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Mommies with experience with breastfeeding and prednisone.

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mjw82704
Regular Member
Joined : Dec 2006
Posts : 267
Posted 1/10/2009 1:08 PM (GMT -8)
What I have come up with for my little guy with regard to the Asocal. I lowered my med dose to 3200mg instead of 4800mg (not doctor recommend) 3200mg is safe according to Dr. Hale's Medications and Mothers Milk. I will talk to my GI on Monday to see what can be done. I will breastfeed until my dose changes (if it does) then I will mix my breast milk with formula to cut the infant dose in half. In the mean time I found this article that made me feel a lot better because these kids are getting the direct med. The link is below but I cut a paste in the part that was most important to me.

O yeah I scheduled with a kinesilogist. What the heck nothing else is working right?

After researching I feel a lot better about breastfeeding and my meds.

http://www.revolutionhealth.com/conditions/arthritis/juvenile-arthritis/medications/medications?section=section_10


What To Think about

Annual flu shots are recommended for children who are on long-term aspirin therapy. Children on long-term aspirin therapy who get chickenpox or influenza (flu) are at risk for getting Reye's syndrome. Although there is a risk, Reye's syndrome is very rare. Very few cases of Reye's syndrome have been reported in children with chronic arthritis who were being treated with aspirin. If your child has been exposed to chickenpox or flu, talk to the doctor about giving your child acetaminophen to control pain and relieve fever until the incubation period, or the illness itself, has passed.

Combination therapy—using methotrexate with sulfasalazine, hydroxychloroquine, or etanercept—has been used on a limited basis to treat JRA. Most medical experience with combination therapy is with adults; only children with severe JRA that has not improved with methotrexate or sulfasalazine are considered for combination treatment.

It is impossible to predict whether a child will improve with a certain medication. Several different medications may be tried before one is found that controls symptoms and doesn't cause side effects. It can also take weeks to months for a medication to show effect, and symptoms may continue during that time.
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Joma
Regular Member
Joined : Nov 2008
Posts : 223
Posted 1/10/2009 7:35 PM (GMT -8)
mjw

Thanks for sharing. Like you, I am the type of person who likes to read all the reasearch. jo
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*Jen*
Veteran Member
Joined : Jul 2005
Posts : 612
Posted 1/12/2009 10:05 PM (GMT -8)
Hi MJW, thanks so much for the links. I found the info below on that forum answered by Dr. Hale and he seems to be contradicting things slightly as he states that infants don't typically get Reyes syndrome and the amount of meselemine in mother's milk shouldn't be enough to pose a risk. I am still unsure what I should be doing as I MUST bfed AND take my meds...ugh... I have reduced slightly to 10 pills(down from 12) a day, but am still over his suggested limit. Still causing me some concerns...

Reye's syndrome and its relationship to aspirin is somewhat enigmatic. We do know that aspirin use during a fever, flu, or varicella viral syndrome may dramatically increase the risk of Reye's syndrome. Aspirin is certainly metabolized to salicylic acid, but to be honest with you, we don't know for sure if salicylic acid products (Asacol, Pepto Bismol, etc) are associated with Reye's Syndrome. I ran across a good review of this issue and there still remains some confusion over this relationship (see http://fr.cos.com/cgi-bin/getRec?id=20030417a147).

But to answer your question, exactly, I do not think the use of salicylates during the first three weeks postnatally pose any greater risk of Reye's than at any other time. But if the infant is suffering from a viral infection, then I would be more uncomfortable, even with the salicylcates. Reye's syndrome virtually ALWAYS requires a viral infection at the same time as exposure to aspirin (or perhaps non-acetylated salicylates). If there is no viral infection, then I think the risk of salicylates is minimal.

Interestingly, if you look at the incidence of Reye's syndrome, virtually all of the cases occured in older children (10-15 yrs)...not infants. Perhaps infants are less sensitive.

But to be clear. I do not know with certainty that non-acetylated salicylates will cause Reye's syndrome, so I cannot tell you with certainty that their use early postnatally during an RSV season is safe.

Lastly, I've asked several Reye's experts about the dose-response relationship of Reye's and salicylates, and no one seems to know if these infants have to have a direct and clinical oral dose, or if the miniscule levels in milk would even be a risk factor at all. All the cases thus far reported were from DIRECT administration of acetylsalicylic acid and some possibly from salicylic acid products....none from breast milk containing these drugs.

I'm sorry, but this area is confusing. If anyone out there knows a lot about this area...please phone me...as I've asked many to no avail.
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Joma
Regular Member
Joined : Nov 2008
Posts : 223
Posted 1/13/2009 7:37 AM (GMT -8)
Jen

Thanks for posting the info. I had not found that particular thread on the Hale website. One thing I was thinking for myself and my little one is that I would not get the Varicella vaccine done if I was still breastfeeding on the asacol. According to the vaccine schedule it is done at approx 1 year old. I would be happy to be able to bf until one year - I would be happy for any time I could get. I hope it works for us. Actually, I have questions about getting any of the vaccines while I am on the meds I am on (hydrocortisone foam and asacol) and bfing. Steriods do affect the capacity of the immune system to respond as well. I am going to speak to my natureopath about this issue further. I know for sure I am going to refuse the Hep B they want to give at birth and then go from there. As for flu season, well my little one is due TOMORROW ( I think I am going over with him) and so he is going to be born smack in the middle of flu season. I cannot get around how significant the benefits of bfing are so I am going to go ahead and bf despite the questions re. reyes and asacol. What I will do is the following: be at home with him as much as possible for the first months and not let him have too much contact with the wider world and the possible bugs out there, when I take him out cover him with a blanket in his seat for the first few months of his life, ask people who are sick not to visit and have people wash their hands. I cannot remember how old our baby is but taking small precautions while trying not to get CRAZY as I have a tendency to do at times could make you feel better. It sounds like you dont have a choice but to go ahead and bf despite the questions - I do have a choice and I am going to bf anyhow because of the benefits. As one of my midwives has told me throughout my pregnancy when I had to up my meds for a flare "Make your decision and then let it go". I know easier said than done sometimes but you dont want to be so stressed that it does effect you and your babe. I am going to try to take my own advice too. Thank you for posting your finding. If you get anymore please put them on here. jo
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mjw82704
Regular Member
Joined : Dec 2006
Posts : 267
Posted 1/13/2009 9:26 AM (GMT -8)
Jen-
I completely agree with Dr. Hale contradicting himself in that post. I thought the same thing. I went to see my GI yesterday and brought up the information and he seemed to not be concerned at all. He's had lots of breastfeeding mommies on meselamine meds. Also, my co-worker who also had UC said that she breastfeed for 1 year on Colazal which is a lot higher dose than asocal and all is well with her daughter. I think that Joma is correct we have to just make our decisions and let it go. If your doctors said its fine and you did all of the research then that is all that you can do. Your a good mommy.

I also took my little guy to Children's yesterday because it seemed that he was not well and they also had absolutely no concerns about my meds when I mentioned them.

After my meeting with my specialist yesterday he suggested the Remicaid before I even had a chance to bring it up. I pray that it works for me. I am at 40 mg of prednisone with little to no improvement. I am also taking the asocal. They gave me the TB test so that I could get started on Remicaid right away. I talked to him about surgery and he was not so keen on that yet. I think he wants to see how I do on the Remicaid. I pray that it gives me some relief.
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RobinByrd
Veteran Member
Joined : Dec 2008
Posts : 511
Posted 1/13/2009 12:10 PM (GMT -8)
I hope the Remicade works for you!!! I had my 5th infusion yesterday (4weeks after my 4th) and I'm not all the much better. Darn it. I was exactly where you are though...40mg of the roids and double the Asacol. The Remicade does wonders for many people, and so hope you are one of them! My nurse told me there are three of us seen by their clinic just isn't responding to medications. I have pancolitis and was told that the below the waist medications do not stretch far enough to cover the diseased areas...wonderful...I wasn't exactly thrilled at the thought of using those forms of medication anyway. So, that's why we've never explored that avenue. But, oh I am so hopeful that you like the Remicade! I always feel great the day of the infusion and sometimes the day after. I feel 'normal' right after the infusion...I have energy...little bloating if any...and it's like I'm not sick at all for a short time. I was giddy yesterday and couldn't sleep the night before my infusion...it's like Christmas. : )

Anyway, I agree that you do what you need to do for yourself and your baby. I trust my doctor and nurse and they said I was safe with my medications, so I never gave it a second thought. However, I did do lots of research regarding the prednisone and pregnancy. My next pregnancy is going to be with an ileo...so that will be fun to research. : ) I also told my husband we'll have to find some fun nighties and teddies to cover the ileo...because how sexy is that?! I really do want another baby...and we all know how we get to that point, so I want to be sexy for my husband...I can only imagine what it'll be like for him with a wife with a lovely ileostomy!!! That will be another board when we get to that point. : )

So, not only are you women supports for me through my UC issues, but as a mother and a wife. : ) I only hope you feel you can lean on me as a support in those areas as well.

: ) Robin
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ebmunchkin
New Member
Joined : Feb 2009
Posts : 1
Posted 2/2/2009 4:16 PM (GMT -8)
I am 26 years old and have a 2month old. I have been on Prednisone for autoimmune hepatitis of the liver for years. I tapered down from 20mg to 5mg during my pregnancy and she is fine. Recently I had a flare up and they have asked me to get on 30mg of Prednisone. The doctor and the pediatrician do not know the harm it can cause while breastfeeing and have asked me to stop immediately. I tried and my breasts are so engorged! Cabbage isn't helping. All I can do is read online and it SEEMS that 30mg should be safe to breastfeed. I am scared though because I do not want any developmental or stunt growth in our newborn. Any suggestions or help in the Houston area? These doctors are idiots!
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Joma
Regular Member
Joined : Nov 2008
Posts : 223
Posted 2/3/2009 5:33 AM (GMT -8)
Call the Mothrisk Program. The phone number is 416-813-6780. It is a counselling/research program run by the Hospital for Sick Children in Toronto, Canada. They can reveiw all the research and advise you as to whether a drug/med is safe for use in pregnancy/breastfeeding. Here is the link www.motherisk.org/women/index.jsp.
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RobinByrd
Veteran Member
Joined : Dec 2008
Posts : 511
Posted 2/3/2009 7:06 AM (GMT -8)
ebmunchkin...

I was on 40mg throughout my pregnancy and nursing...my son is 13 months tomorrow and AWESOME! He's smart, funny, silly, curious...everything a toddler should be and more! I hate to tell you to ignore your doctors...but do. : ) That's silly they asked you to quit nursing cold turkey b/c they didn't know the side effects...don't you think it's their job to do the research? Anyway, you and your little baby will be fine. : ) My high risk doctor, GI and OB all KNEW we would be okay.
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Schotz217
New Member
Joined : Jan 2009
Posts : 13
Posted 2/3/2009 12:03 PM (GMT -8)
Hi Everyone

I'm not on Prednisone anymore (I was on 100mg for about 2 months in July!!), but I would love to chat with some of you about pregnancy and UC. My husband and I have been trying to get pregnant for about 5 months. I just ovulated today so cross your fingers!! I'm on 3 pills of Lialda and 2 Canasas a day, and am finally starting to come out of this current flare, or at least I think!

My questions are mostly about breast feeding because I've been told that the drugs are safe while pregnant. From what I've heard so far, I'm supposed to make the decision to breast feed or not based on if it will harm my baby more to stay on the drugs or harm me more to go off.. Not really sure what that means!! Is anyone breastfeeding on Mesalamine? Also, did anyone go off of their meds to breastfeed if they were in remission?

I'm also starting to get concerned about the day to day tasks of taking care of a baby when you are in a flare. Luckily I will be a stay at home mom, so I won't have the stress of work but I still worry that my UC will affect the kind of mom I'm hoping to be.

Would love to hear your stories.
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Joma
Regular Member
Joined : Nov 2008
Posts : 223
Posted 2/3/2009 7:26 PM (GMT -8)
schotz217

Welcome. I just had my son, he is now 2 weeks and 2 days old! It took me 5 months to get pregnant with him - basically I got pregnant the first month I was in remission, last April. I think being flared does make it more difficult to get pregnant so it sounds like good news to me that you are going into remission. Are you chartig your cycles? Sounds like you may be.

Anyhow, I was on maintence meselamine (asacol) as well as increased doses in the form of enemas and finally cortifoam when I started to flare in my second tri. I spent a lot of time researching breastfeeding and meds and in the end determined that I was going to go ahead and bf. I spoke with two GI docs, my obgyn, and several pediatricians, many anecdotal stories from other women as well as referring to the Hale research and calling the Motherisk program. All these sources supported my decision although there is not a great deal of research on mesalamine and bfing - Hale is probably the most cautious about bfing and mesalamine. In my mind the benefits of bfing for my baby cant be ignored.

However, by the time Dusty was born I was in solid remission. Generally my pattern is to flare in the fall into the winter and then not again until the following fall so I have decided to see if I can go off my mesalamine for a period of time. I am sure my GI docs would be having a fit if they knew - I suppose I will tell them at some point. Some of the reasons I have made this decision are as follows 1) I have had UC for goig on 10 years so I am pretty clear on my own personal patterns and I am well aware of the small signs and symptoms my body exhibits when it starts to flare 2) I go into my flares slowly so I should have fair warning that I may need to go back on my meds (although this my not hold true when I am not on maintenance meds so I am taking that risk). Anyhow, that being said, this has been my personal choice and it may be too risky for others to do - I may find that it was too risky for me too! Also, based on all my research etc. I know that if I need to go back onto my meds I will try to continue to bf as well.

jo
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svetla
Regular Member
Joined : Jan 2009
Posts : 45
Posted 2/3/2009 9:48 PM (GMT -8)
hi everyone,

i am not pregnant or bf right now but have been through all that and know exactly how you feel. i just wanted to share my experience with that - a baby, flare and bf.

during my pregnancy my flares subsided - as i thought ,due to the increased cortisone levels in the body as a result of the pregnancy itself. and what helped besides that as a simple mixture of vinegar and water probably 2 tb sp vinegar +150 ml water. it is safe during pregnancy.

when my daughter was 2 months old a terrible flare started - the moment i woke up at night i had to rush to the bathroom while she was crying...thanks God my mom lived with us then and she used to get up to hold her... i can only imagine what she herself has been through.., what really helped me then was cortisone enemas, ...if you haven't so far, give them a try.

i would also suggest homeopathy - there are some meds that are used in cases of UC, back then i didn't know about them ...they are safe and if you find the right one...it would be beneficial forboth you and your babies. i recently found www.drlockie.com, it is a god website, and i think useful.

i know we are all worried about our babies more than about ourselves...

take care and good luck,
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