AS and RA very close

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The Reverend
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Date Joined Apr 2009
Total Posts : 66
   Posted 4/21/2009 9:34 AM (GMT -7)   
G'day from down under, Since being treated I have found that these two are almost the same thing my sister has RA and AS but has no deformed gene hlab 27 gene as I have But I do not have RA.  Do doctors really Know or are they just guessing, my doctor now tells me there is no real test for AS it is just an ussumption upon data received from xrays and blood tests where there could be a dozen different outcomes.
So do I realy have AS or is there something else wrong with me and thats why the medications don't work?
I think I'm going around the twist. smhair

Ides
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Date Joined Nov 2003
Total Posts : 7077
   Posted 4/21/2009 4:28 PM (GMT -7)   
Well, AS is a disease based upon meeting certain criteria. If you meet the criteria, then I would say, yes, you most likely do have AS. What medications have you tried? Did you not get any relief from the biologics like Enbrel or Remicade? Remicade worked beautifully for 2 years on my inflammation. Unfortunately, it stopped working and Humira did nothing.
Moderator Crohn's Disease Forum
CD, Ankylosing Spondylitis, lupus, small fiber peripheral neuropathy, avascular necrosis, peripheral artery disease, degenerative disc disease, and a host of other medical problems.
 


golitho
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Date Joined Sep 2008
Total Posts : 1670
   Posted 4/21/2009 5:29 PM (GMT -7)   
Hi, I don't have AS but either have sero neg arthritis or psoriatic arthritis (don't have psoriasis but my symptoms fit Psa better!) Anyway the humira started off working wonders for me and isn't working so well now, had to be bumped up to 20mg mtx to try and counter the swelling and pain and guess what, still have swelling and pain. My rheumy says the biologics don't work for everyone but she may try me on another one. Maybe we are just the unlucky few???
By the way welcome Reverand, my rheumy is still confident that there is something out there to help. I hope you find something too.

The Reverend
Regular Member


Date Joined Apr 2009
Total Posts : 66
   Posted 4/22/2009 12:19 AM (GMT -7)   
My medications are Salazopyrin 3000mg, plaquinal 100mg, morphine 40mg,coversyl 10mg, diaformin sr 3000mg, actrapid injection sliding scale + 6 units in morning, lantos solostar 16 units,epilum 400mg, omeprazol 20mg, amlodipine 5mg and panadien forte and tremadol 50mg when needed.
 
My doc has been doing all sorts of tests on me so has my rheumy it is no fun. shakehead

Pamela Neckpain
Veteran Member


Date Joined May 2008
Total Posts : 1821
   Posted 4/25/2009 3:16 AM (GMT -7)   
I haven't done research on Anklyosing Spondylitis but I have found that word
written on forms by various doctors.

As far as I have been told, I have Osteoarthritis of the entire spine with bulging
and herniated discs, etc.

I am never free of pain. You all are kind of experts on the subject and I wonder
why my doctors have never mentioned anklyosing spondyitis. I took Methotrexate
once for a test. I felt sooo good after taking that medicine. I asked the doctor if
he would prescribe it for me and he said, "I might as well prescribe a quart of gin
a day."

So ... anyway, I've gone under the assumption that there's no way to treat my
arthritis except with opiods, neurontin, and an antidepressant.

Have I missed something???

Pamela Neckpain

G'day, Reverend. Good to see you here but sorry that anyone HAS to be here.
I have a friend in Australia and I love the way she talks.
MEDICAL CONDITIONS

Osteoarthritis all levels of spine right down to Coccyx,Spondilytis,Myofascial Pain
Fibromyalgia,Bulging Discs,Spinal Stenosis,Scoliosis,Osteopenia,Chronic Constipation
Carpel Tunel Syndrome, Attention Deficit Disorder,
Depression & Anxiety

Methadone for Pain, Xanax for Anxiety, and more, of course.


The Reverend
Regular Member


Date Joined Apr 2009
Total Posts : 66
   Posted 4/26/2009 4:43 PM (GMT -7)   
G'day everyone I have seen my roomy again on friday just gone and have gotten no further.  He said that he sent a letter to my GP asking him to alter my meds and ask for a heap of tests, well the GP did not do these test so he was unable to do anything more until all tests are performed.  Now I sit and wait again till the GP gets his finger out of what ever posterior he has it buried in and do something positive for a change, sorry as you can tell I have run out of pain meds and now I have to see a locome as I can not get in to see my Gp for 2-3 weeks because he is busy.  Unbelievable!!!  The plus side is that maybe this locome might have some brains and help me, I do pray.  Well thats enough of the gripping, I feel better now, it is so good to get things off our chests with people who understand about these things.  See we are all human after all.
 
Hi Pamela Neckpain, it is difficult when we have doctors who don't whant to go outside there comfort zones and experiment with other meds and drugs if you are in so much pain and your condition is that bad and you find something that gives you just an ounce of relief like the Methotrexate then why wont he let you try it as I say what do you have to loose.  I don't know how old you are as we are not that close and it's not polite to ask but some of these medications have terrible side affects but as you are taking opoids and methadone you are already saying you have balanced the scales already against pain and health.  Some of these drugs will cause kindey disease or are carsinagenicts and may cause death but that may not happen for forty to fifty years from the time you start the medication so they say that that medication is dangerous to use.  That is one factor that solved my problem for taking the TNF blockers which Can increase the risk of developing cancer.  So some doctors think they are saving us from more hardship and pain in the future without realising that we want to live comfortably now while we still can, when I'm seventy I would not have such a problem to end up in a wheel chair and have some Doc say you have only 5 years to live, But not now.  People wander why we get depressed. 
 
 
It was an Indian Doctor that first diagnosed me with AS, it was amazing out of all the doctors I ever went to this doctor had treated my uncle who I had not seen in 20years for the same thing, 2years before my uncle committed suicide because he could no longer put up with the pain, He was found out too late and it was very advanced.  He suffered severe depression because doctors were treating him for mental problems because they thought it was all in his head.
 
Enough doom and gloom from me.  Just having a bad day needed to tell someone, catch ya's later. 
 
_______________________________________________________________________________
Ankylosing Spondylitis, Hypertension, type2 Diabeties, mild epilepsy
My medications are Salazopyrin 3000mg, plaquinal 100mg, morphine 40mg twice daily,coversyl 10mg, diaformin sr 3000mg, actrapid injection sliding scale + 6 units in morning, lantos solostar 16 units,epilum 400mg, omeprazol 20mg, amlodipine 5mg and panadien forte and tremadol 50mg when needed.
 

The Reverend
Regular Member


Date Joined Apr 2009
Total Posts : 66
   Posted 4/26/2009 4:49 PM (GMT -7)   
Just a little addition I'm 37 so there are a lot of years ahead that I would rather have pain control and be able to live than in a wheel chair staring at the wall.

1StubbornRAwoman
New Member


Date Joined Apr 2009
Total Posts : 2
   Posted 4/26/2009 8:45 PM (GMT -7)   
lets see.. i'm new here.. but the RA and AS caught my attention.. I have had severe RA for 10 years (I am a 36 year old female) I am negative on all the genetic markers.. mine i believe was caused by and infection that lead into Endocarditis.. When I started having severe back problems a year and a half ago... they were pointing splotchy legs.. arms etc..they said xrays showed possible signs.. it actually turned out that I had my right hip locked in the back position.. but later did find that I also had Sjogren's Syndrome with my RA... which then led to neropathy all over..  but the basics i'm trying to say is alot of the Rheumatic diseases have a very fine line between them.. and they tend to be treated with similar meds.. i originally was on methotrexate for many years.. and boom ended up with it burning a hole in my tummy... still causing grief now.. had to stop taking it.. then of course kept getting sick.. lost my job.. my insurance.. and was stuck in catch 22.. couldn't do anything .. get any treatment because of no insurance because I couldn't work.. I couldn't even stay up more than 2 hours...I finally got into the VA (Veterans Association) and they tried.. antibiotic treatment, all type of wacko pills.. they finally put me on humira.. boom the first injection.. the next morning I woke up i was ready to do cartwheels.. lol.. i was on this for a couple years.. until finally it started to fail.. and was bumped from one shot every 2 weeks.. to one shot every week.. the within 2 months it totally failed.. I was then switched to Enbrel.. once again.. Miracle.. unfortunately couple years.. started failing.. went from one shot a week.. to two shots a week...over the last year and a half.. my doc restricted me to no more than 15 hrs a week.. and has been saying "it's about time for you to think about quiting and going for disability". I refuse to until he tells me I can no longer work.. I am very stubborn.. obviously lol.. but I have been noticing over the last year about these this little red bumps.. almost like miniture blood blisters.. they would get smaller.. but they never go away.. than i see more.. I showed my regular Doc the bumps.. he mentioned something about Enbrel sometimes doing something to platelets and did bloodtests... anyone know exactly what this condition is? I am actually in the middle of having multiple tests.. they are making sure I do not have any cancer due to family popping up with it... and they don't have the kicker of the cancer causing meds...
Supposedly we are supposed to start infusion treatments next.. it's my last platau of treatment.. I am on heavy duty pain meds... of what I understand would kick a 300 lb man in the rump lol... I'm on methadone and oxycodone.. I guess I have a very high resistance cuz I never have felt altered at any point of taking them.. even from the beginning.. but I didn't have any real pain relief until the methadone.. they tried morphine on me.. nothing on pain.. and as far as i felt i took a sugar pill lol... but anyways I digress.. anyone know about this little bumps that never totally go away.. this supposed platlet thing?? anyone know of this? scool    michele

The Reverend
Regular Member


Date Joined Apr 2009
Total Posts : 66
   Posted 4/27/2009 5:45 AM (GMT -7)   
G'day 1stubbornRAwomen and welcome, I feel your pain, I have superficial hemangioma which are blood red lumps on my skin I had 1 or 2 on my body before the 3 TNF blockers Humira Enbrel and the third Remicaide infusion (which you did not mention so I do not know if they offered it to you). but I would think your doc would know what these lumps look like and yours does sound more severe. These are not dangerous but can be uncomfortable at times. I would post a question in the new topics section and you will find people who know a lot more than me who will help if they can.
My pain does flare up at times and the Morphine just does not cut it,paincontrol is hard and my doc gives me tablets to protect my stomach so maybe I will last a little longer, the price to pay is sometimes too high and when you can not rotate your pain meds it makes it harder
I look forward to talking more and with your history I think we will be able to help each other, sorry not this time though. catch ya later from down under

golitho
Veteran Member


Date Joined Sep 2008
Total Posts : 1670
   Posted 4/27/2009 6:35 PM (GMT -7)   
Hi Reverand, did you say you'rd gone from humira to enbrel and then remicade? It's so depressing when the medication stops being so effective. The best I ever felt was on arava, sulphasolasine and methotrexate but I was only on it for 2 months when it wiped out my white blood cells... now I'm on humira and mtx (20mg) and I'm in pain. Knees swollen, elbows and thumbs at me. Hips bad but that I am told is bursitis, lower back hurts too but thats osteoarthritis. I'm not sure which way to go next, living on codeine to keep me going, so not in as much pain as you. Can't decide if I should just carry on as I am or try yet another drug combination, I'm up and down like an emotional roller coaster. Am I looking for that miracle cure that just doesn't exist? Cortisone injections give me about 3 weeks relief of that particular joint, I had carpel tunnel too but the humira has worked for that. I feel as if it is working but just not fully working but us australians can't have stronger doses...sorry seem to be ranting yet again. Pain is getting me down.

The Reverend
Regular Member


Date Joined Apr 2009
Total Posts : 66
   Posted 4/28/2009 5:48 AM (GMT -7)   
G'day Golitho, Until I joined HealingWell.com I had never found so many Australians on one sight fabulas.  Anyway glad to hear from you and it is a drag not being able to increase TNF injection strength in Aus, When I was on Enbrel and my body fought back against it the rheumy said if he could double the dose it may of kept working but now that I have read info from others in America it probably would of only lasted a short while.
 
Has anyone heard of a report on a man with very severe pain being put on three times the legal dose of enbrel, it took his pain then took his life?  This was about two or three years ago I thought because it is rare to hear of this someone may of heard something.
 
Well I live on Salazopyrin and the rheumy wants me on methatrexate and pregnazone as well, I was on Cortizone injections when I was in late teens doing Martial arts even then I had joint pain but unknown cause.  I acheived a second Dan but now Knowledge fadding in head as body will not do.
 
Emotional roller coaster, nice term but I like Emotional Storm better it rages a little or a lot from dusty electrical storms to full blown Cyclones and tornados or for the Americans, Hurricanes and tornados.  We don't just live we have learnt to endure.
 
I think every now and then we need a change of meds as our bodies build up a resistance against some pain killers and our bodys need to clean out some of those toxins which store up.  And as for miracle cures, I heard the other day they brought out a little white pill to fix all ailments take once and never again will you have pain,THEN I WOKE UP.  Dang back to the drawing board.
 
_____________________________________________________________________________
Ankylosing Spondylitis, Hypertension, type2 Diabeties, mild epilepsy
My medications are Salazopyrin 3000mg, plaquinal 100mg, morphine 40mg twice daily,coversyl 10mg, diaformin sr 3000mg, actrapid injection sliding scale + 6 units in morning, lantos solostar 16 units,epilum 400mg, omeprazol 20mg, amlodipine 5mg and panadien forte and tremadol 50mg when needed.

1StubbornRAwoman
New Member


Date Joined Apr 2009
Total Posts : 2
   Posted 4/29/2009 6:38 AM (GMT -7)   
Yeah Morphine did absolutely nothing with me.. in fact after trying that they did a long trial of using gabapentin and such for my neuropathy and hope it helped with everything else.. i went into huge doses... I hated it.. i basically was hurting.. but basically my whole body was numb... I was missing alot of the sensory input which made me anxiety ridden.. but when they put me on the methadone! *angels sing* it was the greatest... no pain.. and i honestly wasn't thinking or expecting that...  i had to some extent had pain for the whole 10 years i handled it when it was tolerable and started pain meds when it wasn't.. I have been told by the docs I have a high tolerance for everything.. for pain (supposedly I don't feel it till it's way above the level that reg pain meds can help) and high tolerance for meds.. I did just get my blood test results.. they are showing my dumb thyroid is not working all that great right now and low folic acid.. we are in the middle of doing a whole  cancer check.. my mom has kidney cancer and of course this sent the family into a tizzy... runs in the family and I have the wonderful added kicker of being on these cancer causing  treatments.. for 5-6 years.. so.. x-rays.. bloodtests.. mammos, and catscans are being scheduled... but yes the Remicade.. yeah it's a choice between using remicade or orencia.. they want me to use orencia first... supposedly the safer of the two.. not sure tho... because I am in the VA health system.. My Rheumatologist is in Tampa..(west coast of florida) I live in Palm Bay.. (east coast of Florida) so... 3 hours each way is the trip.. they can't do Orencia at the VA here in my area because a Rheumatologist has to be there.. my new doc will be of the "older" variety as well.. so who knows how long he'll be my doc lol.. but anyways.. dealing with the RA and going out there is on hold for my mom's surgery for her cancer.. which we got the call today that it will be tomorrow.. so I guess I will be able to make the appointment now... I just have to make it for when my father is home (he commuts to NY)-- he works 2 weeks and then he is home for 2 weeks..(I don't remember if I mentioned I have an 11 year old son) -- so basically I make my Rheumy appointments for when my father is home.. so there is someone here to get my son from the bus and such and the other can cart me there... lol while I do the "head bobbing" all the way there ("head bobbing" as in the frustrating fight to stay awake) lol.. so anyway... I guess of what I see the platlet thing can be with the low thyroid.. so maybe they are right.. but then maybe they are wrong *shrug* wouldn't be the first or last time... ttyl  Michele idea

The Reverend
Regular Member


Date Joined Apr 2009
Total Posts : 66
   Posted 4/29/2009 7:36 AM (GMT -7)   
Understand Michele all too well, I hope everything with your Mum goes well and your new Rheumy. When I started at Rheumys I had to travel 5 Hours south to the sunshine coast it was terrable as the roads were rough and every pot hole I would get whip lash Especialy when I dozed off, now I must wear a foam neck brace for travelling. If your neck gets sore it might help you they cost about $12 AU, it has helped me, they are a little uncomfortable at the start but when you learn how tight is comfortable not too bad. It stops the head drop and flop.

Another thing doc was checking for me was called Hyperparathyroidism yes it is a word, the longest in the english language, the symptoms are the same as what I have It is caused when your parathyroid glands stuff up and they sit behind the thyroid Glands in your neck. My Mother, Grandmother and Uncle eventually died from this but I'm OK for this one lucky.

Remicaid is done through infusion usually in Hospital reanal units, it made me very ill, hair fall outs, nausiated, very unwell, but I hear for others it is fine.

Do you glow in the dark from X-rays yet, I think I do. Like ttyl Pastor Ray

golitho
Veteran Member


Date Joined Sep 2008
Total Posts : 1670
   Posted 4/30/2009 6:04 PM (GMT -7)   
Hi Rev, you really bring a smile to my face. I absolutely feel I glow! The amount of MRI's, CT's and X-rays I've had in the last year, you get to the point when someone orders yet another test of thinking what effect are all these tests going to do for my long term health. If its not the disease its the meds if not the meds the testing. I had to drive to Bathurst and back in a day last Sunday and my back still hasn't recovered!!! Regards golitho

luvmetender
New Member


Date Joined Apr 2009
Total Posts : 1
   Posted 4/30/2009 8:21 PM (GMT -7)   
Ides said...
Well, AS is a disease based upon meeting certain criteria. If you meet the criteria, then I would say, yes, you most likely do have AS. What medications have you tried? Did you not get any relief from the biologics like Enbrel or Remicade? Remicade worked beautifully for 2 years on my inflammation. Unfortunately, it stopped working and Humira did nothing.

  Hi Ides,
 
    I was diagnosed with AS about 18 months ago. Remicade has been working for me so far for joint swelling and pain.  The only problem is my lower back which feels like a hot knife is stuck in it. Do you have pain in the lower back as well?  If so, what drugs do you suggest?
 
Thanks.

mrsreverend
New Member


Date Joined Apr 2009
Total Posts : 4
   Posted 5/1/2009 1:12 AM (GMT -7)   
G'day from the Reverend, I find that I need a little more than just the main drugs. When I was on the TNF blockers I still had to take extra pain releif I started on Brufen then went to panadiene Forte and now I take morphine + Pain killers such as tremadol or the panadiene Forte as well. Its up to you on what you need if it is a little top up or whether you need another main back up, if it is another main talk to your doctor but from personal knowledge don't take too much ease into them because the long term effects can be bad for some and others you can build up resistance.

and my mate in pain Golitho Maybe I might start a new thread on the X-ray stuff and get some answers Cause I know I have had a lot too.

The Reverend
Regular Member


Date Joined Apr 2009
Total Posts : 66
   Posted 5/1/2009 1:32 AM (GMT -7)   
That was supposed to be from the reverend but my wife was still signed in oops!

The Reverend
Regular Member


Date Joined Apr 2009
Total Posts : 66
   Posted 5/1/2009 8:20 AM (GMT -7)   
Going a bit mental tonight skin crawling I feel as though someone is watching me but there is know one there, like dread is around me I am sure it is the pills as this happens more and more lately or is it just me?
 
_______________________________________________________________________________
Ankylosing Spondylitis, Hypertension, type2 Diabeties, mild epilepsy
My medications are Salazopyrin 3000mg, plaquinal 100mg, morphine 40mg twice daily,coversyl 10mg, diaformin sr 3000mg, actrapid injection sliding scale + 6 units in morning, lantos solostar 16 units,epilum 400mg, omeprazol 20mg, amlodipine 5mg and panadien forte and tremadol 50mg when needed.

Someone started it someone will end it, we must endure till the end


golitho
Veteran Member


Date Joined Sep 2008
Total Posts : 1670
   Posted 5/1/2009 2:58 PM (GMT -7)   
I'd say its the opiates, always make me hallucinate!!! Hey I went to my GP yesterday to get more pain meds and guess what she ordered another CT scan!!!I am positively irradiated and you can possibly pick up the glow from Queensland!!!

The Reverend
Regular Member


Date Joined Apr 2009
Total Posts : 66
   Posted 5/1/2009 5:32 PM (GMT -7)   
G'day wow Golitho I can see the glow like a sunrise in the south.
I just had six more X-RAYS myself. 
 
Yeh its got to be the pills or mabey stress too.
 
_______________________________________________________________________________
Ankylosing Spondylitis, Hypertension, type2 Diabeties, mild epilepsy
My medications are Salazopyrin 3000mg, plaquinal 100mg, morphine 40mg twice daily,coversyl 10mg, diaformin sr 3000mg, actrapid injection sliding scale + 6 units in morning, lantos solostar 16 units,epilum 400mg, omeprazol 20mg, amlodipine 5mg and panadien forte and tremadol 50mg when needed.
 
 

Someone started it someone will end it, we must endure till the end


golitho
Veteran Member


Date Joined Sep 2008
Total Posts : 1670
   Posted 5/1/2009 8:17 PM (GMT -7)   
And stress just adds to the pain too. Sorry you're having a bad time, gentle hugs and hopefully its your guardian angel watching over you.

The Reverend
Regular Member


Date Joined Apr 2009
Total Posts : 66
   Posted 5/2/2009 4:31 AM (GMT -7)   
:-)  Feeling better (I can see clearly now the rain has gone, I can see all obsticles in my way, gone are the dark clouds that had me blind, gonna be a bright bright sun shiney day).
 
I dislike the depression the most thanks for cheering me up Golitho and yes my Angel does watch over me.
 
In my lowest time I must remember that he strengthens me to edure the same as he strengthened Jesus in the garden of gesthemani before his betrail, look out now I'm fired up, I can feel a sermon coming on yeah!!!
 
Better than any drug. thanks again. smilewinkgrin
 
Feal that groove yeah
 
_______________________________________________________________________________
Ankylosing Spondylitis, Hypertension, type2 Diabeties, mild epilepsy
My medications are Salazopyrin 3000mg, plaquinal 100mg, morphine 40mg twice daily,coversyl 10mg, diaformin sr 3000mg, actrapid injection sliding scale + 6 units in morning, lantos solostar 16 units,epilum 400mg, omeprazol 20mg, amlodipine 5mg and panadien forte and tremadol 50mg when needed.

Someone started it someone will end it, we must endure till the end


butterflygrrrl
Regular Member


Date Joined Jan 2003
Total Posts : 28
   Posted 5/13/2009 4:26 PM (GMT -7)   
Hi.  I have AS too.  From what I understand, it's just reaaaallly hard to treat.  It doesn't generally respond as well as RA does to treatments, according to my rheumatologist.  My previous rheumatologist wasn't as pessimistic as my current one, but both said that really the main goal in AS is to control the pain.  Trying to minimize the damage as much as they can is important, but that it might not be possible.  Idk if I just have had dreary doctors tho, lol.
 
Myself, I started to do well with Humira but had an allergic reaction so had to stop =(  I'm allergic to Enbrel and Remicade as well.  Methotrexate did not help me at all, and damaged my kidneys even tho I always had my blood tests.  I think it must help some people, though, or they wouldn't use it.   I also am allergic to sulfa so can't have sulfasalazine.  So now I am on prednisone, because in the past high doses I took for other diseases helped my spine as well.  It's not doing much because I Know  I'm not on enough, but try explaining that to a doctor lol.  (whiney sidenote--for some stupid reason, all prednisone tablets made in the USA have lactose in them.  I am allergic to milk, so I cannot take them.  Why why why put a common allergen in a drug frequently used for allergies?  I have to take these nasty grape-flavored dissolvable children's pills that are way more expensive. Whiney rant over now  smilewinkgrin ) I guess that exercises like swimming are supposed to help the pain, even though it is hard to start going *because* of the pain.  I am kinda scared to move too much, because I hurt so much.  My doctors have also told me that it sometimes stops hurting so much after about age 50.  I sincerely hope they are right, but that still leaves me with 19 more years!

edited to take off the way out-of-date signature lol


The Reverend
Regular Member


Date Joined Apr 2009
Total Posts : 66
   Posted 5/15/2009 4:14 AM (GMT -7)   
Hi Butterflygrrrl, It has been a struggle and when I think I am finaly in control something new turns up and it all starts again. That is the first time I have heard of the pain easing off after 50 years of age as my rheumy and doc said I would end up in a wheel chair by the time I'm forty, interesting though, did he give you any proof of what he was saying?

Oh and about that wheel chair thing, not until I'm totaly done because when we give up it will get us so keep up the fight.

Water activity is one of the most positive exercises as it takes weight off your joints so there is less chance of pain but I do understand what you mean it is not the motivation it's trying to move with the pain. The mind is willing but the body ain't so sure.

Thanks hope to talk again soon.
Someone started it someone will end it, we must endure till the end

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