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breastfeeding and Rheumatoid Arthritis

Breastfeeding & Rheumatoid Arthritis

By Amalah

Amalah,

First of all, I love your advice column – and so does my husband! You were the one who convinced us BOTH that cloth diapers were not actually so scary. And pretty much whenever we have an issue we are trying to figure out my husband asks “what does Alphamom have to say about it?” So we’re both hoping you’ll have something to say about this.

I have rheumatoid arthritis (RA), which is an autoimmune disease that causes extreme joint pain and fatigue. RA has made my path to motherhood a rocky one. I had to stop taking all the medications that were controlling the disease for six months before it was even safe to try to conceive. Then we had to “try” while I was also dealing with totally untreated RA (Every joint in my body hurts! Yay! Let’s get busy!) I was lucky enough to experience some remission during my second trimester, but during my third (which we already know is SO COMFORTABLE) I had major joint pain in my knees, hips, and hands. But it was all totally worth it because now we have a beautiful baby boy who is six weeks old.

Six weeks looks like it is also going to be about the end of my birth-induced remission, because that familiar joint pain is starting to return to my toes, fingers, and wrists. I know that eventually (soon?) I’m going to reach a point where all the wrist braces and Epsom salt soaks in the world are not going to be enough, and I won’t physically be able to care for my baby without medicine – medicine that is, unfortunately, not compatible with breastfeeding.

I am extremely grateful that my son and I have already had six very successful (and wonderful) weeks of breastfeeding. I am really, really hoping that we will be able to manage a few more, but I’ve known all along that we would eventually reach a point where it would be better for both of us to stop. I’ve been preparing by pumping and freezing as much extra milk as possible so that when the time comes I will know that I have done everything in my power to provide the maximum amount of breast milk to my son.

But what I find I’m not prepared for is the emotional impact this transition is going to have on me. The other day we did a couple of bottle feelings so that daddy could participate (and, let’s not lie, so that mommy could have a cocktail) and I was surprised to find that I actually missed nursing him and was anxious to get him back on the boob – not only for him but also for ME. If I had such a strong reaction to skipping a couple of feedings I can’t imagine how I will manage when I have to stop all together. I know that eventually my pain will progress to the point where it is the right decision, but I’m just not ready!! (And even though I know I’m doing everything I can and formula is fine and blah blah blah but I must admit to a little bit of mama guilt over having to stop before either of us are actually ready).

Any advice on how to deal with this? Or maybe you (or your commenters) might have some parenting tips that would make it easier to manage baby care with chronic pain so I can put off the inevitable just a little bit longer?

~RA Mama~

First all, and I hope you know this, but you are a Grade A Rockstar Badass, m’lady.

Second of all, it’s hard…nay, downright impossible to define being “ready” to wean. Some women absolutely have a set timeline in their head (I will breastfeed for X number of months/years) and manage to make to that goal and remain completely, utterly fine with saying “all done” and stopping. A LOT of us, though, have a squishier time with it. I always wanted to nurse until a year. I only managed to last that long with my third baby, who I then planned to wean this month (thanks to travel, crappy supply, his growing disinterest)…only to freak the EFF OUT once push came to shove because *I* wasn’t ready. (In other words: I came home from the trip, woke him up from a nap and shoved my boobs at him. So we are still nursing.)

So I completely, totally feel you. You can logic the whole thing out in your head — formula is fine, my health is just as important, happy mama makes a happy baby, etc. — and still basically feel like crap about it. About the unfairness of it. Especially if you feel like it’s your body that is somehow “letting you down.” (Either for a chronic condition, supply/growth issues or some other crappy medical issue that precludes breastfeeding.) Even though your body just got done doing something mind-blowingly amazing by conceiving, carrying and birthing a human being. It still doesn’t feel like “enough” if there’s still something you were hoping it would be able to do postpartum. (And if there’s anything women seem to be especially great at, it’s not accepting our bodies and/or their limitations without turning it into a degree of “failure.”)

This isn’t really advice, obviously. Just more of a nice back rub while I nod and sympathize because yeah. What you’re going through sucks and what you’re feeling is NORMAL. So normal that even those of us who aren’t in your exact situation can still probably find something in our own breastfeeding adventures that feels (at least emotionally) similar.

The best advice I can give is to take nursing one day at a time. When I was nursing Noah and things were a disaster, I set very tiny mental milestones for myself. I will nurse him tomorrow. I will nurse him until the end of this week. I will make it to four weeks. Then six. This might not be possible for you due to the unpredictability of your flare-ups, but it might help to set super-short, possibly achievable goals for yourself rather than looking longingly and wistfully forward at six months or a year or other possibly not-doable lengths of time.

Try as hard as you can to not view every day of nursing as potentially “one of the last,” but as a major, awesome accomplishment. Don’t let the inevitable weaning dominate your thoughts and keep you from enjoying the days you have. Because weaning will happen when it has to happen. Weaning will ALWAYS happen when it has to happen, for every mom and every baby, be it two weeks or two years. And it can be hard and emotionally/hormonally challenging at either of those points, so be kind to your body AND your brain. It’s okay to stop. It’s okay to be sad.

As for continuing to nurse while managing RA symptoms, well, jeez, there’s a pathetic dearth of solid information out there, as I’m sure you’ve already researched. Everything I found basically says the same basic thing: That there’s a pathetic dearth of solid information. I found a first-person account of a mom who nursed for four-and-a-half months, albeit with a lot of pain. The National Rheumatoid Arthritis Society in the U.K seems to have the most thorough briefing on breastfeeding with RA that I could find. (Though note it hasn’t been reviewed or updated since 2009, however I’m not seeing evidence of any major breakthroughs or studies on RA meds and breastmilk since then either.) And now I’m thoroughly stepping too close to the “do not ask ME, ask your doctor” zone, since beyond a few weeks post-C-section doped up on breastfeeding-safe Percocet and Ibuprofen, I’ve just never had to deal with anything like what you’re going through.

If you have to stop breastfeeding, you know it’s okay to stop breastfeeding. There may not be a magic breastmilk-safe bullet for your physical pain; there may also not be one for the emotional sadness you feel when you stop nursing. Besides, probably, the passing of time and the realization that there is SO. MUCH. MORE. to motherhood than nursing. Including feeling good and healthy enough to chase your toddler around and pick him up for hugs and push him on the swings and take him to the zoo and tickle fights and pillow fights and dancing in the kitchen and on and on it goes.

You’ll be able to do ALL OF THOSE THINGS when you’re taking care of yourself and taking your necessary meds. And once again, your superhero cape is looking quite impressive, Mama.

Photo source: Hemera/ Thinkstock

Amalah
About the Author

Amy Corbett Storch

Amalah

Amalah is a pseudonym of Amy Corbett Storch. She is the author of the Advice Smackdown and Bounce Back. You can follow Amy’s daily mothering adventures at Ama...

Amalah is a pseudonym of Amy Corbett Storch. She is the author of the Advice Smackdown and Bounce Back. You can follow Amy’s daily mothering adventures at Amalah. Also, it’s pronounced AIM-ah-lah.

If there is a question you would like answered on the Advice Smackdown, please submit it to [email protected].

Amy also documented her second pregnancy (with Ezra) in our wildly popular Weekly Pregnancy Calendar, Zero to Forty.

Amy is mother to rising first-grader Noah, preschooler Ezra, and toddler Ike.

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Kim
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Kim

Seconding the Rockstar part – you are a great mama, and both you and your little one are going to be just fine. You got the colostrum down him, he’s had a great start. And really? Line a bunch of kids up, heck line a bunch of non-hungry babies up, and no one could tell you which ones were breastfed, which ones coslept and who cried it out. These decisions seem so huge (and they are a big deal) but kids still grow up. A happy, healthy mama will make far more of a difference than breastmilk will. Best of… Read more »

AmyRenee
Guest
AmyRenee

I would highly, highly encourage you to call the Infant Risk center with the name of your medication and discuss it with them. Dr. Thomas Hale runs the program from Texas Tech and he has researched hundreds of medications and whether they enter into breastmilk and at what levels. A lot of medications say “not recommended for use during pregnancy or breastfeeding” simply because they haven’t been studied by the manufacturers, not because there is a known risk. The website is http://www.infantrisk.com and the phone number is 806-352-2519. I have called them with both of my kids at the recommendation… Read more »

Debra
Guest
Debra

I second the recommendation for contacting Dr. Hale’s website. I’ve known quite a few women who were helped.

Meredith
Guest
Meredith

Yes, I have RA and breastfed while on Enbrel at the recommendation of my Rheumatologist based on Dr. Hale’s research. You should definitely discuss breastfeeding and RA with multiple RA docs.

Kelly
Guest
Kelly

I just want to let you know that your not alone. Things will work out and we as moms are allowed to feel good, healthy, and strong. Here is how I know… I have Ankylosing Spondylitis which is a form of some pretty nasty arthritis. I have had numerous back surgeries, multiple doctors and of course medications. I am also the mother of two beautiful girls. My oldest is 2 I suffered a very long literally back breaking limping along pregnancy and would do it all again to have her smiling face in my life, even the days I want… Read more »

Skye
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Skye

“I thought I was being selfish choosing myself over my baby. I am not. I am choosing to be an active mommy, to chase my girls around the house, to be able to bend down and blow raspberries on her belly. I chose life. I am happy, my toddler is a pain but I can chase her down the street when she runs from me, my baby is in my arms and she sees a smile on her mummy’s face. I have arthritis but my girls don’t have to deal with it too. I hope this helps. ” made me… Read more »

Jimmie
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Jimmie

I just wanted to tell you you are not alone! I could have written this exact same post a year ago. I was diagnosed with RA in April 2010. Started trying to conceive right away, at the advice of my rheumatologist, who basically told me to ‘shit or get off the pot’ if I wanted to have kids, lol. Pregnant in July 2010, and was fortunate enough to experience remission almost immediately. My beautiful daughter was born March 2011, and my postpartum remission lasted until 8 weeks pp, when I suddenly had trouble lifting my baby out of her crib… Read more »

Cara
Guest
Cara

I would urge you to get a second opinion on meds. I also have RA, though it sounds like mine is a lot more moderate, and there were meds I could safely take while breastfeeding (and even the first two trimesters of pregnancy) to help with the inflammation. It’s not the good stuff for sure, but it might be enough to take the edge off and nurse a little longer, of you want. I’ve been lucky and the hormone shift seems to have pushed me even further down the scale to mild, so Aleve has been enough to get me… Read more »

Steph
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Steph

Having been in almost this exact situation last year due to a very similar reason (lupus arthritis, but same pain pattern), I totally understand. I limped around at night and sometimes had to have my husband pick up my daughter from the crib for her night feedings when my hand joints were too painful, because I was afraid of dropping her. I was able to do a couple of short prednisone courses (safe during bfeeding) which helped get me through a few rough patches, but I’m guessing you’ll have to be on something stronger and contraindicated (methotrexate, etc). If it… Read more »

Brooke
Guest
Brooke

Although it is true that there is a lot of misinformation about medication and breastfeeding, (most) drugs to really treat RA are absolutely not compatible with breastfeeding. It’s worth talking to your doctor for sure, but there may not be any good options. Our daughter was older and still nursing when my wife was diagnosed with RA. Having to wean her was very hard emotionally. Adjusting to the reality that more children are no longer an option was also hard. I have no advice, but I’m sorry to hear you are going through this. Nursing is really a wonderful and… Read more »

IrishCream
Guest
IrishCream

No advice on RA or earlier weaning, but I wanted to say how impressed I am that you’ve been managing to pump and build up any kind of supply in the freezer! Those first six weeks are exhausting under the best circumstances, and pumping on top of all that…way to go, mama. I’ll also reiterate what an earlier commenter said: time has a marvelous way of putting these struggles into perspective. It’s easier to look back and say, “hey, I didn’t do so badly after all,” when your teeny little baby has turned into a healthy, happy big kid, because… Read more »

annemarie
Guest

I’m a doula in Canada and one of my required readings included a section on RA and breastfeeding, which I read carefully because I had a client with RA. Dr Jack Newman is an expert and breastfeeding activist, and in his section on RA, he says that steroids and NSAIDs are definitely safe; his opinion is that gold and hydrochloroquine are safe (although the situation should be monitored), and that etanercept and infliximab have very large proteins that don’t get into breastmilk, but mothers are told they need to wean to take them. Here’s his website: http://www.breastfeedinginc.ca/index.php Definitely do some more… Read more »

Alicia
Guest
Alicia

Another mom in the same situation, letting you know it’ll be okay. DD was 6 months old when I was diagnosed with Multiple Sclerosis and I had to stop exclusive breast feeding immediately. At the time the (horrible, life-altering) diagnosis didn’t bother me. Having to stop breast feeding when it was going so well and I planned to go a year totally devastated me. And you know what? You can get used to anything. It’ll take a few sucky days and then it will be your new normal. And your boy will be more than fine. My daughter was too.… Read more »

Sarah
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Sarah

Hi, I have psoriatic arthritis (arthritis with skin probs). I had major problems with breastfeeding after I had my daughter in Feb, 2011. I went to the specialists of specialists in Vancouver. Finally I had to give up and go back on meds. My docs basically said that it was better to go back on my meds and be fit to take care if both myself and my daughter than be off them and basically a wreck. Inflammation will damage your joints. Think of it as you might be weaning now but being at your best, you will be able… Read more »

claire
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claire

No advice, but just wanting to say a massive ‘you rock.and are awesome’ to the op and commenters here. You’re all amazing!

Irene
Guest
Irene

Just adding another medication recommendation: I have psoriatic arthritis (presents very similar to RA), and I was able to continue my medication throughout pregnancy and breastfeeding – my daughter just turned 1. I’m on sulfasalazine/salazopyrin, with NSAIDs and paracetamol/acetaminophen as needed. I had my medication checked by more than 10 different medical professionals, and all agreed that the existing literature for this combination shows little or no risk during breastfeeding. I still have a lot of pain and stiffness, but it is definitely worth asking what your other medication options are. Good luck, and congratulations for making it this far!

Sara
Guest
Sara

I second Claire’s comment. I am in awe of all of you – your babies will remember your giant hearts long after you’ve stopped nursing.

Laura
Guest
Laura

RA Mama, you are exactly who formula was designed for. You deserve so, so much credit for going through so much to conceive your son and get him off to a great start. He needs you as healthy as possible much more than he needs you to beat yourself up about breastfeeding for a sufficient length of time. (And the comment to ask a doctor is well-meaning but I think a bit off — you do not want to put a baby on any quantity of a drug that impairs immune systems and damages rapidly-dividing cells. There’s no way that’s… Read more »

Laura
Guest
Laura

Caveat: I’m not slamming Irene’s comment with my consult a doctor comment, I’m just guessing that you are on methotrexate and/or a biologic, which I know more about than the perhaps milder drugs she mentioned.

Celeste
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Celeste

I’m 43 & was diagnosed with RA at 22, by my early 30s I was on heavy duty meds — & went off them to have my son, then my rheumatologist said that there was some recent research (this was 2005) that reccomended eliminating gluten to lessen inflammation.  I was sceptical (to say the least ), but went gluten free – and it worked?!  I can have gluten occasionally now, but if my hands & knees start to ache I look at my week and usually see I’ve had too many sandwiches or too much pasta.  When I was nursing… Read more »

Katie
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Katie

I agree with all the comments! You moms are awesome! While on my own breastfeeding journey, I found this article and was somewhat comforted: http://www.theatlantic.com/magazine/archive/2009/04/the-case-against-breast-feeding/307311/

While breastfeeding is incredible, we put so much pressure on ourselves to be “perfect” moms that we are setting ourselves up for failure. I’m not trying to ignite a breastfeeding vs. no breastfeeding debate. There is no doubt that breastfeeding is beneficial. I’m just hoping to pass along an article that helped ease my own mommy guilt.

Lisa
Guest
Lisa

I don’t have experience with RA so I don’t have any advice. But as a fellow new mom (my daughter is 3 months old) I want to reiterate how awesome you are. I recently went back to work and I was in tears so many times in the weeks leading up to the transition. I felt like I’d never be able to handle it and that I would spend my days missing my daughter horribly and being miserable. Every time I talked about it with my husband had me sobbing. Then the time came and I had to suck it… Read more »

Suzy Q
Guest
Suzy Q

Such awesome, wonderful moms on this thread! You are ALL rockstars and your babies are lucky to have you.

Isabel Kallman
Admin

Yes, EXACTLY! Thank you all for the wonderfully supportive, intelligent and informed comments. I am in awe.

Shannon
Guest

I don’t have too much more to add to the chorus of awesome here (you are a SUPERSTAR, as are all the other commenters), but I did want to second the recommendation for Dr. Hale’s website. I had to do 5 weeks of an intensive anti-cancer treatment starting when my daughter was 3 weeks old and there was no research on breastfeeding and the drug I was on, except one case study Dr. Hale did. I emailed him about it, and he actually emailed me back himself, he is that awesome. One of the crappiest things about the kind of… Read more »

AmyRenee
Guest
AmyRenee

A logistal suggestion: if you feel it’s only a matter of time before you have to start formula feeding, try swapping out one nursing session a day for you pumping and your husband giving him a bottle of formula. Maybe the dinnertime nursing session, or first thing in the morning – whatever works for you. That way you can freeze the milk you pump to stretch out the amount of time you can give him breastmilk from the freezer stash, and you have some time to find a formula that agrees with him. Most babies are fine with just a… Read more »

Jamie
Guest

I am so glad to have read this! I have psoriatic athritis and am so thankful for biological medicines. They have made a world of difference in my life in terms of pain and movement. After my second child was born, I had the worst flare up of my life and really was dedicated to nursing. At 6 weeks, I was sobbed because my arms literally couldn’t hold my baby. I stopped and began Humira immediately. My baby was OKAY! I had to let go of my own guilt and sadness and realize there is zero shame involved. I’m expecting… Read more »

Autumn
Guest
Autumn

I’m a physical therapist mom who is working on weaning her boob CRAZY one year old.  I’ve served my time and I want to wear normal bras… but I also work with older patients with RA.  Patients who have suffered for so long because they didn’t have the medications that are now available. I know it seems so immense now to wean, especially when breastfeeding is going so well.  But fast-forward 25 years, and then how your fed your amazing baby won’t matter as much.  but being able got get on the floor with your grand baby. . . priceless.… Read more »

~RA Mama~
Guest

Amalah ~ I really don’t know how to thank you for responding to my letter. I’m happy to report that my son just turned 12 weeks old and we’re actually still hanging in there with the breastfeeding – and you’ve helped me realize that I’ve already made it twice as long as I thought I would!!! Unfortunately, my RA symptoms are continuing to get worse and I know the inevitable “end” is near, so your advice is spot on: I really need to stop obsessing about the end and try to enjoy the time we still have together. So that… Read more »

roo
Guest
roo

This is great news! Also– I really should read the whole thread before commenting.

Congratulations!

Bear
Guest
Bear

Your son totally lucked out in the Mama sweepstakes, clearly. Best of luck to the both of you.

roo
Guest
roo

You know, when I started reading I thought I might comment on some shared experience I’ve had with medications that contraindicate breastfeeding.  Then I started reading these other comments (one in particular), and started thinking about my mother, who has some variety of RA that, so far as I know, hasn’t been completely diagnosed. She started having pain when she was 18. I think there have been many strides made in being able to manage long-term pain and the other effects of RA since I was little. Back then, there were many times she had to tell I couldn’t sit… Read more »

MinCO
Guest
MinCO

So my baby is 8 years old now and I was fortunate enough to have him before I was diagnosed with RA. However, I had a difficult pregnancy which resulted in him coming 9 weeks early. We tried and tried to nurse, but he never took, I never let down, who knows. I finally had to stop trying and just pump. I pumped as long as I could then had to stop way before I wanted to. At the time stopping trying to nurse then stopping pumping was really hard and frankly sad. It was not how I wanted to… Read more »

Amber
Guest
Amber

Good for you for getting as far as you’ve gotten!  I have nursing-induced RA (we think it’s hormone related?) although not nearly as painful as yours.   I’m amazed at what you’ve done here already! I just wanted to share my experience… after my second baby, when the pain was so bad I couldn’t hold her, someone made a couple diet suggestions that worked. I won’t go into it all, but upping my Omega 3’s was the important factor.  And I did that most effectively by switching to butter instead of margerine and (biggest deal maker) switching to grass fed… Read more »

Lauren
Guest
Lauren

Let me start by saying, that if weaning is the best thing for your health and the health of your family, please don’t feel any guilt. That said, I have 2 recommendations if you DON’T want to wean. 1) http://toxnet.nlm.nih.gov/cgi-bin/sis/htmlgen?LACT – Lactmed. Please look you your medications, and print your findings and bring them to your Dr. Most rhumatologists have no idea what to do w/pregnant and lactating moms. I have JRA, and my rhumatologist didn’t think it was safe for me to take advil while nursing until I told her that the hospital gave it to me for my… Read more »

Chez
Guest
Chez

I have a similar story. I have ra and had to give up bf at 6 weeks due to pain and meds. I’ve since read many posts and talked to my rheumy and while at the time I had to start methotrexate I will soon be on a biological which my rheumy will support its use during bf. forgive yourself and let go of guilt. It’s helped me knowing that I can have another go. I still comp fed the whole time so bub always had s bottle. Next one will prob have to as well. 🙂

Katherine
Guest
Katherine

I have dealt with very similar circumstances as I have battled with Multiple Sclerosis since I was 15 years old. I had a terrible time with my MS during my first pregnancy, but still delivered a healthy baby girl when I was 18. I was intent on nursing her for at least 6 months, but after 3 weeks, I was forced to go on medication to treat the relapse I had been overtaken by. She went from boob to formula, literally overnight before she was even a month old. When I was 30, I had my second child. My MS actually went in to… Read more »

Rachel
Guest
Rachel

THANK YOU for this thread, everyone.  I have a different perspective that might be helpful to you.  I breastfed my daughter (now 6) for 14 months. I was determined to let her nurse for as long as she wanted, and in the end she weaned herself.  I regret nursing her for that long. The pain I felt while breastfeeding was unlike anything I’d experienced before–worse than childbirth. When she was a newborn, I used to stuff washcloths in my mouth so no one in our apartment complex could hear me scream when she latched on. No one told me that… Read more »

val
Guest
val

I know this post was a while ago, I would like to share for future moms. I have psoriasis and on my third trimester with my first child I started experiencing joint pain in my toes. I breastfed for 16 months. I got pregnant even before I weaned my first baby. This time joint pain spread to fingers, hands, knees, hips, toes, ankles… swollen and unbendible. My second baby was allergic to everything (not anymore) so formula was out of the question. I cried everytime I needed to move. Apperently I have psoriatic arthritis. Finally what made it tolerable and… Read more »

Jessica
Guest
Jessica

I know this was a while ago, but I’m going to chime in, as I’m in a very VERY similar boat, but with some hope.  I, too, have RA and am actually 36 weeks with baby #2, and one of my very first things I was worried about and researched was RA drugs and breastfeeding.  After many long nights on teh interwebz and talking with my rheumatologist, I have found that at the very least, I can go back on Embril shots once a week, after delivery.  I haven’t been able to find enough information to satisfy me about the… Read more »

Melissa
Guest
Melissa

I am in awe. What an amazing feat you accomplished to bring your baby into the world and to breastfeed for as long as you have in the face of such adversity! Most of the comments have focused on the pain, and I think most of the guilt comes from feeling like you should just be tougher for your baby. But,  I hope you will also consider something no one has mentioned: that leaving RA utreated allows the progression of the life-threatening aspects, heart disease and interstitial lung disease. I’m sure your baby would choose having his mom around for… Read more »

Jessica
Guest
Jessica

I was just diagnosed with RA – I was suddenly unable to make a fist before I even left the hospital with my second baby and was told it was just tendonitis. By the time my daughter was 12 weeks old it spread from my fingers, to my wrists and I now wake up in the middle of the night feeling like someone took a baseball bat to my shoulders. It is beginning to spread to my knees and hips. I have two weeks until my next appointment and am on no meds other than NSAIDs, Sam-E & Omega 3s… Read more »