Remicade and JOINT PAIN

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bella_sky
Regular Member


Date Joined Aug 2009
Total Posts : 90
   Posted 11/2/2009 4:21 PM (GMT -7)   
Had my 3rd infusion last Tuesday, each infusion seems to make the joint pain progressively worse. I ended up in the ER Tuesday night with so much pain I couldnt think and they gave me a few Dilaudid to tie me over. Since then I've been struggling with gettingout of bed, etc etc. And the Crohns pain is coming back, losing control of my bowels again. VIEW IMAGE ***?!?!? The State and govt dont even want to interview me for disability. I cant work more than a few hours a day, and when I do that, I come home and cant move for HOURS until the pain gets better. I'm sorry if it sounds like I'm whining, VIEW IMAGE I'm just lost.

The ER did an X-ray to see if I have Akolysing Spondilitis (Sp?) and I just picked them up today from the hospital to overnight to my Hopkins doc for tomorrow. If I dont have this, idk where to turn... Should I see a rheumatologist, a pain management person, or just wait for the GI to help? My PCP doesnt want to interfere with the GI care so he doesnt want to talk to me. I've started taking Calcium and Vitamin D supplements incase that was the root of the pain but its not working and I'm running out of pain pills to keep me functioning. VIEW IMAGE

I'm sorry this is long, thanks for any advice on a direction to go in you may have.
24 female, dx w/CD finally in July 2009, currently taking remicade, prednisone to counteract side-effects of remicade, pentasa, cipro, flagyl, probiotics, celexa, bentyl, and biofeedback.
 
"It is not the strongest of the species that survives, nor the most intelligent that survives. It is the one that is the most adaptable to change" Charles Darwin


PV
Veteran Member


Date Joined May 2006
Total Posts : 1177
   Posted 11/2/2009 5:03 PM (GMT -7)   
I'm so sorry bella_sky that you are going through such a rough time. Did they give you any steroids as pre-meds before the infusion? It sounds like you're having a pretty strong reaction. My husband gets steroids before the infusion, and also tylenol and benedryl, and he does get a high fever, and some joint pain etc that lasts about a day. And it goes away after that on it's own. But it sounds like your reaction has been going on for a week now . . . which is not good. I think perhaps you have developed antibodies to remicade - and you're having serum sickness. I think your GI will probably stop the remicade if this is the case. I think there's a test to see if you have developed antibodies to remicade by Prometheus labs . . . I think you should talk to your GI asap and get that test in process.

I think it's time to see your GI and discuss other alternatives . . . I think given that you aren't functional after remicade, that most likely you have to move on to something else. Perhaps Humira or Cimzia. Maybe he can bump up your steroids until you see some effects from the other drugs. Maybe he can also start you on 6-mp, Imuran or Methotrexate at the same time, so that even if Humira or Cimzia don't work, you can eventually wean off the steroids if say 6-mp works.

I think you should start with your GI, get his advice and go from there. Are you taking any vitamin B supplements . . . that can help with the fatigue I think.

(((Hugs))). I hope you talk to your GI soon and get some much needed help.

PV
Husband with Crohn's
Diagnosed March 2003 Ulcerative Proctitis
Diagnosed March 2008 Crohn's & C-diff, hospitalized 45 days
Canasa, Lialda, Remicade, VSL#3, Florastor
In Remission since June 2008
Stopped vancomycin for c-diff Jan 1 2009
C-diff free, until Sep 2, 2009
Fighting c-diff, I guess for life


bella_sky
Regular Member


Date Joined Aug 2009
Total Posts : 90
   Posted 11/2/2009 5:18 PM (GMT -7)   
Actually she did put me on 40mg of Prednisone a day, thx so much PV for the advice on getting the antibody test, I look forward to calling tomorrow and asking about those other drugs too! Gosh they made me feel like Remicade is like the last thing to do b4 surgery but since there are more its not as scary now!!
24 female, dx w/CD finally in July 2009, currently taking remicade, prednisone to counteract side-effects of remicade, pentasa, cipro, flagyl, probiotics, celexa, bentyl, and biofeedback.
 
"It is not the strongest of the species that survives, nor the most intelligent that survives. It is the one that is the most adaptable to change" Charles Darwin


bella_sky
Regular Member


Date Joined Aug 2009
Total Posts : 90
   Posted 11/5/2009 3:11 PM (GMT -7)   
Thanks for the advice My joint pain is so excruciating now I'm constantly crying and had to get my mom involved, she's much more able to express how bad I am to get someone to do something here. They came to the conclusion I do not have Ankolysing Spondilitis but more tests need ran b/c there is definitely something there. It feels like icepicks in my lower back and hips!!! I'm looking to hear from a Rheum doc today to get an appt setup. I'm going to start downing wine shortly to help dull the pain, its so unbearable!! How do you all deal with this pain?!?!
24 female, dx w/CD finally in July 2009, currently taking remicade, prednisone to counteract side-effects of remicade, pentasa, cipro, flagyl, probiotics, celexa, bentyl, and biofeedback.
 
"It is not the strongest of the species that survives, nor the most intelligent that survives. It is the one that is the most adaptable to change" Charles Darwin


dcham1
New Member


Date Joined Jul 2009
Total Posts : 11
   Posted 11/5/2009 3:33 PM (GMT -7)   
I have been off of Remicade for 2 years now (because I developed severe reactions from this drug) and I have permanent swelling in my right ankle and left knee. I have trouble walking any distances. The remicade did not do anything to put my crohns in a remission status, but made it worse.
Contact your senators and congressmen to support ANY IBD legislation. We need all the help we can get to combat this disease.


PV
Veteran Member


Date Joined May 2006
Total Posts : 1177
   Posted 11/5/2009 4:07 PM (GMT -7)   
Hey, seems we're kinda in the same boat now. My husband over the past week has developed severe inflammation in his knees and his SI joint in the back, and his neck is really stiff too. He also started running a fever, and his knee was so filled with fluid, he had zero movement in that joint, and was very stiff and sore.

This all started about 3 weeks after his last remicade infusion. He doesn't have any other signs of an infection that can be causing the fever. The GI ordered a ESR, CRP and ANA and Antihistone Antibody test (these last 2 are to check for lupus). We got back the results of the ESR and CRP, and sure enough they are very elevated. In the meantime, I've had to take my husband to the ER to have his knee drained (they got 60cc of fluid out). This morning he went back to the orthopedic guy, and got 80ccs of fluid pulled out, and also injected with hydrocortisone. He is now on 10mgs of prednisone to help with the other joints. He is also on Flexeril (muscle relaxant) and lortab 7.5 mgs for the pain. They also tested the fluid, and said that it was inflammatory in nature, not infectious.

So, now we're left wondering what is going on!! He was fine, and now he can barely hobble with a cane, is running a fever! All within a week. I am thinking that he is having serum sickness, except he doesn't have a rash (serum sickness normally has fever, joint pain/swelling, and a rash), and usually begins between 1-21 days post exposure, which would kinda sorta match up with what's going on with him.

I'm praying he doesn't have drug induced lupus, because that would likely mean that he cannot take anti-tnf agents at all (because they are all the same class drugs). He now has an appt with a rheumy tomorrow afternoon. I guess she'll order more tests, and we'll wait more for answers :-) Hurry up and wait. I hope we get some answers soon. And I hope you do too.

PV
Husband with Crohn's
Diagnosed March 2003 Ulcerative Proctitis
Diagnosed March 2008 Crohn's & C-diff, hospitalized 45 days
Canasa, Lialda, Remicade, VSL#3, Florastor
In Remission since June 2008
Stopped vancomycin for c-diff Jan 1 2009
C-diff free, until Sep 2, 2009
Fighting c-diff, I guess for life


Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5854
   Posted 11/6/2009 7:06 PM (GMT -7)   
     WOW...this is a scary read for me!  My GI doctor has been pushing Remicade for two years but I have been procrastinating.  He pushed 6MP too and I went on that seven years ago.  I stopped it yesterday because it is doing absolutely nothing.  I have ulcerative proctitis and can't live with this pain anymore.  I had my PPD test today but the doctor put me back on 30 mgm of prednisone (after only being off it for two months) to avoid hospitalization.
 
Diagnosed with ulcerative proctitis in 1998 in hospital
Hospitalized (2nd time) in May 2008 for ten days.
Remission Nov 08 thru May of 09.
Slowly coming out of flare.  Meds: Colazal (6 per day), prednisone 10 mgm and tapering weekly, Cort enema nightly, Canasa in morning, Benicar 20 mg for BP, flaxseed oil 3 x a day, fishoil 2 x a day, probiotic 3 x a day, calcium with D 1x a day and multivitamin.
Doctor had me on 100 mgm of 6MP which drastically lowered my white count.  Now off the 6MP pending results of repeat white count. UGH.


bella_sky
Regular Member


Date Joined Aug 2009
Total Posts : 90
   Posted 11/9/2009 7:54 PM (GMT -7)   
Please dont be discouraged by Remicade from our experiences, I've always been a prodigy and not the norm with stuff so do NOT take my experience as something normal. There is nothing to ensure at this point that its Crohns or Remicade indirectly causing something serious with my back, I'll let you helpful people know as soon as I do, which may be a week or two. Thx again for listening :) Hope all is well!
24 female, dx w/CD finally in July 2009, currently taking remicade, prednisone to counteract side-effects of remicade, pentasa, cipro, flagyl, probiotics, celexa, bentyl, and biofeedback.
 
"It is not the strongest of the species that survives, nor the most intelligent that survives. It is the one that is the most adaptable to change" Charles Darwin


sickofitall
Regular Member


Date Joined May 2009
Total Posts : 250
   Posted 11/10/2009 9:38 PM (GMT -7)   
I have also had severe hip and leg pain. Mine started with prednisone (I'm off now) and then gets worse with every remicade infusion. I just had my 5th infusion. I'm seeing a Rheumatologist who is suggesting crohns myopathy? But he's running tests to make sure. I've never heard of this and can't really find anything on the internet about it. GI says if it continues we'll try 6mp. My pain is like sudden jolts of electricity. I literally jump out of my chair when it happens. Also have deterioration of the leg muscles and spasms. Before I started pred. six months ago, I never had one leg pain..... its just weird. idk?
Current meds:  Remicade and probiotics
Tried:  Prednisone, lialda, antibiotics all failed attempts.
 


Trigirl
Veteran Member


Date Joined Jan 2006
Total Posts : 768
   Posted 11/10/2009 10:10 PM (GMT -7)   
I had the same symtoms that turned into an allergic reaction to Remicade. After third month I hurt soooo bad I couldn't walk up the stairs or open a jar, ect. Then I got spots that signaled bad news. Felt better within weeks of getting off it. Works great for some people though.
This heights by great men reached and kept, were not obtained by sudden flight, but they while their companions slept, were toiling upward in the night.
H.W. Longfellow
Thyroid cancer removed 1988
Stomach problems finally figured out 2001 Crohn's/Colitus
Tried every drug without much success
Colon/rectal cancer removed Aug 2009
Trying


PV
Veteran Member


Date Joined May 2006
Total Posts : 1177
   Posted 11/11/2009 7:40 AM (GMT -7)   
Did any of you have extensive swelling when you had these reactions? My husband doesn't seem to have the "normal" remicade allergic reaction of joint pain alone - he's got joint pain and lots of swelling. I am wondering if any of you others who are having some problems with remicade, have experienced joint swelling. My husband has lots of fluid in the knee.

Thanks for your help.
PV
Husband with Crohn's
Diagnosed March 2003 Ulcerative Proctitis
Diagnosed March 2008 Crohn's & C-diff, hospitalized 45 days
Canasa, Lialda, Remicade, VSL#3, Florastor
In Remission since June 2008
Stopped vancomycin for c-diff Jan 1 2009
C-diff free, until Sep 2, 2009
Fighting c-diff, I guess for life


bella_sky
Regular Member


Date Joined Aug 2009
Total Posts : 90
   Posted 11/11/2009 5:59 PM (GMT -7)   
I dont have any swelling. But i just got back from an urgent care facility who ordered a MRI for me friday morning of my SI joint and sacrum, I'll let you know how it turns out when I found out where all this pain is coming from. Luckily I am now loaded with Vicodin to last me :)
24 female, dx w/CD finally in July 2009, currently taking remicade, prednisone to counteract side-effects of remicade, pentasa, cipro, flagyl, probiotics, celexa, bentyl, and biofeedback.
 
"It is not the strongest of the species that survives, nor the most intelligent that survives. It is the one that is the most adaptable to change" Charles Darwin


PV
Veteran Member


Date Joined May 2006
Total Posts : 1177
   Posted 11/11/2009 6:10 PM (GMT -7)   
Oh, good. Pain management is so critical, and doctors are so matter of fact, they forget we feel pain. I'm glad you have something to help you get through it until you have answers and some treatment that works.

I hope you get some relief soon.

(((Hugs))).

PV
Husband with Crohn's
Diagnosed March 2003 Ulcerative Proctitis
Diagnosed March 2008 Crohn's & C-diff, hospitalized 45 days
Canasa, Lialda, Remicade, VSL#3, Florastor
In Remission since June 2008
Stopped vancomycin for c-diff Jan 1 2009
C-diff free, until Sep 2, 2009
Fighting c-diff, I guess for life


poohbear37
Regular Member


Date Joined Feb 2007
Total Posts : 98
   Posted 11/11/2009 6:43 PM (GMT -7)   
you see see a rheumatologist, but it sounds like what happened to me on remicade...a lupus-like reaction...it was so painful, i would cry, my fingers hurt my ankles hurt...oh god...going off the remicade was the best decision i made!
Crohn's Disease - re-diagnosed June 2009
Ulcerative Colitis - diagnosed in 2000

26 years old/female
Asacol, Cymbalta, Nexium, Cimzia

Bad reactions to: remicade, lialda & 6mp


Sunaddict
Regular Member


Date Joined Jun 2009
Total Posts : 354
   Posted 11/11/2009 8:12 PM (GMT -7)   
bella_sky,
Hi seems like you've got a lot of feed back. I am terribly sorry your going through this. I went through the same thing about 6 months into the remicade treatment. I went crippled for the next 8 months. Luckly for me the doc had already put me on medical leave (which the gov believed I wasn't sick enough for, so for 2 years I haven't received an income) I kept saying to myself, if I just get the treatment closer together I wouldn't suffer with joint pain, well the more I got (I went to every 4 weeks) the worse it got. Finally I told the doc it was enough, after a lot of research on here, and from nice people replying back, found out I probably had to much antibodies, the doc never even checked she just took me off, put me back on Imuran about 1 week later I was crippled free, now I am on humira since July. And I work out,jog, and looking for work. It also put my crohn's into remission!!
I suggest you talk to your doc about imuran with remicade, and or switching to humira (but also taking imuran) if I skip 2 days of humira joint pain come back.
I hope you sort this out all will quick, your in my prayer's.
Tracy from Montreal,Diagnosed with CD at age 18 but went undiagnosed for 10 years. 17 years with CD, Remicade for 1 year 4 months. Caused remi induced RA, crippled for 8 months
on humira, working for RA but CD is getting worse everyday,been on humira only 4 weeks
Pantasa 8 tabs a day
Provacede 1 daily for the ulcer's
Imuran 1 and half tabs (50mg)
Previous meds: Pantoloc, Predizone, tapered down from 10 pills 8 different times.(horrible side effects),Lots more,list is way to long.
Unable to work last 2 years and counting.Scope says I'm clear of CD,waiting for biopsie. May have Endometrioses, again waiting for another apt.


bella_sky
Regular Member


Date Joined Aug 2009
Total Posts : 90
   Posted 11/14/2009 11:18 AM (GMT -7)   
I have a tumor in my spine. They need to biopsy, next appt is Wed so will keep you all posted. As of right now it seems though that this may be completely unrelated to Crohns and/or Remicade treatments, just bad timing I guess. Thanks for the support and I guess never rule out that the joint pain might be completely unrelated...
24 female, dx w/CD finally in July 2009, currently taking remicade, prednisone to counteract side-effects of remicade, pentasa, cipro, flagyl, probiotics, celexa, bentyl, and biofeedback.
 
"It is not the strongest of the species that survives, nor the most intelligent that survives. It is the one that is the most adaptable to change" Charles Darwin


PV
Veteran Member


Date Joined May 2006
Total Posts : 1177
   Posted 11/14/2009 11:23 AM (GMT -7)   
Oh, sorry about the tumor! But good to know it isn't the crohn's or the remicade. Hopefully it's pretty benign, and they can treat it without serious surgery. I'm glad you have an answer and that you're closer to a resolution. I hope you get good news on the biopsy. Do keep us posted.

((Hugs))
PV
Husband with Crohn's
Diagnosed March 2003 Ulcerative Proctitis
Diagnosed March 2008 Crohn's & C-diff, hospitalized 45 days
Canasa, Lialda, Remicade, VSL#3, Florastor
In Remission since June 2008
Stopped vancomycin for c-diff Jan 1 2009
C-diff free, until Sep 2, 2009
Fighting c-diff, I guess for life


bella_sky
Regular Member


Date Joined Aug 2009
Total Posts : 90
   Posted 11/17/2009 3:04 PM (GMT -7)   
tumor is size of golfball in my spine. and non crohns, non remicade related probably so i prolly shouldnt post here. but i'm a little scared. biopsy tomorrow, 1 inch incision right above my butt crack... cant believe this all happening same year as crohns dx. so glad i can eat oreos again without paying for it so much anymore. still cant eat most foods but oreos make me happy and i need to gain weight back. ugh. please learn from me -- dont overestimate emergency rooms, and please do insist on MRI.
24 female, dx w/CD finally in July 2009, currently taking remicade, prednisone to counteract side-effects of remicade, pentasa, cipro, flagyl, probiotics, celexa, bentyl, and biofeedback.
 
"It is not the strongest of the species that survives, nor the most intelligent that survives. It is the one that is the most adaptable to change" Charles Darwin


PV
Veteran Member


Date Joined May 2006
Total Posts : 1177
   Posted 11/17/2009 3:45 PM (GMT -7)   
Hi bella_sky. Please do continue to post here - we want to be here for you. Sometimes when it rains it pours . . . it always seems that way to me. Earlier this year, I had to take my diabetic dad to the ER in a complete panic - he was nearly comatose, and I couldn't revive him, with the shot, or glucose . . . it was crazy. Then, my hubby got c-diff again, and now this blasted arthritis . . . always one thing or another. Can't really rail against it, it does no good . . . just roll with the punches, that's the only way to go.

I can totally understand you being scared. Just take deep breaths every time you get anxious about it, and remember that it is necessary to do this in order to get better (the kind cruelty of the surgeon's knife sort of necessary). Hang in there sweetie. Tough times usually do peter out eventually . . . and you will catch a break. Just keep your head down, and keep chugging until you feel the break in the weather. It will come sooner hopefully rather than later.

(((Hugs)))
PV
Husband with Crohn's
Diagnosed March 2003 Ulcerative Proctitis
Diagnosed March 2008 Crohn's & C-diff, hospitalized 45 days
Canasa, Lialda, Remicade, VSL#3, Florastor
In Remission since June 2008
Stopped vancomycin for c-diff Jan 1 2009
C-diff free, until Sep 2, 2009
Fighting c-diff, I guess for life


sparkles254
Regular Member


Date Joined Jan 2008
Total Posts : 28
   Posted 11/18/2009 5:34 PM (GMT -7)   
The remicade did put my Crohns into remission for almost a year then I started having bad reactions to it. My fingers and toes started to swell and ALL my joints were in HORRIBLE pain. I couldnt MOVE at all. I was finally pulled off the remicade and put on a LONG stent of pred and then weaned off that and was put on Humera and once again I am all better.

PV
Veteran Member


Date Joined May 2006
Total Posts : 1177
   Posted 11/18/2009 6:26 PM (GMT -7)   
Sparkles, I have a question about your remicade reaction. How soon after the infusion did you experience the swelling and joint pain?

My husband started having joint pain and lots of swelling about 3.5 weeks after a remicade infusion. The docs pretty much discount that it's a remicade reaction because of the 3.5 weeks before the onset of symptoms. They believe he is having IBD related arthritis, or reactive arthritis. I agree that it is probably a long shot that it is remicade. But still, I am curious about how soon after the infusion you experienced joint pain and swelling.

Thanks,
PV
Husband with Crohn's
Diagnosed March 2003 Ulcerative Proctitis
Diagnosed March 2008 Crohn's & C-diff, hospitalized 45 days
Canasa, Lialda, Remicade, VSL#3, Florastor
In Remission since June 2008
Stopped vancomycin for c-diff Jan 1 2009
C-diff free, until Sep 2, 2009
Fighting c-diff, I guess for life


indigosunrise
Regular Member


Date Joined Nov 2007
Total Posts : 497
   Posted 11/19/2009 1:20 PM (GMT -7)   
Hi Bella,
 
Please keep us updated on your condition! 
 
I have been on Remicade for about a year now and it has helped me out a whole lot.  I wish it could help everyone out! 
 
Take care and I will keep you in my prayers.

bella_sky
Regular Member


Date Joined Aug 2009
Total Posts : 90
   Posted 11/21/2009 11:25 AM (GMT -7)   
Well I'm still in a ton of pain and an invalid at my parents house. Struggling, well getting grumpy, about being taken care of 24/7 because I've been doing things on my own with Crohns, but this pain is so bad sometimes I am just too scared to be alone at all. Its so sharp and piercing. Anyways, they hope to know what the tumor is soon, lucky for me its rare to have one this big, shaped the way it is and located where it is so its raising the bigtime surgeons eyebrows in such a young lady :) I guess
 
I dont think its cancer b/c wouldnt someone have caught all that by now with all the Crohns and all??? Ugh I just hope they can get this tumor out and do it soon because I hate counting down the clock til next time for Vicodin. Thanks for still being okay with me posting on here I feel so lost. You guys are amazingly strong people, and I need to be feeding off that right now thats for sure. And hope that all these NSAIDs and Vicodin dont bring the Crohns back.
 
Still deciding if I'm going to switch to Humira or keep using the Remicade - next infusion was sched for end of December, cuz it really is working for the Crohns. And I'm still losing weight even tho I feel tons better considering, down to 108 lbs now, they say its good for the tumor because there is literally like no fat surrounding the area.
 
Thanks for keeping me in your thoughts and prayers loves, you all are in mine as well ((((HUGS)))))
24 female, dx w/CD finally in July 2009, currently taking remicade, prednisone to counteract side-effects of remicade, pentasa, cipro, flagyl, probiotics, celexa, bentyl, and biofeedback.
 
"It is not the strongest of the species that survives, nor the most intelligent that survives. It is the one that is the most adaptable to change" Charles Darwin


mls
New Member


Date Joined Jun 2010
Total Posts : 2
   Posted 6/7/2010 7:25 AM (GMT -7)   
I take 7mg every 4wks for over a year for PA. At first it was great. Cleared me 95%. Then it gradually stopped working and now I'm back almost where I started with the PA so I went off it. I'm just past week 4 and experiencing HORRIBLE joint pain in my neck, coller bones, shoulder, elbows, wrists, hands, knees and hip. It gets worse in the evening. I woke with pain all night. I need to know - Does the joint pain go away after awhile of not taking remicade? My Rhumi wants me to take Stelara, anyone having these reactions to remicade go on stelara with successful results? Will stelara make my joint pain go away and control my PA? I am just worried that I am opening another can of worms with the stelara and maybe I should just grin and bear my PA. I know I'm full of questions but if you weren't here sharing I'd not even know what questions to ask.

pradalover345
New Member


Date Joined Aug 2013
Total Posts : 2
   Posted 8/23/2013 11:44 PM (GMT -7)   
Hi everyone,
 
I have been on Remicade since 2011 following and intestinal resection for Crohns complications which finally led to an accurate diagnosis. wink So I have read a lot of posts on here of people who have experienced the severe joint pain after getting the Remicade infusions and I usually spend about three days post infusion feeling like I've been hit by a bus, but then it gets better and I'm good to go again. My question is this, has anyone else experienced severe joint pain in between infusions? The last several times I have started having it REALLY bad about two weeks before I am due for my next dose. I let my GI know and he said that I was developing Rheumatoid arthritis, which can be expected since it's another autoimmune disease. OK that seemed to make sense so we just made the appointments closer together since Remicade treats both diseases and that way I could get my next treatment before the pain started. It worked well and my Crohns was all but in remission, then I moved out of state and had to get a new Dr. she ran some tests and says my Rheumatoid ANA tests are neg. so now... I am wondering if the pain could be from the remicade itself since I also feel it right after getting the infusions too? Anyone else have this happen?
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