Deb McG - how's it going on 6-MP?

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HIT4NOW
Regular Member


Date Joined Jul 2007
Total Posts : 160
   Posted 9/10/2007 9:32 AM (GMT -7)   
Hi Deb (and anyone else who wants to share their 6-MP experience!)
How was your GI appt. on Friday?  I had an appt. with my GI guy on Fri. also.  I seem to be doing well on the 50 mg. of 6-MP so far (no flaring! yeah!) and am still weaning slowly off of the Prednisone.  I am on 10 mg. this week, will taper to 5 mg. next week, then stop.  I am crossing all fingers and toes that I don't start to flare once the Pred stops!!  My headaches seem to be milder too - whew!  In a few minutes I am leaving to go take a treadmill stress test (unrelated to the UC - it's my GP ordering it ) - my blood pressure is still too high even though I am taking medication for it.  I want to blame the Pred for that too!
Please let me know how you are doing!!!
 
Stacey
dx w/UC (pancolitis) March '06
Colazal 750 mg x 9 capsules daily
now on Prednisone, 10 mg. daily
started 6-MP 8/13/07 (50 mg. daily)
Probiotics (Primadophilus Reuteri)
dx w/Type 2 Diabetes Nov. 2002
Glipizide 5mg. x 2 daily,Caduet 5/10 mg. daily, Micardis 80 mg. daily, multivitamin + calcium daily and one baby aspirin, CinndromeX (4 daily)

Deb McG
Regular Member


Date Joined May 2007
Total Posts : 33
   Posted 9/12/2007 8:34 AM (GMT -7)   

Hey Stacey,

Glad to hear you are doing well.  I'm sorry not to respond sooner but I haven't been in here in a few days.  My appointment on Friday went well,  My doctor said my bloodwork was good and that I could drop by Prednisone from 30 mgs to 20 mgs for then next month and then I'll see him again. If all continues as it is, he'll drop the Prednisone again.  My headaches are much better finally but I'm still drinking tons of water.  I know my doctor is being very cautious in getting me off the steroids to fast as we've had problems with that in the past.  He really wants to take it slow while the 6MP is building up in my system and hopefully that will keep me from flaring again. 

Good luck on your "treadmill" test.  My doctor did say to me one time that the Prednisone can have a little impact on blood pressure so hopefully that's all it is and once you get down/off, it'll have a positive impact. 

Stay in touch to let me know how you're doing.

Deb McG


UC - 20+ years
6 MP
Asacol
Prednisone (UGH)
Canasa
Folic Acid/Calcium/Magnesium


HIT4NOW
Regular Member


Date Joined Jul 2007
Total Posts : 160
   Posted 9/18/2007 8:15 PM (GMT -7)   
Hi again Deb,
I am relieved and happy to hear that you are still doing okay despite still being on the Pred (ugh!)  Do you feel like the 6-MP is truly helping you? 
I sure hope so!  I am still feeling good as far as the UC goes - no recent flaring - I am hoping it's the 6-MP that's doing its job!  I am on my final (I hope) week of the Pred now - only on 5 mg.  The last week or so I have been feeling extremely fatigued though - I'm assuming it's the 6-MP along with the Pred tapering.  How is your energy level?  Do you know if fatigue is a side effect of the 6-MP?  The last couple of weeks I've been so distracted also - I think my 18 yr. old son has Celiac disease - I've been doing alot of online research and have started him on a gluten free diet.  The "fun" never ends, does it? I have made an appt. for him w/my GI doc next Friday.  Sigh.........
Please update whenever you get a chance!!!!
 
Take care,
Stacey
dx w/UC (pancolitis) March '06
Colazal 750 mg x 9 capsules daily
final week on Prednisone, 5 mg. daily
started 6-MP 8/13/07 (50 mg. daily)
Probiotics (Primadophilus Reuteri)
dx w/Type 2 Diabetes Nov. 2002
Glipizide 5mg. x 2 daily,Caduet 5/10 mg. daily, Micardis 80 mg. daily, multivitamin + calcium daily and one baby aspirin, CinndromeX (2 daily)
 

Deb McG
Regular Member


Date Joined May 2007
Total Posts : 33
   Posted 9/25/2007 8:02 AM (GMT -7)   
Hey Stacey,
So far, everything seems to be going okay. My UC seems to be staying under control but the side effects of the Prednisone are killing me. My face had "mooned up" beyond belief, I can't stand to even look in the mirror. My face is so puffy it actually hurts a bit. (At least I don't have any wrinkles right now!!) I wasn't supposed to drop the Predisone until my visit next week but I just went from 20 to 10 starting yesterday because I just can't take it anymore. It's bothering my eyes and I have horrible leg cramps at night, which of course means, not much sleep. I have to have my blood tested later this week and then I see the doctor next week. I'm feeling pretty confident that it's doing what it should be but until I'm totally off the Prednisone, how can one really tell. I have periods where I feel more tired than normal, but with two boys running around and a crazy job, it's hard to know if it's just that I'm just plain old regular tired.

Glad to hear you're holding your own and good luck to your son. I just recently meant someone with Celiac disease and they're doing the glutten-free thing and are doing really well.

Stay in touch,
Debbie
UC - 20+ years
6 MP
Asacol
Prednisone (UGH)
Canasa
Folic Acid/Calcium/Magnesium


HIT4NOW
Regular Member


Date Joined Jul 2007
Total Posts : 160
   Posted 9/26/2007 7:57 PM (GMT -7)   
Hi again Deb,
Okay - so we're both "hanging in there"!  Whew!  I just want to say be careful how you taper that Prednisone - my doc always has me taper by only 5 mg. per week and I know you just dropped 10 mg.  Make sure you let your dr. know what you're doing - just in case - I know how horrible you feel but that Pred is nasty stuff and tapering too quickly can really cause problems.  I hope you are still feeling good?!  I finished the Pred on Monday - took my last 5 mg. and am still feeling okay - like you said, I guess I'll find out soon here whether or not the 6-MP is working!  I saw my GP on Monday too and she said I've gained almost 20 lbs.!  UGH UGH UGH - so I'm hoping to lose some weight over the next few months like I did last time I was on the Pred.
I am still really really tired.........but I have two active teenage sons and they keep me busy too, and I also work full time - so like you said, maybe it's just "life"!  Sigh.............
I recently freaked out reading some people post on here about their hair loss due to the 6-MP and other UC drugs.  I keep checking, and I still think the amount of hair I am losing is still normal.  How about you?
My 18 yr. old will see my GI guy this Friday.  I'll let you know what happens.  So far he does seem to feel better on this gluten-free diet.
Take care and please keep me posted whenever you can!!
 
Stacey
dx w/UC (pancolitis) March '06
Colazal 750 mg x 9 capsules daily
FINISHED the Prednisone 9/24 - finally, after 3 mos.
started 6-MP 8/13/07 (50 mg. daily)
Probiotics (Primadophilus Reuteri)
dx w/Type 2 Diabetes Nov. 2002
Glipizide 5mg. x 2 daily,Caduet 5/10 mg. daily, Micardis 80 mg. daily, multivitamin + calcium daily and one baby aspirin
 
 

redplum
Regular Member


Date Joined Sep 2007
Total Posts : 49
   Posted 9/26/2007 10:09 PM (GMT -7)   
Hi Deb and Stacey,

I am so glad to hear that you two are doing okay as you taper off the prednisone. I have had ulcerative colitis for 20 years now.
My GI has been asking me to go on 6mp for the last 3 years; however, I am very scared. I also have two boys, 4 and 7. I know that this drug has many side effects and I am afraid to try it. If the side effects are severe, then I don't think that I will be able to take care of them and run them around. Currently I am on budesonide enemas. I have been using them for the last five years, along with some Chinese formulas. I go around three times a day. Sometimes a little more. The enemas only get the left side, and I have pan colitis. How did you guys find the courage to try such heavy duty drugs.-you are quite brave I must say. Any insight from you would be greatly appreciated.

Also, 5asa's are not an option for me. Azufidine gave me a kidney reaction called Minimal change disease, and Asacal and Colozal gave me pancreatitis.

It is great reading everyones experiences with this disease and the medications. It is nice to know that there are actually others like myself out there. It is very kind of everyone to open up so much.

Thank you,

red plum

HIT4NOW
Regular Member


Date Joined Jul 2007
Total Posts : 160
   Posted 9/26/2007 10:36 PM (GMT -7)   
Hi there red plum,
I am so glad that you joined in! Welcome to the group! I can't speak for Deb, but you know how they say "ignorance is bliss"? Well that sort of explains my "courage" as far as starting the 6-MP.
Kinda pathetic, huh? My dr. told me to try it, so I did! Actually, I was at the point where I was sick and tired of flaring - I had been on a 3 mos. continuous flare - and I was probably ready to try anything to make it stop! At that point I was in the bathroom at least 15 times a day and practically unable to leave the house! Also, I wasn't fearful of 6-MP because it was one of the drugs that saved my youngest son's life - he was dx with Leukemia at age 8 (he is now a healthy high school Sophomore) and he did well with it - so I kind of had a familiarity with it. Knock on wood, so far so good.........but ya never know.
It sounds like you are actually doing quite well on the enemas (which, sorry, I've never heard of) and your Chinese formulas - can I ask what those might be? I have only used the Rowasa enemas on the nights I had been badly flaring.
Best wishes to you and please continue to chime in any time!!

Stacey
dx w/UC (pancolitis) March '06
Colazal 750 mg x 9 capsules daily
FINISHED the Prednisone 9/24 - finally, after 3 mos.
started 6-MP 8/13/07 (50 mg. daily)
Probiotics (Primadophilus Reuteri)
dx w/Type 2 Diabetes Nov. 2002
Glipizide 5mg. x 2 daily,Caduet 5/10 mg. daily, Micardis 80 mg. daily, multivitamin + calcium daily and one baby aspirin

redplum
Regular Member


Date Joined Sep 2007
Total Posts : 49
   Posted 9/27/2007 1:54 PM (GMT -7)   
Hi Stacey,

Thank you for the Welcome. I can understand how you must have felt. If I were in the bathroom 15 times a day, then I would try the 6mp as well. I was going around 10 times as well before starting the enemas. It is great that you doing ok on it so far. I hope it works for you. It must have been difficult to deal with your son's Leukemia. I so glad he is a healthy child now. Possibly, he is the real brave one.

The budesonide enemas are actually a steriod. However, the liver metabolizes the budesonide quickly, so there is little absorbtion. There is also entocort, which is the budesonide pill used for chrohns in the illeum. I have been on the enemas for 5 years now, and it really only gets the left side of my colon. The rest of it is stays moderately inflammed. Since the rectum is healthy I don't get several bad urges--though I do have to run to the bathroom quickly to prevent accidents. My GI is afraid that the budesonide does absorb a little over the years, so continued use over many years is not good. The chinese herbs are formulas given to me by my accupucturist. I have been on them for 8 years. I think they just make me feel better, however they do not heal the ulcerations in the colon. One of the formulas is for my spondylitis--it is a combination of ginseng and other herbs to promote circulation. The other is a mild formula of 5 different herbs that aid in digestion. If you are interested, I can give you the Chinese names for there is no english names on the bottles. Let me know.

I will stay in tune with you guys to see how you are doing on the 6mp. Keep us posted.

Regards,

red plum

HIT4NOW
Regular Member


Date Joined Jul 2007
Total Posts : 160
   Posted 10/2/2007 7:28 PM (GMT -7)   
Hey Deb -
R U out there?
Hope all is well......................I've had a new "symptom" come into play recently and I wondered if you (or anyone else) had this happen?  UC-wise, I still feel great (knock on wood!) NO flaring whatsover!  However, I have an itchy rash under my arms and spreading to my chest/neck area.  It almost looks like hives - small red itchy bumps.  It started and is most prevalent under my arms - not in the pit/hair growth area, but outside/surrounding that area. I'm wondering if it could be the Pred working its way out my system?  Or a side effect to the 6-MP?  Or ???  I would appreciate any thoughts you might have!  I am going to post a general question on a new topic so hopefully others will read it and give me some insight.
Hope "no news is good news" and you are doing just fine!
 
Stacey
dx w/UC (pancolitis) March '06
Colazal 750 mg x 9 capsules daily
FINISHED the Prednisone 9/24 - finally, after 3 mos.
started 6-MP 8/13/07 (50 mg. daily)
Probiotics (Primadophilus Reuteri)
dx w/Type 2 Diabetes Nov. 2002
Glipizide 5mg. x 2 daily,Caduet 5/10 mg. daily, Micardis 80 mg. daily, multivitamin + calcium daily and one baby aspirin

RMA
Regular Member


Date Joined Aug 2004
Total Posts : 79
   Posted 10/2/2007 9:02 PM (GMT -7)   
Hello Stacy
my paper work for 6-mp says side effect...rash..itching...if it gets worce contac Doc or pharmacist

serious allergic reaction to this drug is rare. I have not had any problems with this...(((fill better )))
:-)
colazal 750mg 3x3 a day
mercaptopurine 50mg 1 a day
allopurinol 100 mg
rowasa enema pm
multi vitamin
folic acid
fish oil
 
dx 2004 uc
 
 


HIT4NOW
Regular Member


Date Joined Jul 2007
Total Posts : 160
   Posted 10/2/2007 9:09 PM (GMT -7)   
RMA!!!
Howdy!! It is great to hear from you!! Thanks for the info! Please tell me how you have been feeling?
Give us a little update please!

:0)
Stacey

Deb McG
Regular Member


Date Joined May 2007
Total Posts : 33
   Posted 10/3/2007 3:52 PM (GMT -7)   

Hi Stacey,

Sorry I  haven't replied sooner, I  managed to get my usual Septebmer cold, which of course I was hoping to avoid, and it's sort of knocked the wind out of me.  I'm stuffy and coughing a little and just feeling sort of yucky.  It's getting better but it has made me a tired.  I feel like I'm saying that I'm tired all the time, but I'm still managing to keep up with all my job, family responsibilities.  I've been very careful about the Prednisone weaning as I really don't want a relapse.  So far so good.  You asked if I noticed any hair loss, I don't think so.  I couple of mornings when I was combing my hair I felt like there was a little bit more than normal, but then I think, "I'm I just looking for something that's not really there?"  I haven't had any rash in my arm/chest area but I had a couple of little blemish type things on my inner thighs, but they weren't itchy and they went away pretty quickly.  I had heard about rashes, most people indicated they had rashes on their lower legs.

I had blood drawn today and I go to the doctor next Wednesday.  Hopefully he'll drop me down more on the Prednisone as I really have had enough.  I know it does work, but my face is bigger than the moon!  Someone showed me a picture of myself that was taken at a wedding I went to recently and I knew it was bad, but until I saw the picture, I didn't realize how bad.  It really freaked me out.  I know it will go away, and it's sort of vain to be upset about it, but I hate it. 

Glad to hear you're still doing well.  I'll be in touch again soon.  Keep the faith!

Debbie

 


UC - 20+ years
6 MP
Asacol
Prednisone (UGH)
Canasa
Folic Acid/Calcium/Magnesium


Deb McG
Regular Member


Date Joined May 2007
Total Posts : 33
   Posted 10/19/2007 5:21 PM (GMT -7)   

Stacey,

Sorry I've been missing lately, it has been a really crazy time.  My cold is finally getting better but seeming to take longer than normal.  I went to Michigan to visit a friend and had a mini-flare while I was there.  I think it was the stress of traveling, different food, the cold and some real stress from work.  I was down to 10 mg on the Pred, but when I came home I went back up to 15mg and it seems to be getting a little better.  My doctor said to say at 15 for two weeks, if all is well, and then try to go down to 10 again.  Hopefully I'll continue to get back on track.  My latest blood work showed a little issue with my liver enzymes but the Dr. wants to wait until next months results before he makes and decisions.  I hope it not going to be an issue as I'm praying that this 6MP is going to help me.  I hope your rashes have gotten better.  I haven't that problem. My little leg zits seem to be more a product of this crazy hot/humid weather because the zits are gone.  I feel like I'm seeing a little more hair loss than normal, but again, I also feel like I'm looking for it more. I know everyone generally sheds more this time of year.  Still the usual problems because of the Pred, but I'm hoping as I taper they'll go away.

I had to lay-off a bunch of people at work this week so that created more stress and probably didn't help with the UC, if it's not one thing it's another. 

Let me know how you're doing.  I hope all is going well.  I'm looking forward to your update.

Deb McG


UC - 20+ years
6 MP
Asacol
Prednisone (UGH)
Canasa
Folic Acid/Calcium/Magnesium


HIT4NOW
Regular Member


Date Joined Jul 2007
Total Posts : 160
   Posted 10/28/2007 11:00 AM (GMT -7)   

Greetings Deb & all,

Boy time flies!  Forgive me for this belated reply.  I got caught up w/my son's condition - don't know if I mentioned he was having stomach probs too (he's 18 and a college freshman.)  I took him to my GI doc and after an endoscopy the dx is "gastritis" (not Celiac disease as we had suspected - whew!)  Now he's on Nexium daily and feeling better. Anyone else take Nexium?

So life goes on - I have been feeling fine - knock on wood.  I've been somewhat fatigued and don't know whether or not that's a 6-MP side effect?  The rashes are gone and except for noticing my teeth are now supersensitive to cold (could that be a 6-MP side effect too?) my UC is still in remission!!  Hurray!!

How have you been feeling?  It seems like you've been on the Pred for awhile now - how long has it been?  I sure hope your cold is all gone - I do know the 6-MP suppresses our immune system so we have to be extra careful about germs, catching cold, etc.

Anyway, I hope things are better for you and again, I apologize for this late response.  Please post when you have time and let me know how you're feeling too!

Take care,

Stacey

 


Deb McG
Regular Member


Date Joined May 2007
Total Posts : 33
   Posted 11/7/2007 4:35 PM (GMT -7)   
Hi Stacey,

I'm hanging in there. My cold is finally gone although it did take a litte longer than normal to run it course, I'm feeling back to normal, if there is such a thing. I've pretty much been on Prednisone for all of this past year. I've only been able to be off it about two weeks then I've flared again. I'm down to 10mgs per day, and when I go to Dr. next week, I'm hoping he'll let me drop down again. I can't wait to be off this stuff. I hate the way it makes me look and the way it makes me feel. (Vain and asking to feel perfect!) Going for my blood work on Friday, I'm hoping my liver enzymes will have stayed the same and not gotten worse. I'm still trying to drink tons of water, but it's a full time job! I've been a little more tired, which I think is probably from the 6MP, but life has lots of bumps in the road everyday so it's hard to know. My hair seemed to be falling out a bit more than normal but that seems to be okay now, and my little leg-zit problem is gone, so hopefully it's all part of the process.

Glad to hear your son is going to be okay and that you're still in remission. I'll keep my fingers crossed for both of us and I be back in touch after my appointment next week. Stay well!


Deb McG
UC - 20+ years
6 MP
Asacol
Prednisone (UGH)
Canasa
Folic Acid/Calcium/Magnesium


HIT4NOW
Regular Member


Date Joined Jul 2007
Total Posts : 160
   Posted 11/13/2007 9:09 PM (GMT -7)   

Hi again Deb ~

It's always good to hear from you ~ I hope you have been able to continue to taper off of the Pred!! In all honesty, I have never heard of anyone staying on it for that long..........you poor thing, I can imagine how miserable you must be feeling!!  It's my understanding that my Dr. took me off the pred shortly after I started the 6-MP to see if the 6-MP would work - how would you know which one is keeping you in remission otherwise?  And for now, things are still "status quo" - no flaring here since starting the 6-MP - KNOCK ON WOOD!!!  I hope you are also feeling good!!!

I'm continuing to feel lethargic though - not to the point of not being able to work, etc. but still, it's not fun.  I've also been feeling kind of achy - especially my legs - when I get up in the a.m. but otherwise I feel fine.  I don't know if these are symptoms of the 6-MP or not.  I plan to scroll more through the forum and see if others have posted anything about this.  Have you read anything interesting from others on 6-MP recently?

Can you believe it's Thanksgiving next week already??  Where has the time gone?  By the way, which state do you live in?  I live in Nevada where we are currently having unusually warm weather - in the 80's last week!  We're all still in shorts and t-shirts so it does NOT feel like the holidays are nearing at all!!

Thank you soooooooo much for keeping in touch!!!

Take care!!

Stacey


Deb McG
Regular Member


Date Joined May 2007
Total Posts : 33
   Posted 2/5/2008 6:26 PM (GMT -7)   

Hi Stacey,

I'm sorry I sort of fell off the face of the world. It was a very busy end of 2007/beginning of 2008.  I traveled some for work and pleasure and then I had to lay-off people off the week after the holidays.  Talk about stressful.  I have had a bit of a hard time coming off the Prednisone.  I'm finally down to 5mgs, and will be here for two weeks before I step down again very slowly.  (I just love breaking those tiny pills in half!)  I seem to be doing pretty good so far.  My liver enzymes have been elevated and my doctor is hoping that once I'm off the steroids and he's sure the 6-MP is working, that he can adjust the dose on the 6-MP which should fix the liver enzyme problem.  If it's not one thing, it's another.  I just want to be off the steroids so bad, it's been almost a full two years, up and down and I really am sick of it.  I know it works, blah blah blah, but I hate them.

I'm so glad to hear that you've done well and are staying in remission.  I feel like I'm almost there but I don't feel like I can quite shout that to the world until I'm off all the steroids and just doing the 6-MP. 

You mentioned that the weather was warm in where you live, I'd take that.  I live in Connecticut, and like typical New England weather, it's very cold one day then warm, then snowing, then raining, etc. etc.  It just seems to change as quick as they can predict it.  I love the variety of it all, but as I get older, I seem to wish the winter was just a little shorter.  It's not the weather that bothers me as much as the fact that there just seems to be so many gray days.  I need my sunshine!  Soon enough it will start getting warmer and brighter and I'll be much happier.  The days are getting longer already.  I'm coaching basketball for my youngest son, so that's been fun and keeping busy.
 
Give me an update when you can.  I hope all is still going well.
Deb McG 
UC - 20+ years
6 MP
Asacol
Prednisone (UGH)
Canasa
Folic Acid/Calcium/Magnesium


HIT4NOW
Regular Member


Date Joined Jul 2007
Total Posts : 160
   Posted 2/7/2008 11:19 AM (GMT -7)   
Deb!!!!!

There you are!!!!! Despite the stressful end to your year I am glad to hear you are doing okay and especially that you are tapering off the Pred! (Ugh, again, I cannot believe how long you've been on it!!!) I take it you have not had any flaring or UC episodes in awhile though?
I am still flare-free (knock on wood) and have now been on the 6-MP for 6 mos.! Time flies! My dr. did increase my daily dosage to 100 mg./day from 50 mg./day in December to maintain remission. So far so good. How many mgs. per day do you take?
The only other change I've noticed is that the weight gain from the Pred did not come off like it did before. When I stopped the Pred last time, though it took a few months, all the added weight disappeared. This time, NONE of it came off - which is a real bummer. I don't know if that has anything to do with the 6-MP? Because that is the only real difference this time. :0(

Anyway, I am so glad you checked in - please keep me posted whenever you get a chance!!

Stacey

Deb McG
Regular Member


Date Joined May 2007
Total Posts : 33
   Posted 3/27/2008 5:10 AM (GMT -7)   
Stacey,

Today is my last day on Prednisone!! So far so good. I've had a couple of mini episodes, but I've been able to treat them with Canasa and Coritiform. My Dr. said to use those instead of increasing the Pred to treat the mini-flares. I'm on 100mg for the 6MP, which he was hoping to be able to adjust once off the Pred. My liver enzymes continue to be elevated so he's hoping we can get the 6MP adjusted and the enzymes will fix themselves.

I'm hoping my extra weight will drop off quickly and hopefully without a huge amount of effort. But being on it for so long I know it's going to take some time. Like I always say, I didn't gain it in a day, I'm probably not going to lose it in a day.

Our weather is getting nicer (finally) and I've been outside walking and working in my gardens. My husband and I joined a local gym so hopefully the exersize will get me in better shape.

I'll keep you posted and you do the same. I'm so glad to hear you're continuing to do well. Hooray for you!!
Deb
UC - 20+ years
6 MP
Asacol
Prednisone (UGH)
Canasa
Folic Acid/Calcium/Magnesium


Deb McG
Regular Member


Date Joined May 2007
Total Posts : 33
   Posted 5/29/2008 5:52 PM (GMT -7)   
Hey Stacey,

Just wanted to see if you had a chance to reply. So far I'm still holding my own. I'm still on the asacol, canasa, and 6 MP. Only problem I seem to be having lately is very achy joints, like arthritis. I'm going to give it a little bit longer and then I'll have to call the doctor. It's just one more little pain to constantly remind me that I'll never be 100%.

Hope all is continuing to go well for you. Give me an update when you can.

Deb
UC - 20+ years
6 MP
Asacol
Prednisone (UGH)
Canasa
Folic Acid/Calcium/Magnesium

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