Side Effects of Prednisone

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bananagirl
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Date Joined May 2011
Total Posts : 4335
   Posted 6/3/2011 7:36 PM (GMT -6)   
I'd like to know your experience with prednisone. I've tried most of the 5 ASAs with no help. My doctor wants me on prednisone but I'm terrified of the side effects (hair loss, moon face, acne, weak immune system, joint problems, and every other darn thing). I'm also curious if you had to take it more than once.

I'm not into medications but by not taking anything, my family is falling apart. I get flack for this at least 10 times a day about how I am letting myself die away in my bed and it would all be solved with Prednisone. My parents assume it's a miracle drug and can't see why I don't want to take it.

If I could move out just so I don't have to hear them anymore, I would, but I am not capable of working (was a personal trainer/fitness instructor) so I don't have an income.

Any advice/thoughts?? shakehead shakehead
Diagnosed with Proctitis at 17.
Diagnosed with Ulcerative Colitis at 21 (Jan 2011).
Not on any medications. Did use Mesalamine enemas, Sulfasalazine enemas, and Lialda pills- all worsened my symptoms
Current supplements every day:
2-4 oz aloe vera juice
1 tablet- 1 billion acidophilus
1 capsule Garden of Life Raw Vitamin Code Women's Multi Vitamin
3-6 capsules MucosaHeal
1/4 tsp L-Glutamine

MotherofTeenwithNoUC
Regular Member


Date Joined Mar 2011
Total Posts : 225
   Posted 6/3/2011 8:03 PM (GMT -6)   
Bananagirl,
While I am also a new member on this website, and am by far, NOT as experienced as most on here, I can tell you that Prednisone has helped my son get past the worst parts of this disease so far.   He is 14 and was diagnosed in February of this year.  He started out after leaving the hospital in February, on 50 mg a day, then was weaned down to 40 mg, 30mg, 30 mg 20mg to eventually 5mg a day from March until May.   He was doing fine and in May had a flare up.   they boosted him back up to 40 mg a day and it took about 10 days until we started seeing some improvement.   He had developed "moonface" but he was always so thin that it actually looked like he had put on a little "good" weight, and that eventually went away.  He also developed some acne, but we were able to keep that under control after seeing his dermatologist.   And to be honest, the acne was easier to deal with  than the pain and cramping that he had been dealing with. It's like trying to figure out what it the lesser of two evils.    At least he was able to be out with his friends instead of house bound to the bathroom.   He is also on VSL#3DS.  you mentioned that you take acidophilus 1 billion.   The VSL#3DS is 900 billion good bacteria per sachet.  He takes 1/2 a sachet per day mixed in with his gatorade.
 
While I was not an advocate of him being on Prednisone, for just the reasons that you noted,  it definitely has shown its benefits.   My understanding (although I am still learning a lot about this disease) is that it is used to get the conditon under control and reduce the inflammation. Not sure that I would want to see him on it long term and the Dr has already told us that his condition is steriod dependent.  
Whatever you decide, I hope that you feel better soon.  I would also be interested in hearing whether or not any of the other meds and supplements that you are taking have been beneficial to you.
 
Stay strong!!  :-)  
 
 
MotherofTeenwithUC
14 yr old male, Diagnosed February 2011. In remission 3 months but currently have flare-up.
_Asacol 800HD 2 tabs 3X day- NOW CHANGED to Colazal 2 tabs 3x day
Flaggyl 3 X day
Prednisone 40 mg
6mp 75mg
Folic Acid
Poly-Iron 2 xday
Pepcid 20 mg, 2 x day
Levsin .125mg 2 tabs every 6 hours for cramping

Shanbee
New Member


Date Joined Dec 2010
Total Posts : 17
   Posted 6/3/2011 8:23 PM (GMT -6)   
bananagirl:
Prednisone will most likely be temporary, but it does have its side effects. I developed a weak immune system, moonface, and the first time i was put on it made me eat all the time. but it is a wonderful drug and takes the pain away. all drugs you take have harmful and unwanted side effects but you will feel so much better and be living your life. Once you are off predniose the moonface will go away and most side effects are reversable. For your immune system take vitamins and prednisone can cause low bone mass which if you take vitamins and intake calcium you will do okay.

Hope you feel better!
Female who battled UC for 5 years
2006- diagnosed with crohns/2008- diagnosed with UC/2010- servere flare-up no medication helped.

Dec 14, 2010- ileostomy (removal of entire colon, age 20)
May 12, 2011- j-pouch formed (age 21)
June 29, 2011- planning the take down (age 21)

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 9995
   Posted 6/3/2011 8:34 PM (GMT -6)   
bananagirl, I jsut finished a long course of prednisone and I had a lot of side effects. While I was miserable with the side effects, if you can get on and off in a relatively quick course, you probably won't experience too many side effects. My intent was to be on pred for a couple months but I couldn't taper down without having my symptoms return. eventually I had to add 6mp and wait months, on pred the whole time, for 6mp to start helping my immune system to regulate. I still have some noticible side effects from being on the drug for so long (weight, moonface and joint aches). It is awful but it's better than feeling like I am not capable of doing anything. You have to do something to stop this flare. You probably only have 2 options according to your GI, prednisone or Remicade. Would you prefer to try Remicade and possibly avoid prednisone? I didn't really have acne or weak immune system, I didn't get sick the whole time I was on prednisone. I am not saying you should do it or not do it, you have to do what is right for you. Maybe if I went back in time, knowing what I know now, I may have opted to try Remicade and get off prednisone faster. I would have maintained my figure and it looks like I am headed in that direction regardless. It did buy me some time for which I am thankful.
Co-moderator: Ulcerative Colitis
Diagnosed with Pancolitis & Migraines. Battling Extreme Exhaustion | Past Meds: Prednisone + Cortifoam + Asacol (3600) + Canasa + Rowasa + 6mp + Allopurinol
Currently: Asacol (3200mg) + 6mp

AMK77
Veteran Member


Date Joined Mar 2008
Total Posts : 678
   Posted 6/3/2011 8:49 PM (GMT -6)   
The 2 times that I have been on pred it was only for 3 weeks. The first time I took it I barely had any side effects, maybe a little hyped up for a while after I took a dose.

The 2nd time I took pred I ended up getting really anxious and depressed. I had a toe fungus grow out of control and I got oral thrush. BUT, both times the pred got me into remission in 2 days. You just never know how the pred is going to affect you. I say it's worth a shot - good luck!
Amy
33 yr old female, mommy to 2 girls
2/08 Mild Pancolitis/ 4/10 scope showed almost normal colon!
UC since 2000/Dx'd 2008
Cannot tolerate mesalamine. Currently take probiotics, fish oil & various Standard Process supps. Cut out soda drink green tea. Applied Kinesiology & Reiki.

SADMANGO
New Member


Date Joined May 2011
Total Posts : 5
   Posted 6/4/2011 3:11 AM (GMT -6)   
Hey banana,
I was on Pred a couple of months ago, for about 1 month. I was completely terrified of taking it cause of all the side effects you hear about. But my doc put me on a small dose for a short time and I had no side effect on the outside, and none to speak of on the inside (that i know of). I am taking Salofalk (asa) and was bleeding alittle everyday and it seems the pred "cured" it. I had an amazing result with pred. I hope to god i will never have to take it again tho! Sorry to hear about your problems, but i say give it a try, or you'll never know...

tank89
Regular Member


Date Joined Feb 2011
Total Posts : 213
   Posted 6/4/2011 5:50 AM (GMT -6)   
I get moon face, extreme bloating/water retention around stomach etc i.e. pregnant belly. Some acne flare ups but nothing horrendus. V sore joints and pains etc, oh and it wrecked my endocrine system.

RinnieJoy
New Member


Date Joined Jun 2011
Total Posts : 5
   Posted 6/4/2011 6:51 AM (GMT -6)   
Hi Banana girl!  I'm on prednisone right now, and yes I have a lot of symptoms that are driving me nuts!  For me personally, I have not seen an improvment in my flare-up symptoms as a result of being on prednisone.  So I am currently keeping a food-diary and trying to get serious about healing through changing my diet.  It sounds like a lot of other people have experienced relief through prednisone, and maybe everyone responds differently.  But definitely continue to seek treatment, whether through diet change or meds, don't give up!

mari68
Regular Member


Date Joined Aug 2010
Total Posts : 65
   Posted 6/4/2011 6:56 AM (GMT -6)   
Hey, I was put on prednisone after my last 2 flares that resulted in me being hospitalised. Whilst the 1st time I went into remission after about a month the 2nd time I was on prednisone for 8 months! I had the usual side effects, but all the GI"s and GP's I've seen say that although helpful in the short term the long term effects can cause problems with every part of your body. They all recommended Imuran or a 6mp. Have you tried these?
I was reluctant to try these, and although I'm currently in remission (touch wood), I will start Imuran in the coming weeks to try and keep this disease at bay.
good luck with your decision.

bananagirl
Veteran Member


Date Joined May 2011
Total Posts : 4335
   Posted 6/4/2011 11:09 AM (GMT -6)   
thanks for all the replies! you've given me a lot to think about. the only thing my doctor recommended to me was prednisone so i don't know of the other medications i could take. he's pretty "my way or the highway" when it comes to drugs and doesn't give me a choice on what to take. i'm hesistant because he said he wants me on a 5 ASA when i'm done the prednisone even though i had such bad reactions.

i didn't mention this earlier but the last time i took prednisone, i had an allergic reaction and ended up in the hospital. my doctor says that he'd rather risk it because the benefits of the drug are so positive. i just don't want that to happen again!
Diagnosed with Proctitis at 17.
Diagnosed with Ulcerative Colitis at 21 (Jan 2011).
Not on any medications. Did use Mesalamine enemas, Sulfasalazine enemas, and Lialda pills- all worsened my symptoms
Current supplements every day:
2-4 oz aloe vera juice
1 tablet- 1 billion acidophilus
1 capsule Garden of Life Raw Vitamin Code Women's Multi Vitamin
3-6 capsules MucosaHeal
1/4 tsp L-Glutamine

Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5453
   Posted 6/4/2011 12:09 PM (GMT -6)   
     Have you ever considered another opinion?  My GI doctor was also, my way or the highway.  After twelve years of "his way" and becoming prednisone dependent, which gave me osteoporosis, high blood pressure and high glucose levels, Remicade (which failed after third infusion) and Humira (no change after three months)....I decided it was time for "my way".  I did consult with two other GI docs over the course of the twelve years but they all seemed to agree with the treatment options I was receiving.  So, last year I sought out a top colorectal surgeon and had a total colectomy with end ileostomy last June 28th. 
     If you are not happy with your treatment, seek another opinion and a third opinion if necessary.  Good luck to you.

wrxBRAH
Regular Member


Date Joined Mar 2008
Total Posts : 312
   Posted 6/4/2011 12:37 PM (GMT -6)   
Long term prednisone user here. roughly 7+ years. Im active, lift regularly and work full time but I would not recommend going on prednisone. If I had a redo, Id have gone on Remicade right away or surgery.

The side effects are that severe for me and some of them feel permanent. Everyone is different though.
Male 31yrs old Bay Area, California
Currently taking:
Prednisone - 2.5mg
Asacol - 4800mg
Remicade since Feb 2010

bananagirl
Veteran Member


Date Joined May 2011
Total Posts : 4335
   Posted 6/5/2011 8:08 PM (GMT -6)   
this has been really helpful for me. today has been such a bad day- in the bathroom probably 30 times and just miserable. i've been down to maybe 500 calories a day for the past few months so i guess the weight gain would not be a negative. i could really put on a few. i am just so starving and want to eat a meal without it going through me in 10 minutes. i've decided to start the prednisone tomorrow because i just can't live like this.

the prescription has been in my medicine cabinet for a week and i've just been dreading it. it's 8 weeks long and i'm just really scared. i feel like i'm just so sad at this point that it can't get any worse. i'm too weak to do anything- standing takes A LOT of effort.

i'll keep updating on here to let you know how it affects me. my main goal is being able to go for a walk again!!! it's been 3 months since i could go walking somewhere, so i'm praying that the pred. will ease my symptoms- even just a little.
Diagnosed with Proctitis at 17.
Diagnosed with Ulcerative Colitis at 21 (Jan 2011).
Not on any medications. Did use Mesalamine enemas, Sulfasalazine enemas, and Lialda pills- all worsened my symptoms
Current supplements every day:
2-4 oz aloe vera juice
1 tablet- 1 billion acidophilus
1 capsule Garden of Life Raw Vitamin Code Women's Multi Vitamin
3-6 capsules MucosaHeal
1/4 tsp L-Glutamine

bananagirl
Veteran Member


Date Joined May 2011
Total Posts : 4335
   Posted 6/5/2011 8:22 PM (GMT -6)   
ahh and this just came to my mind. did you guys still take your supplements when on prednisone? i've heard calcium is good to take so i plan on continuing my multi vitamin.
Diagnosed with Proctitis at 17.
Diagnosed with Ulcerative Colitis at 21 (Jan 2011).
Not on any medications. Did use Mesalamine enemas, Sulfasalazine enemas, and Lialda pills- all worsened my symptoms
Current supplements every day:
2-4 oz aloe vera juice
1 tablet- 1 billion acidophilus
1 capsule Garden of Life Raw Vitamin Code Women's Multi Vitamin
3-6 capsules MucosaHeal
1/4 tsp L-Glutamine

cjgk
Regular Member


Date Joined Apr 2011
Total Posts : 117
   Posted 6/5/2011 8:40 PM (GMT -6)   
It sounds like you are making the right decision. It sounds like things are really bad for you right now, and the pred might really help. I just finished an eight week course of pred. I did experience most of the side effects: moon face, weight gain, insomnia, mood swings, etc. But I also started feeling much better. My symptoms improved slowly, but after about two weeks, I was feeling almost normal. I hope not to have to use it again, but I guess I would as a last resort before moving on to any other stronger immunosuppressants.

I am not taking a lot of supplements at this time, but I did up my calcium and continue taking everything else as usual.

I hope things improve quickly for you and you don't experience a lot of side effects or any other kind of reaction. Good luck.
Dx 2007
Prednisone now down to 10 mg
Rowasa nightly
VSL#3DS, fish oil, calcium, multivit

RinnieJoy
New Member


Date Joined Jun 2011
Total Posts : 5
   Posted 6/5/2011 9:14 PM (GMT -6)   
Happy to hear that you have hope! Just since joining this forum yesterday...along with doing some major research (and praying) in the past 24 hrs, I've decided to take some supplements. I probably should be getting some expert advice from a nutritonist, but for now I'm relying on my own research (my doc hasn't been at all helpful in this area). Anyway, I read that people on prednisone are likely to become vitamin D deficient, so you may want to consider that. After one week of eliminating cow's milk from my diet, I've seen a slight improvement in my flare-up. So just today I bought a calcium/vitD combo pill. I also picked up a probiotic/mulitvitamin combo and a krill oil supplement. I'm six wks into a 12 wk prednisone plan...so I'll keep you posted on how it goes w/ these supplements!
Female, 32yrs, diagnosed w/ UC in 2010.
Currently on Asacol and Prednisone (after failing to respond to Canasa and Rwasa Enema). Current flare-up since end of Jan. 2011.

bananagirl
Veteran Member


Date Joined May 2011
Total Posts : 4335
   Posted 6/7/2011 10:13 AM (GMT -6)   
all right. well, i've taken 50 mg so far and let me just say that i think i'm going insane. i've been awake for over 30 hrs, my tongue is all bloody, im dripping in sweat- but it's freezing in my house, and i feel like i'm having out of body experiences. it's really strange. i didn't think it would mess with my head but i'm really anxious and agitated about EVERYTHING. i almost chopped off all of my hair during the night because of the sweat and stickiness of it and i was obsessing over rearranging my room around 3 am. i moved into the office around 7 am because my whole room lacks balance. i can't explain it. i just need to take everything off the walls and move things around because it's just not working.

ok. still haven't been able to eat yet due to my stomach pains and tongue problems. hoping the pred. will help with that eventually. do any of you guys know good meal replacement shakes?? i need something high calorie with a lot of nutrients. i'm lactose, soy, and gluten intolerant so it makes finding stuff really difficult.
Diagnosed with Proctitis at 17.
Diagnosed with Ulcerative Colitis at 21 (Jan 2011).
Not on any medications. Did use Mesalamine enemas, Sulfasalazine enemas, and Lialda pills- all worsened my symptoms
Current supplements every day:
2-4 oz aloe vera juice
1 tablet- 1 billion acidophilus
1 capsule Garden of Life Raw Vitamin Code Women's Multi Vitamin
3-6 capsules MucosaHeal
1/4 tsp L-Glutamine

Lu2011
Regular Member


Date Joined Apr 2011
Total Posts : 291
   Posted 6/7/2011 11:35 AM (GMT -6)   
I was on prednisone many years ago when my UC was active. was on a relative high dose and the main side affect I remember is that I was starving, which is ironic as the last thing you want to do is eat when it gives you so much pain.
Ulcerative Colitis 1988, had colon removed and now jpouch
Now sufer from sacroiliitis and inflammation of piriformis muscle causing sciatica like pain during flare ups. Joints very bad...take celebrex when needed.

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 9995
   Posted 6/7/2011 2:14 PM (GMT -6)   
banana that sounds really terrible. I was moving during my first few days on a high dose of pred. I was so focused on getting stuff packed and making car trips, I was actually more productive. Perhaps you need to find a project to occupy your energy and time. I don't think the tongue thing is normal and it worries me. Maybe you should call your GI and ask about that.
Co-moderator: Ulcerative Colitis
Diagnosed with Pancolitis & Migraines. Battling Extreme Exhaustion | Past Meds: Prednisone + Cortifoam + Asacol (3600) + Canasa + Rowasa + 6mp + Allopurinol
Currently: Asacol (3200mg) + 6mp

UlcerativeKaleidoscope
New Member


Date Joined Jun 2011
Total Posts : 2
   Posted 6/8/2011 11:02 PM (GMT -6)   
Hey Banana,
This has got to be so hard for you right now. You can do it, though! Try some deep breathing and meditation if you can. Drink A LOT of water. I have been in the same boat as far as dreading the prednisone. I have had no other choice several times since my diagnosis, and it has worked/ *eventually* gotten the inflammation down. For now, focus on getting this to a manageable state. Once you get there, and are healthier, maybe you'll be able to find another GI doc (I myself went through several to find someone who I felt comfortable with), and if not, then at least be able to research diet, supplements and other alternatives.
The point is, Yes, prenisone side effects blow, but the drug has worked for me, and gotten me to a place where I could at least make progress.
You'll get through this, just be sure to keep in touch with your doc, I agree with Notsosickly, let 'em know all of your symptoms because your tongue doesnt sound so good.
Don't forget, deep breaths :)
Diagnosed with Ulcerative Colitis in 1999
Currently treating with: Acupuncture, Chinese Herbs, L-Glutamine, PreBiotic: Arabinogalactan, ProBiotic, Omega-3.
Used in past: Asacol, Prednisone, Rowasa, Mesalamine
3 first-cousins have Crohn's

bananagirl
Veteran Member


Date Joined May 2011
Total Posts : 4335
   Posted 6/8/2011 11:05 PM (GMT -6)   
i am gonna stop taking it tomorrow. i cannot take it anymore without going completely insane. the swelling in my ankles and knees is beyond painful and i am getting the most insane cramps i've ever had. i am just so upset that my mom forced me to take it.
Diagnosed with Proctitis at 17.
Diagnosed with Ulcerative Colitis at 21 (Jan 2011).
Not on any medications. Did use Mesalamine enemas, Sulfasalazine enemas, and Lialda pills- all worsened my symptoms
Current supplements every day:
2-4 oz aloe vera juice
1 tablet- 1 billion acidophilus
1 capsule Garden of Life Raw Vitamin Code Women's Multi Vitamin
3-6 capsules MucosaHeal
1/4 tsp L-Glutamine

RinnieJoy
New Member


Date Joined Jun 2011
Total Posts : 5
   Posted 6/9/2011 4:23 AM (GMT -6)   
Make sure you tell your doctor you're planning to stop...from what I've read you still need to taper down because I guess it can can cause some other serious side effects if you just stop suddenly. Also, as mentioned in some previous posts...maybe you should ask about doing the Remicade treatment instead.
Female, 32yrs, diagnosed w/ UC in 2010.
Currently on Asacol and Prednisone (after failing to respond to Canasa and Rowasa Enema). Current flare-up since end of Jan. 2011.

bananagirl
Veteran Member


Date Joined May 2011
Total Posts : 4335
   Posted 6/9/2011 6:38 AM (GMT -6)   
thanks rinnie, i am just feeling terrible and i can't take this again. i have not slept in i can't how long. my doctor is only in the office once a week (wednesdays) so i'm waiting for the pharmacy to open so i can ask them if it's okay to stop. i figure since it's only been 40 mg for 3 days that my body isn't completely hooked on it yet.
Diagnosed with Proctitis at 17.
Diagnosed with Ulcerative Colitis at 21 (Jan 2011).
Not on any medications. Did use Mesalamine enemas, Sulfasalazine enemas, and Lialda pills- all worsened my symptoms
Current supplements every day:
2-4 oz aloe vera juice
1 tablet- 1 billion acidophilus
1 capsule Garden of Life Raw Vitamin Code Women's Multi Vitamin
3-6 capsules MucosaHeal
1/4 tsp L-Glutamine

Peace&Harmony
Veteran Member


Date Joined Jul 2010
Total Posts : 1103
   Posted 6/9/2011 7:04 PM (GMT -6)   
Wow! That's no way to treat someone! I too was in tears over starting Pred...especially since I also have a history of being very sensitive to these drugs! ...but now the choices are down. Pred or Remicade...which is the lesser of the two evils? I figure Pred would be short term and if it works, get me out of this flare so I can continue on LDN! Can't do Remicade and LDN as they cancel each other out.

I started Pred this past Sat, June 4th. I think the hardest thing was getting over the first dose..consider my first dose of Asacol left me bed ridden all day! Now I'm learning to take it one moment at a time. Learning how to deal with the side effects. amazingly enough the Hydrocortisone enema hit me fast and hard....it seems the Pred it taking it's time. I'm now day 6 and my ankles are just starting to swell up, but my stools seem to be improving. Also learning to deal with the acid built up in my tummy at night.

It's a tough call and people shouldn't be so insensitive...but it all due to their ignorance. Yea...I hear of Pred being use for lots of stuff but not at our dose level! It's up to you to make the call and your family should be supporting you either way. The important thing is to get out of a flare asap. The longer you're in the harder it will be!

Have you research other options such as Entocort, Budesonide enema/suppositories/LDN or get a full work up at Mayo Clinic? I've done all that and it helps to have th full understanding of your current condition and choices.

---------------------------

Just read the posts...so you started. Did you stop yet? Sounds like you got forced into taking it. That's the worst thing anyone could do! You got to go in with the right mind set. Please drop us a post and let us know how you're doing. I'll be praying for you!!!
Diagnosed July 2010
flaring as Jan 2010
As of 5/25/2011 procitis is now pancolitis!!
Pred 40mg, started 6/4/2011
Transdermal LDN 4.5 mg 4/23/2011
Energy Multi-Plex / Vital-Zymes Complete / Microgestin (birth control), Magnesium for leg cramps

Post Edited (Peace&Harmony) : 6/9/2011 6:13:13 PM (GMT-6)


bananagirl
Veteran Member


Date Joined May 2011
Total Posts : 4335
   Posted 6/10/2011 12:39 PM (GMT -6)   
i stopped taking it yesterday! i couldn't walk because my legs and ankles were in so much pain. i figured taking more would just make the fluid retention even worse. i wish i could post pictures on here because i literally could not see my ankles or knees. i called my friend, who is a pharmacist, and he said that it takes 1-2 weeks for the adrenal glands to lessen their production of cortisol and that there was no danger in stopping after 3 days. he said it was actually safer to just stop than to taper it. so that's what i did and my legs feel so much better today. i can bend them again and i actually got about 4-5 hrs of sleep last night!

i'm going to see a new doctor next wednesday (thank god) so i am curious to see what medications she will talk to me about. my friend was telling me about another steroid called methylprednisolone and says that people don't experience as many of the side effects as prednisone users do.
Diagnosed with Proctitis at 17.
Diagnosed with Ulcerative Colitis at 21 (Jan 2011).
Not on any medications. Did use Mesalamine enemas, Sulfasalazine enemas, and Lialda pills- all worsened my symptoms
Current supplements every day:
2-4 oz aloe vera juice
1 tablet- 1 billion acidophilus
1 capsule Garden of Life Raw Vitamin Code Women's Multi Vitamin
3-6 capsules MucosaHeal
1/4 tsp L-Glutamine
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