Remicade: treatment before or after delivery?

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Chasity102304
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Date Joined Nov 2007
Total Posts : 165
   Posted 8/26/2008 5:29 AM (GMT -7)   
So as most of you know from previous posts, I am expecting my second daughter in a few weeks. I have continued on remicade throughout the pregnancy and I am currently 37 weeks. My next scheduled treatment would be Sept 9 (8 weeks) and my official due date is Sept 15. I scheduled the next treatment for Sept 11 (didn't think pushing it back 2 days would be that big of a deal) so that I could give myself and baby a few more days. At this point I'm not really sure where I got confused but I did because I thought my GI said he didn't want me to have a treatment until AFTER she is born and my OB/GYN agreed. We had tentatively set an induction date for Sept 9 so that I could be out of the hospital to get my treatment (I take treatments at a different location and can't switch it because of insurance reasons) on the 11th. BUT last Thursday I saw my GI for first time in a few months and he said he wants me to have a treatment RIGHT BEFORE delivery so that the med is as heavy in my system as possible in case of a flare up. I put in a call to my OB/GYN yesterday to see what his thoughts are...I go back to see him for my weekly check up on Thursday so we'll see what he says. Somewhere I got confused (possibly from Crohn's and pregnancy HAZE..HA HA!!) but I know that ONE of them said they didn't want me to have a treatment that close before delivery.
 
I know there are lots of varying opinions out there about remicade and pregnancy, it's affect on the baby and if/when it crosses the placenta. Both my OB and GI have said in the past that if it was going to affect the baby it would have done it in the first 12 weeks and she shows no signs of issues thus far. I'm curious what others experiences are and any advice anyone might have at this point.
 
I trust my GI and he has been wonderful over the past 4 years, but I also trust my OB who has been great as well. In the end I know I will do what I feel is best for the baby after hearing what both have to say this week, but I am nervous to say the least. This is the first time during my pregnancy that I have been this worried that I might get really sick after delivery if I don't get the treatment before. Will a few days make that big of a difference? Will not having the med in my system AT delivery make that much a difference? Does a flare come on immediately or take awhile to set in after the hormone shift for most women?
 
Thanks in advance for all your help and advice!
Fibromyalgia DX March 2003
Crohn's DX Jan 2006 (Symptoms since 96-Misdiagnosed as "female" problems-Major flare during pregnancy in 05 which lead to DX)
1st resection July 2007
Currently on Remicade/8 weeks


Sarah1116
Regular Member


Date Joined Nov 2004
Total Posts : 55
   Posted 8/26/2008 7:11 AM (GMT -7)   
I was not on remicade during my pregnancy, my GI took me off it until I was done breastfeeding.  However, I can tell you I had my son at 8:10 in the morning and by 10:00 that night I was in a full blown flare.  I felt great during my pregnancy, with very little problems during the different hormane changes throughout it.  But after he was born it was awful.  I was in the bathroom all night with horrible D.  If having the infusion right before will help prevent a flare after I would do it, why take the chance that you will be in the bathroom or feeling terrible insead of enjoying your very special time with you new baby.  Does you OB have any other patients that have Crohn's disease?  My had one other patient with it and let the GI help guide them through what ever happened during my pregnancy and after and just double checked to make sure that what the GI said to do/take was not going to effect the baby.  I wish I had been on remicade during my pregnancy because being off it for so long, it no longer works.  I would listen to what each doctor says and their reasons for what they want you to do, but you said it yourself that in the end you will do what you think is right for you and your baby.  Good luck.  
Sarah
Diagnosed Sept. 2004 (two weeks before my wedding)
Currently on Humira, Pentasa, Prevacid, Prenatal Vitamins and Folic Acid
Have also taken Entocort, Remicade, Methotrexate and Imuran


Stef17
Veteran Member


Date Joined Feb 2003
Total Posts : 1811
   Posted 8/26/2008 7:18 AM (GMT -7)   
Remicade starts to cross the placenta somewhere between 30 and 32 weeks in a pregnancy. SO, if you decide to get the remicade, your baby will be exposed to it. However, I don't know that it's really that big of a deal, especially if it's a one-time thing. When I was pregnant with my first child I got infusions every 5 weeks - this was before they knew when it crossed. So, I had infusions at 30 and 35 weeks. Then I had one as soon after delivery as I could. My daughter is FINE and healthy and has had no ill effects from the remicade. about 3 months after her birth I started a SEVERE flare and it took well over a year to get under control.

My opinion is this: Your GI has a point that it would be good to have it in your system. Labor and delivery are stressful events to the body and this would help preclude any instinct to flare that your body might have. HOWEVER, I don't think it's going to make any significant difference. I personally would want to get it before the birth just so I didn't have to leave the baby for a few hours. Things are so much more complicated after the baby comes. :) I don't think either option is going to help you or hurt you significantly. Go with your gut (no pun intended) and I'm sure everything will be fine! Sorry if that doesn't help very much.

inflamed
Veteran Member


Date Joined Nov 2005
Total Posts : 1340
   Posted 8/26/2008 7:37 AM (GMT -7)   
The only concern I've been told to watch for with this is that you should delay any live vaccine for baby if the baby is exposed to immunosuppressants near the end of your pregnancy b/c baby will be immunosuppressed too. I think this only impacts the rotovirus vaccine. I forget how long they said to delay, but am sure your pediatrician should know.

Good luck with the rest of your pregnancy!
Currently in remission!


Chasity102304
Regular Member


Date Joined Nov 2007
Total Posts : 165
   Posted 8/26/2008 8:13 AM (GMT -7)   
Stef17..I haven't found any articles or medical info that actually shows when remicade passes thru the placenta. Can you tell me where you read/heard it from? I would be interested to read anything I can find on it... Thanks!!
Fibromyalgia DX March 2003
Crohn's DX Jan 2006 (Symptoms since 96-Misdiagnosed as "female" problems-Major flare during pregnancy in 05 which lead to DX)
1st resection July 2007
Currently on Remicade/8 weeks


Stef17
Veteran Member


Date Joined Feb 2003
Total Posts : 1811
   Posted 8/26/2008 8:21 AM (GMT -7)   
I don't have any documentation except for my GI's word. I was told that by my GI in Miami who is part of a big research team and he told me this back in 2006 when I was pregnant with baby #2. He told me that it was the latest info they had found out and that he wanted me to get one "last" infusion at about 30-32 weeks and then hold off until after delivery. I told him that I wanted to be able to get another one before delivery if I felt like I needed it (I was getting them every 6 weeks), but I ended up being so stable in the pregnancy that I held off until after delivery.

If you'd like I can give you his name and/or the practice name. Maybe you or your GI can contact them and see if they can give you more info on the exact literature.

Chasity102304
Regular Member


Date Joined Nov 2007
Total Posts : 165
   Posted 8/26/2008 1:42 PM (GMT -7)   
Thanks Stef..I'll take your word on it, I was just curious if there was something out there I didn't find about it. My OB called back today and said that really there is nothing "written" out there other than that it does cross the placenta in late stages of pregnancy. Pretty much what I already knew that there have been no acutal studies, etc. He said he would prefer I waited until after delivery, but if I NEEDED NEEDED it then to go ahead and get it. I then called my GI (who was out of the main office today at another location) and talked with a NP and phone nurse. They took the name/# of my OB and are going to have my GI call him tomorrow and discuss everything...then get back to me when I see my OB on Thursday for 37wk weekly visit.

I feel like I am being paranoid to be honest! I cried while explaining everything to my husband on the phone..then again to my mom on the phone. My husband tried to rationalize that if they really thought it was going to do something serious to the baby they would not be suggesting (GI) that I get it right before delivery and my OB wouldn't say if needed to go ahead. Not that it would be easier to treat a possible flare, but alot less risk of me being sick than a new born with low immune system anyways. I kinda agreed but still have this thought that IF something was wrong with her when she is born I will guilt myself to death and second guess why I got the treatment for the rest of my life. I'm trying to stay focused and trust in my dr(s), but right now it's a struggle!! Hopefully on Thursday they will have come to a solution together that they both feel good about and I will be good with it too.

Thanks to all who replied!!
Fibromyalgia DX March 2003
Crohn's DX Jan 2006 (Symptoms since 96-Misdiagnosed as "female" problems-Major flare during pregnancy in 05 which lead to DX)
1st resection July 2007
Currently on Remicade/8 weeks


Stef17
Veteran Member


Date Joined Feb 2003
Total Posts : 1811
   Posted 8/26/2008 3:28 PM (GMT -7)   
If it helps you any, remicade has been approved for pediatric use. I know that "newborns" are a special group all their own, but being category B and all....

Good luck with your decision. Keeping my fingers crossed for the best outcome!

Chasity102304
Regular Member


Date Joined Nov 2007
Total Posts : 165
   Posted 8/28/2008 12:56 PM (GMT -7)   
Just thought I would let you guys know that after going back and forth with both my GI and my OB, I have decided not to get another treatment until after I deliver. The plan for now is to be induced on the 9th and have my treatment on the 11th. If for whatever reason something changes and I go naturally I'm not sure what we'll do since my insurance isn't cooperating with moving one treatment to the hospital I am delivering at. My GI is worried that I will flare and wanted me to get a treatment 3 days before induction/delivery. My OB thinks that because there is SO much unknown with how the remicade will affect the baby if given that close that he doesn't feel like it's a MUST!

I have cried for days, going back and forth on what is the right thing to do. Do I risk flaring and being sick/possibly being unable to care for my daughters the way I would like to OR risk something (who knows the possibilities at this point) being wrong with my daughter. In my heart I have to take the chance on getting sick myself because I couldn't live with knowing I MIGHT have done something to harm her. My husband has been great about supporting the decision I made and will do everything he can to make things easier for me if I do get sick. Plus I have a great support of family and friends. In the end, I know we'll get through whatever happens so I'm trying not to worry toooo much.

Thanks to everyone that replied and gave advice/experience! I GREATLY appreciate it!!!!!!
Fibromyalgia DX March 2003
Crohn's DX Jan 2006 (Symptoms since 96-Misdiagnosed as "female" problems-Major flare during pregnancy in 05 which lead to DX)
1st resection July 2007
Currently on Remicade/8 weeks


Stef17
Veteran Member


Date Joined Feb 2003
Total Posts : 1811
   Posted 8/28/2008 3:32 PM (GMT -7)   
Well, I'm glad you came to a decision that you feel ok about. Sometimes the hardest part is just making the decision. Listen, you WILL be OK! Stop fretting now that you've made up your mind. PLEASE, PLEASE, PLEASE don't let the worry from this put you into a tailspin and cause you to flare when you might have been just fine all along. Have you been fine during the entire pregnancy? If so, then you have GREAT reason so assume that you will be just fine during and after delivery. Seriously. You will. Don't let your GI put a head-trip on you. My last infusion with baby #2 was somewhere around 32 weeks and then I didn't have another one until after he was born. I don't recall exactly how soon I got it, it might have been a whole week later - maybe 2 weeks. BUT... I was FINE! No flaring, nothing. So, don't sweat this and enjoy the next few weeks getting ready for baby.

Chasity102304
Regular Member


Date Joined Nov 2007
Total Posts : 165
   Posted 8/28/2008 5:45 PM (GMT -7)   
Thanks for the reassurance!!! I feel alot better since I made the decision. I have been great during the pregnancy. No pain, no bathroom issues, even my hemrroids have been better than normal. My OB also stated that since I have been fine throughout the pregnancy, I should have less risk of flaring afterwards. In the end, I'm at peace with my choice and I know I'll make it whatever may happen. Thanks again!
Fibromyalgia DX March 2003
Crohn's DX Jan 2006 (Symptoms since 96-Misdiagnosed as "female" problems-Major flare during pregnancy in 05 which lead to DX)
1st resection July 2007
Currently on Remicade/8 weeks


Chasity102304
Regular Member


Date Joined Nov 2007
Total Posts : 165
   Posted 9/3/2008 6:05 AM (GMT -7)   
Today my GI called to tell me that they went to a training last night and found out that if I got the remicade treatment in the 3rd trimester that the baby shouldn't be exposed to any live vaccinations. She specifically mentioned roto-virus. I think someone mentioned this in a reply to this post already, but I'm wondering if anyone has any other info?!!? I am going to be researching all I can find online today because I got my last treatment at 31 weeks.
 
UGH!! I thought I was going to be in the clear as far as this goes because I have decided to wait until after delivery to have my next treatment. I am definitely going to talk to my OB tomorrow at my visit and have him look into anything he can find. PLUS I think I'll call the family dr today and give him a heads up so that he can find out anything before she is born in terms of vaccinations. Now I am back to worrying that I might have done something that will harm the baby... confused
Fibromyalgia DX March 2003
Crohn's DX Jan 2006 (Symptoms since 96-Misdiagnosed as "female" problems-Major flare during pregnancy in 05 which lead to DX)
1st resection July 2007
Currently on Remicade/8 weeks


FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted 9/3/2008 6:59 AM (GMT -7)   
Aww, i don't think it is a big deal for the baby's vaccines to be a little delayed. You had to take care of you first and foremost because you being sick is a far greater danger to your baby.
26 Year old married female law student (last year!!). Diagnosed w/ CD 4 years ago, IBS for over 10 years before that, which was probably the CD. I am sort of lactose intollerant too but can handle anything cultured and do well w/ lactose pills and lactaid. For crohns I am currently on Pentasa 4 pills/4x day and hysociamine prn. I also have bad acid reflux and have been on PPI's since age 13. I have been through prilosec, prevacid, and nexium. Currently I am on Protonix in the morning and Zantac at night. I also take a birth control pill to allow some fun in my life.


Stef17
Veteran Member


Date Joined Feb 2003
Total Posts : 1811
   Posted 9/3/2008 7:55 AM (GMT -7)   
I'm pretty sure the roto-virus vaccine is called Rototeq and it's given orally at 2, 4, and 6 months. I would check with your pediatrician and ask your GI if it's ok for baby to get the vaccine at 2 months. I don't know how long the remicade could actually stay in baby's system, IF there's any in there at all. Think about it - a remicade infusion at 31 weeks and then 2 month vaccination - that means about 17 weeks from the infusion until the vaccine. IF the baby had any exposure to the remicade at all, wouldn't it be out of his/her system by then? You know the medical profession always takes the most conservative stance, but 17 weeks certainly seems sufficient. Hope that's helpful a little. Let us know what you find out. I'm curious to hear what they tell you.

Chasity102304
Regular Member


Date Joined Nov 2007
Total Posts : 165
   Posted 9/3/2008 8:13 AM (GMT -7)   
I guess I forgot to put in the post that the nurse said for the baby to not have the live vaccines for 6 months. I know that when my daughter was having her immunizations, I don't remember her getting anything orally. I also checked her shot records and there was nothing listed for roto-virus. She will be 3 on the 23rd of this month..so maybe it's newer or maybe they don't list it because it's not a shot? I looked online to try to find some sort of listing as to what is considered a "live vaccine" and each website was a little different. MMR, Polio and Chicken Pox were listed on almost all of them, but I didn't see roto-virus listed. Again this could be because it's not in a shot form? According to my daughters shot records for Indiana (we live in Ohio but dr in Indiana) the only one she would get within the first 6 months is the Polio (1 shot at 2 months and another at 4 months).

Honestly I panicked when the nurse called this morning. I have really been struggling with this information the last week or so since the drs decided that they didn't agree. It would have been an easy choice for me if they would have agreed, but who do I trust more in their opinion is what I feel like I am being asked. I feel comfortable in the choice that we made not to have another treatment, but now am questioning whether I should have gotten the treatments throughout the pregnancy. I know it's something all mothers do, worry worry worry!!! I am going to ask my OB and my family dr tomorrow to double check on everything and we'll go from there.

Thanks for all your support..it means SOOO much to me! It's comforting to know someone has knowledge or experience of this disease when I am in doubt!!
Fibromyalgia DX March 2003
Crohn's DX Jan 2006 (Symptoms since 96-Misdiagnosed as "female" problems-Major flare during pregnancy in 05 which lead to DX)
1st resection July 2007
Currently on Remicade/8 weeks


Stef17
Veteran Member


Date Joined Feb 2003
Total Posts : 1811
   Posted 9/3/2008 9:59 AM (GMT -7)   
Hang in there girl. Try not to stress too much about it (I know easier said than done)! My son had rototeq in Oct 2006 for his 2 month visit. The ped said it was "new" and had been studied for several years and was "much safer" than the previous roto-virus vaccine that had been out. It was orally given and I don't know if it's live or not, but I think it is. I'm sure if you call your ped's office they can tell you which vax's are given in the first 6 months.

I'm not a doctor, but I'd have to say that 6 months sounds awfully extreme considering your last treatment was at 31 weeks. Remicade hasn't shown itself to be that potent. I'd be curious to see what data they have to back up the "wait 6 months" mandate.

You've come this far and you've done so great! Do NOT 2nd guess yourself now. You've made the best decisions you knew how to make and I'm SURE that everything will be just fine. Remember - doctors have access to more information than we do (sometimes), but they are just regular people like you and me - they have opinions and sometimes they don't agree. Don't let that put you in a panic. You are very wise to gather up all the info you can and then go from there. Keep us posted!

Chasity102304
Regular Member


Date Joined Nov 2007
Total Posts : 165
   Posted 9/4/2008 4:07 PM (GMT -7)   

My OB was sick this week and left early today, but I saw a midwife in his office. I asked her about the vaccinations and she said they don't give any that are live...actually they don't give any at birth. She said the ones that they give are live attenuated (I think this is the word she used) which are created from dead vaccines. I am still going to make sure my family dr is aware for the babies first shots at 2 months as I obviously don't want to put her at risk, but I think it will be fine. She said they don't give the roto-virus to everyone either, not sure what the stipulations are but I was right that my almost 3 year old never had it. I feel much better about the situation now :)

 

Oh yeah... I'm 2cm dialated and will hopefully go on my own tonight or tomorrow cause I am contracting like crazy right now. BUT if not, I'll be induced on Tuesday at 6am! YAY!! There is an end in sight!!!  


Fibromyalgia DX March 2003
Crohn's DX Jan 2006 (Symptoms since 96-Misdiagnosed as "female" problems-Major flare during pregnancy in 05 which lead to DX)
1st resection July 2007
Currently on Remicade/8 weeks


FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted 9/4/2008 5:00 PM (GMT -7)   
Wow, I hope you go tonight!
26 Year old married female law student (last year!!). Diagnosed w/ CD 4 years ago, IBS for over 10 years before that, which was probably the CD. I am sort of lactose intollerant too but can handle anything cultured and do well w/ lactose pills and lactaid. For crohns I am currently on Pentasa 4 pills/4x day and hysociamine prn. I also have bad acid reflux and have been on PPI's since age 13. I have been through prilosec, prevacid, and nexium. Currently I am on Protonix in the morning and Zantac at night. I also take a birth control pill to allow some fun in my life.


Stef17
Veteran Member


Date Joined Feb 2003
Total Posts : 1811
   Posted 9/4/2008 5:05 PM (GMT -7)   
Oh wow! The ball is definitely rolling now. Can't wait to hear that you've delivered! Sending good vibes your way ((((((((((((((easy labor & delivery & noooooooo flaring))))))))))))))

wibiff
Regular Member


Date Joined Feb 2008
Total Posts : 27
   Posted 9/8/2008 9:26 AM (GMT -7)   
You may have had your baby already, but I am hoping to put your mind at ease. I didn't have remicade while I was pregnant, but was on prednisone for a significant portion of my pregnancy. We had to decide when to give immunizations to my daughter too, because of the immunosupression factor. She was able to get her immunizations on schedule, and is perfectly happy and healthy. It is totally normal to worry about your kids and wonder if you've done anything to harm them, but keep this in mind. Even with the crohns and the difficult decisions, would you rather be alive, or never have been born? My brother had me keep that in mind through out my pregnancy when i was feeling guilty. So even if your baby is immunosuppressed for a while, keep her away from too many people, wash your hands frequently, and know that even if she gets a few more colds than the average baby, she would still rather be born.
25 year old woman, Dx with crohns 2004.  Currently on remicade 10mg/kg, Pentasa, Azathioprine, glucosamine with chondroiten, Calcium with D, and a multi prenatal vitamin.
I have tried asacol, colazol, entocort, fiber tabs, and have to take phernergan, tylenol with codeine, and ativan once in a while when i flare badly.


dawn636
Regular Member


Date Joined Aug 2005
Total Posts : 42
   Posted 9/8/2008 9:35 AM (GMT -7)   
Hoping everything goes smoothly, I felt good up to about three months after my daughter was born, so like everything else with this disease you just never know. Prayers for a short delivery and long remission. hugs Dawn☼

Chasity102304
Regular Member


Date Joined Nov 2007
Total Posts : 165
   Posted 9/8/2008 5:02 PM (GMT -7)   
Just wanted to update quickly... I still haven't had the baby. UGH!! Going in tomorrow at 6am for induction. Very anxious..but ready!! In good news, I did get my insurance to approve my treatment at the hospital that I am delivery at instead of having to rush out of the hospital on Thursday to go to another town for my regular one. THANKFULLY!! I was worried that things might not go "as planned" and I wouldn't be out of the hospital in time for my treatment...now I don't have to worry since I'll get it as soon as I deliver.
Fibromyalgia DX March 2003
Crohn's DX Jan 2006 (Symptoms since 96-Misdiagnosed as "female" problems-Major flare during pregnancy in 05 which lead to DX)
1st resection July 2007
Currently on Remicade/8 weeks


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 9/8/2008 5:17 PM (GMT -7)   
Sending good wishes for a safe and happy delivery. Please let us know the details when your little one arrives.
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.


kgirlie
Regular Member


Date Joined Jan 2008
Total Posts : 101
   Posted 9/8/2008 9:28 PM (GMT -7)   

I am thinking of you. I had my baby girl one year ago and did the same questioning. She is the greatest joy along with my son and I LOVE every minute with them. The joy of my kids is one thing CD will not take away from me. They love me sick and all. I find it interesting that a lot of people flare at 3 months. That is when I flared with both of my kids. Good luck and hug that beautiful little girl and her big sis.

Kgirlie


Kgirlie
 
28 year old female dx with CD in 2001. Pentasa 4 g/day, Prednisone 30 mg/day, Lexapro 10 mg/day, Wellbutrin 150 mg/day, Remicade, topamax, Maxalt 10 mg as needed. Mother of son, 3, and daughter, 1.


Kaycie
Regular Member


Date Joined Jan 2006
Total Posts : 449
   Posted 9/9/2008 12:59 AM (GMT -7)   
Tough one. I delivered unexpectedly at 29 weeks and 2 days and then had my scheduled infusion exactly 1 week later. I was fine, but my delivery was emergency c-section AND I lost one of my twin girls, so I was high on adrenaline and likely my Crohn's was on the "back burner" But, my pregnancy hormones were also friendly to my Crohn's, so that may have something to do with it too.

If I had a choice, I'd get the Remicade BEFORE delivery. This way you can combat any POTENTIAL flares. That's just me.

As for the safety of Remicade while pg? I've seen some top notch GIs and SEVERAL very experienced Maternal Fetal Medicine specialists and their genetics counselors.... Remicade is safe according to current studies. I hate the unknown, but I find faith in the fact that my daughter is alive and healthy and despite being born nearly 3 months early she's on track developmentally and doing well. So, that gives me hope that everything is fine. A while back there were several gals on here who BF while on Remicade. I was actually recommended to NOT BF, but that was because the fluctuation in hormones on my body causes me to flare, so we opted to go straight to birth control pills to control my hormones after delivery and to not BF. Besides that, I had a LOT of my plate after my delivery. It was the best option for me.

GL! I know it's a tough decision.... and I just realized....this message may already be late! GL with whatever happens
Kaycie - Age: 26
Crohn's - Dx Nov 05
Remicade - Next infusion - July 10th - new dose - 10mg/kg
IVF #1 (In-Vitro Fertilization) - Failed
IVF #2 - IVIg, Heparin, Baby Aspirin - TWIN GIRLS!!!
Reagan Dawn - 8/2/07 - Lived 1 hour 27 minutes due to Cloaca, NOT affiliated with my Crohn's
Addison Maria - 8/2/07 - 11 months old

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