-Moderator Crohn's Forum.


Ides
Forum Moderator


Date Joined Nov 2003
Total Posts : 7077
   Posted 6/10/2008 8:24 PM (GMT -7)   
I developed avascular necrosis [also called osteonecrosis] in both femoral heads. I have a long history of prednisone usage in the '80s to control my asthma. However, the pain that lead them to find the AVN in my hips did not come on until 2004. My GI, rheumatologist and ortho doc all agree that my AVN is a result of a Crohn's related "incident." AVN is a rare but increasingly documented extra-intestinal manifestation of Crohn'.s disease. While prednisone usage is known to cause AVN, it is not the only cause. Just today, I was informed that I need to have an arterial angiogram and a stent placed in my left leg to improve the arterial blood flow. According to the vascular surgeon, my worsening aterial flow is being exacerbated by being on immunosuppresants. Crohn's can i,pact many areas of the body...
Moderator Crohn's Disease Forum
CD, Ankylosing Spondylitis, small fiber peripheral neuropathy, avascular necrosis, diffuse connective tissue disease, Sjogren's Syndrome ?
 


rootsmith
Veteran Member


Date Joined Jan 2004
Total Posts : 598
   Posted 6/10/2008 9:47 PM (GMT -7)   
I was just told by my rheumatologist that AVN has developed in some people after as little as a medrol dose pack for a case of poison ivy. Or maybe it was one case, written up in a medical journal but he said he was obligated to tell me.
10 years, many tests, 3 gi doctors, Pentasa 1000mg 3x day
diovan, simvastatin, sertraline, lyrica, 10mg prednisone, next???   


Jen77
Veteran Member


Date Joined Mar 2006
Total Posts : 2691
   Posted 6/10/2008 10:04 PM (GMT -7)   
I'm very sorry to hear about your daughter, that is just devastating news. I think it's good to keep in mind these things can happen, but like Ivy said, we shouldn't all scare ourselves with things that are relatively rare. Steriods can be an evil thing to take, but they also save lives. Like always we (and our docs) have to weigh the risks to the benefits.

I hope things go well for your daughter!
~Jennifer
 
Diagnosed with Crohn's Disease 2/06 after sever GI bleed. Has been suffering since 1998. History of rectal fistula and gallbladder removal. Currently taking Prednisone: tapered to 30 mg, Asacol, Questran, Toprol XL (for high blood pressure).


Buckeyeinfl
Regular Member


Date Joined Oct 2006
Total Posts : 114
   Posted 6/11/2008 6:52 AM (GMT -7)   
Ivy,
I respect the position you are taking, and I'm not trying to frighten people or take an alarmist stance. The subject itself is alarming. I'm not trying to induce anxiety as I've said in my previous posts, and knowlege is key to being in charge of a person's health care. After some research, I have found a report by a respected expert in radiology and he sites the frequency of AVN in the US to be 35-40% in steroid related cases. Here is a link to that report:
http://www.emedicine.com/RADIO/topic70.htm
I don't consider that rare, and I think that because steroids are so widely used in this country, people should be made aware of this risk. At the very least, a patient should be given the CHOICE to take on that risk. I think this is an important conversation and I would rather help someone than try to suppress information. We were blindsided by this and I don't want others to have to go through what we are going through.
20 yo daughter w/ Pancolitis
diagnosed 8/30/06
Step 1 colectomy/jpouch creation 11/27/06
Step 2 takedown 2/9/07
****************
VSL #3 DS
21 yo Daughter diagnosed with right shoulder,
bilateral elbow, bilateral knee, and bilateral ankle AVN
 


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 6/11/2008 7:04 AM (GMT -7)   
Buck thank you for sharing this information. I actually am seeing my Rheumy next week and had planned to ask her for a MRI for my hips and spine, because they hurt so much. They recently did a MRI on my knee and I ended up having to have a scope done on my knee because I had so much more wear on my knee than someone my age should have that it shredded the medial cartilage in my knee. Since seeing how much damage was done to my knees, I want to know what the rest of me looks like. Hopefully she will agree. I have lived with IBD for almost 33 years and have taken alot of steroids in my time. Could be just osteoarthritis, but I would rather be safe than sorry.
Been living with Crohn's Disease for 32 years.  Currently on Asacol, Prilosec 60 mg, Estrace, Prinivil, Diltiazem, Percoset prn for pain and Calcium.  Resections in 2002 and 2005.  Recently diagnosed with Fibromyalgia and doing tests to see if I have Inflammatory Arthritis or AS.


Buckeyeinfl
Regular Member


Date Joined Oct 2006
Total Posts : 114
   Posted 6/11/2008 7:13 AM (GMT -7)   
Nanners,
"Could be just osteoarthritis, but I would rather be safe than sorry." ABSOLUTELY! I wish you luck and I hope that your tests come out well. We were lucky in that my daughter's Rheumy also took the better safe than sorry stance and if you catch AVN early, there is treatment available. We are so very lucky to have found the AVN specialist in Maryland and I'm hopeful that my daughter's condition was found early enough to prevent the collapse of her bone. It's a devastating thing to be facing at any age, but even moreso at 21 years old.
20 yo daughter w/ Pancolitis
diagnosed 8/30/06
Step 1 colectomy/jpouch creation 11/27/06
Step 2 takedown 2/9/07
****************
VSL #3 DS
21 yo Daughter diagnosed with right shoulder,
bilateral elbow, bilateral knee, and bilateral ankle AVN
 


MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 6/11/2008 7:45 AM (GMT -7)   
In all honesty, I am shocked people do not know about this. It is something you need to get checked out if you have pain, but it is not the norm with steroids. However, joint pain is normal with crohns, so it is hard to tell.

That "safe rather then sorry" stance is just good medical vigilance.

I almost like to know what hospital that your daughter was in that they did not tell her about this. It is against the rules to say it because it could be flaming.

As with any medication you need to read the info that comes with it and research side effects (use the PDR for example), AVN is listed as a possible side effect in my PDR. Plus there are several free info sites as well, but I do not think there are as detailed.
Forum Co-moderator - Crohn's Disease
We will find a way, or make one.-Hannibal (crossing the Alps in the 15th Century on war elephants) 
Make sure your suffering has meaning...-?
All suggestions/options/opinions are caveated with please consult with your local health care provider...


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 6/11/2008 7:54 AM (GMT -7)   
I personally don't think I have AVN, but I do want to be sure that something worse than osteoarthritis is not going on. I am a little concerned in my case because of how much wear I have just in my knees alone. I just turned 50 and the osteo said my knees were worn much more than someone my age should be. Like 15 years more than they should be. So I am asking for a MRI on my hips and low back, because xrays just don't show enough. I had been complaining about knee pain for years and they always just took xrays and said they were normal. But the whole time alot of damage to my cartilage was done. I will eventually have to have a total knee replacement.
Been living with Crohn's Disease for 32 years.  Currently on Asacol, Prilosec 60 mg, Estrace, Prinivil, Diltiazem, Percoset prn for pain and Calcium.  Resections in 2002 and 2005.  Recently diagnosed with Fibromyalgia and doing tests to see if I have Inflammatory Arthritis or AS.


Buckeyeinfl
Regular Member


Date Joined Oct 2006
Total Posts : 114
   Posted 6/11/2008 8:05 AM (GMT -7)   
MMM,
Not the norm? From my above post....This is a 2007 report: "After some research, I have found a report by a respected expert in radiology and he sites the frequency of AVN in the US to be 35-40% in steroid related cases. Here is a link to that report:
http://www.emedicine.com/RADIO/topic70.htm"

After combing her medical records and comparing that with the "standard of care," all of the dosages and time frames were followed typical to her condition, so nothing was out of line. That's why this is so upsetting.

When she was first diagnosed, I digested all of the product monograph information and osteoporosis is disclosed, as is "joint damage," but decided we could push the vitamins. Nothing said "bone death." I even went to the pharmacy and requested another monograph after she was diagnosed thinking I may have missed something. Then I did a search online just searching for prednisone and the list of side affects about bone damage is veiled and vague. I have a neighbor who's a nursing student, and she too did a search and found nothing until she looked in her nursing textbooks. As a newly diagnosed person with IBD, the information is not there until you dig deep for it. I think it should be clear and not buried in the information handed out...that's all I'm saying.
20 yo daughter w/ Pancolitis
diagnosed 8/30/06
Step 1 colectomy/jpouch creation 11/27/06
Step 2 takedown 2/9/07
****************
VSL #3 DS
21 yo Daughter diagnosed with right shoulder,
bilateral elbow, bilateral knee, and bilateral ankle AVN
 


sparkles254
Regular Member


Date Joined Jan 2008
Total Posts : 28
   Posted 6/11/2008 8:59 AM (GMT -7)   
I just went to see my GP Monday becasue of SEVERE joint pains. Especailly in my knees, fingers, toes, and shoulders. He put me on pred for the pain. He says it is some type of Arthuritis from my remicade. I have been trying to get in touch with my GI but still no call backs. This pain is HORRIBLE!! Im only 23 myself. Sorry to hear about your daughter!!!

Rider Fan
Veteran Member


Date Joined May 2008
Total Posts : 1445
   Posted 6/11/2008 9:02 AM (GMT -7)   
I think you may be reading that statement incorrectly. That doesn't mean that steroids cause AVN 40% of the time. The report states that there are 15,000 cases of AVN in the US every year. 40% are caused by steroids which means that steroids causes an estimated 6,000 cases of AVN per year.
Dx'ed in 1999. No surgeries.

Current meds: 75 mg 6MP. 20mg prednisone.


Celey
Veteran Member


Date Joined May 2007
Total Posts : 1284
   Posted 6/11/2008 9:58 AM (GMT -7)   
You are reading the report incorrectly... if you read further on down, it says something about how 5-25% of people who use steroids end up with AVN.... (Not those exact words, but that's what it says). That's not too bad... If you take the highest percentage... 25%... that's 1 in 4 people who use steroids that end up having osteonecrosis.

Still... this whole thing has me all concerned again...

The MRI they did on me... I mean... when they do an MRI, it scans the entire body, right? Or do they just scan specific parts?

I mean... If they only scanned my back... and they're only looking at my back... then, how would I know whether or not I have AVN? *Does anyone know more about how they do MRIs and everything? I'm confused and worried, now... :(....*

I've been on prednisone for a long time.... :(... Way longer than 4 months....
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.


MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 6/11/2008 11:27 AM (GMT -7)   
I only have a few minutes, but you should think about have every part that hurts be examined by an MRI (it only scans the area it goes over, plus especially if you are female to have a dexa scan done just to establish a base line if nothing else. This is not an emergency, and I want to remind you joint pain is normal with crohns. I will write more later. But please take it easy.
Later,
Navy
P.S. I did not get a chance to read the entire story, but we need to wait to really concerned here.
I have also been on high doses of steriods for a long period of time.
Plus being surgerically rebuild doesn't help.

This is about being vigilant and taking care of yourself.
Forum Co-moderator - Crohn's Disease
We will find a way, or make one.-Hannibal (crossing the Alps in the 15th Century on war elephants) 
Make sure your suffering has meaning...-?
All suggestions/options/opinions are caveated with please consult with your local health care provider...


Rider Fan
Veteran Member


Date Joined May 2008
Total Posts : 1445
   Posted 6/11/2008 11:34 AM (GMT -7)   
It certainly does not say that 1 in 4 people who use steroids get AVN. The exact words are:

"The risk is 5-25% in patients using high doses of steroids over a long term."

It doesn't define high dose or long term, and 5 to 25% is a huge variation.
Dx'ed in 1999. No surgeries.

Current meds: 75 mg 6MP. 20mg prednisone.


Jen77
Veteran Member


Date Joined Mar 2006
Total Posts : 2691
   Posted 6/11/2008 12:43 PM (GMT -7)   
Rider Fan said...
It certainly does not say that 1 in 4 people who use steroids get AVN. The exact words are:

"The risk is 5-25% in patients using high doses of steroids over a long term."

It doesn't define high dose or long term, and 5 to 25% is a huge variation.

I agree, and considering the huge number of people who take steriods for various reasons, that is still considered pretty rare IMO.
 
It is good to be knowledable though on these things, but it's not healthy to scare yourself about everything that could happen. Especially with Crohn's already coming with joint problems in and of itself. Good info to keep in mind, but I'm not going to panic over it. Prednisone has been a life saver for me with this past flare, I was becoming very ill. I'm down to 25 mg, getting ready to taper to 20 mg on Sunday, and I've really tolerated it quite well. It's not a fun drug to be on, and we really do have to look at all the risks. But the more rarer ones I'm not going to stress on, even if I'm glad to know to keep an eye out for them.


~Jennifer
 
Diagnosed with Crohn's Disease 2/06 after sever GI bleed. Has been suffering since 1998. History of rectal fistula and gallbladder removal. Currently taking Prednisone: tapered to 30 mg, Asacol, Questran, Toprol XL (for high blood pressure).

Post Edited (Jen77) : 6/11/2008 1:47:29 PM (GMT-6)


Celey
Veteran Member


Date Joined May 2007
Total Posts : 1284
   Posted 6/11/2008 12:51 PM (GMT -7)   
Yeah. 25% is 1/4... So...
 
Of course... 5% is considerably less than that, so if that's the risk, then there isn't too much to worry about. But 25%... That's a bit more worrisome. Not as worrisome as 40% would be, but still...
 
Also, it does define high-dose at some point in the article (It defines high dose as being greater than or equal to 20 mg), but it does not define what long-term use of steroids is that I have read. Obviously, it doesn't have to be that long... since Buck's daughter has avascular necrosis from just 4 months of steroid use.
 
20 mg of steroids has been the norm for me... And right now, I'm only just now tapering from 40 mg of steroids...
 
I've been on prednisone at varying doses (usually 20 mg, but I've been on as high as 60 mg (very short period of time), and I've taken liquid prednisone through IV before) pretty much since I've been diagnosed... which was in November 2006. Man, it is June 2008. :(... And I do have joint pain... especially in my hips... (I've had the hip pain for a pretty good while, too...)
 
*I'm trying not to worry too much... Maybe all this joint pain is just a side effect from my medication... and also... there's that bulging disc thing... and a bulging disc isn't all that serious. At least, mine's not... according to the ER physician...*
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.


JerryGarcia
Regular Member


Date Joined Feb 2008
Total Posts : 68
   Posted 6/11/2008 3:07 PM (GMT -7)   
I'm from the UC board but would like to add my short story: 2 courses of pred (40mg weekly taper) and recently diagnosed with AVN in both hips....
DX with UC Jan 07
Currently taking Colazide (allergic to Asacol and Pentasa) 6 a day
Also taking VSL3 X1 a day

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